research paper using mixed methods

• Research article
• Open access
• Published: 24 September 2018

A mixed methods case study exploring the impact of membership of a multi-activity, multicentre community group on social wellbeing of older adults

• Gabrielle Lindsay-Smith   ORCID: orcid.org/0000-0003-3864-1412 1 ,
• Grant O’Sullivan 1 ,
• Rochelle Eime 1 , 2 ,
• Jack Harvey 1 , 2 &
• Jannique G. Z. van Uffelen 1 , 3  

BMC Geriatrics volume  18 , Article number:  226 ( 2018 ) Cite this article

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Social wellbeing factors such as loneliness and social support have a major impact on the health of older adults and can contribute to physical and mental wellbeing. However, with increasing age, social contacts and social support typically decrease and levels of loneliness increase. Group social engagement appears to have additional benefits for the health of older adults compared to socialising individually with friends and family, but further research is required to confirm whether group activities can be beneficial for the social wellbeing of older adults.

This one-year longitudinal mixed methods study investigated the effect of joining a community group, offering a range of social and physical activities, on social wellbeing of adults with a mean age of 70. The study combined a quantitative survey assessing loneliness and social support ( n  = 28; three time-points, analysed using linear mixed models) and a qualitative focus group study ( n  = 11, analysed using thematic analysis) of members from Life Activities Clubs Victoria, Australia.

There was a significant reduction in loneliness ( p  = 0.023) and a trend toward an increase in social support ( p  = 0.056) in the first year after joining. The focus group confirmed these observations and suggested that social support may take longer than 1 year to develop. Focus groups also identified that group membership provided important opportunities for developing new and diverse social connections through shared interest and experience. These connections were key in improving the social wellbeing of members, especially in their sense of feeling supported or connected and less lonely. Participants agreed that increasing connections was especially beneficial following significant life events such as retirement, moving to a new house or partners becoming unwell.

Conclusions

Becoming a member of a community group offering social and physical activities may improve social wellbeing in older adults, especially following significant life events such as retirement or moving-house, where social network changes. These results indicate that ageing policy and strategies would benefit from encouraging long-term participation in social groups to assist in adapting to changes that occur in later life and optimise healthy ageing.

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Ageing population and the need to age well

Between 2015 and 2050 it is predicted that globally the number of adults over the age of 60 will more than double [ 1 ]. Increasing age is associated with a greater risk of chronic illnesses such as cardio vascular disease and cancer [ 2 ] and reduced functional capacity [ 3 , 4 ]. Consequently, an ageing population will continue to place considerable pressure on the health care systems.

However, it is also important to consider the individuals themselves and self-perceived good health is very important for the individual wellbeing and life-satisfaction of older adults [ 5 ]. The terms “successful ageing” [ 6 ] and “healthy ageing” [ 5 ] have been used to define a broader concept of ageing well, which not only includes factors relating to medically defined health but also wellbeing. Unfortunately, there is no agreed definition for what exactly constitutes healthy or successful ageing, with studies using a range of definitions. A review of 28 quantitative studies found that successful ageing was defined differently in each, with the majority only considering measures of disability or physical functioning. Social and wellbeing factors were included in only a few of the studies [ 7 ].

In contrast, qualitative studies of older adults’ opinions on successful ageing have found that while good physical and mental health and maintaining physical activity levels are agreed to assist successful ageing, being independent or doing something of value, acceptance of ageing, life satisfaction, social connectedness or keeping socially active were of greater importance [ 8 , 9 , 10 ].

In light of these findings, the definition that is most inclusive is “healthy ageing” defined by the World Health Organisation as “the process of developing and maintaining the functional ability (defined as a combination of intrinsic capacity and physical and social environmental characteristics), that enables well-being in older age” (p28) [ 5 ].This definition, and those provided in the research of older adults’ perceptions of successful ageing, highlight social engagement and social support as important factors contributing to successful ageing, in addition to being important social determinants of health [ 11 , 12 ].

Social determinants of health, including loneliness and social support, are important predictors of physical, cognitive and mental health and wellbeing in adults [ 12 ] and older adults [ 13 , 14 , 15 ]. Loneliness is defined as a perception of an inadequacy in the quality or quantity of one’s social relationships [ 16 ]. Social support, has various definitions but generally it relates to social relationships that are reciprocal, accessible and reliable and provide any or a combination of supportive resources (e.g. emotional, information, practical) and can be measured as perceived or received support [ 17 ]. These types of social determinants differ from those related to inequality (health gap social determinants) and are sometimes referred to as ‘social cure’ social determinants [ 11 ]. They will be referred to as ‘social wellbeing’ outcome measures in this study.

Unfortunately, with advancing age, there is often diminishing social support, leading to social isolation and loneliness [ 18 , 19 ]. Large nationally representative studies of adults and older adults reported that social activity predicted maintenance or improvement of life satisfaction as well as physical activity levels [ 20 ], however older adults spent less time in social activity than middle age adults.

Social wellbeing and health

A number of longitudinal studies have found that social isolation for older adults is a significant predictor of mortality and institutionalisation [ 21 , 22 , 23 ]. A meta-analysis by Holt-Lunstadt [ 12 ] reported that social determinants of health, including social integration and social support (including loneliness and lack of perceived social support) to be equal to, or a greater risk to mortality as common behavioural risk factors such as smoking, physical inactivity and obesity. Loneliness is independently associated with poor physical and mental health in the general population, and especially in older adults [ 13 , 14 , 15 ]. Adequate perceived social support has also been consistently associated with improved mental and physical health in both general and older adults [ 20 , 24 , 25 , 26 , 27 , 28 , 29 ]. The mechanism suggested for this association is that social support buffers the negative impacts of stressful situations and life events [ 30 ]. The above research demonstrates the benefit of social engagement for older adults; in turn this highlights the importance of strategies that reduce loneliness and improve social support and social connectedness for older adults.

Socialising in groups seems to be especially important for the health and wellbeing of older adults who may be adjusting to significant life events [ 26 , 31 , 32 , 33 ]. This is sometimes referred to as social engagement or social companionship [ 26 , 30 , 31 ]. It seems that the mechanism enabling such health benefits with group participation is through strengthening of social identification, which in turn increases social support [ 31 , 34 , 35 ]. Furthermore, involvement in community groups can be a sustainable strategy to reduce loneliness and increase social support in older adults, as they are generally low cost and run by volunteers [ 36 , 37 , 38 , 39 ].

Despite the demonstrated importance of social factors for successful ageing and the established risk associated with reduced social engagement as people age, few in-depth studies have longitudinally investigated the impact of community groups on social wellbeing. For example, a non-significant increase in social support and reduction in depression was found in a year-long randomised controlled trial conducted in senior centres in Norway with lonely older adults in poor physical and mental health [ 37 ]. Some qualitative studies have reported that community groups and senior centres can contribute to fun and socialisation for older adults, however social wellbeing was not the primary focus of the studies [ 38 , 40 , 41 ]. Given that social wellbeing is a broad and important area for the health and quality of life in older adults, an in-depth study is warranted to understand how it can be maximised in older adults. This mixed methods case study of an existing community aims to: i) examine whether loneliness and social support of new members of Life Activities Clubs (LACs) changes in the year after joining and ii) conduct an in-depth exploration of how social wellbeing changes in new and longer-term members of LACs.

A mixed methods study was chosen as the design for this research to enable an in-depth exploration of how loneliness and social support may change as a result of joining a community group. A case study was conducted using a concurrent mixed-methods design, with a qualitative component giving context to the quantitative results. Where the survey focused on the impact of group membership on social support and loneliness, the focus groups were an open discussion of the benefits in the lived context of LAC membership. The synthesis of the two sections of the study was undertaken at the time of interpretation of the results [ 42 ].

The two parts of our study were as follows:

a longitudinal survey (three time points over 1 year: baseline, 6 and 12 months). This part of the study formed the quantitative results;

a focus group study of members of the same organisation (qualitative).

Ethics approval to conduct this study was obtained from the Victoria University Human Research Ethics Committee (HRE14–071 [survey] and HRE15–291 [focus groups]) All participants provided informed consent to partake in the study prior to undertaking the first survey or focus group.

Setting and participants

Life activities clubs victoria.

Life Activities Clubs Victoria (LACVI) is a large not-for-profit group with 23 independently run Life Activities Clubs (LACs) based in both rural and metropolitan Victoria. It has approximately 4000 members. The organisation was established to assist in providing physical, social and recreational activities as well as education and motivational support to older adults managing significant change in their lives, especially retirement.

Eighteen out of 23 LAC clubs agreed to take part in the survey study. During the sampling period from May 2014 to December 2016, new members from the participating clubs were given information about the study and invited to take part. Invitations took place in the form of flyers distributed with new membership material.

Inclusion/ exclusion criteria

Community-dwelling older adults who self-reported that they could walk at least 100 m and who were new members to LACVI and able to complete a survey in English were eligible to participate. New members were defined as people who had never been members of LACVI or who had not been members in the last 2 years.

To ensure that the cohort of participants were of a similar functional level, people with significant health problems limiting them from being able to walk 100 m were excluded from participating in the study.

Once informed consent was received, the participants were invited to complete a self-report survey in either paper or online format (depending on preference). This first survey comprised the baseline data and the same survey was completed 6 months and 12 months after this initial time point. Participants were sent reminders if they had not completed each survey more than 2 weeks after each was delivered and then again 1 week later.

Focus groups

Two focus groups (FGs) were conducted with new and longer-term members of LACs. The first FG ( n  = 6) consisted of members who undertook physical activity in their LAC (e.g. walking groups, tennis, cycling). The second FG ( n  = 5) consisted of members who took part in activities with a non-physical activity (PA) focus (e.g. book groups, social groups, craft or cultural groups). LACs offer both social and physical activities and it was important to the study to capture both types of groups, but they were kept separate to assist participants in feeling a sense of commonality with other members and improving group dynamic and participation in the discussions [ 43 ]. Of the people who participated in the longitudinal survey study, seven also participated in the FGs.

The FG interviews were facilitated by one researcher (GLS) and notes around non-verbal communication, moments of divergence and convergence amongst group members, and other notable items were taken by a second researcher (GOS). Both researchers wrote additional notes after the focus groups and these were used in the analysis of themes. Focus groups were recorded and later transcribed verbatim by a professional transcriptionist, including identification of each participant speaking. One researcher (GLS) reviewed each transcription to check for any errors and made any required modifications before importing the transcriptions into NVivo for analysis. The transcriber identified each focus group participant so themes for individuals or other age or gender specific trends could be identified.

Dependent variables

• Social support

Social support was assessed using the Duke–UNC Functional Social support questionnaire [ 44 ]. This scale specifically measures participant perceived functional social support in two areas; i) confidant support (5 questions; e.g. chances to talk to others) and ii) affective support (3 questions; e.g. people who care about them). Participants rated each component of support on a 5-item likert scale between ‘much less than I would like’ (1 point) to ‘as much as I would like’ (5 points). The total score used for analysis was the mean of the eight scores (low social support = 1, maximum social support = 5). Construct validity, concurrent validity and discriminant validity are acceptable for confidant and affective support items in the survey in the general population [ 44 ].

Loneliness was measured using the de Jong Gierveld and UCLA-3 item loneliness scales developed for use in many populations including older adults [ 45 ]. The 11-item de Jong Gierveld loneliness scale (DJG loneliness) [ 46 ] is a multi-dimensional measure of loneliness and contains five positively worded and six negatively worded items. The items fall into four subscales; feelings of severe loneliness, feelings connected with specific problem situations, missing companionship, feelings of belongingness. The total score is the sum of the items scores (i.e. 11–55): 11 is low loneliness and 55 is severe loneliness. Self-administered versions of this scale have good internal consistency (> = 0.8) and inter-item homogeneity and person scalability that is as good or better than when conducted as face-to face interviews. The validity and reliability for the scale is adequate [ 47 ]. The UCLA 3-item loneliness scale consists of three questions about how often participants feel they lack companionship, feel left out and feel isolated. The responses are given on a three-point scale ranging from hardly ever (1) to often (3). The final score is the sum of these three items with the range being from lowest loneliness (3) to highest loneliness (9). Reliability of the scale is good, (alpha = 0.72) as are discriminant validity and internal consistency [ 48 ]. The scale is commonly used to measure loneliness with older adults ([ 49 ] – review), [ 50 , 51 ].

Sociodemographic variables

The following sociodemographic characteristics were collected in both the survey and the focus groups: age, sex, highest level of education, main life occupation [ 52 ], current employment, ability to manage on income available, present marital status, country of birth, area of residence [ 53 ]. They are categorised as indicated in Table  2 .

Health variables

The following health variables were collected: Self-rated general health (from SF-12) [ 54 ] and Functional health (ability to walk 100 m- formed part of the inclusion criteria) [ 55 ]. See Table 2 for details about the categories of these variables.

The effects of becoming a member on quantitative outcome variables (i.e. Social support, DJG loneliness and UCLA loneliness) were analysed using linear mixed models (LMM). LMM enabled testing for the presence of intra-subject random effects, or equivalently, correlation of subjects’ measures over time (baseline, 6-months and 12 months). Three correlation structures were examined: independence (no correlation), compound symmetry (constant correlation of each subjects’ measures over the three time points) and autoregressive (correlation diminishing with increase in spacing in time). The best fitting correlation structure was compound symmetry; this is equivalent to a random intercept component for each subject. The LMM incorporated longitudinal trends over time, with adjustment for age as a potential confounder. Statistical analyses were conducted using SPSS for windows (v24).

UCLA loneliness and social support residuals were not normally distributed and these scales were Log10 transformed for statistical analysis.

Analyses were all adjusted for age, group attendance (calculated as average attendance at 6 and 12 months) and employment status at baseline (Full-time, Part-time, not working).

Focus group transcripts were analysed using thematic analysis [ 56 , 57 ], a flexible qualitative methodology that can be used with a variety of epistemologies, approaches and analysis methods [ 56 ]. The transcribed data were analysed using a combination of theoretical and inductive thematic analysis [ 56 ]. It was theorised that membership in a LAC would assist with social factors relating to healthy ageing [ 5 ], possibly through a social identity pathway [ 58 ], although we wanted to explore this. Semantic themes were drawn from these codes in order to conduct a pragmatic evaluation of the LACVI programs [ 56 ]. Analytic rigour in the qualitative analysis was ensured through source and analyst triangulation. Transcriptions were compared to notes taken during the focus groups by the researchers (GOS and GLS). In addition, Initial coding and themes (by GLS) were checked by a second researcher (GOS) and any disagreements regarding coding and themes were discussed prior to finalisation of codes and themes [ 57 ].

Sociodemographic and health characteristics of the 28 participants who completed the survey study are reported in Table  1 . The mean age of the participants was 66.9 and 75% were female. These demographics are representative of the entire LACVI membership. Education levels varied, with 21% being university educated, and the remainder completing high school or technical certificates. Two thirds of participants were not married. Some sociodemographic characteristics changed slightly at 6 and 12 months, mainly employment (18% in paid employment at baseline and 11% at 12-months) and ability to manage on income (36% reporting trouble managing on their income at baseline and 46% at 12 months). Almost 90% of the participants described themselves as being in good-excellent health.

Types of activities

There were a variety of types of activities that participants took part in: physical activities such as walking groups ( n  = 7), table tennis ( n  = 5), dancing class ( n  = 2), exercise class ( n  = 1), bowls ( n  = 2), golf ( n  = 3), cycling groups ( n  = 1) and non-physical leisure activities such as art and literature groups ( n  = 5), craft groups ( n  = 5), entertainment groups ( n  = 12), food/dine out groups ( n  = 18) and other sedentary leisure activities (e.g. mah jong, cards),( n  = 4). A number of people took part in more than one activity.

Frequency of attendance at LACVI and changes in social wellbeing

At six and 12 months, participants indicated how many times in the last month they attended different types of activities at their LAC. Most participants maintained the same frequency of participation over both time points. Only four people participated more frequently at 12 than at 6 months and nine reduced participation levels. The latter group included predominantly those who reduced from more than two times per week at 6 months to 2×/week at 6 months to one to two times per week ( n  = 5) or less than one time per week ( n  = 2) at 12 months. Average weekly club attendance at six and 12 months was included as a covariate in the statistical model.

Outcome measures

Overall, participants reported moderate social support and loneliness levels at baseline (See Table 2 ). Loneliness, as measured by both scales, reduced significantly over time. There was a significant effect of time on the DJG loneliness scores (F (2, 52) = 3.83, p  = 0.028), with Post-Hoc analysis indicating a reduction in DJG loneliness between baseline and 12 months ( p  = 0.008). UCLA loneliness scores (transformed variable) also changed significantly over time (F (2, 52) = 4.08, p  = 0.023). Post hoc tests indicated a reduction in UCLA loneliness between baseline and 6 months ( p  = 0.007). There was a small non-significant increase in social support (F (2, 53) =2.88, p  = 0.065) during the first year of membership (see Table 2 and Figs. 1 and 2 ).

DJG loneliness for all participants over first year of membership at LAC club ( n  = 28).

*Represents significant difference compared to baseline ( p  < 0.01)

UCLA loneliness score for all participants over first year of membership at LAC club ( n  = 28).

*Indicates log values of the variable at 6-months were significantly different from baseline ( p  < 0.01)

In total, 11 participants attended the two focus groups, six people who participated in PA clubs (four women) and five who participated in social clubs (all women). All focus group participants were either retired ( n  = 9) or semi-retired ( n  = 2). The mean age of participants was 67 years (see Table 2 for further details). Most of the participants (82%) had been members of a LAC for less than 2 years and two females in the social group had been members of LAC clubs for 5 and 10 years respectively.

Analysis of the focus group transcripts identified two themes relating to social benefits of group participation; i) Social resources and ii) Social wellbeing (see Fig. 3 ). Group discussion suggested that membership of a LAC provides access to more social resources through greater and diverse social contact and opportunity. It is through this improvement in social resources that social wellbeing may improve.

Themes arising from focus group discussion around the benefits of LAC membership

Social resources

The social resources theme referred to an increase in the availability and variety of social connections that resulted from becoming a member of a LAC. The social nature of the groups enabled an expansion and diversification of members’ social network and improved their sense of social connectedness. There was widespread agreement in both the focus groups that significant life events, especially retirement, illness or death of spouse and moving house changes one’s social resources. Membership of the LAC had benefits especially at these times and these events were often motivators to join such a club. Most participants found that their social resources declined after retirement and even felt that they were grieving for the loss of their work.

“ I just saw work as a collection of, um, colleagues as opposed to friends. I had a few good friends there. Most were simply colleagues or acquaintances …. [interviewer- Mmm.] ..Okay, you’d talk to them every day. You’d chatter in the kitchen, oh, pass banter back and forth when things are busy or quiet, but... Um, in terms of a friendship with those people, like going to their home, getting to know them, doing other things with them, very few. But what I did miss was the interaction with other people. It had simply gone….. But, yeah, look, that, the, yeah, that intervening period was, oh, a couple of months. That was a bit tough…. But in that time the people in LAC and the people in U3A…. And the other dance group just drew me into more things. Got to know more people. So once again, yeah, reasonable group of acquaintances.” (Male, PAFG)

Group members indicated general agreement with these two responses, however one female found she had a greater social life following retirement due to the busy nature of her job.

Within the social resources theme, three subthemes were identified, i) Opportunity for social connectedness, ii) Opportunity for friendships, and iii) Opportunity for social responsibility/leadership . Interestingly, these subthemes were additional to the information gathered in the survey. This emphasises the power of the inductive nature of the qualitative exploration employed in the focus groups to broaden the knowledge in this area.

The most discussed and expanded subtheme in both focus groups was Opportunity for social connectedness , which arose through developing new connections, diversifying social connections, sharing interests and experiences with others and peer learning. Participants in both focus groups stated that being a member of LAC facilitated their socialising and connecting with others to share ideas, skills and to do activities with, which was especially important through times of significant life events. Furthermore, participants in each of the focus groups valued developing diverse connections:

“ Yeah, I think, as I said, I finished up work and I, and I had more time for wa-, walking. So I think a, in meeting, in going to this group which, I saw this group of women but then someone introduced me to them. They were just meeting, just meeting a new different set of people, you know? As I said, my work people and these were just a whole different group of women, mainly women. There’s not many men. [Interviewer: Yes.]….. Although our leader is a man, which is ironic and is about, this man out in front and there’s about 20 women behind him, but, um, so yeah, and people from different walks of life and different nationalities there which I never knew in my work life, so yeah. That’s been great. So from that goes on other things, you know, you might, uh, other activities and, yeah, people for coffee and go to the pictures or something, yeah. That’s great.” (Female, PAFG)

Simply making new connections was the most widely discussed aspect related to the opportunity for social connectedness subtheme, with all participants agreeing that this was an important benefit of participation in LAC groups.

“Well, my experience is very similar to everybody else’s…….: I, I went from having no social life to a social life once I joined a group.” (Female, PAFG)

There was agreement in both focus groups that these initial new connections made at a LAC are strengthened through development of deeper personal connections with others who have similar demographics and who are interested in the same activities. This concurs with the Social Identity Theory [ 58 ] discussed previously.

“and I was walking around the lake in Ballarat, like wandering on my own. I thought, This is ridiculous. I mean, you’ve met all those groups of women coming the opposite way, so I found out what it was all about, so I joined, yeah. So that’s how I got into that.[ Interviewer: Yeah.] Basically sick of walking round the lake on my own. [Interviewer: Yeah, yeah.] So that’s great. It’s very social and they have coffee afterwards which is good.” (female, PAFG)

The subtheme Opportunity for development of friendships describes how, for some people, a number of LAC members have progressed from being just initial social connections to an established friendship. This signifies the strength of the connections that may potentially develop through LAC membership. Some participants from each group mentioned friendships developing, with slightly more discussion of this seen in the social group.

“we all have a good old chat, you know, and, and it’s all about friendship as well.” (female, SocialFG)

The subtheme Opportunity for social responsibility or leadership was mentioned by two people in the active group, however it was not brought up in the social group. This opportunity for leadership is linked with the development of a group identity and desiring to contribute meaningfully to a valued group.

“with our riding group, um, you, a leader for probably two rides a year so you’ve gotta prepare for it, so some of them do reccie rides themselves, so, um, and also every, uh, so that’s something that’s, uh, a responsibility.” (male, PAFG)

Social wellbeing

The social resources described above seem to contribute to a number of social, wellbeing outcomes for participants. The sub themes identified for Social wellbeing were , i) Increased social support, ii) Reduced loneliness, iii) Improved home relationships and iv) Improved social skills.

Increased social support

Social support was measured quantitatively in the survey (no significant change over time for new members) and identified as a benefit of LAC membership during the focus group discussions. However, only one of the members of the active group mentioned social support directly.

‘it’s nice to be able to pick up the phone and share your problem with somebody else, and that’s come about through LAC. ……‘Cos before that it was through, with my family (female, PAFG)

There was some agreement amongst participants of the PA group that they felt this kind of support may develop in time but most of them had been members for less than 2 years.

“[Interviewer: Yeah. Does anyone else have that experience? (relating to above quote)]” There is one lady but she’s actually the one that I joined with anyway. [Interviewer: Okay.] But I, I feel there are others that are definitely getting towards that stage. It’s still going quite early days. (female1, PAFG) [Interviewer: I guess it’s quite early for some of you, yeah.] “yeah” (female 2, PAFG)

Social support through sharing of skills was mentioned by one participant in the social group also, with agreement indicated by most of the others in the social focus group.

Discussion in the focus groups also touched on the subthemes Reduced loneliness and Improved home relationships, which were each mentioned by one person. And focus groups also felt that group membership Improved social skills through opening up and becoming more approachable (male, PAFG) or enabling them to become more accepting of others’ who are different (general agreement in Social FG).

This case study integrated results from a one-year longitudinal survey study and focus group discussions to gather rich information regarding the potential changes in social wellbeing that older adults may experience when joining community organisations offering group activities. The findings from this study indicate that becoming a member of such a community organisation can be associated with a range of social benefits for older adults, particularly related to reducing loneliness and maintaining social connections.

Joining a LAC was associated with a reduction in loneliness over 1 year. This finding is in line with past group-intervention studies where social activity groups were found to assist in reducing loneliness and social isolation [ 49 ]. This systematic review highlighted that the majority of the literature explored the effectiveness of group activity interventions for reducing severe loneliness or loneliness in clinical populations [ 49 ]. The present study extends this research to the general older adult population who are not specifically lonely and reported to be of good general health, rather than a clinical focus. Our findings are in contrast to results from an evaluation of a community capacity-building program aimed at reducing social isolation in older adults in rural Australia [ 59 ]. That program did not successfully reduce loneliness or improve social support. The lack of change from pre- to post-program in that study was reasoned to be due to sampling error, unstandardised data collection, and changes in sample characteristics across the programs [ 59 ]. Qualitative assessment of the same program [ 59 ] did however suggest that participants felt it was successful in reducing social isolation, which does support our findings.

Changes in loneliness were not a main discussion point of the qualitative component of the current study, however some participants did express that they felt less lonely since joining LACVI and all felt they had become more connected with others. This is not so much of a contrast in results as a potential situational issue. The lack of discussion of loneliness may have been linked to the common social stigma around experiencing loneliness outside certain accepted circumstances (e.g. widowhood), which may lead to underreporting in front of others [ 45 ].

Overall, both components of the study suggest that becoming a member of an activity group may be associated with reductions in loneliness, or at least a greater sense of social connectedness. In addition to the social nature of the groups and increased opportunity for social connections, another possible link between group activity and reduced loneliness is an increased opportunity for time out of home. Previous research has found that more time away from home in an average day is associated with lower loneliness in older adults [ 60 ]. Given the significant health and social problems that are related to loneliness and social isolation [ 13 , 14 , 15 ], the importance of group involvement for newly retired adults to prevent loneliness should be advocated.

In line with a significant reduction in loneliness, there was also a trend ( p  = 0.056) toward an increase in social support from baseline to 12 months in the survey study. Whilst suggestive of a change, it is far less conclusive than the findings for loneliness. There are a number of possible explanations for the lack of statistically significant change in this variable over the course of the study. The first is the small sample size, which would reduce the statistical power of the study. It may be that larger studies are required to observe changes in social support, which are possibly only subtle over the course of 1 year. This idea is supported by a year-long randomised controlled trial with 90 mildly-depressed older adults who attended senior citizen’s club in Norway [ 37 ]. The study failed to see any change in general social support in the intervention group compared to the control over 1 year. Additional analysis in that study suggested that people who attended the intervention groups more often, tended to have greater increases in SS ( p  = 0.08). The researchers stated that the study suffered from significant drop-out rates and low power as a result. In this way, it was similar to our findings and suggests that social support studies require larger numbers than we were able to gain in this early exploratory study. Another possible reason for small changes in SS in the current study may be the type of SS measured. The scale used gathered information around functional support or support given to individuals in times of need. Maybe it is not this type of support that changes in such groups but more specific support such as task-specific support. It has been observed in other studies and reviews that task-specific support changes as a result of behavioural interventions (e.g. PA interventions) but general support does not seem to change in the time frames often studied [ 61 , 62 , 63 ].

There were many social wellbeing benefits such as increased social connectivity identified in focus group discussion, but the specific theme of social support was rarely mentioned. It may be that general social support through such community groups may take longer than 1 year to develop. There is evidence that strong group ties are sequentially positively associated between social identification and social support [ 34 ], suggesting that the connections formed through the groups may lead increased to social support from group members in the future. This is supported by results from the focus group discussions, where one new member felt she could call on colleagues she met in her new group. Other new members thought it was too soon for this support to be available, but they could see the bonds developing.

Other social wellbeing changes

In addition to social support and loneliness that were the focus of the quantitative study, the focus group discussions uncovered a number of other benefits of group membership that were related to social wellbeing (see Fig. 3 ). The social resources theme was of particular interest because it reflected some of the mechanisms that appeared enable social wellbeing changes as a result of being a member of a LAC but were not measured in the survey. The main social resources relating to group membership that were mentioned in the focus groups were social connectedness, development of friendships and opportunity for social responsibility or leadership. As mentioned above, there was wide-spread discussion within the focus groups of the development of social connections through the clubs. Social connectedness is defined as “the sense of belonging and subjective psychological bond that people feel in relation to individuals and groups of others.” ([ 25 ], pp1). As well as being an important predecessor of social support, greater social connectedness has been found to be highly important for the health of older adults, especially cognitive and mental health [ 26 , 32 , 34 , 35 , 64 ]. One suggested theory for this health benefit is that connections developed through groups that we strongly identify with are likely to be important for the development of social identity [ 34 ], defined by Taifel as: “knowledge that [we] belong to certain social groups together with some emotional and value significance to [us] of this group membership” (Tajfel, 1972, p. 31 in [ 58 ] p 2). These types of groups to which we identify may be a source of “personal security, social companionship, emotional bonding, intellectual stimulation, and collaborative learning and……allow us to achieve goals.” ([ 58 ] p2) and an overall sense of self-worth and wellbeing. There was a great deal of discussion relating to the opportunity for social connectedness derived through group membership being particularly pertinent following a significant life event such as moving to a new house or partners becoming unwell or dying and especially retirement. This change in their social circumstance is likely to have triggered the need to renew their social identity by joining a community group. Research with university students has shown that new group identification can assist in transition for university students who have lost their old groups of friends because of starting university [ 65 ]. In an example relevant to older adults, maintenance or increase in number of group memberships at the time of retirement reduced mortality risk 8 years later compared to people who reduce their number of group activities in a longitudinal cohort study [ 66 ]. This would fit with the original Activity Theory of ageing; whereby better ageing experience is achieved when levels of social participation are maintained, and role replacement occurs when old roles (such as working roles) must be relinquished [ 67 ]. These connections therefore appear to assist in maintaining resilience in older adults defined as “the ability to maintain or improve a level of functional ability (a combination of intrinsic physical and mental capacity and environment) in the face of adversity” (p29, [ 5 ]). Factors that were mentioned in the focus groups as assisting participants in forming connections with others were shared interest, learning from others, and a fun and accepting environment. It was not possible to assess all life events in the survey study. However, since the discussion from the focus groups suggested this to be an important motivator for joining clubs and potentially a beneficial time for joining them, it would be worth exploring in future studies.

Focus group discussion suggested that an especially valuable time for joining such clubs was around retirement, to assist with maintaining social connectivity. The social groups seem to provide social activity and new roles for these older adults at times of change. It is not necessarily important for all older adults but maybe these ones identify themselves as social beings and therefore this maintenance of social connection helps to continue their social role. Given the suggested importance of social connectivity gained through this organisation, especially at times of significant life events, it would valuable to investigate this further in future and consider encouragement of such through government policy and funding. The majority of these types of clubs exist for older adults in general, but this study emphasises the need for groups such as these to target newly retired individuals specifically and to ensure that they are not seen as ‘only for old people’.

Strengths and limitations

The use of mixed –methodologies, combining longitudinal survey study analysed quantitatively, with a qualitative exploration through focus group discussions and thematic analysis, was a strength of the current study. It allowed the researchers to not only examine the association between becoming a member of a community group on social support and loneliness over an extended period, but also obtain a deeper understanding of the underlying reasons behind any associations. Given the variability of social support definitions in research [ 17 ] and the broad area of social wellbeing, it allowed for open exploration of the topic, to understand associations that may exist but would have otherwise been missed. Embedding the research in an existing community organisation was a strength, although with this also came some difficulties with recruitment. Voluntary coordination of the community groups meant that informing new members about the study was not always feasible or a priority for the volunteers. In addition, calling for new members was innately challenging because they were not yet committed to the club fully. This meant that so some people did not want to commit to a year-long study if they were not sure how long they would be a member of the club. This resulted in slow recruitment and a resulting relatively low sample size and decreased power to show significant statistical differences, which is a limitation of the present study. However, the use of Linear Mixed Models for analysis of the survey data was a strength because it was able to include all data in the analyses and not remove participants if one time point of data was missing, as repeated measures ANOVAs would do. The length of the study (1 year) is another strength, especially compared to previous randomised controlled studies that are typically only 6–16 weeks in length. Drop-out rate in the current study is very low and probably attributable to the benefits of working with long-standing organisations.

The purpose of this study was to explore in detail whether there are any relationships between joining existing community groups for older adults and social wellbeing. The lack of existing evidence in the field meant that a small feasibility-type case study was a good sounding-board for future larger scale research on the topic, despite not being able to answer questions of causality. Owing to the particularistic nature of case studies, it can also be difficult to generalise to other types of organisations or groups unless there is a great deal of similarity between them [ 68 ]. There are however, other types of community organisations in existence that have a similar structure to LACVI (Seniors centres [ 36 , 40 ], Men’s Sheds [ 38 ], University of the Third Age [ 34 , 69 ], Japanese salons [ 70 , 71 ]) and it may be that the results from this study are transferable to these also. This study adds to the literature around the benefits of joining community organisations that offer social and physical activities for older adults and suggests that this engagement may assist with reducing loneliness and maintaining social connection, especially around the time of retirement.

Directions for future research

Given that social support trended toward a significant increase, it would be useful to repeat the study on a larger scale in future to confirm this. Either a case study on a similar but larger community group or combining a number of community organisations would enable recruitment of more participants. Such an approach would also assist in assessing the generalisability of our findings to other community groups. Given that discussions around social benefits of group membership in the focus groups was often raised in conjunction with the occurrence of significant life events, it would be beneficial to include a significant life event scale in any future studies in this area. The qualitative results also suggest that it would be useful to investigate whether people who join community groups in early years post retirement gain the same social benefits as those in later stages of retirement. Studies investigating additional health benefits of these community groups such as physical activity, depression and general wellbeing would also be warranted.

With an ageing population, it is important to investigate ways to enable older adults to age successfully to ensure optimal quality of life and minimisation of health care costs. Social determinants of health such as social support, loneliness and social contact are important contributors to successful ageing through improvements in cognitive health, quality of life, reduction in depression and reduction in mortality. Unfortunately, older adults are at risk of these social factors declining in older age and there is little research investigating how best to tackle this. Community groups offering a range of activities may assist by improving social connectedness and social support and reducing loneliness for older adults. Some factors that may assist with this are activities that encourage sharing interests, learning from others, and are conducted in a fun and accepting environment. Such groups may be particularly important in developing social contacts for newly retired individuals or around other significant life events such as moving or illness of loved ones. In conclusion, ageing policy and strategies should emphasise participation in community groups especially for those recently retired, as they may assist in reducing loneliness and increasing social connections for older adults.

Abbreviations

Focus group

Life Activities Club

Life Activities Clubs Victoria

Linear mixed model

Physical activity

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The primary author contributing to this study (GLS) receives PhD scholarship funding from Victoria University. The other authors were funded through salaries at Victoria University.

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GLS, RE and JVU made substantial contributions to the conception and design of the study. GLS and GOS supervised data collection for the surveys (GLS) and focus groups (GOS and GLS). GLS, GOS, RE, JH and JVU were involved in data analysis and interpretation. All authors were involved in drafting, the manuscript and approved the final version.

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Lindsay-Smith, G., O’Sullivan, G., Eime, R. et al. A mixed methods case study exploring the impact of membership of a multi-activity, multicentre community group on social wellbeing of older adults. BMC Geriatr 18 , 226 (2018). https://doi.org/10.1186/s12877-018-0913-1

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ORIGINAL RESEARCH article

A mixed methods research study of parental perception of physical activity and quality of life of children under home lock down in the covid-19 pandemic.

• 1 Transdisciplinary Research Center in Psychology, Autonomous University of the State of Morelos, Cuernavaca, Mexico
• 2 Institute of Psychology and Special Education, Department of Applied Psychology, University Center for Health Sciences, University of Guadalajara, Guadalajara, Mexico
• 3 Facultad de Ciencias Sociales, Universidad Europea de Canarias, La Orotava, Spain
• 4 Faculty of Psychology and Speech Therapy, Department of Clinical Psychology, Psychobiology and Methodology, University of La Laguna, Santa Cruz de Tenerife, Spain

Household confinement due to the rapid spread of the pandemic caused by COVID-19 has brought very significant changes, such as the forced stay-at-home of children due to the closure of schools. This has meant drastic changes in the organization of daily life and restrictions on their activities, including exercise, which could affect the quality of life of the children due to its importance. In order to study the relationship between physical activity and psychological well-being of minors, a study has been carried out with Mixed Methods Research, combining survey methodology with transversal design with qualitative methodology using discourse analysis. A total of 234 parents of minors in Spain and several Spanish-speaking countries in America participated. The instrument was a questionnaire in Google Forms, which included the Kidscreen-27 quality of life scale. The results show significant differences in both the type of physical activity and its frequency due to age, and differences in parents’ perception of whether their children’s physical activity levels were sufficient or not, both on the health, mood and school subscales, and in the categorization of open responses referring to concerns due to the pandemic, analyzed with the ALCESTE technique. The relationship between physical activity of children and adolescents and quality of life is clearly concluded.

Introduction

At the end of December 2019, the first evidence appeared in Wuhan, China, that a new lethal viral disease had emerged, for which no vaccine or specific medication was available. In March the disease became a pandemic and a large majority of countries, either with specific regulations or through recommendations to the population, established confinement and social distance as the possible solution to prevent further spread of the disease, to avoid saturation of hospitals and curb the lethality of the virus. On March 10th, the global situation with regard to COVID-19 was 113,702 confirmed cases (4,125 new) and 4,012 deaths (203 new) ( World Health Organization [WHO], 2020a ). On December 29, the number of confirmed cases worldwide was to over 79 million, with a cumulative death toll of over 1.7 million ( World Health Organization [WHO], 2020b ).

In the field of Psychology, theoretical formulations have been made to explain the reasons why COVID-19 evolved so rapidly and was so widely spread. Urzúa et al. (2020) point out three factors: (a) illusory optimism; (b) inadequate perception of absence of contingencies produced by the population’s behavior; (c) optimistic risk perception. Vera-Villarroel (2020) has stated that physical and mental health are closely linked, and explains the expansion of the pandemic based on three psychological processes: cognitive, with the population having irrational beliefs about the disease and illusory optimism; emotional, with feelings such as fear, stress and anger; behavioral, with exposure and risk behaviors. The author points out that these factors must be considered in the intervention to save lives.

Several studies have shown the risk that social isolation caused by the pandemic implies not only for the most exposed groups (health workers), but also for the mental health of the general population. Problems of anxiety ( Chew et al., 2020 ; Holmes et al., 2020 ; Wang and Zhao, 2020 ), stress and psychological distress have been reported, both during and even after the biodisaster ( Liu D. et al., 2020 ). Along the same lines, the narrative review conducted by Huarcaya-Victoria (2020) points out three types of problems for the general population: health anxiety, depression and stress. Rajkumar (2020) groups the problems derived from the pandemic into four sections: general population, health workers, vulnerable people and therapeutic strategies and interventions. The author emphasizes the need to study the effect of the situation generated by the pandemic on children and adolescents.

A particularly vulnerable group in this whole situation is children and adolescents. Although results in children for Coronavirus-19 disease are still inconsistent. Changes produced in their environment since COVID-19, such as the restrictions that home isolation and not being able to access the main areas of socialization ( Socías et al., 2020 ), with risks such as stress from both them and their parents, since COVID-19 can cause psychological alterations in children such as those caused by other stressors ( Espada et al., 2020 ; Socías et al., 2020 ).

Certain factors can have effects not only during confinement but also afterward, such as the disappearance of healthy habits like attending classes, which have been replaced by unhealthy behaviors, such as sedentary lifestyles, inappropriate diets, excessive use of screens which can produce, in addition to weight gain, physical problems ( Brazendale et al., 2017 ; Wu et al., 2017 ). From this follows the importance of understanding the effects that a wide variety of personal and contextual factors ( Holgado-Tello et al., 2010 ) can have on children and adolescents and their interaction in the way they experience physical activity and sports during the pandemic situation. Other risks that have been highlighted, depending on age, include substance abuse, accommodation issues and overcrowding and change and disruption of social networks ( Holmes et al., 2020 ). It is expected that, after confinement, in most cases these problems will disappear ( Barlett et al., 2020 ), although some may persist after the situation generated by the pandemic has passed ( Espada et al., 2020 ). Space restrictions and not being able to go outside are especially important in childhood for the proper development of playing, which is essential for its maturation process ( García-Serrano and García-Fernández, 2015 ).

In view of the difficult situation experienced, the population has been provided with recommendations, some of which have been generated by institutions to support their citizens ( Socías et al., 2020 ). These guidelines have many points in common: maintaining routines, being active, supporting minors, carrying out social activities, in short, maintaining a normal life in safety ( Liu J. J. et al., 2020 ). The support of parents is important, who can strengthen family ties and meet the needs of children through appropriate parenting styles ( Wang et al., 2020 ). The need for physical exercise is also stressed ( Holmes et al., 2020 ; Mera-Mamián et al., 2020 ; Romero et al., 2020 ). Physical exercise plays a relevant role both on a physical level ( Vidarte Claros et al., 2011 ) and in mental processes ( Ramírez et al., 2004 ; Zhou et al., 2020 ) as well as on a psychological level ( Berger and Motl, 2000 ; Biddle and Mutrie, 2001 ; Tessier et al., 2007 ; Anderson and Brice, 2011 ). In particular, there is clear evidence of the contribution of physical activity to psychological well-being ( Molina-García et al., 2007 ; Jiménez et al., 2008 ; Romero et al., 2009 ; Fernández Ozcorta et al., 2015 ).

The relationship between physical activity and well-being linked to the quality of life has been the subject of multiple investigations in recent years, which have also emphasized its influence on the general health of the various sectors of the population ( Schwartzmann, 2003 ; Bize et al., 2007 ; Anokye et al., 2012 ). In particular, different studies have highlighted the association between high levels of physical activity, or the practice of sports, and the quality of life in children and adolescents ( Anokye et al., 2012 ; Marker et al., 2018 ; Luna et al., 2019 ).

Likewise, recent reviews of studies on interventions focused on the promotion of sports practices and their impact on issues such as mental health, self-esteem, anxiety levels, and perception of well-being in children and adolescents, underline the benefits of this kind of activities for the general health of this population in particular, showing that physical-sport education pilot programs might promoted significant improvements in specific indicators of subjective well-being and emotional intelligence of participating adolescents’ groups ( Bermejo-Cantarero et al., 2017 ; Luna et al., 2019 ).

The lack of physical activity is a widely reported public health problem ( Bermejo-Cantarero et al., 2017 ). For this reason, evaluation that focuses on the relationships between physical activity and health-related quality of life is an important focus of research in this field. On the other hand, there is little research aimed at exploring parents’ knowledge and perceptions of their children’s physical activity, their ideas about its importance and impact on the way they experience diverse dimensions of a stressful life ( Gallego-Méndez et al., 2020 ; Spinelli et al., 2020 ; Yarımkaya and Esentürk, 2020 ) particularly during the Coronavirus outbreak. Exploring these issues, including the different perspectives of persons involved in families’ life ( Izquierdo-Sotorrío et al., 2016 ), could help provide recommendations and support programs for parents to guide their children’s physical activity.

In the case of children and adolescents, physical activity has important benefits: it promotes growth and enhances both physical development ( Rosa et al., 2018 ) and psychomotor, cognitive and social development, and generally favors all body systems: metabolism of carbohydrates and lipids, control of blood pressure, decreases the risk of type 2 diabetes and improves body composition ( Camargo Lemos and Ortiz Dallos, 2010 ).

Physical activity also favors psychological factors: it helps to build a balanced self-concept and improves self-perception, mood, self-image, physical self-concept, perception of health and life satisfaction, and intellectual function ( Camargo Lemos and Ortiz Dallos, 2010 ; Reigal-Garrido et al., 2012 ; Rosa, 2015 ).

The home quarantine imposed by the COVID-19 may make physical activity more difficult, and as we have seen in the studies reviewed, this leads to a decline in the quality of life of children and adolescents. Quality of life (QoL) is understood as personal satisfaction (or dissatisfaction) with the cultural or intellectual conditions in which an individual lives. Health is one of the domains of quality of life, this domain comprises not only physical health but also psychological health, as well as the interaction that people have with others and with the community ( Ravens-Sieberer et al., 2005 ). For this research, we are interested in reviewing the quality of life, based on the assessment of the well-being perceived by parents.

Given that the collection of high quality data is a priority in order to understand the psychological effects that the quarantine may have produced in the population, and that there is an urgent need to discover, analyze and evaluate the psychological interventions that could alleviate the problems generated and minimize the risks that could occur in the mental health of society ( Holmes et al., 2020 ), the aim of this research is to analyze parents’ perceptions of their children’s quality of life in relation to observed physical activity in the conditions of staying in the housing due to the pandemic situation due to the COVID-19. It hypothesizes the existence of greater quality of life perceived by parents who consider their children to be sufficiently physically active.

In this sense, we try to find out if there is any difference in quality of life between children of different ages and sex in the conditions of staying in the housing due to the pandemic situation due to the COVID-19 as perceived by mothers and fathers. In addition, it is investigated whether the characteristics of the housing (the space) conditioned the perception of the parents about their children doing more or less physical activity, and whether there are differences between the age and the type of physical exercise done. It is also interesting to know the relationship between the level of physical activity and psychological well-being.

Materials and Methods

Methodology and design.

This is a non-experimental design. Mixed methodology was used (Mixed Methods Research, MMR; Johnson and Onwuegbuzie, 2004 ; Denscombe, 2008 ). The data was collected through a cross-sectional design with survey methodology, using an ex post facto design, and there are open questions that allow a qualitative analysis.

To determine the differences in physical activity, three independent variables were considered: age (children, adolescents), sex (male, female), as well as a third variable, grouping parents according to their opinion about the physical activity developed by their children in confinement (sufficient, insufficient). The dependent variables used has been the different scales that make up the KIDSCREEN test, which therefore requires multivariate analysis.

Participants

A total of 234 participants responded to the survey. The average age was 42.82 (SD = 7.10), with a range between 24 and 65. More mothers (203) than fathers (30) participated, and only one of the informants was guardian of the minors, relative in charge of the child. Table 1 presents the data regarding age (values corresponding to the percentiles 25, 50, 75, and over 75) and educational level. The procedure for selecting the sample was one of convenience.

Table 1. Parents’ age and educational level.

Parents and caregivers were asked to think of one of their children when answering the questionnaires. In this way, for the data analysis, they were grouped by the ages of the children, the largest group being children between 8 and 11 years old, 125 (52 female) and 109 adolescents between 12 and 17 (54 female).

The countries of origin of the participants were mainly Spain (134, 57.3%), and Mexico (86, 36.9%) and others American countries (Panamá, Colombia, Argentina, and Chile; 13, 5.8%).

Most families (230, 98.3%) reported not having been victims of the coronavirus. Only four families had a confirmed patient in the family unit, and in four other cases there was a suspicion that a family member had the disease.

In the questionnaire, a question was included about family and housing conditions. Most of the sample lived in the same dwelling with up to four family members (167, 71.4%), while it was less frequent for the family size to be greater than four (67, 28.6%). The average number of rooms, discounting common services, such as kitchen, living room and bathroom, was 3 (113 of the participants, 48.3%), with a range between 1 and 10 rooms. Most of the dwellings have at least one exterior space (177 of the participants, 75.6%).

Instruments

A questionnaire was designed to obtain data on parents’ perceptions of their children’s physical activity, some specific data on the type of housing during their child’s confinement. This questionnaire consists of 18 questions (15 closed, 3 open-ended) distributed in the following categories: (1) descriptive data of the participants (6 items); (2) family and housing conditions (5 items); (3) issues related to the situation produced by the COVID-19 pandemic (3 items); (4) complaints and needs caused by the situation produced by the COVID-19 pandemic (4 items) (see Supplementary Data Sheet 1 ). At the end of the questionnaire it was mentioned that if they wanted to ask for the results of the research they could leave their e-mail. All questions were marked as mandatory in the Google form, so there was no room for incomplete or missing data.

For the HRQoL measure, the Kidscreen-27 Parent Questionnaire ( Ravens-Sieberer et al., 2005 ). Spanish version was used, once the authorization for its use in this study was requested and obtained. This is a questionnaire that assesses health-related quality of life. This questionnaire was used because it provides a parameter to contrast the perception of psychological and health well-being in the child population with the physical activity observed by the parents. It consists of 27 items, which are answered in a Likert-type scale of five alternatives (from nothing to very much), structured in five scales: physical activity (4 items), mood (7 items), family life (7 items), friends (4 items), and school (4 items), and a single question about your child’s general state of health in the last week. The test is filled in by parents, for children and adolescents between the ages of 8 and 18. The original authors ( Ravens-Sieberer et al., 2005 ) offer evidence of the factorial validity of the test and its reliability in all the subscales of the test, in terms of internal consistency, with the total Cronbach’s Alpha value equal to 0.82. With our data, a similar Alpha of 0.831 has been obtained.

The questionnaires were assembled in electronic format with the Google Forms application. It was sent out by email and through social networks (Whatsapp, Facebook, and Twitter) to contacts in different educational associations, using the snowball technique. It was sent during the month of May 2020 (it can be defined as the first period of confinement). Only one of both parents was asked to answer the questionnaire with one of their children in mind (in case they have two or more), and who was in the age range of 8–17 years. The time required to fill in the questionnaire was 15 to 20 min.

At the time of data collection, all participants (regardless of country) were in the same conditions of confinement, leaving the home only for essential activities, with restrictions on going to school, physical activities or recreation outside the home.

As far as ethical aspects are concerned, the Commission on Ethics in Research and Animal Welfare of the University of La Laguna (CEIBA) was asked to authorize the study, which was granted (Registration Number: CEIBA2020-0396). In the questionnaire, the corresponding information for the participants was set out in the Organic Law 3/2018, of December 5th, on Personal Data Protection and guarantee of digital rights ( BOE, 2018 ), guaranteeing the anonymity and confidentiality of the data.

Data Analysis

The relationship between parental consideration of physical activity sufficiency and having or not having outdoor space in the home was calculated using the V of Cramer.

To check the absence of univariate outliers, we used Tukey’s test that takes as reference the difference in interquartile range, considering a slight outlier at 1.5 times this distance, and extreme when it is at three times that distance. To determine the existence of multivariate outliers, the Mahalanobis distance was calculated.

Regarding quality of life, it was analyzed in two ways taking three independent variables: age, sex and parents’ assessment. Since the quality of life variable, measured by Kidscreen, is split into several scales, it requires a multivariate approach, so three MANOVAs were carried out, one according to each independent variable studied. All quantitative analyses were conducted with the SPPS program, v.21.

For the qualitative analysis, the phenomenological discourse analysis method was used, which identifies the meanings of language, through lexical analysis using the ALCESTE software (in French: Analyse des Lexèmes Coocurrents dans les Enoncés Simples d’un Texte ) ( Reinert, 2003 ). This program facilitates the analysis of linguistic materials that generally arise in social research, such as answers to open-ended questions in questionnaires, in-depth interviews or answers based on projective techniques ( De Alba, 2004 ). The ALCESTE methodology consists of three stages: the construction of the data matrix, the classification of the context units (statements) and the description of the classes ( Gil et al., 1994 ). The methodology focuses on the statistical distribution of word succession, taking into account only the simultaneous presence of several words in the same statement. In this way, classes are identified as semantic fields, represented in trees or dendograms. In the ALCESTE method, the initial text is broken down into elementary contextual units (ECUs), which approximately match the size of a sentence.

The statistical analysis, although limited to explain in detail the meaning of a text, allows the elaboration of a “cartography” of the lexical worlds chosen by the speaker to express himself and, therefore, of the reference systems from which he constructs his way of seeing reality ( Gil et al., 1994 ; Reinert, 2003 ).

Quantitative Analysis

Physical activity.

In order to know if there is a relation between the participant’s perception of the sufficiency or not of the physical activity developed by his or her child and the space dedicated to exercises, these variables were analyzed, considering in the household conditions whether there was no outdoor space to carry out activities or if, on the contrary, there was. The results are shown in Table 2 . There is significant dependence between both variables (V of Cramer = 0.146; p = 0.026).

Table 2. Perception of adequacy of physical activity and space for it.

Elimination of Outsiders

Eleven extreme univariate cases were eliminated and none multivariate by Mahalanobis distance, with the criterion of probabilities less than 0.001.

Psychological Well-Being by Age and Sex

Most parents consider their child’s health to be excellent (88, 39.5%) or very good (114, 51.1%), while only 21 (9.4%) rate it as “fair.”

The group was divided into two ages: from 8 to 11 (children) and 12 and older (adolescents). Table 3 shows the descriptive statistics.

Table 3. Age and sex level descriptive statistics.

To know if there are differences by sex and age, a MANOVA was calculated, which was for sex (Wilk’s λ = 0.949, F 5 . 215 = 2.3, p = 0.046, Partial η 2 = 0.051), and for age (Wilk’s λ = 0.843, F 5 . 215 = 8.034, p = 0.001, Partial η 2 = 0.157) nor for interaction (Wilk’s λ = 0.982, F 5 . 215 = 0.796, p = 0.554, Partial η 2 = 0.018). Individual ANOVA results are only significant for the variable age in the health scale ( F 1 , 219 = 7.692, p = 0.006, Partial η 2 = 0.034), with a small effect size and in the friend one ( F 1 , 219 = 28.421, p < 0.001, Partial η 2 = 0.115), with a large effect size.

Physical Activity and Well-Being

In order to assess whether the children developed adequate physical activity, the parents were asked whether they considered it sufficient or insufficient. A total of 146 considered it to be insufficient and 77 sufficient. The informants were divided into two groups according to this variable and it was analyzed whether there were significant differences in their assessment of the psychological well-being of the children. Table 4 presents the mean values and standard deviations of each welfare scale.

Table 4. Descriptive statistics of physical activity and well-being.

The result of the MANOVA was significant (Wilk’s λ = 0.743, F 5 , 217 = 15.001, p < 0.001, Partial η 2 = 0.257). Individual ANOVA results are only significant for the health scale ( F 1 , 223 = 64.821, p < 0.001, Partial η 2 = 0.227), with a large effect size.

Qualitative Analysis

In order to find out the perceptions that families have regarding different aspects of stay-at-home confinement, both required by law and recommended, four open-ended questions were analyzed by ALCESTE, separating into two samples parents who considered that their children were getting enough exercise and those who thought it was insufficient: (a) Explain why you say you have sufficient or insufficient physical activity; (b) How did your child live it?; and (c) What or who does your child miss?

Analysis of the Question “Explain Why You Have Sufficient or Insufficient Physical Activity”

The analysis of ALCESTE, for the group of parents who consider that their children have sufficient physical activity (see Figure 1 ), the results are grouped into three classes, which explain 66% of textual units. The first class is linked to the link between the second and third classes. The most representative class is 1, as it groups the largest number of EUs. The details of the analysis, in terms of class name, UCEs grouped and percentage involved, most representative word and examples, are presented in Table 5 .

Figure 1. Dendogram corresponding to the question “Explain why you have sufficient physical activity.”

Table 5. Analysis of the question “Explain why you have sufficient or insufficient physical activity.”

The reasons given by parents for considering that their children could not get enough physical activity are more dispersed, as they have been grouped into six clases (see Figure 2 ). In this case, there are two groupings: on the one hand, class 2 connects with the union of classes 5 and 6, while class 1 connects with the link between classes 3 and 4. Classes 1, 5, and 6 are related to the impossibility of doing either exercise or sports that they did before the pandemic, while the difficulties of the other set of classes go in the direction of lack of space and the need to go outside.

Figure 2. Dendogram corresponding to the question “Explain why you have insufficient physical activity.”

Analysis of the Question “How Did Your Child Live Not Being Able to go Out on the Street?”

The analysis of the group that considers that their son or daughter has had enough activity explains 51% of the text corpus. The dendogram is shown in Figure 3 .

Figure 3. Dendogram of the question “How did your child live not being able to go outside?” Sufficient physical activity.

On the other hand, in the group of parents who consider the activity performed by their children insufficient, although it explains only 27% of the corpus, extracting only two classes ( Figure 4 ).

Figure 4. Dendogram of the question: “How did your child live not being able to go outside?” Insufficient physical activity.

Table 6 shows the detail of the classes, in terms of their name, number of UCEs they group, percentage of the corpus they explain and the most representative word, as well as representative examples of each class. In both groups, a distinction is made between positive aspects, of being at home, or pointing out some kind of problem.

Table 6. Information from the analysis to the question “How did your child live not being able to go out on the street?”

Analysis of the Question “What or Who Does Your Child Miss?”

The analysis of this question, for the group of parents who consider that the physical activity developed by their son or daughter is sufficient, gives two classes, which explain 65% of the textual units, that is, an average relevance of the treatment (see Figure 5 ). These are two antagonistic classes: the second is the one that groups the most textual units (71.70%), where it is clear that the child misses both the extended family and the people in his or her school environment. The first class includes those who responded that they have not missed anything or anyone and is quite homogeneous: they do not miss anyone (see Table 7 ).

Figure 5. Dendogram of the answers: What or who does your child miss? Sufficient physical activity.

Table 7. Information from the analysis to the question “What or who does your child miss?”

In the case of parents who feel that their son or daughter does not get enough physical activity, there are six classes, with a grouping of classes on a ladder: from class 1 to 4 are connected individually, linking class 5 with 6.

It explains 72% of the textual units, which means that the relevance of the treatment is high. They are presented in Figure 6 .

Figure 6. Dendogram of the answers: “What or who does your child miss?” Insufficient physical activity.

The first thing to note is that the data collection was done in the months of April and early May, at the time of the most severe confinement, as in Spain, Mexico, Panama, and Argentina ( BBC, 2020 ). It is true that the regulatory conditions regarding confinement have differed in the countries where the participants in this research live, in some cases, such as Spain, being obligatory by the State of Alarm, while in other countries governments strongly recommended avoiding going out and staying at home. This has meant 24-hour family life, with parents having to telework and children being taught online. The possibilities of exercising under these conditions have been very limited, which can have important effects on the psychological well-being of the minors.

As far as the health of their children is concerned, a large majority consider it to be good or very good. Furthermore, taking into account the five scales of quality of life in relation to age levels (children and adolescents), parents value the health of their children more the younger they are. In contrast, differences in contact with friends score higher for adolescents.

Parents’ perceptions of their children’s quality of life significant differences are observed with respect to sex at the global level, which is not maintained in the scales separately, but they do differ by age on two of the instrument’s scales: health, where younger children score higher, and friends, with the opposite result, as would be expected: adolescents score significantly higher on this scale.

Physical activity is conditioned by the type of housing. The results show that when there is no outdoor space to develop physical activity, parents find that exercise performed by their children is insufficient more often.

The objective of this study, to establish whether there is a relationship between physical activity and psychological quality of life in the conditions of confinement at home from the parents’ perspective, has been clearly corroborated, both in quantitative and qualitative analyses, finding differences between the two established groups of participants: those who considered that their children could develop sufficient physical exercise versus those who thought it was insufficient. Divergences are shown in both groups at the quantitative and qualitative levels.

With respect to the quality of life instrument, there are significant differences between the overall scores of the two groups; however, significant differences are only found in the health scale; when parents consider that the physical activity developed by their children is insufficient, lower scores are obtained in that scale. These results support the hypothesis of a positive relationship between quality of life and physical activity.

The differences found between the two groups of parents (those who consider their children’s physical activity sufficient and those who do not) in the quantitative analyses are also verified in the qualitative ones. The second group of parents shows more dispersion in the open responses given, as well as greater concern.

Thus, in the first open question analyzed qualitatively, “ Explain why you have sufficient or insufficient physical activity ,” the discourse of some parents differs significantly, as it is obvious, since the reasons they give for the physical activity done by their children being sufficient must be differentiated from those who consider it to be insufficient. In the latter, two perspectives are clearly distinguished in the two branches that appear in the dendogram: lack of space or impossibility of doing the exercise they would like to do. Moreover, it also confirms what has already been commented, that is, how there is a relationship between physical space and the facilities of households to exercise is related to the satisfaction or dissatisfaction with the physical activity performed by their children.

The second question, centered on their child’s experiences of not being able to go out, parents who feel their children have enough physical activity, report that their children experienced the lock down positively. On the other hand, in the other group there is a division of opinions: one part considers that their children lived the lock down without problems, but others think that their children lived it with stress, being this last one the most representative class. It confirms again a greater decline in the quality of life of their children for this group.

Finally, in the question relating to whether their child misses something or someone, there is greater variability among the children whose parents consider they do not have enough activity, since the answers are grouped together in one more class, where there is content where school life is missing.

The limitations of this work are about convenience samples, since there is no guarantee of absence of selection bias. However, having included several countries, all of them with a significant restriction on going out of the house, it gives indications of cross validity. This unusual development of the pandemic has evened out the differences between nations in a common struggle against an unprecedented biological crisis.

As far as the uncertainty of living under what has come to be called the new normality, together with the certainty that the threat of the pandemic is not over and that outbreaks, more or less virulent, may occur, it is particularly relevant to carry out research on mental health and psychological well-being, in order to be able to foresee more precisely the actions to be taken, knowing the dangers involved. Holmes et al. (2020) point out how important it is to accumulate experience based on the evidence that has provided the lessons learned so that those in power can coordinate measures that will damage the lives of citizens as little as possible, especially those who are most vulnerable. In this regard, since children are a vulnerable sector of the population, knowledge of their reactions and how they have been affected is particularly relevant. For future research, this could also include children’s self-report, comparing their perception with their mothers and fathers’s ( Izquierdo-Sotorrío et al., 2016 ). As a general recommendation in the light of the data collected, emphasizing the importance of exercise in guaranteeing the psychological well-being of minors is vital and must be conveyed to the population.

Data Availability Statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

Ethics Statement

The studies involving human participants were reviewed and approved by The University of La Laguna’s Ethics Committee of Research and Animal Welfare has approved this research (Registration Number: CEIBA2020-0396). The patients/participants provided their written informed consent to participate in this study.

Author Contributions

ÁB, GL-A, MV, and DC-S had participated in theoretical review. ÁB, ER-N, GL-A, DC-S, and MV had participated in research design and instrument. ÁB had participated in the data analysis. ÁB, ER-N, GL-A, DC-S, and MV had participated in discussion. ÁB, ER-N, GL-A, DC-S, MV, and TA had participated in the study planning, writing, and revision of the article. All authors contributed to the article and approved the submitted version.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgments

The authors thank all the families that have participated in this research.

Supplementary Material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpsyg.2021.649481/full#supplementary-material

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Keywords : home lock down, physical activity, quality of life, pandemic, mixed methods research

Citation: López-Aymes G, Valadez MD, Rodríguez-Naveiras E, Castellanos-Simons D, Aguirre T and Borges Á (2021) A Mixed Methods Research Study of Parental Perception of Physical Activity and Quality of Life of Children Under Home Lock Down in the COVID-19 Pandemic. Front. Psychol. 12:649481. doi: 10.3389/fpsyg.2021.649481

Received: 04 January 2021; Accepted: 16 February 2021; Published: 15 March 2021.

Reviewed by:

Copyright © 2021 López-Aymes, Valadez, Rodríguez-Naveiras, Castellanos-Simons, Aguirre and Borges. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Elena Rodríguez-Naveiras, [email protected]

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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Research Article

Mixed methods research in tobacco control with youth and young adults: A methodological review of current strategies

Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Visualization, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliations Department of Behavioral and Community Health, School of Public Health, University of Maryland, College Park, Maryland, United States of America, Maryland Center for Health Equity, School of Public Health, University of Maryland, College Park, Maryland, United States of America

Roles Data curation, Formal analysis, Investigation, Project administration, Validation, Visualization, Writing – original draft, Writing – review & editing

Affiliation Department of Behavioral and Community Health, School of Public Health, University of Maryland, College Park, Maryland, United States of America

Roles Formal analysis, Investigation, Methodology, Validation, Visualization, Writing – original draft, Writing – review & editing

Affiliation Educational Studies, School of Education, University of Cincinnati, Cincinnati, Ohio, United States of America

Roles Conceptualization, Formal analysis, Investigation, Methodology, Resources, Supervision, Validation, Visualization, Writing – original draft, Writing – review & editing

• Craig S. Fryer, 
• Elizabeth L. Seaman, 
• Rachael S. Clark, 
• Vicki L. Plano Clark

• Published: August 25, 2017
• https://doi.org/10.1371/journal.pone.0183471
• Reader Comments

Introduction

Tobacco use among young people is a complex and serious global dilemma that demands innovative and diverse research approaches. The purpose of this methodological review was to examine the current use of mixed methods research in tobacco control with youth and young adult populations and to develop practical recommendations for tobacco control researchers interested in this methodology.

Using PubMed, we searched five peer-reviewed journals that publish tobacco control empirical literature for the use of mixed methods research to study young populations, age 12–25 years. Our team analyzed the features of each article in terms of tobacco control topic, population, youth engagement strategies, and several essential elements of mixed methods research.

We identified 23 mixed methods studies published by authors from five different countries reported between 2004 and 2015. These 23 articles examined various topics that included tobacco use behavior, tobacco marketing and branding, and cessation among youth and young adults. The most common mixed methods approach was variations of the concurrent design in which the qualitative and quantitative strands were administered at the same time and given equal priority. This review documented several innovative applications of mixed methods research as well as challenges in the reporting of the complex research designs.

Conclusions

The use of mixed methods research in tobacco control has great potential for advancing the understanding of complex behavioral and sociocultural issues for all groups, especially youth and young adults.

Citation: Fryer CS, Seaman EL, Clark RS, Plano Clark VL (2017) Mixed methods research in tobacco control with youth and young adults: A methodological review of current strategies. PLoS ONE 12(8): e0183471. https://doi.org/10.1371/journal.pone.0183471

Editor: Hiroyoshi Ariga, Hokkaido Daigaku, JAPAN

Received: June 3, 2016; Accepted: July 7, 2017; Published: August 25, 2017

Copyright: © 2017 Fryer et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: This study was funded in part by the National Institutes of Health (NIH)/National Cancer Institute (NCI) by grant # K01CA148789: CSF Principal Investigator. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Tobacco use among young people is a global public health issue.[ 1 ] The majority of smokers began smoking in their youth[ 2 , 3 ] and more than 80–90% of smokers in the United States (U.S.) began smoking in their teens.[ 4 ] Currently, approximately 50% of young men and 10% of young women smoke worldwide with annual tobacco-attributable deaths projected to rise from 5 million in 2010 to more than 10 million by 2030.[ 5 ] Tobacco-caused morbidity and mortality is the most preventable disease among humans.[ 6 ] Consequently, tobacco use among young people is a global challenge demanding concerted efforts among tobacco control experts to develop effective prevention, treatment, and cessation modalities.

To address this challenge, the field of tobacco control needs research approaches that are able to address the complex trends and contexts related to tobacco use by youth and young adults. Youth tobacco use behavior in the U.S. is consistently changing with the greater availability, marketing, and promotion of a new and diverse constellation of combustible and non-combustible tobacco products, including the emergence of flavored little cigars and cigarillos, hookah, pipes, snus, dissolvables, and e-cigarettes.[ 7 ] It is well established that the tobacco industry aggressively targets youth and young adults with multifaceted tobacco product promotions.[ 8 , 9 ] Additionally, how young people intentionally change dependent behaviors is not well understood within tobacco control research.[ 10 ] For instance, nicotine dependence is based on adult models and conflicting information exists on nicotine dependence as a concept among youth[ 11 , 12 ] despite it being a significant barrier to smoking cessation.[ 13 ] Current priority tobacco control issues with young people that need to be addressed include: (a) the development of an optimal measure of novel tobacco products (i.e., small cigar and cigarillos);[ 14 ] (b) better understanding the sensory appeal (i.e., smell and sight) of flavored tobacco products;[ 14 ] (c) the escalating trend for dual, poly-tobacco, and nonconventional tobacco product use.[ 15 ]

Mixed methods research is a methodology for collecting, analyzing, and integrating both quantitative and qualitative data during the research process to gain a better understanding of complex research problems.[ 16 , 17 ] Mixed methods approaches add multiple dimensions and rigor to more traditional single-stranded research designs because of the power of integration.[ 18 ] As a result, mixed methods research can provide stronger inferences about a finding and provides the opportunity for presenting a range of divergent viewpoints regarding the phenomena under study and engaging vulnerable populations.[ 17 , 19 ] Therefore, mixed methods research designs offer novel approaches to explicate the complexity of tobacco control issues (e.g., concomitant use and nicotine dependence) among vulnerable youth and young adult smokers.

There are several indicators of the need to consider mixed methods research for addressing complex tobacco control issues. The prevalence of the use of mixed methods designs has increased in recent years, particularly in the fields of the behavioral sciences[ 20 ] and health sciences[ 21 – 24 ] with more than 40 types of mixed methods research designs reported in the literature.[ 25 , 26 ] Furthermore, the Office of Behavioral and Social Sciences Research (OBSSR) of the National Institutes of Health (NIH) commissioned a leadership team in 2010 to develop a guide for investigators regarding mixed methods research. The subsequent report, Best Practices for Mixed Methods Research in the Health Sciences ,[ 27 ] represents an important step in defining mixed methods research to the broader health sciences community. While this growth is encouraging, it is unclear how investigators are using mixed methods designs in tobacco control research to address the complex problems associated with youth and young adult populations.

Therefore, our aim was to examine and describe the use of mixed methods research in tobacco control research about youth and young adults. This methodological review contributes to understanding the adoption and use of mixed methods, which is one of five major methodological domains identified by Creswell.[ 26 , 28 ] Specifically, we addressed the following research questions: (a) What mixed methods designs are investigators using to study young people in tobacco control research ? ; (b) What substantive topics are investigators addressing when using mixed methods ? ; and (c) How are investigators engaging youth in mixed methods research designs ?

There are important audiences for this methodological review. The review has the potential to help tobacco control investigators better understand key practices involved in the design and conduct of mixed methods research and the intricacies of the varied study designs. A description of current practices can also assist funding agencies in identifying mixed methods exemplars as a way to improve evaluation of this important research approach.

Our methods build on established procedures for conducting rigorous methodological reviews and prevalence studies of the use of mixed methods research within disciplinary contexts.[ 29 – 34 ] These procedures guided our decisions about journal selection, search terms, inclusion criteria, and sampling.

A critical issue for methodological reviews is the identification of the appropriate journals for the search. While some methodological reviews have examined only one journal[ 35 ], it is most common to assess several journals.[ 34 ] Additionally, authors often focus on the leading journals within specific disciplines for the review in order to identify high-quality research applications.[ 34 ] Building upon highly-cited reviews in other fields,[ 23 , 29 , 36 ] we decided to limit our search to specific journals that publish tobacco control research to focus the scope of our review and ensure results were replicable and face validity was high. Our aim was to review the best subset of articles from which to learn; exemplars in the field. We solicited the opinions of six nationally-known tobacco research experts to determine the best journals in the field of tobacco control with interest in young populations. Combining this consultation with our expertise and years of experience working in the field of tobacco control research, five high quality, peer-reviewed journals were identified to be included for analysis: Addictive Behaviors, Health Education Research, Nicotine and Tobacco Research, Social Science and Medicine, and Tobacco Control. To ensure that we were not missing a significant source of mixed methods articles, we conducted informal searches of other high-quality, peer-reviewed journals (i.e., Addiction and Preventive Medicine), but did not locate articles that met all study inclusion criteria.

Inclusion criteria

The inclusion criteria of our methodological review encompassed three main designations: youth and young adults, tobacco control research, and mixed methods research defined as:

• Youth or Young Adults—Articles involving youth between the ages of 12–17 years and/or young adults aged 18–25 years.[ 6 ]
• Tobacco Control–Articles involving empirical research regarding any aspect of tobacco use and nicotine dependence.
• Mixed Methods Research–Articles reporting the use of research designs that collect, analyze, and integrate quantitative and qualitative data within a single study or multiple phases of a program of research[ 16 ].

The sampling phase utilized a four-step process: identification, screening, eligibility, and inclusion. An illustration of this process is presented in Fig 1 .

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https://doi.org/10.1371/journal.pone.0183471.g001

The first step was sample identification. The scientific research articles were identified through a broad, multifaceted search strategy. On October 1, 2016 we implemented our search of tobacco control empirical studies that used mixed methods research designs with young people published during January 1, 2004 to December 31, 2015. We searched the selected five journals for articles that matched our first two inclusion criteria (participant age and tobacco control) using PubMed. We chose PubMed as our database because of its comprehensiveness (5,153 journals in Index Medicus and 479 non- Index Medicus journals) and management by the National Institutes of Health’s U.S. National Library of Medicine. This search used broad subject terms, but did not include the term “mixed methods research” because mixed methods experts have cautioned against relying on this term when searching electronic databases as it may result in missing publications that combine quantitative and qualitative methods without self-identifying as mixed methods [ 34 ]. The search strategy used was: (((((((((youth or Adolescen* or "young adult")) AND ("Nicotine & tobacco research: official journal of the Society for Research on Nicotine and Tobacco"[Journal])) OR "Tobacco control"[Journal]) OR "Health education research"[Journal]) OR "Social science & medicine (1982)"[Journal]) OR "Addictive behaviors"[Journal])) AND (Tobacco OR cigarette* or Smok*[Title]). This search of titles yielded 6,924 records. Next, we applied our year range filter (2004–2015) and the results were reduced to 4,487 records. The full yield of 4,487 records was then assessed against our three inclusion criteria.

The second step was screening. Abstracts were obtained for each of the 4,487 titles. The second author (ELS) screened the entire sample by reviewing abstracts to identify all articles that potentially met the inclusion criteria for full review. Often the second and first author (CSF) met to discuss screening decisions. Letters to the editor, systematic reviews, commentaries, special communications, research briefs, and editorials were excluded. To confirm the accuracy of the screening, a randomly selected subsample of 5% (225 titles and abstracts) of the original 4,487 results was sent to the third author (RSC). RSC used the identical inclusion criteria and identified two abstracts among the 225 that warranted a full review. The two abstracts matched those identified by ELS’s review, resulting in a 100% agreement for the 225 abstracts. The screening yielded 44 abstracts of articles eligible for full review.

The third step was to determine the eligibility of all 44 abstracts by obtaining their respective full-text copies. The full articles were then examined and discussed by all four members of the research team. From this review, we excluded 21 articles that reported only qualitative or quantitative methods and thus, did not meet our inclusion criteria for mixed methods research.

The fourth step assessed the remaining articles for inclusion in the sample. Our process resulted in a final sample of 23 articles for the methodological review.

Data coding

The first author (CSF) in consultation with the senior author (VPC) developed a codebook to examine the articles based on categories used in methodological reviews of the use of mixed methods in other topical areas.[ 29 , 36 , 37 ] The codebook was comprised of names and brief descriptions highlighting seven different article features: Substantive Content, Quantitative Component, Qualitative Component, Mixed Methods Features, Youth Engagement Features, Other Issues, and Reflections. Details of the codebook, including the dataset are provided in S1 File .

Two team members (ELS and RSC) were responsible for the primary coding of all articles. Each article was given a randomly generated identification number and randomly assigned to ELS or RSC. They independently coded each assigned article using an Excel spreadsheet accessible by all team members through GoogleDocs TM including direct quotes from the articles and the coder’s interpretations of the information. After initial coding of each article was complete, the senior members (CSF AND VPC) were randomly assigned to each article, reviewed and recorded information and discussed any discrepancies with the primary coder. Final consensus was reached among the full team through discussion for each article in the dataset.

Data analysis

To characterize the current state of the use of mixed methods research with youth and young adults in tobacco control research, the studies were examined to assess research methods and designs, research participants, sampling, approaches to analysis, and the tobacco control topic or behavior investigated. Each team member was assigned a section of the data codebook to analyze and provided a summary of their findings. During weekly meetings, each team member presented their findings and the remaining three members provided critical feedback. The result was an inductive analysis process that examined how specific features of each article holistically described the mixed methods research being conducted in tobacco control with young people.

Table 1 lists the 23 articles included in this methodological review. The articles were published between 2004 and 2015. The majority (n = 16) were published between 2006 and 2011 and by scientists from the U.S.A. (n = 13) and the United Kingdom (n = 7). We also identified mixed methods studies with young people conducted in India (n = 1), Israel (n = 1), and New Zealand (n = 1). The country affiliation of the authors of these studies may have differed from the location of the research such as Nichter.[ 38 ] The number of co-authors ranged from two to nine. The preponderance of the first authors were in the behavioral sciences (n = 14) including anthropology, psychology, and public health. Others were from the fields of medicine (n = 6), marketing (n = 2), and statistics (n = 1).

https://doi.org/10.1371/journal.pone.0183471.t001

Next, we describe the substantive content, youth engagement methods including recruitment, and mixed methods research design of these 23 articles.

Substantive content

Of the 23 articles reviewed, two articles reported on setting-specific smoking prevention programs[ 45 , 58 ] while five reported on perceptions of smokers and various tobacco products.[ 42 , 43 , 48 , 50 , 51 ] Five articles focused on smoking prevalence and behavior[ 39 , 46 , 47 , 59 , 60 ] while three explored the influences of tobacco marketing and branding.[ 38 , 44 , 54 ] Three articles [ 40 , 41 , 53 ] examined aspects of smoking cessation including services, two examined the use of media literacy to prevent smoking [ 49 , 57 ], and the remaining articles focused on cigar product modification,[ 55 ] motives for and against genetic testing[ 56 ] and the reliability and validity of self-reported data.[ 52 ] Furthermore, two-thirds (n = 14) of the articles reported on the use of cigarette smoking only and one reported on e-cigarette use and cessation only among middle school, high school, and college students.[ 46 ] The authors of five articles focused on the use of cigarettes and another tobacco product such as smokeless tobacco, cigars, hookah, bidis, and cloves. One article reported on the use of cigarettes and cannabis[ 47 ] and another on cigar modification.[ 55 ]

Youth engagement through recruitment and intervention

The populations of young people represented in the 23 articles were varied and reflected the international scope of tobacco research. Given that many countries worldwide prohibit sales and restrict access to youth for tobacco products[ 38 ] as well as the increasing denormalization of the social acceptability of smoking, engaging young people in tobacco control research is challenging.[ 38 , 61 ] Therefore, we examined how the investigators engaged their participants through the phases of planning, recruitment, and retention in the mixed methods research.

We were particularly interested in recruitment strategies used in these studies. The investigators utilized both passive (e.g., flyers, email, posters) and active recruitment methods (e.g., staff of the schools or community organizations, referrals, presentations to groups) to engage young people in their research studies ( Table 1 ). A little more than two-thirds (n = 16) utilized the school setting (i.e., middle or high school and college) for recruitment. The study samples reflected the ethnic distribution of the geographic locations, yet few studies had ample numbers of young people across racial and ethnic categories to perform group comparison analyses. The majority of the research teams used traditional recruitment methods (e.g., flyers and email) and the recruitment strategies supported the diverse research designs (cross sectional or longitudinal), sampling techniques (convenient or purposeful), data collection methods (quantitative or qualitative), and populations of interests (youth or young adults).

Furthermore, several of the articles engaged youth through the development, implementation, or evaluation of tobacco control interventions. [ 41 , 43 , 45 , 58 ] In this review, investigators were strategic in how they engaged youth in their research employing participatory and culturally-sensitive approaches. The participatory approaches varied in the studies. For example, Audrey et al [ 41 ] employed a peer nomination process and counseling techniques to identify and gain peer support for a student-led smoking prevention program. The most nominated students were trained as peer supporters and charged to recruit a wide range of friendship groups within a ten week period. The team reported 87% of those invited accepted the position, were trained, and completed their duties and 86% attended all follow-up sessions. Elsey and her research team [ 43 ] examined the feasibility and acceptability of using a social norms approach in five schools among seventh graders to prevent smoking. Findings demonstrated youth had significant misperceptions between self-reported and perceived smoking among their peers in the same grade. As a result, they collaborated with a local arts organization to both engage and assist students in the development of their own social norm campaigns to correct misperceptions of peer smoking. Investigators in this review also used culturally-sensitive approaches to engage young people in their research. For example, Goenka and colleagues[ 45 ] conducted a process evaluation of a classroom-based, tobacco prevention intervention in India. The intervention addressed both smokeless and smoked forms of tobacco among sixth to ninth graders and was tailored to Indian culture in context, content, and communication. The seven-session curriculum utilized mascots ( Disha and Deepak ), posters, and the creation of skits to sustain the interests of youth. Results indicated higher levels of student and peer leader communication and higher levels of student participation in discussion. Finally, one study used a combined participatory and culturally-sensitive approach. Sorensen et al[ 58 ] investigated the use of a workplace intervention to increase knowledge about the harms of smoking among teenage smokers. The intervention developed teen advisory boards to facilitate discussions about the negative impact of smoking on health with study participants. In addition, participants were recruited from and the study was implemented in 10 grocery stores in Boston, USA. As such, the culture of the workplace setting was an important component to the study design. Contrary to the team's predictions, most teen workers preferred to quit on their own, suggesting interventions with working teens may not be maximally effective.

Use of mixed methods research

Our analysis of the articles focused on the researcher’s reports of their use of mixed methods research. Consistent with our definition of mixed methods research, we examined the quantitative and qualitative components of each study and how the authors integrated these two components. Based on this information, we classified each study in terms of one of the five major mixed methods research designs discussed by Creswell and Plano Clark.[ 16 ] This information is summarized in Table 2 and discussed in the sections that follow.

Quantitative components.

Each of the reviewed mixed methods studies included a quantitative component that reflected the researchers’ decisions about sampling, collection, and data analysis. A range of sampling strategies were used for the quantitative component of the studies including purposive sampling,[ 40 , 44 , 46 , 60 ] probability or random stratified sampling,[ 49 , 54 ] multi-stage sampling,[ 55 ] and a combination of sampling methods.[ 47 ] We concluded that the remaining 15 studies utilized convenience sampling based on the described contextual information. The sample sizes of the quantitative strands of the studies varied greatly. The smallest sample included 15 parent/child dyads[ 50 ] and the largest study enrolled 10,370 participants.[ 41 ]

https://doi.org/10.1371/journal.pone.0183471.t002

The majority of the studies utilized a survey or a questionnaire for the quantitative data collection. Some studies combined a survey or questionnaire with another quantitative component such as a video activity,[ 49 ] ranking tobacco packaging,[ 54 ] and a salivary cotinine sample.[ 41 ] Two studies used “web assessments” to collect data at more than one time point.[ 39 , 59 ] Three studies utilized validated measures such as the Beck Depression Inventory and the Teen Smoking Questionnaire.[ 50 , 51 , 53 ] Several studies used more innovative ways to collect quantitative data, such as quantifying participants’ brand attribute associations to create a perceptual map.[ 44 ]

Qualitative components.

Each of the reviewed mixed methods studies also included a qualitative component that reflected the researchers’ decisions about sampling, collection, and data analysis. In terms of sampling, 13 studies used a subset of the quantitative sample for their qualitative data collection (e.g.,[ 41 , 48 , 53 ]). The subsets were chosen from the full sample size in different ways. One study relied on participants to volunteer for the qualitative portion and bring a friend,[ 60 ] whereas two studies used nominations to select which students to include in the qualitative phase of the study.[ 41 , 49 ] Nine studies used the same sample in the qualitative and quantitative components (e.g., [ 40 , 44 , 57 ]). The sample sizes for the qualitative components ranged from 18 to 531 participants.

Several studies combined qualitative methods to examine both the opinions of the group and individuals, such as focus groups and interviews.[ 53 ] Two studies utilized more than two qualitative methods, such as combining interviews, focus groups, informal discussions and ethnographic fieldwork.[ 38 ] Some studies employed uncommon combinations–for instance focus groups with media diaries[ 49 ] or semi-structured interviews with adjective cards to describe participants’ smoking experiences.[ 39 ] Many of the studies provided little information about the specific qualitative data analysis. Six studies directly mentioned performing a thematic analysis, all with varying levels of detail.[ 38 , 40 , 44 , 55 , 56 , 60 ] One study team cited a focus group guide[ 62 ] to describe their analysis[ 42 ], while another performed a descriptive content analysis on YouTube videos and a thematic analysis on the comments associated with each video.[ 55 ]

Reasons for and value of mixing methods.

Central to the use of mixed methods is integrating the quantitative and qualitative components of a mixed methods study. This integration often starts by the researchers specifying a rationale for mixing methods. Due to the complexity that mixed methods brings to research, it is important for researchers to describe the rationale and value that the mixed methods approach brings to a study.[ 63 , 64 ] Of the 23 articles reviewed, only three explicitly stated the authors’ reason for using mixed methods.[ 41 , 49 , 57 ] Therefore, we analyzed the remaining articles to uncover the implicit rationale for each study.

Common rationales included triangulation (n = 7) and complementarity (n = 7). Triangulation involves corroborating results from the quantitative and qualitative methods to obtain more validated conclusions.[ 63 ] One study[ 47 ] used mixed methods to triangulate patterns of behavior by comparing quantitative and qualitative data to identify and understand “culturally relevant meanings” that shaped participants’ substance use behaviors. Complementarity is used when quantitative and qualitative methods examine different aspects of the same phenomenon resulting in a deeper, more complex understanding of the topic.[ 64 ] For instance, investigators[ 56 ] discovered novel information from open-ended items on a questionnaire that explained differences in quantitative and qualitative findings regarding interest in genetic testing to determine cancer risk. Some studies used the results of one method to develop or inform the use of subsequent methods.[ 64 ] Examples of development include needing quantitative results to select participants[ 53 ] or using qualitative results to develop a new measure.[ 49 ]

Timing of components.

Timing refers to the order in which the qualitative and quantitative components were used in a mixed methods study.[ 16 , 65 ] Some of the articles did not include a clear description of when the strands were administered, which made timing challenging to determine. Based upon our interpretation, many studies used concurrent timing (n = 12), which occurs when researchers administer the qualitative and quantitative components concurrently. For example, researchers[ 44 ] collected quantitative (questionnaire) and qualitative (focus groups) data within the same session.

Nine studies used sequential timing, which occurs when researchers fully implement one phase (quantitative or qualitative) before the other so the second phase depends on the results of the first phase. For example, in a study to characterize and measure media health literacy,[ 49 ] the researchers first implemented the qualitative component and then used those results to create a questionnaire utilized in the subsequent quantitative phase. Two studies used multiphase timing by combining multiple concurrent and/or sequential components.

Priority describes the relative importance of the quantitative and qualitative components for addressing the overall study purpose.[ 16 ] In a mixed methods study, the two components may have equal weight in addressing the study purpose or one method may be given more weight than the other. We assessed studies as having quantitative priority (n = 11), qualitative priority (n = 7), and equal priority (n = 5). For example, Nichter et al[ 38 ] assigned priority to the quantitative methods in their study of perceptions of tobacco use and behavior associated with use because the article contained many tables of quantitative results, but no qualitative data illustrations. Audrey and colleagues[ 41 ] demonstrated qualitative priority because they used extensive analysis of peer leader diaries and focus group data to conduct a process evaluation of a peer support and intervention program. Equal priority was illustrated by a study of self-report measures of youth smoking in which researchers used data from questionnaires and semi-structured interviews to examine inconsistencies in reliability between measures.[ 52 ]

Mixing strategies.

Mixing strategies can be classified into three broad categories: merging, connecting, and embedding.[ 16 ] Merging occurs when the qualitative and quantitative results are combined during analysis. Connecting occurs when the results or findings from one strand are used to design the data collection of another strand. Embedding occurs when a secondary qualitative or quantitative component is added to an overall quantitative or qualitative design. For example, researchers may embed a qualitative component into an experiment or a quantitative component into a case study.

Eleven studies used merging to integrate results. For example, researchers[ 40 ] described the merging of the quantitative and qualitative data sets as, “Responses to questions on quitting from the structured questionnaire were analyzed in SPSS and contrasted with what was said in the interviews” (p.183). Another form of merging occurs when one type of data is transformed into another in order to facilitate analysis and comparison. Primack, Fine, and Yang[ 57 ] illustrated this type of mixing, as the researchers collected qualitative data and transformed the qualitative results into quantitative data in order to “illuminate results of the outcome evaluation” (p. 326).

Connecting was used as a mixing strategy in nine articles. For example, one team[ 53 ] selected participants for the qualitative strand based on results from the quantitative strand. The authors described the desire to interview individuals of “both genders who wanted to give up smoking and were in three older year groups and from a range of different schools” (p. 543). Once the quantitative results were collected, the researchers purposefully selected six representative schools and all students were invited to participate in the qualitative phase of the study.

Investigators used embedding in a study of a peer-led smoking intervention.[ 41 ] The qualitative data collection occurred within the context of an experiment and included diary entries, semi-structured interviews, and focus groups that were analyzed and used to augment the quantitative data and complete the process evaluation. Two studies used a combination of mixing strategies.[ 38 , 60 ]

Overall mixed methods design.

As indicated in Table 2 , we applied the mixed methods design typology of Creswell and Plano Clark[ 16 ] and identified examples of five different mixed methods designs: concurrent, explanatory sequential, exploratory sequential, embedded, and multiphase.[ 16 ] Of note, no study reported the use of the transformative mixed methods design discussed in Creswell and Plano Clark.[ 16 ] Eleven studies used a variation of the concurrent design. The concurrent design (Quan + Qual) typically entails administering the quantitative and qualitative strands concurrently, emphasizing each strand equally, and merging the results from both strands during the final analysis and interpretation for the purposes of triangulation and complementarity.[ 16 ] In a study on self-reported smoking data, survey and focus group results were given equal weight and used for comparison to test the reliability over time and across settings.[ 52 ]

Six studies used the explanatory sequential design (Quan→Qual). This design entails collecting and analyzing quantitative and qualitative data sequentially where the qualitative phase builds on the quantitative results and is used to help explain the quantitative results.[ 16 ] In a study of perceptions of cigarette packaging,[ 54 ] the investigators used an explanatory sequential design to first measure the impact of non-branded cigarette packs and then explain why the impact occurred by providing smokers the opportunity to explain and expand upon their quantitative results.

As described in Creswell and Plano Clark[ 16 ], the remaining six studies used the exploratory sequential approach (Qual→Quan),[ 46 , 49 , 58 ] the embedded QUAN(qual) design,[ 41 ] or the multiphase design (Quan→qual) →[qual+quan].[ 38 , 60 ]

Mixed methods reporting issues.

The main issues with reporting were: i) the use of clear language and ii) the scope of the information reported. In many of the articles, the authors did not clearly distinguish the different study components of their work. Some authors made explicit choices about their language use, which facilitated understanding the study’s components. For example, one research team[ 60 ] explicitly discussed their choice of terminology to distinguish study participants based on their participation in the quantitative or qualitative study strand. They wrote, "In this paper, in order to clarify whether we are referring to individuals who were surveyed or those who were interviewed, the former will be referred to as pupils , the latter as participants " (p. 1517, italics in original).[ 60 ] The other reporting issue was the scope of information that was included in the articles. Many studies were extensive and reported only a fraction of the studies’ information in the articles. Several strategies were noted to deal with the issue of scope in these situations. Some authors described the methods of the full study but then reported only a subset of the study results, such as results for one phase[ 42 , 54 ] or one wave of data collection.[ 57 ] Other authors specifically referred to information available outside of the article to supplement the description of the study’s methods, such as reported in other publications,[ 48 ] available online,[ 45 ] or to contact the corresponding author.[ 44 ]

Population-based systematic reviews examining access to tobacco,[ 66 ] smoking initiation,[ 67 ] tobacco control interventions and social inequalities,[ 68 , 69 ] longitudinal studies and smoking cessation trials,[ 70 , 71 ] and tobacco control policies[ 72 ] have been published for more than a decade. To our knowledge, this is the first methodological review of the use of mixed methods research designs in tobacco control being employed with youth and young adults–which we consider to be novel and an important contribution to the scientific literature. Our team identified 4,487 articles in five journals and synthesized evidence from 23 published articles representing 22 mixed methods studies in this review. The total yield is less than 1% of the original sample amplifying that mixed methods research represents a small, yet important body of work within tobacco control research with youth and young adults.

In summary, studies combining qualitative and quantitative methods were successfully being implemented with young people in tobacco control research both globally and across many disciplines (see [ 45 , 47 , 51 , 54 ]). In the field, investigators addressed relevant issues facing young people across the continuum of prevention, treatment, and cessation utilizing multiple variations of five of the six major mixed methods research designs.[ 16 ]

Of the 23 studies in this methodological review, the most common approach was some variation of the concurrent design. These findings are congruent with other methodological reviews that report the increased implementation of mixed methods designed studies across many disciplines[ 22 , 23 , 73 , 74 ] and the concurrent design identified as the most commonly utilized mixed methods design.[ 29 , 75 ] Additionally, although most of the investigators utilized traditional data collection procedures (i.e., surveys, focus groups, and individual interviews), a smaller group of the articles described other combinations of data collection methods, including video activities, biological sample collection, and perceptual mapping. Plano Clark [ 73 ] found similar results in a review of federally funded, health-related grant applications, yet noted that this was not the case in a review completed two years before in family sciences.[ 29 ] This suggests that as mixed methods research designs increase in popularity and use, the more intricate features of the designs may become.

As previously mentioned, mixed methods research can provide stronger inferences about a finding and offer insights regarding the phenomena under study that could not be gleaned from the quantitative or qualitative component alone.[ 16 , 17 , 25 ] This review uncovered several exemplars of such inferences for tobacco control. For example, Turner and colleagues[ 60 ] utilized a multiphase mixed methods research design in their examination of peer group influence on school smoking rates. While their qualitative findings complemented those of the quantitative analysis regarding attitudes of smoking among non-smoking girls, the mixed methods analysis provided a deeper understanding of the mechanisms operating among these groups of girls at the two socioeconomically different schools. Specifically, the processes of selection (i.e., modeling) were operating at one school, while those of influence (i.e., coercion) were found at the other school. A different, but equally salient example of the power of mixed methods study designs was found in the work of Mair et al.[ 52 ] This investigative team utilized a concurrent mixed methods research design with longitudinal qualitative and quantitative data to assess the reliability of self-reported smoking data among young people. Once they merged their study results during data analysis and interpretation, they learned that the ‘inconsistencies’ found statistically were actually important self-characterizations young people had of themselves overtime. As a result, they concluded that the ability to identify inconsistencies was a strength of the research. More importantly, the inconsistencies were not related to the self-reported data, but investigators’ tendencies to employ analytical models that are not germane to the lived experience of the young participants.

Although a few investigators reported creative ways to engage young people in their research–utilizing the arts, peer counseling, and culturally-appropriate mascots, [ 41 , 43 , 45 ],overall our sample lacked innovative exemplars of youth engagement. In an effort to protect the health of youth and young adults, tobacco control investigators must be as effective in engaging youth in research as the tobacco industry has been in attracting young people to the multitude of new tobacco products continuously emerging on the global market. Equally important are contextually appropriate and sensitive methods to examine the feasibility, process, and outcomes of such interventions. Our sample provides examples of using mixed methods research designs to do that [ 43 , 54 , 57 ] and these techniques should be applied to develop more innovative intervention approaches such as the use of new media strategies like social media platforms (i.e., Instagram or Youtube) or smartphone applications (i.e., Smokerface or QuitStart). Furthermore, the use of existing anti-smoking programs like the truth ® #FinishIt campaign and the Fresh Empire ® music contests and events to name a few, can be novel mechanisms in tobacco control intervention designs to engage young adult interests across the continuum of planning, recruitment, and retention.

While we applaud the successful use and variety of mixed methods designed studies in this review, we found unevenness and inconsistency in the reporting of this important work in the published tobacco control empirical literature. We reflect upon three broad, pertinent issues found in our review: lack of common terminology, lack of information, and the lack of clear descriptions and explanations of procedures that impact our ability to assess the quality and rigor of these published works.[ 22 ]

Lack of common terminology

Since the early 1990s, the field of mixed methods research has developed a wealth of resources regarding the conceptualization, design, and implementation of mixed methods studies.[ 16 , 25 , 73 , 76 – 78 ] Despite such resources, the researchers of the studies examined herein often did not use common terminology in the reporting of their work.[ 22 ] Case in point, unlike methodological reviews in other disciplines,[ 73 , 74 ] very few of the authors used mixed methods terminology such as ‘mixed methods’ or self-identified their study as ‘quantitative and qualitative’ in the description of their research. As reported in the Methods section of this article, because there was no consistent language to identify mixed methods studies, we decided to implement a broad, multifaceted search strategy in a stepwise procedure. Thus, we used simple key words in our search and then assessed a larger sample of articles to find information-rich examples of mixed methods studies. The lack of clear terminology hampers the proliferation of innovative techniques and prohibits learning. By understanding the many possible mixed methods approaches, including advantages and challenges, tobacco control investigators will be able to better choose and articulate their mixed methods designs. It is imperative that investigators use common terminology so that the work can be identified, assessed, and ultimately replicated in the pursuit of scientific advancement. We recommend that authors using mixed methods approaches name their approach “mixed methods research” and that they provide a formal mixed methods design name (e.g., explanatory sequential mixed methods design) as discussed in the literature and used in this review.[ 16 ]

Lack of information

Another overarching concern was the lack of information provided to effectively ascertain the study implementation procedures. For example, some authors mentioned the setting in which recruitment took place (i.e., a school or a workplace), yet did not describe the process by which young participants were recruited to the individual qualitative or quantitative component of the study. As a result, we could not easily determine the recruitment methods utilized by investigators and reported the lack of information in our findings (See Table 1 ). Another example was the very unbalanced descriptions of procedural and analytic methods between the quantitative and qualitative components of the study. Often investigators provided in-depth reports of the quantitative methods, analyses, and results, yet qualitative methods and analysis procedures were briefly described. In several cases, the amount of information provided about the qualitative component would not be sufficient for replication. O’Cathain et al[ 22 ] found this issue in their review of mixed methods studies in health services research and offered that it was indicative of the “historical dominance of quantitative methods in health services research.” One could argue that this is also true in the field of tobacco control research. Additionally, the lack of information impacts the ability to determine not only the quality of the qualitative and quantitative components, but the rigor of the overall study and the implications of the study findings. We recommend that authors using mixed methods approaches be consistent in their description of both the qualitative and quantitative strands of their study. They must ensure that they report the same information from each phase of the mixed methods design. Moreover, investigators can prioritize journals that recognize the richness of mixed methods designs and have less restrictive manuscript word limits.

Lack of clear explanations of mixed methods procedures

The last issue is the lack of clear descriptions and explanations of mixed methods procedures. In the effort to assess the quality of mixed methods research, several investigators have created criteria to examine the rigor of the study.[ 16 , 17 , 22 , 76 ] O’Cathain et al[ 22 ] provided guidelines for Good Reporting of a Mixed Methods Study (GRAMMS). These quality criteria focus on how to clearly report seminal features of the mixed methods study design including the rationale, design, and the integration or “mixing” of the methods. The use of the major design names, explanation of the purpose or rationale of the design, as well as descriptions of the timing, priority, and integration were frequently omitted among this collection of studies hindering our ability to assess the quality of the research study. For instance, some studies’ mixing approaches involved using data from a previous study or embedding the current study within a larger parent study. Without an understanding of the how these qualitative and quantitative strands were integrated, we could not ascertain the synthesizability or quality of the research.[ 79 ] This is the central purpose of mixed methods research designs–the integration of both components.[ 18 , 80 ]Currently, mixed methods research experts refer to this issue as the “integration challenge.”[ 81 ] Specifically, although integration is required in mixed methods research to go beyond the separate quantitative and qualitative components; it is challenging to do so. We conducted this methodological review to assess studies that attempted to take on the integration challenge and thus articles that reported on only one component of their study did not meet our inclusion criteria. Moreover, investigators must fully appreciate that each mixed methods design is best suited for specific purposes/rationales. Thus, to successfully respond to the study’s purpose and research questions, one must logically and consistently implement and describe the various aspects of the study thoughtfully. Bryman[ 80 ] suggests that if investigators self-reflect on the original purpose/rationale for conducting their work, they can then use this information to conduct an integrative analysis. In essence, can researchers demonstrate that their integrated findings have enhanced their understanding of the phenomena under study beyond that of a single component of the study?[ 80 ] We recommend that tobacco control investigators become familiar with and master reporting guidelines such as GRAMMS[ 22 ] to meet the field of mixed methods research reporting and quality criteria and to effectively describe the rigor of mixed methods designed studies. The ability to articulate the important features of mixed methods research is paramount to advancing its use in tobacco control. Finally, given the word limits of journal articles, researchers should write robust descriptions of their study methods and restrict their embellishment of the introduction or background sections of their manuscripts.

It is important to note that the aforementioned issues are impacted by word and space limits set by journals and its respective publisher. These are critically important parameters that have been reported as an important barrier to publishing mixed methods research.[ 82 ] While there are tradeoffs for what should be highlighted in an article, guidelines exist for effectively reporting mixed methods research[ 22 , 23 ] to further advance the use of mixed methods designs in the field.

Limitations

A few limitations of this methodological review must be considered in the interpretation of our results. Our work builds on established procedures for conducting rigorous methodological reviews within disciplinary contexts, including the journals selected for the review. To this end, these results represent articles published in five select journals; not all journals of the scientific tobacco control empirical literature and only those published in the English language. More importantly, our work contributes to understanding the current practices of tobacco control researchers with the use of the five major mixed methods designs identified by Creswell.[ 26 , 28 ] Articles that reported on only one component (quantitative or qualitative) of a study did not meet our definition of mixed methods research and was excluded from our sample. Additionally, the results represent a specific range in time during which our search was conducted. Although our methodological review covers a 12-year span (2004–2015), we did not include articles that have been published since January 2016.

Mixed methods research designs can be of great promise in tobacco control research efforts. The central purpose of mixed methods designs is the integration of the quantitative and qualitative components. To this end, mixed methods research designs have the ability to provide findings of integrated data that are beyond the limitations of quantitative and qualitative data alone. Investigators utilizing mixed methods study designs can contribute to the complexities of youth and young adult behavior and prevention, the treatment of tobacco-caused problems such as dependence, including symptoms of withdrawal and cessation. The application of mixed methods designs can also provide the opportunity to discover new areas of research as the field grapples to address the emergence of a plethora of novel, non-conventional tobacco products specifically targeting youth and young adults such as the co-use or multiuse of tobacco products and other substances among young people. In the future, we recommend that tobacco control investigators be explicit about the study’s purpose and research design and use clear language in describing the many facets of their mixed methods approach. This would include the priority given to the qualitative or quantitative strand of the design as well the rationale for integrating or mixing the two strands. We believe our work is the beginning of a rich and fruitful discussion regarding the most meaningful use of mixed methods study designs when working with young people. Ultimately, the field of tobacco control needs more innovative research methods including innovative interventions in order to achieve the insights necessary to understand and overcome the complex issues of tobacco use among the world’s youth. Mixed methods research gives tobacco control researchers a powerful methodological strategy for taking on this challenge.

Supporting information

S1 file. study dataset..

https://doi.org/10.1371/journal.pone.0183471.s001

S2 File. PRISMA 2009 checklist.

https://doi.org/10.1371/journal.pone.0183471.s002

Acknowledgments

The authors would like to thank Ms. Joanne D’Silva for a previous review of the manuscript. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of funders.

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Access, acceptance and adherence to cancer prehabilitation: a mixed-methods systematic review

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• Published: 06 May 2024

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• Tessa Watts 1 ,
• Nicholas Courtier 1 ,
• Sarah Fry 1 ,
• Nichola Gale 1 ,
• Elizabeth Gillen 1 ,
• Grace McCutchan 1 ,
• Manasi Patil 1 ,
• Tracy Rees 1 ,
• Dominic Roche 1 ,
• Sally Wheelwright 2 &
• Jane Hopkinson 1  

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The purpose of this systematic review is to better understand access to, acceptance of and adherence to cancer prehabilitation.

MEDLINE, CINAHL, PsychINFO, Embase, Physiotherapy Evidence Database, ProQuest Medical Library, Cochrane Library, Web of Science and grey literature were systematically searched for quantitative, qualitative and mixed-methods studies published in English between January 2017 and June 2023. Screening, data extraction and critical appraisal were conducted by two reviewers independently using Covidence™ systematic review software. Data were analysed and synthesised thematically to address the question ‘What do we know about access, acceptance and adherence to cancer prehabilitation, particularly among socially deprived and minority ethnic groups?’

The protocol is published on PROSPERO CRD42023403776

Searches identified 11,715 records, and 56 studies of variable methodological quality were included: 32 quantitative, 15 qualitative and nine mixed-methods. Analysis identified facilitators and barriers at individual and structural levels, and with interpersonal connections important for prehabilitation access, acceptance and adherence. No study reported analysis of facilitators and barriers to prehabilitation specific to people from ethnic minority communities. One study described health literacy as a barrier to access for people from socioeconomically deprived communities.

Conclusions

There is limited empirical research of barriers and facilitators to inform improvement in equity of access to cancer prehabilitation.

Implications for Cancer Survivors

To enhance the inclusivity of cancer prehabilitation, adjustments may be needed to accommodate individual characteristics and attention given to structural factors, such as staff training. Interpersonal connections are proposed as a fundamental ingredient for successful prehabilitation.

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Introduction

Prehabilitation is a core component of supportive care for health and well-being during cancer survivorship. It aims to improve cancer treatment outcomes and long-term health by preparing people awaiting cancer treatments, not only surgery, through support for physical activity, nutrition and emotional well-being either alone or in combination, and from the point of diagnosis [ 1 ]. Growing international evidence indicates that, in specific cancers, engagement with either uni or multimodal prehabilitation interventions can improve individuals’ pre-treatment functional capacity [ 2 , 3 ], reduce treatment-related complications [ 4 , 5 , 6 ], ease anxiety [ 7 ] and enhance post-treatment recovery [ 8 , 9 ]. As the evidence base develops and momentum for prehabilitation grows, the need to embed prehabilitation as the standard of care across different cancers has been recognised [ 10 , 11 , 12 ]. In some regions, multimodal prehabilitation is now offered as the standard of care in certain cancers, particularly lung [ 13 ] and colorectal [ 14 ].

Internationally, there are persistent health disparities following cancer treatment. Treatment and survival outcomes are poor among people from socioeconomically deprived communities and some minority ethnic groups compared to socioeconomically advantaged and majority groups [ 15 , 16 , 17 ]. To ease the overall social and economic impact of cancer on individuals and society, and to reduce the societal and healthcare costs of suboptimal treatment outcomes, it is important to identify the facilitators of and barriers to individuals’ engagement with interventions. People from socioeconomically deprived communities and some minority ethnic groups are known to be underserved in prehabilitation interventions [ 1 , 18 ]. Accordingly, to better understand reasons for informed action, this mixed-methods systematic review aims to identify, critically appraise and synthesise international empirical evidence of the facilitators of and barriers to access, acceptance  and adherence of cancer prehabilitation. For this review, prehabilitation is defined as proactive and preventative for all cancer treatments (not only surgery and including neoadjuvant) and includes interventions to support physical activity, nutritional intake or psychological well-being, alone or together, carried out at any time before a course of treatment begins.

Review question

What is known about access, acceptance and adherence to cancer prehabilitation, particularly among socially deprived and minority ethnic groups?

The systematic review was informed by the Joanna Briggs Institute (JBI) mixed-methods systematic reviews (MMSR) methodology [ 19 ]. A convergent, integrated approach to data synthesis and integration was adopted [ 19 , 20 ]. The review was registered in PROSPERO CRD42023403776) on 3 March 2023 and is reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines [ 21 ]. Ethical approval was not required.

Database searches

In collaboration with a specialist health service systematic review librarian, the search strategy was developed using medical subject headings (MeSH) and keywords including and relating to cancer, prehabilitation, inequity, inequality, socioeconomic deprivation, ethnic groups and health services accessibility, and then tested and refined. The electronic databases Ovid SP MEDLINE, CINAHL via EBSCO host, PsycINFO, Ovid SP EMBASE, Ovid Emcare, Allied and Complementary Medicine (AMED), Physiotherapy Evidence Database (PEDRo) and Cochrane Central were systematically searched by EG for studies published in English between January 2017 and May 2023. The search strategy was tailored for each database and detailed in online resource (Supplementary information 1 ). Supplementary searches of grey literature using the Overton, Dimensions and Proquest dissertation and theses databases (PQDT), and relevant organisational websites were conducted. Reference lists of papers retrieved for full review were scrutinised for potentially useful papers not identified through the database searches.

Selection criteria

The PICO framework was used to guide inclusion criteria on population (P), Intervention (I), comparators (C) and outcomes (O) and context (Co). It enabled identification of primary qualitative, quantitative and mixed-methods research studies about prehabilitation, published in peer-reviewed journals. Eligibility criteria were used during study selection to screen this body of literature for empirical data about barriers and facilitators of prehabilitation. Non-empirical, opinion pieces, theoretical and methodological articles, reviews and editorials were excluded, as were studies involving children, adolescents and focusing on end-of-life care.

Study selection

All search results were stored in Endnote™. Following deduplication, results were imported into Covidence™ systematic review management software. For study selection, standardised systematic review methods [ 22 ] were used. All project team members were involved in study screening and selection. Firstly, two reviewers independently screened all returned titles and abstracts. Based on eligibility and relevance, these were sifted into ‘yes’, ‘no’ or ‘maybe’ categories. Disagreements were resolved by a third reviewer. Where a definite decision could not be made, full text was retrieved and assessed. Secondly, full text of all potentially relevant abstracts was retrieved and independently assessed for inclusion by two reviewers against the eligibility criteria. Arbitration by an independent reviewer in the event of disagreement was not required at this stage. Reasons for exclusion at full text review were recorded.

Quality assessment

Two reviewers independently assessed the quality of included studies via Covidence ™ using the Mixed Methods Appraisal Tool (MMAT) version 18 [ 23 ]. The MMAT was constructed specifically for quality appraisal in mixed studies reviews and is widely used [ 23 , 24 ]. Within a single tool, Version 18 of the MMAT can be used to appraise the methodological quality of five broad categories of study design, namely qualitative, randomised controlled trials, non-randomised, quantitative descriptive and mixed methods studies. The MMAT comprises two screening questions to establish whether or not the quality appraisal should proceed and 25 core questions: five criteria which mostly relate to the appropriateness of study design and approaches to sampling, data collection and analysis relevant to each of the five study designs [ 23 ]. Each criterion is assessed as being met (Yes) or not (No). There is also scope to indicate uncertainty. A third reviewer independently moderated all quality assessments for accuracy.

Data extraction

Two reviewers independently extracted data systematically via Covidence™ using an adapted, piloted JBI mixed-methods data extraction form. Information extracted included study author, aim, year and country of publication, setting, intervention type, design, sample, data collection, analysis, data relating to prehabilitation facilitators and barriers and, as relevant, data on intervention for support of access, acceptance or adherence to prehabilitation. A third reviewer cross-checked the data extraction tables independently for accuracy and completeness.

Data synthesis and integration

All extracted findings were imported into Microsoft Excel. Quantitative data were ‘qualitised’ into textual descriptions of quantitative results to enable assimilation with qualitative data [ 25 ]. To analyse and synthesise all findings, thematic synthesis [ 26 , 27 ] was used. Thematic analysis is an established process involving the identification and development of patterns and analytic themes in primary research data. Two reviewers coded the findings and then grouped related codes into preliminary descriptive themes which captured patterns across the data describing barriers to and facilitators of cancer prehabilitation [ 26 ]. Preliminary themes were discussed with a third reviewer. Themes were then further combined and synthesised to generate three overarching analytical themes relative to the review question [ 26 ].

Figure 1 shows the PRISMA flow chart of search results. Following the first and second round screening, 56 papers published between 2017 and 2023 were included: 33 quantitative; 14 qualitative and nine mixed methods.

PRISMA 2020 flow diagram for new systematic reviews which included searches of databases, registers and other sources. *Consider, if feasible to do so, reporting the number of records identified from each database or register searched (rather than the total number across all databases/registers). **If automation tools were used, indicate how many records were excluded by a human and how many were excluded by automation tools. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. 10.1136/bmj.n71. For more information, visit: http://www.prisma-statement.org/

A synopsis of study characteristics and the quality appraisal outcomes is found in Table 1 . Brief narrative summaries of the included papers’ findings of relevance to the review question, namely access, acceptance and adherence of prehabilitation interventions, are provided in the online supplementary information (supplementary information 2 ).

Study characteristics

Of the 32 quantitative studies reviewed, there were eight randomised controlled trials, two single-arm multi-centre trials, seven cohort studies and one cross-sectional survey. Others were pilot ( n = 3), feasibility ( n = 7), observational ( n = 1) and prevalence ( n = 1) studies, with one non-randomised trial and one audit. Qualitative studies ( n = 15) mainly used a broad qualitative approach ( n = 12), one used phenomenology, one participatory action research and one used a cross-sectional survey. Nine studies used mixed methods.

Study populations

The majority of included studies were conducted in Europe ( n = 33) (UK ( n = 19), Netherlands ( n = 4), Denmark ( n = 3), Spain ( n = 1), France ( n =1), Portugal ( n = 1), Belgium ( n = 1), Slovenia ( n = 1), Norway ( n = 1) and Sweden ( n = 1)). Eleven were conducted in North America (Canada ( n = 8), United States ( n =3)), and eight were from Australia. The remaining studies were from Japan ( n = 1) and China ( n =1), and two studies were conducted across two countries, Australia and New Zealand and the UK and Norway. Studies focused on prehabilitation in different settings including hospitals ( n = 12), local communities (including universities and local gymnasiums), individuals’ homes ( n = 14) and outdoors ( n = 1). Ten studies reported a hybrid, home and hospital approach to prehabilitation, whilst digital prehabilitation was reported in nine studies. Fifty-three studies were conducted in a range of cancers. Of these, 41 reported data for a single cancer site: colorectal ( n = 11); gastrointestinal ( n = 9); lung ( n = 7); haematology ( n= 4); breast ( n = 3); head and neck ( n =2); bladder ( n = 2) prostate ( n =1) and a range of abdominal surgeries ( n = 3). In 12 studies, cancer sites were pooled. Three studies focused on healthcare professionals ( n = 2) and key stakeholders ( n = 1).

Methodological quality

There was considerable variation in the methodological quality of the 56 studies included. Twelve studies, 10 qualitative and two quantitative, satisfied all the MMAT criteria [ 23 ]. Fourteen studies, nine mixed methods, two qualitative and three quantitative, satisfied just one or two criteria. Thus, data were extracted from a body of literature where one-fifth (21%) of publications were about research of the highest quality, defined as having met 100% of the MMAT criteria [ 23 ]. Detailed results of the MMAT quality assessments are found in supplementary information (supplementary information 3 ).

Thematic synthesis

The thematic synthesis identified three cross-cutting analytic themes. As illustrated in Figure 2 , these themes reflected individual, structural and interpersonal facilitators of and barriers to access, acceptability and adherence of cancer prehabilitation:

Overarching themes

Theme 1 The influence of individual drivers of cancer prehabilitation engagement

Theme 2 Providing acceptable cancer prehabilitation service and interventions

Theme 3 Interpersonal support – the unifying golden thread

Interpersonal support was the unifying golden thread as it facilitated the fit between the individual and the structural for access to, acceptance of and adherence to prehabilitation.

Theme 1. The influence of individual drivers of cancer prehabilitation engagement

Factors at the level of the individual were found to shape prehabilitation access, acceptance and adherence. These included perceived need and benefits, motivations, health status and everyday practicalities.

The perceived need for and potential benefits of prehabilitation

A key stimulus for accessing and adhering to cancer prehabilitation was a belief that engagement might confer benefit. Influences included clinicians’ prehabilitation endorsement and encouragement [ 12 , 13 , 42 , 52 , 55 , 59 , 60 , 65 , 66 , 71 ], positive prior personal experiences of routine physical activities [ 60 , 69 , 70 , 77 ] and weight loss programmes [ 77 ], other patients’ support [ 12 , 71 ] and the perceived need to improve personal fitness [ 60 , 63 ]. Some participants in UK-based studies believed they had a social responsibility to engage in prehabilitation [ 63 , 64 ] as enhanced fitness would benefit healthcare services financially [ 12 , 64 ].

The money, the cost per night in the hospital, goodness knows how much that costs and the follow-up with all the doctors, the dieticians and everyone else behind (….). It’s (prehabilitation) saving the NHS thousands and thousands of pounds of money ([ 64 ] p.4).

Several studies indicated some individuals perceived prehabilitation to be beneficial in that interventions provided a welcome distraction from their illness and situation [ 64 , 72 , 74 ]. Benefit was understood in terms of being psychologically and physically prepared for cancer treatments, potentially enhancing post-treatment recovery and survival [ 12 , 55 , 60 , 63 , 64 , 66 , 67 , 68 , 70 , 71 , 74 ].

I benefited a lot from it because it caught me in that time just after diagnosis when things were pretty scary and pretty awful and I felt like it was one of the key pieces of my plan for positivity during this whole thing, because it was setting a tone for recovery ([ 74 ] p. 8)

Yet, it was also clear that some individuals were disinterested in engaging with prehabilitation [ 56 , 58 , 66 , 74 , 80 ]. Some studies suggested a connection between imminent surgery and patients’ perceptions of little benefit of prehabilitation in the short timescales [ 47 , 54 , 63 , 69 , 77 , 79 ]. Some individuals felt that making additional hospital visits for prehabilitation was onerous [ 54 ]. Others were unaccustomed to or did not want to exercise [ 36 , 70 ] or perceived exercise as demanding [ 41 ], particularly when combined with cancer treatment [ 51 ]. Some considered their existing fitness levels [ 61 , 63 ] and diet [ 61 ] sufficient. A sense of low perceived benefit of or need for prehabilitation meant it was considered a low priority [ 36 ].

Personal motivators

A cancer diagnosis [ 71 , 77 ] conjoined with the desire to improve fitness [ 63 , 64 , 72 ], survive surgery [ 63 , 64 ] and to be present for and enjoy their families [ 64 ] were influential motivators for individuals’ proactively effecting lifestyle change and thus engagement with prehabilitation. Having accessed prehabilitation, exercise logs and diaries [ 64 , 68 , 74 ], personal goal setting [ 61 , 64 , 71 ], progress self-monitoring [ 61 , 64 , 68 , 71 , 77 ], activity tracking and objective feedback [ 56 , 60 ] motivated individuals to maintain participation. They inspired them to remain on track, enabled them to realise their progress, build self-efficacy for prehabilitation adherence [ 60 , 70 , 73 , 76 , 77 ] and, through a process of cognitive reframing, regain a sense of control [ 71 ].

Now I have a feeling of control over my body . . . I don’t want cancer to define me. [ 71 ]

Nonetheless, one study reported that motivation to access prehabilitation may be negatively affected by low levels of health literacy, which is associated with socioeconomic deprivation [ 46 ]. Furthermore, sustaining motivation to continue prehabilitation could be challenging [ 43 , 45 , 58 , 64 , 70 , 74 ], especially when faced with unanticipated setbacks such as delayed surgery [ 57 ] or insufficient peer support [ 64 ].

The enduring problems of health limitations

Individuals’ physical and psychological health status influenced prehabilitation access and adherence, particularly when there was a perception of insufficient on-going professional [ 61 , 72 , 73 ] and family support [ 31 ], and interventions were located away from home. Pancreatic cancer [ 33 ] adversely affected individuals’ access to prehabilitation. Furthermore, physical health problems limited some individuals’ ability to travel and thus access hospital-based prehabilitation [ 54 , 59 , 71 ]. Symptoms experienced and perceived health status influenced individuals’ prehabilitation adherence. Reported adherence barriers included physical symptoms [ 61 , 67 , 70 , 72 , 73 , 81 ] such as fatigue [ 45 , 50 , 57 , 70 , 73 ], pain [ 40 , 45 , 57 , 59 , 70 , 71 , 73 ], digestive problems [ 30 , 35 , 39 , 47 , 55 , 67 ] and feeling unwell [ 40 , 43 , 64 , 79 ]. In addition, functional limitations [ 63 , 70 ] associated with comorbidities [ 31 , 37 , 40 , 49 , 51 , 57 , 64 , 70 , 77 ], disease status [ 37 , 41 ], pre-surgery neoadjuvant treatments [ 37 , 53 , 64 , 70 , 81 ] and mental health problems [ 35 , 39 ] were all reported to negatively affect individuals’ ability to engage with and adhere to prehabilitation, particularly in terms of physical activities.

Several studies reported that psychological distress had a negative effect on prehabilitation access and adherence [ 59 , 61 , 70 , 73 ]. Described by a participant in one study [ 63 ] as ‘dark moments’, as anxiety and stress were often connected with attending hospitals [ 71 ]. In addition, several studies reported that individuals felt overwhelmed, both generally [ 42 , 57 , 74 ] and emotionally [ 12 , 70 ], in advance of their treatments. Information overload [ 62 ] and competing personal matters which required their attention pre-treatment [ 70 , 80 ] contributed to the sense of feeling overwhelmed.

The challenges of everyday life

Across studies, insufficient time for prehabilitation was frequently reported [ 40 , 50 , 51 , 55 , 58 , 66 , 71 , 72 , 74 , 77 , 78 ]. Some individuals described competing priorities in the short space of time between diagnosis and treatment [ 49 , 57 , 59 , 70 , 79 ]. This was partly due to putting affairs in order, prioritising family time [ 61 ] or treatments being scheduled earlier than originally planned [ 35 , 54 , 55 ]. Others were constrained by their employment [ 51 , 70 , 73 , 80 ] and family responsibilities, including caring for other family members [ 55 , 58 , 70 ]. Additional barriers to prehabilitation engagement included geographical distance to hospitals delivering prehabilitation [ 28 , 32 , 41 , 51 , 54 , 57 , 63 , 74 ]; transport difficulties [ 29 , 49 , 51 , 54 , 58 , 60 , 66 , 79 ] and associated financial costs [ 51 , 66 , 71 ]; inclement weather, particularly in relation to prehabilitation with outdoor exercise components [ 45 , 57 , 64 , 70 , 73 , 74 ]; low digital literacy [ 34 , 42 , 76 ]; restricted or limited access to and problems with technology [ 42 , 56 , 76 , 80 ], notably broadband [ 45 , 79 ] and experiencing physical discomfort with exercise equipment [ 60 , 64 ].

Theme 2. Providing acceptable cancer prehabilitation service and interventions

The prehabilitation environment, mode of delivery (which might be technological) and the perceived utility of interventions were important facilitators of access [ 34 , 48 , 57 , 66 , 71 , 75 , 80 ] and adherence [ 36 , 45 , 48 , 61 ] and influenced acceptance [ 36 , 52 , 61 , 64 , 69 , 71 , 77 , 80 , 81 ].

The value of home-based prehabilitation

Home-based prehabilitation interventions with remote professional supervision and support were accepted for their convenience [ 38 , 74 ], capacity to motivate [ 38 , 61 , 64 , 73 ] and build self-efficacy [ 40 , 61 , 64 , 73 ] and perceived benefit [ 40 , 69 , 74 ]. Specifically, individuals reported that home-based prehabilitation enabled them to integrate interventions into their everyday lives [ 61 , 64 ]. Exercising in the safe, private, space of home was enjoyable [ 36 , 66 ], could help with overcoming self-consciousness and engendered a sense of control [ 61 , 64 ].

I couldn’t go to the gym any longer. I can’t very well be running out to the toilet the whole time. So, I had to find something else, so it was that [static bike at home]. ([ 61 ] p. 206) …I don’t want to do it [prehabilitation] in a hospital because I think it then becomes really competitive. And people are, like, if they can’t do it, they feel…. They would feel like, ‘Oh, I’m not strong enough…’ you know what I mean. It might depress them. Whereas if you do it in the house, you can do it at your own pace, there’s nobody watching over you and everything. [ 64 ]

Home-based prehabilitation interventions were important facilitators of access [ 48 , 66 ] and adherence [ 36 , 48 , 61 ]. The provision of portable exercise equipment such as resistance bands enabled sustained adherence, particularly when individuals were temporarily away from home [ 74 ]. Some individuals welcomed the freedom and flexibility of home-based prehabilitation [ 72 ]. Yet despite being provided with resources to monitor [ 34 , 42 , 52 , 64 , 66 , 76 ], supplement and continue physical activity at home [ 48 , 63 , 66 , 74 , 77 ], insufficient in-person healthcare professional engagement and encouragement could mean adherence was often difficult to monitor [ 69 , 81 ] and sustained intervention adherence could be challenging [ 28 , 63 , 64 ] and afforded a low priority by individuals [ 61 , 72 , 73 ].

There had to be real pressure, there really had! And then if suddenly they were not around (the health professionals), then I’m not sure I’d finish it. That’s how I am. You have to keep an eye on me. [ 72 ]

Navigating the technological space of tele-prehabilitation

Sometimes referred to as ‘tele’ or ‘digital’-prehabilitation, technology-based uni and multimodal home-based prehabilitation capitalised on internet and/or telephone communication services and was delivered using smartphones, videos, wearable technology, tablets, mobile applications, video platforms and secure video conferencing [ 34 , 36 , 42 , 45 , 56 , 70 , 71 , 76 , 80 ]. In terms of acceptability, individuals perceived home-based, tele-prehabilitation programmes as accessible, particularly during the SARS-CoV-2 pandemic [ 34 , 71 , 80 ]:

Having prehabilitation outside of the hospital setting made things easier. I wasn’t feeling good with the pain and couldn’t travel too far. Could also do it in my own time ([ 71 ] p. 646)

Home-based tele-rehabilitation was also perceived as motivating [ 36 , 45 , 56 , 76 ], conferred benefit [ 34 , 36 , 45 , 56 , 80 ], particularly when personalised [ 34 , 45 , 56 , 71 ] and reduced transport-associated costs [ 80 ].

Sustained tele-prehabilitation engagement was aided by the provision of smartphones [ 56 , 76 ], tablets with relevant applications and content downloaded [ 34 ], training watches [ 34 , 56 , 76 ], supplementary information and alternate web browser pathways for those without access to or with low digital literacy [ 42 ] and integrated digital training and support during the intervention’s implementation [ 34 , 36 , 42 ].

I would not have been able to endure the treatments and the surgery thereafter had it not been for the continuous support I was receiving through the digital platform. [ 34 ]

Reported barriers were primarily intervention specific. They included technical [ 45 , 80 ] and device connectivity issues [ 34 , 76 ], broadband and website interface problems, particularly for individuals unaccustomed to using technology [ 45 ]. Negative views of mobile mindfulness apps [ 56 ] and equipment aesthetics [ 76 ] were also described.

The perceived utility of prehabilitation interventions

Interventions that were perceived as being accessible in terms of their user-friendliness [ 34 , 56 , 74 , 76 ] and appropriately designed to meet individuals’ needs, preferences and capabilities in terms of their structure [ 40 , 52 , 60 , 68 , 74 , 77 , 78 ], notably coherence [ 36 , 38 , 45 , 75 , 76 ] and components [ 38 , 54 , 55 , 64 , 69 , 74 ], including nutritional supplements [ 44 , 54 , 55 , 67 ], enhanced acceptability. The acceptability of prehabilitation interventions was reflected in the expressions of gratitude [ 12 ] and the positive ways in which interventions were variously described by individuals in some studies [ 12 , 38 , 58 , 64 , 74 ] as ‘excellent’, ‘very good’, ‘great’, ‘brilliant’, ‘hugely beneficial’ and ‘fun’. Some would even recommend home-based prehabilitation to people preparing for cancer treatments [ 52 , 63 , 68 , 74 ]. However, one study [ 42 ] reported that unfamiliarity with the English language had a negative impact on access, whilst in another study [ 56 ], individuals reported adhering to protein targets challenging.

At an individual level, the availability [ 61 ] and extent of integrated healthcare professional supervision and support was perceived to enable intervention access [ 75 ] and adherence [ 42 , 60 , 61 , 64 , 66 , 68 , 69 , 74 , 78 ], particularly when this was personalised [ 34 , 45 , 56 , 65 , 68 , 71 , 78 ]. Unpalatable nutritional interventions had a negative effect on intervention adherence [ 30 , 50 ], and it was reported that inspiratory muscle training devices could be difficult for individuals to use [ 38 ].

Healthcare professionals reported organisational barriers to implementation, and thus individuals’ access to, acceptance of and adherence with prehabilitation. These barriers included workforce capacity limitations [ 12 , 65 , 75 , 79 , 81 ], including insufficient embedded specialist prehabilitation professionals [ 69 , 81 ], delayed or insufficient referral to prehabilitation [ 33 , 44 , 63 ], disconnect in cross-boundary systematic service delivery and communication [ 12 , 28 , 75 , 81 ], inadequate funding [ 12 , 65 , 79 , 81 ] and awareness of local prehabilitation provision, uncertainty regarding what constitutes prehabilitation among some healthcare professionals [ 28 , 79 , 81 ] and space and time constraints [ 69 , 81 ] together with insufficient equipment [ 28 ] in hospital settings to deliver interventions [ 81 ].

Theme 3. Interpersonal support: the unifying golden thread

Across the studies reviewed, the unifying golden thread was interpersonal support, for this was an important, valued enabler of prehabilitation access [ 64 ] acceptance and adherence. It was reported that interpersonal support was derived from family and friends [ 12 , 45 , 60 , 61 , 64 , 70 , 73 ], prehabilitation healthcare professionals [ 42 , 51 , 55 , 60 , 61 , 63 , 64 , 66 , 69 , 71 , 75 , 78 ], prehabilitation peers [ 51 , 59 ], volunteers [ 79 ] and in-person and online peer support groups [ 71 , 79 ]. When embedded within interventions, a network of interpersonal support helped to sustain prehabilitation adherence, particularly in relation to physical activity [ 59 , 60 , 68 , 72 , 79 ]. During what could be challenging times, the interpersonal support experienced during prehabilitation enhanced interventions’ acceptability [ 52 , 60 , 63 , 68 ].

The active involvement of family during physical activities such as walking and exercise routines was reported to generate a sense of companionship, encouragement and motivational and psychological support [ 34 , 60 , 61 , 64 , 70 , 71 , 77 ]. In these ways, prehabilitation interventions with embedded family support enhanced their acceptability [ 52 ].

My wife did the same ones with me so there were two of us doing the same stuff. We did the walks together. Then we would both do the exercises. So that was good company. [ 64 ]

Findings reported in one study [ 31 ] indicated that living alone could have a negative effect on prehabilitation adherence.

The acceptability of prehabilitation interventions was enhanced by relevant healthcare professionals’ supportive dialogue in the shape of information, personalised encouragement, validation and timely, constructive feedback on individuals’ engagement, progress and performance [ 69 , 77 ], signposting to other support services [ 63 ] and broader emotional support [ 77 ]. In addition to sustaining prehabilitation behaviours through collaboration, activation and motivational support [ 60 , 61 , 71 , 72 , 77 , 78 ], healthcare professionals’ presence instilled a sense of trust [ 71 ], comfort [ 51 ] and safety [ 38 , 62 , 63 ] and reduced feelings of social isolation [ 71 ]. The need for and importance of supportive dialogue with healthcare professionals during prehabilitation was identified by participants in one study investigating individuals’ experiences of multimodal prehabilitation delivered via a leaflet and with no embedded healthcare professional support [ 73 ].

I have only been a number. Like I was a garden shovel with a barcode that you scanned at the cash register. There is no one who thinks about what this means for one’s self-understanding–- just to be regarded as a disease [...] There is no one asking about the human being behind it. It is insane [ 73 ]

For some participants, peer support in the shape of information sharing was beneficial and enabled prehabilitation access [ 63 , 71 ]. Integrated group or one to one peer support was reported to enhance an intervention’s acceptability [ 12 , 63 ]. In part, this was because individuals did not always want to engage their families, and peer support reduced their sense of isolation [ 71 ]. Peer support was reported to be beneficial in terms of interaction with others in a similar situation, thereby lending individuals’ social, emotional and motivational support, enabling them to remain on track with their prehabilitation programme [ 51 , 59 , 64 , 66 , 71 ].

Exercising in a group motivates. Let new patients exercise with other patients who are further along and have more experience exercising. They (experienced patients) can then tell them, Yes, you will get muscle aches, but they will subside too. [ 59 ]

It was clear from some studies that the absence of peer support in prehabilitation interventions was lamented [ 64 , 71 ], with some participants exercising agency and accessing online patient forums to derive required support [ 71 ].

This review reports findings from across the globe regarding facilitators of and barriers to access, acceptance and adherence of cancer prehabilitation. The findings draw attention to cross-cutting themes at individual and structural levels and interpersonal factors that connect the levels. As illuminated in Fig. 2 , the multifaceted facilitators and barriers underscore the complexity of cancer prehabilitation access, acceptance and adherence.

This review found interpersonal connections, support either directly obtained from peers, family, healthcare professionals or via digital connectivity, can facilitate a fit between the individual factors and structural factors that affect engagement with prehabilitation. Examples include encouragement from a spouse willing to engage in a recommended physical activity with the patient, practical help with digital technology, peer support during group prehabilitation and health professional supervision. Support through these interpersonal connections may be a core ingredient for successful access, acceptance and adherence. This proposition should now be explored and tested. There may be sub-groups with need or preference for certain sources of interpersonal support. Our review was designed to find out ‘what is known about access, acceptance and adherence to cancer prehabilitation, particularly among socially deprived and minority ethnic groups’ because of the known benefits from prehab for post treatment recovery [ 8 , 9 ]. It found no empirically based analysis of prehabilitation access, acceptance or adherence by people from these groups.

The individual and structural context

This review revealed individual factors enabling or impeding prehabilitation access, acceptance and adherence include personal beliefs and understandings about potential harms or benefits; motivations, for example finding enjoyment in participation; health status and everyday practicalities such as time and transport availability. Structural factors identified included the availability of knowledgeable and supportive health professionals and/or people affected by cancer’ service organisation, such as the availability of a prehabilitation multidisciplinary team and the place and space of service delivery, for example, if it was available in the community.

Individual and structural level factors affecting access to cancer treatment and care are widely reported [ 82 , 83 , 84 , 85 ]. Some are proposed to be modifiable for improved health outcomes in groups at risk of poor health because of poverty and/or discrimination based on age, race, ethnicity or gender [ 84 ]. The findings of the review are consistent with this wider literature on service access, acceptance and adherence. It is notable that although our search was designed to identify all literature about access, acceptance and adherence to cancer prehabilitation from 2017 to 2023, we found no analysis of structural differences. The differential experience of people from structurally vulnerable groups, for example, those who are socioeconomically deprived or from minority communities, had not been considered. Yet, evidence indicates that cancer rehabilitation services are underutilised by people from socioeconomically deprived communities [ 86 , 87 ] and ethnic minorities [ 88 ]. We also know patient engagement with prehabilitation is variable [ 89 ], and third sector organisations claim people from socioeconomically deprived communities, which include people from some ethnic minorities, are underserved by prehabilitation services [ 1 ]. Exploration and understanding of difference in prehabilitation experiences across social groups is needed if support for access, acceptance and adherence is to achieve equity in health outcomes.

Interpersonal connections linking individual experience and structural context

This review identified that it was people, namely peers, family members and friends, who, through their support, influenced the extent to which individual and structural level factors were obstacles or enablers of prehabilitation. In the relational space between individual experience and the infrastructure in place to enable prehabilitation, these people were supportive actors, influencing individuals’ access to, acceptance of and adherence to prehabilitation.

International studies have revealed that interpersonal support is related to mental and physical health. Low perceived social support has been shown to be associated with mental and physical health problems [ 90 ]. In the USA, a high level of perceived social support was found more likely in women and young people and low level of perceived social support more likely for those living in poverty [ 90 ]. Loneliness has been proposed the mediating factor between socioeconomic status and health in a Norwegian population-based study of people aged over 40 years [ 91 ]. Two explanations were suggested. Firstly, people with few social contacts have low levels of physical activity. Secondly, people with poor physical or emotional health are more likely to have low self-esteem and self-efficacy in self-care, which is associated with less successful occupational career and low socioeconomic status and thus fewer social contact resources to manage health [ 91 ].

This review supports an argument that interpersonal connections can be important for prehabilitation access, acceptance and adherence. It found evidence of relationships with family, peers and cancer care staff influencing access to, acceptance of, and adherence to prehabilitation. Perceived social support may have a key role in successful prehabilitation. This proposition should be further explored, paying attention to the known relationship between social support and socioeconomic status in other contexts and the potential for this to be an explanation of any observed difference in access across socioeconomic groups.

Technology as interpersonal connection?

An interesting finding is of data showing some people find web-based resources and/or online help to satisfy their prehabilitation information and support needs. These people experienced interpersonal connection through technology. An online survey among 1037 adults (18+) in the UK found that 80% of those with a long-term condition used technology for managing their health, a majority for seeking information whilst a third used wearable technology or apps. Those most likely to use technologies were younger and/or of high socioeconomic status, leading the authors to caution completely digital approaches because of the potential to exclude some groups from the care they need [ 92 ]. Arguably, technology may provide a partial solution to enabling successful prehabilitation.

What this review adds

Our finding of structural and individual level factors affecting access to, acceptance of and adherence to prehabilitation is consistent with Levesque et al.’s [ 93 ] socioecological model of access to health services. Levesque et al.’s [ 93 ] model sets out access as a process with five dimensions of accessibility (approachability; acceptability; availability and accommodation; affordability; appropriateness) and five corresponding abilities of populations (ability to perceive; ability to seek; ability to reach; ability to pay; ability to engage). The model enables attention to social, service organisation and person-centred factors that influence access. However, the model does not address the relational dimensions derived from our data analysis, i.e. how person-centred and structural factors interrelate for better or poorer service access. Based on our findings, an important ingredient for improving access to prehabilitation may be attention to what happens in the relational space connecting these factors. Voorhees et al. [ 94 ] interpreted findings of participatory research about access to general practice and claimed it is the human abilities of workforce and clients that are an important yet absent consideration in Levesque’s model. They argued that staff training and support for human interaction were needed. We agree. In addition, and based on our analysis, we also consider important the network of interactions between patient and others. Understanding the nature and mechanisms of these interactions may be important for health equity in prehabilitation.

Strengths and limitations

A strength of this review is that established, rigorous systematic review processes were followed to identify and select relevant peer-reviewed literature. Methods and thematic synthesis procedures were reported explicitly, providing an audit trail for dependability. To maximise study identification, the detailed and comprehensive search strategy was developed with the assistance of an expert information specialist, and the review was conducted by a multidisciplinary team with a minimum of two reviewers engaged in the screening and extracting process. Searches were limited from 2017 to 2023 and published in the English language. By limiting the search dates in this way, we have ensured that the evidence assessed has context and relevance to current policy and practices. This systematic review, as a result, provides an overarching picture and holistic understanding of access, acceptance and adherence to cancer prehabilitation. However, this review is not without its limitations. It is possible that some potentially useful studies, notably those not published in the English language have been omitted. Furthermore, we did not take account of study quality in our analysis. To reduce the risk of selection bias, studies were included irrespective of their methodological quality assessment. However, this means that some low quality evidence has been included, and this is a limitation to the credibility of the analysis. Nevertheless, there is some consistency between studies and across international healthcare settings. This does indicate a level of trustworthiness in the review findings. The review was of mixed cancer sites. Cancer site along with its symptoms and treatment-related problems may affect access, acceptance and adherence to prehabilitation. As the body of literature about engagement with prehabilitation grows, further work will be warranted to investigate cancer site–specific factors affecting inclusion in prehabilitation.

ThQueryere is limited empirical study of barriers and facilitators to inform improvement in equity of access to cancer prehabilitation. To enhance the inclusivity of cancer prehabilitation, adjustments may be needed to accommodate individual preferences and characteristics, such as comorbidity, and attention given to structural factors, such as staff training. Based on our findings, we propose interpersonal connections as a fundamental core ingredient for facilitation of prehabilitation access, acceptance and adherence.

Systematic review registration

This systematic review was registered in PROSPERO (CRD42023403776)

Data Availability

All data generated for this review are included in the manuscript and/or the supplementary files.

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Watts, T., Courtier, N., Fry, S. et al. Access, acceptance and adherence to cancer prehabilitation: a mixed-methods systematic review. J Cancer Surviv (2024). https://doi.org/10.1007/s11764-024-01605-3

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English is generally recognized as the international language of science and most research on evidence-based medicine is produced in English. While Bangla is the dominant language in Bangladesh, public midwifery degree programs use English as the medium of instruction (EMI). This enables faculty and student access to the latest evidence-based midwifery content, which is essential for provision of quality care later. Yet, it also poses a barrier, as limited English mastery among students and faculty limits both teaching and learning.

This mixed-methods study investigates the challenges and opportunities associated with the implementation of EMI in the context of diploma midwifery education in Bangladesh. Surveys were sent to principals at 38 public midwifery education institutions, and 14 English instructors at those schools. Additionally, ten key informant interviews were held with select knowledgeable stakeholders with key themes identified.

Surveys found that English instructors are primarily guest lecturers, trained in general or business English, without a standardized curriculum or functional English language laboratories. Three themes were identified in the key informant interviews. First, in addition to students’ challenges with English, faculty mastery of English presented challenges as well. Second, language labs were poorly maintained, often non-functional, and lacked faculty. Third, an alternative education model, such as the English for Specific Purposes (ESP) curriculum,  has potential to strengthen English competencies within midwifery schools.

Conclusions

ESP, which teaches English for application in a specific discipline, is one option available in Bangladesh for midwifery education. Native language instruction and the middle ground of multilingualism are also useful options. Although a major undertaking, investing in an ESP model and translation of technical midwifery content into relevant mother tongues may provide faster and more complete learning. In addition, a tiered system of requirements for English competencies tied to higher levels of midwifery education could build bridges to students to help them access global evidence-based care resources. Higher levels might emphasize English more heavily, while the diploma level would follow a multilingualism approach, teach using an ESP curriculum, and have complementary emphasis on the mother tongue.

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Introduction

As the international language of science, English holds an important position in the education of healthcare professionals. Globally, most scientific papers are published in English. In many non-native English-speaking countries, English is used as the language of instruction in higher education [ 1 ]. The dominant status held by the English language in the sciences is largely considered to increase global access to scientific information by unifying the scientific community under a single lingua franca [ 2 ].

In Bangladesh, where the mother tongue is Bangla and midwifery diploma programs are taught in English, knowledge of English facilitates student and instructor access to global, continuously updated evidence-based practice guidance. This includes basic and scientific texts, media-based instructional materials (including on life-saving skills), professional journals, and proceedings of medical conferences. Many of these resources are available for free online, which can be particularly useful in healthcare settings that have not integrated evidence-based practice.

In addition to opportunity though, English instruction also creates several challenges. Weak student and faculty English competency may impede midwifery education quality in Bangladesh. Globally, literature has linked limited instructor competency in the language of instruction with reduced depth, nuance, and accuracy in conveying subject matter content [ 3 ]. This can lead to the perpetuation of patterns of care in misalignment with global evidence. In addition, students’ native language proficiency in their topic of study can decline when instruction is in English, limiting native language communication between colleagues on the job later on [ 4 , 5 ].

In this paper, we examine the current status of English language instruction within public diploma midwifery programs in Bangladesh. Midwifery students are not required to demonstrate a certain skill level in English to enter the program. However, they are provided with English classes in the program. Midwifery course materials are in English, while—for ease and practicality—teaching aids and verbal classroom instruction are provided in Bangla. Following graduation, midwifery students must pass a national licensing exam given in English to practice. Upon passing, some new midwives are deployed as public employees and are posted to sub-district health facilities where English is not used by either providers or clients. Others will seek employment as part of non-governmental organization (NGO) projects where English competency can be of value for interacting with global communities, and for participating in NGO-specific on-the-job learning opportunities. The mix of both challenge and opportunity in this context is complex.

Our analysis examines the reasons for the identified English competency gaps within midwifery programs, and potential solutions. We synthesize the findings and discuss solutions in the context of the global literature. Finally, we present a set of viable options for strengthening English competencies among midwifery faculty and students to enable better quality teaching and greater learning comprehension among students.

Study design

We employed a mixed-methods study design [ 6 ] in order to assess the quality of English instruction within education programs, and options for its improvement. Data collection consisted of two surveys of education institutes, a web-search of available English programs in Bangladesh, and key informant interviews. Both surveys followed a structured questionnaire with a combination of open- and closed-ended questions and were designed by the authors. One survey targeted the 38 institute principals and the other targeted 14 of the institutes’ 38 English instructors (those for whom contact information was shared). The web-search focused on generating a list of available English programs in Bangladesh that had viable models that could be tapped into to strengthen English competencies among midwifery faculty and students. Key informant interviews were unstructured and intended to substantiate and deepen understanding of the survey and web-search findings.

No minimum requirements exist for students’ English competencies upon entry into midwifery diploma programs. Students enter directly from higher secondary school (12th standard) and complete the midwifery program over a period of three years. Most students come from modest economic backgrounds having completed their primary and secondary education in Bangla. While English instruction is part of students’ secondary education, skill attainment is low, and assessment standards are not in place to ensure student mastery. To join the program, midwifery students are required to pass a multi-subject entrance exam that includes a component on English competency. However, as no minimum English standard must be met, the exam does not screen out potential midwifery students. Scoring, for instance, is not broken down by subject. This makes it possible to answer zero questions correctly in up to three of the subjects, including English, and pass the exam.

Processes/data collection

Prior to the first survey, principals were contacted by UNFPA with information about the survey and all provided verbal consent to participate. The survey of principals collected general information about the resources available for English instruction at the institutes. It was a nine-item questionnaire with a mix of Yes/No, multiple choice and write-in questions. Specific measures of interest were whether and how many English instructors the institutes had, instructors’ hiring criteria, whether institutes had language labs and if they were in use, and principals’ views on the need for English courses and their ideal mode of delivery (e.g., in-person, online, or a combination). This survey also gathered contact information of institute English instructors. These measures were chosen as they were intended to provide a high-level picture of institutes’ English resources such as faculty availability and qualifications, and use of language labs. To ensure questions were appropriately framed, a pilot test was conducted with two institute principals and small adjustments were subsequently made. Responses were shared via an electronic form sent by email and were used to inform the second survey as well as the key informant interviews. Of the 38 principals, 36 completed the survey.

The second survey, targeting English instructors, gathered information on instructors’ type of employment (e.g., institute faculty or adjunct lecturers); length of employment; student academic focus (e.g., midwifery or nursing); hours of English instruction provided as part of the midwifery diploma program; whether a standard English curriculum was used and if it was tailored toward the healthcare profession; use of digital content in teaching; education and experience in English teaching; and their views on student barriers to learning English. These measures were chosen to provide a basic criterion for assessing quality of English instruction, materials and resources available to students. For instance, instructors’ status as faculty would indicate a stronger degree of integration and belonging to the institute midwifery program than a guest lecturer status which allows for part time instruction with little job security. In addition, use of a standard, professionally developed English curriculum and integration of digital content into classroom learning would be indicative of higher quality than learning materials developed informally by instructors themselves without use of listening content by native speakers in classrooms. The survey was piloted with two English instructors. Based on their feedback, minor adjustments were made to one question, and it was determined that responses were best gathered by phone due to instructors’ limited internet access. Of the 14 instructors contacted, 11 were reached and provided survey responses by phone.

The web-search gathered information on available English language instruction programs for adults in Bangladesh, and the viability of tapping into any of them to improve English competency among midwifery students and faculty. Keywords Bangladesh  +  English courses , English training , English classes , study English and learn English were typed into Google’s search platform. Eleven English language instruction programs were identified. Following this, each program was contacted either by phone or email and further detail about the program’s offerings was collected.

Unstructured key informant interviews were carried out with select knowledgeable individuals to substantiate and enhance the credibility of the survey and web-search findings. Three in-country expert English language instructors and four managers of English language teaching programs were interviewed. In addition, interviews were held with three national-level stakeholders knowledgeable about work to make functional technologically advanced English language laboratories that had been installed at many of the training institutes. Question prompts included queries such as, ‘In your experience, what are the major barriers to Bangla-medium educated students studying in English at the university level?’, ‘What effective methods or curricula are you aware of for improving student English to an appropriate competency level for successful learning in English?’, and, ‘What options do you see for the language lab/s being used, either in their originally intended capacity or otherwise?’

Data analysis

All data were analyzed by the lead researcher. Survey data were entered into a master Excel file and grouped descriptively to highlight trends and outliers, and ultimately enable a clear description of the structure and basic quality attributes (e.g., instructors’ education, hours of English instruction, and curriculum development resources used). Web-search findings were compiled in a second Excel file with columns distinguishing whether they taught general English (often aimed at preparing students for international standard exams), Business English, or English for Specific Purposes (ESP). This enabled separation of standalone English courses taught by individual instructors as part of vocational or academic programs of study in other fields, and programs with an exclusive focus on English language acquisition. Key informant interviews were summarized in a standard notes format using Word. An inductive process of content analysis was carried out, in which content categories were identified and structured to create coherent meaning [ 7 ]. From this, the key overall findings and larger themes that grew from the initial survey and web-search results were drawn out.

The surveys (Tables  1 and 2 ) found that English instructors are primarily long-term male guest lecturers employed at each institute for more than two years. All principal respondents indicated that there is a need for English instruction—18 of the 19 reported that this is best done through a combination of in-person and computer-based instruction. Ten institutes reported that they have an English language lab, but none were used as such. The other institutes did not have language labs. The reported reasons for the labs not being in use were a lack of trained staff to operate them and some components of the technology not being installed or working properly. The findings from the instructors’ survey indicated that English instructors typically develop their own learning materials and teach general English without tailoring content to healthcare contexts. Only two mentioned using a standard textbook to guide their instruction and one described consulting a range of English textbooks to develop learning content. None reported using online or other digital tools for language instruction in their classrooms. Most instructors had an advanced degree (i.e., master’s degree) in English, and seven had received training in teaching English. Interviews with instructors also revealed that they themselves did not have mastery of English, as communication barriers in speaking over the phone appeared consistently across 10 of the 11 instructor respondents.

The web-search and related follow up interviews found that most English instruction programs (10 out of the 11) were designed for teaching general English and/or business English. The majority were offered through private entities aiming to reach individuals intending to study abroad, access employment that required English, or improve their ability to navigate business endeavors in English. One program, developed by the British Council, had flexibility to tailor its structure and some of its content to the needs of midwifery students. However, this was limited in that a significant portion of the content that would be used was developed for global audiences and thus not tailored to a Bangladeshi audience or to any specific discipline. One of the university English programs offered a promising ESP model tailored to midwifery students. It was designed by BRAC University’s Institute of Language for the university’s private midwifery training program.

Three themes emerged from the other key informant interviews (Table  3 ). The first was that, in addition to students’ challenges with English, faculty mastery of English presented challenges as well. Of the 34 faculty members intending to participate in the 2019–2020 cohort for the Dalarna master’s degree, half did not pass the prerequisite English exam. Ultimately, simultaneous English-Bangla translation was necessary for close to half of the faculty to enable their participation in the master’s program. English language limitations also precluded one faculty member from participating in an international PhD program in midwifery.

The second theme highlighted the language labs’ lack of usability. The language labs consisted of computers, an interactive whiteboard, audio-visual equipment, and associated software to allow for individualized direct interactions between teacher and student. However, due to the lack of appropriately trained staff to manage, care for and use the language lab equipment, the investment required to make the labs functional appeared to outweigh the learning advantages doing so would provide. Interviews revealed that work was being done, supported by a donor agency, on just one language lab, to explore whether it could be made functional. The work was described as costly and challenging, and required purchasing a software license from abroad, thus likely being impractical to apply to the other labs and sustain over multiple years.

The third theme was around the ESP curriculum model. The program developers had employed evidence-informed thinking to develop the ESP learning content and consulted student midwives on their learning preferences. Due to the student input, at least 80% of the content was designed to directly relate to the practice of midwifery in Bangladesh, while the remaining 10–20% references globally relevant content. This balance was struck based on students’ expressed interest in having some exposure to English usage outside of Bangladesh for their personal interest. For conversation practice, the modules integrated realistic scenarios of midwives interacting with doctors, nurses and patients. Also built into written activities were exercises where students were prompted to describe relevant health topics they are concurrently studying in their health, science or clinical classes. Given the midwifery students’ educational backgrounds and intended placements in rural parts of Bangladesh, an ESP curriculum model appeared to be the most beneficial existing program to pursue tapping into to strengthen English competencies within midwifery programs. This was because the content would likely be more accessible to students than a general English course by having vocabulary, activities and examples directly relevant to the midwifery profession.

The study findings demonstrate key weaknesses in the current model of English instruction taught in public midwifery programs. Notably, the quantitative findings revealed that some English instructors do not have training in teaching English, and none used standard curricula or online resources to structure and enhance their classroom content. In addition, weak mastery of English among midwifery faculty was identified in the qualitative data, which calls into question faculty’s ability to fully understand and accurately convey content from English learning materials. Global literature indicates that this is not a unique situation. Many healthcare faculty and students in low-resource settings, in fact, are faced with delivering and acquiring knowledge in a language they have not sufficiently mastered [ 8 ]. As a significant barrier to knowledge and skill acquisition for evidence-based care, this requires more attention from global midwifery educators [ 9 ].

Also holding back students’ English development is the finding from both the quantitative and qualitative data that none of the high-tech language labs were being used as intended. This indicates a misalignment with the investment against the reality of the resources at the institutes to use them. While setting up the costly language labs appears to have been a large investment with little to no return, it does demonstrate that strengthening English language instruction in post-secondary public education settings is a priority that the Bangladesh government is willing to invest in. However, scaling up access to an ESP curriculum model tailored to future midwifery practitioners in Bangladesh may be a more worthwhile investment than language labs [ 10 ]. 

The ESP approach teaches English for application in a specific discipline. It does this by using vocabulary, examples, demonstrations, scenarios and practice activities that are directly related to the context and professions those studying English live and work (or are preparing to work) in. One way ESP has been described, attributed to Hutchinson and Waters (1987), is, “ESP should properly be seen not as any particular language product but as an approach to language teaching in which all decisions as to content and method are based on the learner’s reason for learning” [ 11 ]. It is proposed by linguistic education researchers as a viable model for strengthening language mastery and subject matter comprehension in EMI university contexts [ 12 ].

Though it did not arise as a finding, reviewing the literature highlighted that Bangla language instruction may be an additional, potentially viable option. Linguistic research has long shown that students learn more thoroughly and efficiently in their mother tongue [ 12 ]. Another perhaps more desirable option may be multilingualism, which entails recognizing native languages as complementary in EMI classrooms, and using them through verbal instruction and supplemental course materials. Kirkpatrick, a leading scholar of EMI in Asia, suggests that multilingualism be formally integrated into EMI university settings [ 13 ]. This approach is supported by evidence showing that the amount of native language support students need for optimal learning is inversely proportional to their degree of English proficiency [ 14 ].

Ultimately, despite the language related learning limitations identified in this study, and the opportunities presented by native language and multilingualism approaches, there remains a fundamental need for members of the midwifery profession in Bangladesh to use up-to-date guidance on evidence-based midwifery care [ 11 ]. Doing that currently requires English language competence. Perhaps a tiered system of requirements for English competencies that are tied to diploma, Bachelor’s, Master’s and PhD midwifery programs could build bridges for more advanced students to access global resources. Higher academic levels might emphasize English more heavily, while the diploma level could follow a multilingualism approach—teaching using an ESP curriculum and integrating Bangla strategically to support optimal knowledge acquisition for future practice in rural facilities. Ideally, scores on a standard English competency exam would be used to assess students’ language competencies prior to entrance in English-based programs and that this would require more stringent English skill development prior to entering a midwifery program.

Methodological considerations

One of the limitations of this study is that it relied on self-reports and observation, rather than tested language and subject matter competencies. Its strengths though are in the relatively large number of education institutes that participated in the study, and the breadth of knowledge about faculty and student subject matter expertise among study co-authors. It was recognized that the lead researcher might be biased toward pre-determined perceptions of English competencies being a barrier to teaching and learning held by the lead institution (UNFPA). It was also recognized that due to the inherent power imbalance between researcher and participants, the manner of gathering data and engaging with stakeholders may contribute to confirmation bias, with respondents primarily sharing what they anticipated the researcher wished to hear (e.g., that English needed strengthening and the lead agency should take action to support the strengthening). The researcher thus engaged with participants independently of UNFPA and employed reflexivity by designing and carrying out the surveys to remotely collect standard data from institutes, as well as casting a wide net across institutes to increase broad representation. In addition, while institutes were informed that the surveys were gathering information about the English instruction within the institutes, no information was shared about potential new support to institutes. Finally, the researcher validated and gathered further details on the relevant information identified in the surveys through key informant interviews, which were held with stakeholders independent of UNFPA.

Adapting and scaling up the existing ESP modules found in this study, and integrating Bangla where it can enhance subject-matter learning, may be a useful way to help midwifery students and faculty improve their knowledge, skills, and critical thinking related to the field of midwifery. Given the educational backgrounds and likely work locations of most midwives in Bangladesh and many other LMICs, practitioners may want to consider investing in more opportunities for local midwives to teach and learn in their mother tongue. This type of investment would ideally be paired with a tiered system in which more advanced English competencies are required at higher-levels of education to ensure integration of global, evidence-based approaches into local standards of care.

Declarations.

Data availability

The datasets used and analyzed during the current study are available from the corresponding author upon reasonable request.

Abbreviations

Bangladesh Rehabilitation Assistance Committee

English medium instruction

English for Specific Purposes

Low- and Middle-Income Countries

Ministry of Health and Family Welfare

United Nations Population Fund

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Acknowledgements

The authors acknowledge Farida Begum, Rabeya Basri, and Pronita Raha for their contributions to data collection for this assessment.

This project under which this study was carried out was funded by funded by the Foreign Commonwealth and Development Office.

Open access funding provided by University of Gothenburg.

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Authors contributions in the development of this paper were as follows: AW- Concept, acquisition, drafting, revision, analysis, interpretation. JRS- Concept, revision. RA- Concept, analysis MB- Revision, analysis, interpretationAll authors read and approved the final manuscript.

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This study was part of a larger project in Bangladesh approved by the Ministry of Health and Family Welfare (MOHFW) with project ID UZJ31. The MOHFW project approval allows data collection of this type, that is carried out as part of routine program monitoring and improvement, including informed verbal consent for surveys and key informant interviews.

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Williams, A., Stevens, J., Anderson, R. et al. Challenges and opportunities of English as the medium of instruction in diploma midwifery programs in Bangladesh: a mixed-methods study. BMC Med Educ 24 , 523 (2024). https://doi.org/10.1186/s12909-024-05499-8

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Published on 8.5.2024 in Vol 26 (2024)

This is a member publication of University of Toronto

A Typology of Social Media Use by Human Service Nonprofits: Mixed Methods Study

Authors of this article:

Original Paper

• Jia Xue 1, 2 , PhD   ; 
• Micheal L Shier 1 , PhD   ; 
• Junxiang Chen 3 , PhD   ; 
• Yirun Wang 4 , MSc   ; 
• Chengda Zheng 4 , MI   ; 
• Chen Chen 4 , PhD  

1 Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, ON, Canada

2 Faculty of Information, University of Toronto, Toronto, ON, Canada

3 Department of Biostatistics and Health Data Science, Indiana University School of Medicine, Indianapolis, IN, United States

4 Artificial Intelligence for Justice Lab, University of Toronto, Toronto, ON, Canada

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Jia Xue, PhD

Factor-Inwentash Faculty of Social Work

University of Toronto

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Phone: 1 4169465429

Email: [email protected]

Background: Nonprofit organizations are increasingly using social media to improve their communication strategies with the broader population. However, within the domain of human service nonprofits, there is hesitancy to fully use social media tools, and there is limited scope among organizational personnel in applying their potential beyond self-promotion and service advertisement. There is a pressing need for greater conceptual clarity to support education and training on the varied reasons for using social media to increase organizational outcomes.

Objective: This study leverages the potential of Twitter (subsequently rebranded as X [X Corp]) to examine the online communication content within a sample (n=133) of nonprofit sexual assault (SA) centers in Canada. To achieve this, we developed a typology using a qualitative and supervised machine learning model for the automatic classification of tweets posted by these centers.

Methods: Using a mixed methods approach that combines machine learning and qualitative analysis, we manually coded 10,809 tweets from 133 SA centers in Canada, spanning the period from March 2009 to March 2023. These manually labeled tweets were used as the training data set for the supervised machine learning process, which allowed us to classify 286,551 organizational tweets. The classification model based on supervised machine learning yielded satisfactory results, prompting the use of unsupervised machine learning to classify the topics within each thematic category and identify latent topics. The qualitative thematic analysis, in combination with topic modeling, provided a contextual understanding of each theme. Sentiment analysis was conducted to reveal the emotions conveyed in the tweets. We conducted validation of the model with 2 independent data sets.

Results: Manual annotation of 10,809 tweets identified seven thematic categories: (1) community engagement, (2) organization administration, (3) public awareness, (4) political advocacy, (5) support for others, (6) partnerships, and (7) appreciation. Organization administration was the most frequent segment, and political advocacy and partnerships were the smallest segments. The supervised machine learning model achieved an accuracy of 63.4% in classifying tweets. The sentiment analysis revealed a prevalence of neutral sentiment across all categories. The emotion analysis indicated that fear was predominant, whereas joy was associated with the partnership and appreciation tweets. Topic modeling identified distinct themes within each category, providing valuable insights into the prevalent discussions surrounding SA and related issues.

Conclusions: This research contributes an original theoretical model that sheds light on how human service nonprofits use social media to achieve their online organizational communication objectives across 7 thematic categories. The study advances our comprehension of social media use by nonprofits, presenting a comprehensive typology that captures the diverse communication objectives and contents of these organizations, which provide content to expand training and education for nonprofit leaders to connect and engage with the public, policy experts, other organizations, and potential service users.

Introduction

It has long been acknowledged that social media plays a significant role in facilitating stakeholder engagement between nonprofits and community members [ 1 - 3 ]. Human service nonprofits have recognized the potential of social media in securing donations; recruiting volunteers [ 4 - 7 ]; enhancing trust, accountability, and awareness [ 8 ]; and fostering partnerships [ 9 ]. However, research on the specific focus of social media engagement by human service nonprofits remains somewhat limited in the existing literature and practice [ 10 ]. Traditionally, social media in the nonprofit sector has been extensively explored in relation to its use for advocacy purposes [ 11 - 13 ]. Although investigation into the advocacy function of social media use is important within the human service nonprofit sector, as this is a key role played by human service nonprofits to promote and support social welfare development, the need of these organizations to engage with the wider community is much more expansive.

Human service organizations are complex entities involved in a wide range of activities to fulfill their missions, primarily focused on providing direct support to address negative social, economic, and political outcomes of social groups considered marginalized and to promote social welfare development through program development, public awareness, and advocacy efforts [ 14 ]. These human service nonprofits interact with diverse human resources (professional and volunteer), service users, and community groups; form partnerships across sectors (nonprofits, for-profit firms, and governments); and manage activities with for-profit (eg, social enterprises, social investors, and consumers), government (eg, contracting arrangements), and nonprofit (eg, through foundations) revenue sources and organizations. The use of social media is complicated further when considering its use for service user engagement, as there is an emerging body of literature on the use of social media for service delivery–related purposes [ 15 , 16 ].

To move beyond the advocacy-related function of social media by human service nonprofits, this research investigated in greater detail the various reasons why human service nonprofits are using social media within the sexual violence service delivery sector across Canada. The research merges social science, big data, and computer science to further enhance our knowledge and understanding of how human service nonprofit organizations use information communication technology. This study expands upon prior studies of nonprofit organizational communication research by using Twitter-based data (subsequently rebranded as X [X Corp]). Human-labeled tweets were used as training data, and a supervised machine learning approach was used to automatically predict content analytical themes in a Twitter corpus. The study builds a predictive classification model that uses a supervised machine learning algorithm to evaluate large social media data sets, resulting in a theoretical framework that categorizes the objectives of the sexual assault (SA) organization posts on social media. The overarching question that guides this research is as follows: “What are the different purposes of social media communication among SA centers in Canada?” This research is part of a greater effort to develop a strategic approach and educational information for training human service personnel and leaders on the use of social media to increase the capacity of human service nonprofits [ 17 , 18 ].

Literature Review

Current research indicates that nonprofit organizations are increasingly using social media to improve their communication strategies with the broader population. A primary focus of research in this area has been on the specific tangible ways of this type of engagement, including the volume of engagement and the focus of messaging, along with its directionality, and the emphasis of the posts being informative and practical [ 19 - 21 ]. For example, Guo and Saxton [ 22 ] have focused on the extent to which nonprofits are gaining attention and highlight that this is influenced by the size of an organization’s network, the frequency with which it communicates through social media, and the number of conversations an organization joins [ 22 ]. This research is important, as it highlights the mechanisms of social media use and the frequency; however, it does not provide sufficient insight into the various reasons for social media use and the outcomes of this communication strategy on different organizational functions or purposes, and particularly important within the realm of human service nonprofit organization, which may use social media to achieve a multitude of objectives.

In fact, research on social media use within human service nonprofits specifically has identified some hesitancy to use social media education or useful tools to focus on social media use [ 23 , 24 ], and there is limited scope among organizational personnel in applying its usefulness beyond promoting one’s organization and its services [ 25 ]. This lack of engagement has been determined to be influenced in part due to limited education and awareness of the utility of social media use in the human services sector and other key organizational dynamics such as organizational culture, funding, and size of the organization [ 6 , 24 , 26 , 27 ].

Furthermore, a strong focus within the literature has been on how social media has been impacted by market actors (such as donors), which has constrained the framing of social media messaging [ 20 , 28 - 30 ]. Likewise, challenges with social media use, such as breaches of confidentiality and its increased use for surveillance and accountability-related purposes [ 31 ], also act to constrain social media use. As a result, there is a need for greater conceptual clarity to support education and training on the varied reasons for using social media to increase organizational outcomes [ 32 - 34 ].

This research seeks to address these gaps by investigating the wider range of social media use by human service nonprofits, establishing a typology of reasons for social media use beyond advocacy-related purposes. By doing so, it also addresses concerns regarding limited education and training within the sector on leveraging social media for diverse organizational objectives. Through the incorporation of machine learning and content analysis, this study contributes to a deeper understanding of nonprofit communication strategies and offers practical implications for improved social media engagement within the human service context.

Aim of the Study

This study investigates the objectives of social media engagement and the contents posted by human service nonprofit organizations on the social media platform Twitter, with a particular focus on SA service delivery centers in Canada. To achieve this aim, this study addresses the following research questions: (1) What is the typology and theoretical framework that effectively captures and categorizes the diverse online organizational communication objectives of SA centers as they use Twitter as a strategic tool to achieve their organizational outcomes? (2) How do the sentiments and emotions expressed in Twitter posts by SA centers vary in relation to different categories in the typology of online organizational communication, such as advocacy or public awareness? (3) How can machine learning and content analysis categorize and analyze the social media posts of these organizations, providing insights into their communication strategies?

This study used mixed research methods, including qualitative content analysis, supervised machine learning, unsupervised machine learning, thematic analysis, and sentiment analysis. To classify the full set of tweets, we first manually coded a subset of the full data set (n=10,809 tweets) into 7 emergent categories ( Table 1 ). These human-labeled tweets were used as the training data set to train a supervised machine learning algorithm to classify the remaining tweets. Figure 1 illustrates the mixed methods approach.

To select SA centers in Canada, this study used a purposive sampling approach. Initially, a sampling frame was developed by combining the list of SA centers by province and territory from the Canadian Association of Sexual Assault Centres and the Sexual Assault Centres, Crisis Lines, and Support Services websites. After removing duplicates, the sample frame consisted of 350 SA centers across 10 provinces and 3 territories. The sample frame provided basic information about the centers, including their names, contact information (phone number and email), and website or URL. The inclusion criteria were twofold: (1) the SA center had an active Twitter account and (2) it had posted at least 1 tweet on its account. To verify the eligibility of these centers, the authors manually searched their home page and Twitter pages and conducted thorough Google searches. Ultimately, the Twitter accounts of 133 SA centers were included as the final sample for this study. These centers were from 9 provinces and the Northwest Territories (Prince Edward Island did not have any SA centers that used Twitter).

Data Collection

To collect tweets from SA centers, the authors followed the pipeline outlined in their papers, including acquiring Twitter handles, obtaining Twitter IDs, and collecting tweets via Twitter’s application programing interface (API) [ 35 - 43 ]. The collected tweets encompassed the period from March 12, 2009, to March 15, 2023. The data set consisted of 297,360 tweets from 133 SA centers in Canada. The data sets are available for use by researchers upon request. First, a total of 91 unique Twitter handles (ie, @name) were obtained from the 133 SA centers in the sample, with 26 duplicate Twitter handles. Second, the 91 Twitter handles were converted into 91 Twitter IDs using 3 websites: TweeterID, CodeOfaNinja, and Comment Picker. Third, Twitter’s premium search API and timeline end points (full-archive end point) were used to collect tweets posted by the sampled SA centers in Canada, starting from as early as 2006 (search tweets, 2019). Data collection concluded on March 15, 2023.

Manual Annotation

The purpose of manual annotation was to obtain human-labeled tweets categorized into different themes. These labeled tweets would serve as the training data set for classifying the entire corpus using a supervised machine learning approach. The coding protocol was developed based on prior literature on organizational communication research and adapted to suit the objectives of this study. Table 1 included the classification, labels, definitions, and sample tweets.

To ensure consistency, 2 authors (JX and MLS) provided training to the research assistants on the protocol and research goals. During the training phase, a random subset of 200 tweets was selected, and 2 research assistants were assigned to independently code them. This process was repeated 4 times (n=809 tweets) until an acceptable interrater reliability score of 0.7 was achieved for each of the 7 categories. Krippendorff α was used to determine the interrater reliability, which indicated substantial agreement.

Following the training phase, a subset of 10,000 tweets was randomly selected from the collected data. Research assistants were assigned to independently code a subset of 5000 tweets. The manual annotation data set consisted of a random subsample of 10,809 manually labeled tweets categorized into 7 themes from the full data set.

Construction of Predictive Classification Model

To create an accurate classification model for Twitter data, we used the BERT model [ 44 ]. BERT is a widely used natural language processing model that has been pretrained on various English language data sets, making it suitable for fine-tuning tasks such as sentence classification. To evaluate the performance of our model, we randomly selected 80% of the human-labeled tweets as training data, with the remaining 20% used as test data.

Due to the imbalanced distribution of classes in our data set, we used a 2-step strategy to train the machine learning model. First, we fine-tuned the BERT model with all the training data by minimizing the logistic loss [ 45 ]. Second, we applied a random undersampling process [ 46 ] to retrain the last layer of the BERT model (the classification layer) using this undersampled subset. The undersampling process randomly selected a subset of training data, ensuring an equal number of samples for each class. We chose the undersampling technique as it is less prone to overfitting the data compared to other methods such as oversampling [ 46 ].

In addition to using deep learning models in our study, we also used a range of traditional machine learning algorithms as benchmarks for performance comparison. Specifically, we trained models using linear regression, support vector machines with a radial basis function kernel, and support vector machine with a linear kernel. To represent features in these traditional algorithms, we chose the term frequency–inverse document frequency approach to convert our textual data into numerical vectors.

To evaluate the efficacy of these models, we computed the average sensitivity score based on the test data. The sensitivity score for a given class “k” denotes the probability that a sample will be classified by a model as belonging to class “k,” given that the sample truly belongs to that class. We calculated the mean of the sensitivity scores across all 7 classes as our final measurement. Following the training of the BERT model, we used it to classify the unlabeled 286,551 tweets into 7 categories.

Validation Data

To ensure the robust performance of our model across diverse contexts, we gathered 2 distinct independent data sets from Twitter and Facebook. Independent data set #1 was derived using the same sampling frame in this study. Our aim was to identify organizations active on Facebook but not on Twitter, thereby maintaining uniformity in organization type while varying the social media platform for further model validation. Using Apify software [ 47 ], we collected messages from 67 SA organizations and subsequently selected a random sample of 500 messages (n=2520). Independent data set #2 was obtained through a list of human service organizations (approximately 12,000) from the government of Canada’s list of charitable nonprofits (N=85,496). Of the approximately 86,000 charitable nonprofits in Canada, the list of human service organizations was developed through an assessment of the organizations’ website that shows an indication of providing some type of social service programing to a service user group. This frame enabled the identification of organizations with active Twitter accounts, thus ensuring consistency in the chosen social media platform while introducing variation in the type of organization for enhanced model validation. Following the collection of tweets via our API, a random sample of 500 tweets (n=15,696) was selected for data validation. We used the same manual annotation procedure for these 2 data sets to establish manual labels. This allowed us to directly compare the model’s predictions against these manual labels, serving as a method to assess the model’s effectiveness ( Multimedia Appendix 1 ).

Sentiment Analysis

Sentiment analysis, sometimes referred to as opinion mining, involves the classification and analysis of people’s opinions, sentiments, evaluations, appraisals, attitudes, and emotions concerning various entities, including products, services, organizations, individuals, issues, events, topics, and their associated attributes [ 48 ]. Sentiment analysis applied to social media content has been extensively studied, and Twitter has the capability to promptly gauge public sentiments and emotions regarding a given topic [ 49 ]. For this analysis, we used RoBERTa, a deep learning framework [ 50 ]. We used a pretrained model [ 51 ] that was fine-tuned specifically for sentiment analysis of social media data. The model categorized each tweet into 1 of the 3 sentiments: “positive,” “neutral,” or “negative.” We converted a significant amount of textual data into quantitative sentiment scores and calculated the percentage of each sentiment within every category.

Emotion Analysis

Emotion analysis primarily focuses on capturing nuanced emotions, which contrasts with sentiment analysis, primarily concerned with detecting simple attitudes such as positivity and negativity. Mohammad [ 52 ] indicated that machines can infer people’s emotions in a limited way but are useful. We need to hold automatic emotion recognition systems to high standards by incorporating ethical considerations associated with each step of the detection process. In our study, we delve into emotion analysis within 7 categorized groups to investigate and compare potential emotional variations across different categories. For this analysis, we used a pretrained RoBERTa model [ 53 ], optimized for emotion analysis of social media data. This model classifies each tweet into 1 of the 7 emotion categories: “anger,” “disgust,” “fear,” “joy,” “neutral,” “sadness,” or “surprise.” We then calculated the percentage of tweets associated with each emotion category for each of our designated categories. Subsequently, we determined the percentage distribution of each emotion within each category. This measurement across various goals and intentions in social media communication provides valuable insights into the perspectives of both the public and SA issues, enhancing our overall understanding of these topics.

Topic Modeling for Tweets Categorized Into 7 Classes

The objective of this unsupervised machine learning work was to extract latent topics within each theme after categorizing tweets into 7 different categories. To achieve this, we used the latent Dirichlet allocation approach for topic modeling, which allowed us to group tweets into different topics. The initial step in this analysis stage was preprocessing, which enhanced model performance by removing noisy data. We eliminated various elements, such as “mentions,” “emojis,” “hyperlinks,” “RT symbols,” and punctuations, and converted all tweets to lower case. Removing mention symbols eliminated irrelevant terms from the analysis, such as names of organizations and individuals. In addition, we removed stop words such as “the,” “is,” and “and” while retaining nouns, adjectives, and verbs related to events.

Once the data were preprocessed, we implemented latent Dirichlet allocation models using the Gensim library in Python. Our hyperparameter range was set from 1 to 30, and the similarity score served as our evaluation metric. By plotting the similarity score against the number of topics, we identified the turning point on the graph as our optimal hyperparameter. To further analyze the topics within each of the 7 categories, we extracted popular bigrams and reviewed a random sample of tweets. We used qualitative thematic analysis to assign underlying topic meanings to them.

Topic Evaluation

The team, consisting of domain experts and research assistants, summarized and evaluated the results of the topic modeling. Salient bigrams were used to summarize each topic, and similar topic themes were merged into higher-level categories, as per the machine learning approach described by Zhou et al [ 54 ].

Ethical Considerations

This study used publicly available Twitter data, eliminating the need for ethics approval or consent from organizations. The study data mentioned in this paper underwent processes of anonymization and deidentification. To guarantee full anonymity, all data that could potentially identify individuals or organizations, including users’ metadata and original tweets, have been carefully excluded from the data set.

Our data set included 297,360 tweets and retweets from 133 SA support organizations in Canada. These tweets were posted from March 12, 2009, to March 14, 2023. Multimedia Appendix 2 illustrates a bar plot that summarizes the number of tweets collected for each year.

Manual Annotation and Class Distribution of Tweets

Among the data set consisting of 297,360 tweets and retweets, 10,809 tweets were manually annotated by humans following the coding protocol. As shown in Table 2 , organization administration (5652/10,809, 52.29%) was the most frequent type of post, followed by community engagement (2322/10,809, 21.38%) and public awareness (1522/10,809, 14.08%). The smallest segment of tweets belonged to political advocacy (129/10,809, 1.19%) and partnerships (162/10,809, 1.5%). Multimedia Appendix 3 presents the histogram of class distributions of the human-labeled tweets. It is worth noting that the distribution of labels was imbalanced, with a smaller proportion of tweets (<5%) falling into the categories of political advocacy, support for others, and partnerships. Figure 2 presents a plot showing the percentage of each category plotted against the corresponding years.

Performance of the Supervised Machine Learning Model

We evaluated the performance of the supervised machine learning model using the test set (20% of the human-labeled tweets). The accuracy of machine learning classification achieved by our trained model was 63.4%, which was higher than that of the human coders who labeled the training data set. This indicates an improvement in the BERT model’s ability to accurately predict classifications compared to those made by human coders.

We analyzed and presented the confusion matrices in Tables 3 and 4 . Table 3 displays the confusion matrix for the initial model without undersampling, whereas Table 4 illustrates the confusion matrix with undersampling applied. These matrices provide insights into the percentage of samples with actual labels that were correctly classified into the predicted class by the model. The sensitivity scores for each class are represented on the diagonal of the matrices, and the average sensitivity score across the 7 classes serves as an indicator of the overall performance of the model. As observed in the tables, the average sensitivity scores improved from 48.3% to 53.1%. As demonstrated in tables, BERT’s performance surpassed that of traditional machine learning methods.

Results of Predictive Classification of Unlabeled Data Using Machine Learning

The remaining 286,551 tweets were classified into 7 classes using the supervised machine learning algorithms. The classification results are presented in Table 2 . The supervised machine learning model produced classifications that were similar to those of the human-annotated tweets in terms of the percentage of each category. The most frequent tweet class was public awareness (89,295/286,551, 31.2%), followed by community engagement (67,285/286,551, 23.5%) and organization administration (50,620/286,551, 23.5%). The 2 smallest categories of posts were partnerships (7144/286,551, 2.5%) and political advocacy (19,620/286,551, 6.8%).

Top Unigrams and Bigrams in the Tweets

We conducted an analysis to identify the most commonly used words and phrases in the tweets from the SA support organizations. To do this, we removed the stop words and generated a list of the top 30 most frequently occurring unigrams and bigrams, as presented in Multimedia Appendices 4 and 5 . We observed that >220,000 tweets included a URL link, which directed users to news or events related to SA. In addition, approximately 100,000 tweets were retweets, with “rt” in the messages. The terms “women,” “support,” “sexual assault,” “sexual violence,” and “crisis line” were among the most commonly used terms in these tweets.

Sentiment and Emotion Analysis Results

We conducted sentiment and emotion analysis, and the summarized results can be found in Tables 5 and 6 . The findings revealed that the neutral sentiment category surpassed both the negative and positive sentiment categories across all 7 classes.

Regarding the emotion analysis, most tweets from organizations were associated with the emotion of “fear.” In contrast, tweets discussing topics related to class 6 (partnerships) and class 7 (appreciation) exhibited the emotion of “joy.” Here are a few examples of tweets reflecting fear:

Every minute of every day, a Canadian woman or child is being sexually assaulted. #VAW

Salau’s story is so symbolic of how universally disregarded, disrespected, and unprotected Black women are, even in our most vulnerable moments. #EndVAW #JusticeForToyin.

Here is a tweet reflecting joy (appreciation):

We’ve seen that charity brings together amazing people to create great change and make meaningful impact in the lives of the people in their community. THANK YOU to the incredible supporters who make our work possible...

These examples illustrate the emotional tone associated with different tweet categories, with fear being prevalent among organizational tweets and joy being linked to discussions on partnerships and appreciation.

Topic Modeling Results

The coded data set yielded distinct topics within each of the classes or categories. The identified topics, bigrams, and representative tweet examples are presented in Table 7 . These themes provide insights into the prevalent topics and discussions within the data set, showcasing different aspects of the discourse surrounding SA and related issues.

a Not available.

Community Engagement

Approximately 20% of the tweets in the data set contained themes related to community engagement, generating 3 topics: “experience and awareness of abuse,” “support and information,” and “social media engagement.” Topic 1 focuses on discussions related to experiences of abuse and raising awareness about it. Topic 2 revolves around providing support and information and promoting human rights in relation to SA. Topic 3 highlights engagement on social media platforms, connecting with friends and family, and finding ways to stay informed and connected.

Organization Administration

In the organization administration class, “sexual assault support services,” “helplines,” and “support groups and emotional support” were the salient topics. The first topic revolves around providing support for survivors of SA, and the tweets likely contain information about available services and crisis lines; promote helpline numbers; and emphasize the availability of support services. Topic 2 centers on support groups and emotional support for individuals impacted by sexual violence. The tweets may discuss the importance of support networks, encourage individuals to join support groups, and highlight the emotional support available.

Public Awareness

In the public awareness class, we identified 3 topics. Topic 1 focuses on discussions related to gender-based violence, and the tweets likely highlight the need to raise awareness, advocate for survivors, and address issues surrounding gender-based violence. Topic 2 centers on SA awareness, support for survivors, and efforts to combat sexual violence. The tweets may highlight initiatives such as awareness months, support services, survivor empowerment, and the importance of ending sexual violence. Topic 3 focuses on violence against women, advocating for women’s rights, and addressing issues such as domestic violence and intimate partner violence. The tweets may discuss the importance of human rights, raise awareness about violence against women, and emphasize the need for support services.

Political Advocacy

This theme delves into the criminal justice system’s response to SA cases and advocates for changes and reforms. It discusses specific initiatives, such as signing petitions and calling for justice for communities considered marginalized. It also mentions the importance of advocacy and policy work for Francophone women. Topic 1 revolves around discussions related to SA, advocating for survivors, and seeking justice. The tweets may address issues such as domestic violence, support for survivors, legal cases, and the need for systemic change in addressing SA and violence against women. Topic 2 focuses on support services and resources available for survivors of SA, including centers providing assistance and legal aid. The tweets may mention crisis centers, justice systems, confidential services, and the importance of providing support and resources to survivors. Topic 3 highlights discussions surrounding Indigenous rights, reconciliation, and addressing SA and violence within Indigenous communities. The tweets may emphasize actions for truth and reconciliation, support for Indigenous women, and the need for systemic change to combat violence and promote gender equality. Topic 4 addresses sexual violence in general, including domestic violence and violence against women. The tweets may focus on the need for action, standing against violence, justice systems, systemic change, and the role of government in addressing sexual violence.

Support for Others

This theme included 2 topics, highlighting the importance of community involvement, support, and collective efforts to combat violence and abuse. Topic 1 emphasizes “support and advocacy for survivors of sexual assault,” and the tweets may mention initiatives, organizations, and individuals working to support and address their mental health needs, highlighting the importance of community efforts in making a positive difference. Topic 2 focuses on the “campaigns and events to raise awareness about sexual assault,” and the discussion within this topic often involves various campaigns and events, with tweets possibly mentioning actions such as wearing purple to demonstrate support as well as sharing information and promoting community campaigns.

Partnerships

This theme centers on the importance of partnerships, fundraising efforts, and collective efforts to address and prevent violence and abuse. We identified 4 topics within the theme. Topic 1 revolves around providing support and raising funds for survivors of sexual violence. The tweets may mention community partners, local businesses, and fundraising efforts aimed at supporting survivors. Topic 2 focuses on campaigns and initiatives to end violence against women. The tweets may mention supporting campaigns, raising funds, and providing support services for survivors of SA. The topic highlights the importance of community engagement and collective action in addressing violence against women. Topic 3 emphasizes programs and efforts aimed at supporting women and children who have experienced SA. The tweets may mention fundraising events, supporting local services, helplines, and providing assistance to survivors. Topic 4 revolves around community engagement and support related to sexual violence. The tweets may mention joining teams, spreading the word, and supporting survivors through initiatives such as silent auctions. The topic highlights the importance of community participation and collaboration in addressing sexual violence.

Appreciation

The least common theme revealed 3 topics, including “gratitude and appreciation for support,” “thanking supporters and donors,” and “gratitude for engagement and participation.” This theme revolves around expressing gratitude and appreciation for support, donations, and contributions. Topic 1 revolves around expressing gratitude and appreciation for the support received. The tweets thank individuals, organizations, and community members, and the topic emphasizes the importance of acknowledging and recognizing the contributions of supporters. Topic 2 focuses on thanking supporters and donors for their contributions. The tweets express gratitude toward individuals and organizations for their generous donations and ongoing support. The topic highlights the significance of recognizing and thanking those who have contributed to the cause. Topic 3 focuses on expressing gratitude for engagement and participation. The tweets thank individuals for sharing information, participating in events such as walks or auctions, and making a difference. The topic emphasizes the importance of community involvement and active participation.

Principal Findings

This study presents a comprehensive classification of Twitter messages that elucidate the reasons for social media use among SA support centers in Canada. Leveraging a data set of 297,360 tweets from 133 SA support organizations, the application of supervised machine learning enabled us to automatically predict content analytical themes within the Twitter corpus. First, we identified the emerging classifications of Twitter’s use by human service nonprofits. The results indicated that Twitter is used by SA centers across Canada for various purposes. The identified classifications include (1) community engagement, (2) organization administration, (3) public awareness, (4) political advocacy, (5) support for others, (6) partnerships, and (7) appreciation. These categories reflect the multifaceted nature of human service nonprofits’ communication strategies and their engagement with stakeholders. Second, the findings of this study contribute to the existing literature by expanding the understanding of social media use by human service nonprofits beyond the traditional focus on advocacy-related purposes. Although advocacy remains an important aspect, this research reveals that these organizations use social media to achieve a diverse range of objectives, such as raising public awareness, community engagement, and organization administration. Third, the sentiment and emotion analysis of tweets shed light on the emotional tone of different tweet categories. The prevalence of “fear” among organizational tweets underscores the gravity of the issues addressed by human service nonprofits. In contrast, the emotion of “joy” associated with the partnership and appreciation categories highlights the positive impact of community involvement and support. Fourth, the application of machine learning in this study has proven to be valuable in predicting content analytical themes in a large Twitter corpus. The predictive classification model outperformed human coders in terms of accuracy, indicating the potential of machine learning algorithms in analyzing social media data and gaining deeper insights into nonprofits communication strategies.

Typology and Theoretical Framework of Online Organizational Communication Objectives

A key discovery from our study pertains to the distribution of tweet categories. The analysis revealed that the most frequent type of posts falls under the “public awareness” category. Approximately one-third of the collected tweets were classified within this category, signifying that SA support organizations predominantly use social media platforms for advocating against issues related to intimate partner violence and sexual violence. These findings align with prior literature, highlighting how social media allows organizations to disseminate content aimed at increasing awareness while incurring minimal costs [ 8 ]. Our topic modeling results uncovered 3 salient themes within the public awareness category, which encompass tweets that emphasize the need to raise awareness, advocate for addressing gender-based violence issues, and support survivors of sexual violence and women’s rights. This emphasis on awareness-raising activities reflects the pivotal role social media plays in creating awareness for organizations and fostering interactions with donors and volunteers [ 55 , 56 ].

Community engagement emerges as the second most prominent reason for social media use by SA organizations in Canada, constituting approximately one-fourth of all collected tweets. This category generated 3 distinct topics through classifications, where community engagement entails nonprofits engaging with their community beyond their primary mission. These tweets include sharing well-wishes, updates on organization activities, quotes, and information about resources that the community may find valuable. Although some tweets do touch on providing information beyond their primary mission, the main focus remains on community engagement concerning sexual violence support. The nuanced examination of tweet contents provided by our topic modeling analysis sheds light on the multifaceted nature of community engagement efforts by SA support organizations. It is evident that these organizations recognize the significance of engaging with their communities regarding sexual violence and related matters through social media. Consistent with existing literature, our findings align with the view that social media offers an avenue for powerful participation and community engagement [ 57 ]. It also emphasizes the potential role of social media as a mechanism to raise awareness and inform the community of various initiatives and projects [ 58 ]. Although community engagement through social media remains an opportunity for SA support organizations to connect with their communities and market their services, further research should delve into the effectiveness of engagement across all aspects of design, delivery, and evaluation, particularly with regard to specific objectives such as supporting and combating sexual violence.

Sentiments and Emotions in Different Categories in the Typology

Sentiment analysis is used to examine the evaluative perspectives expressed within the text, with its importance stemming from its ability to comprehend the shifting dynamics, potential interventions, and predictive insights into public sentiment regarding trending events. It serves as a valuable tool for offering decision-making support to relevant authorities in the realms of public sentiment monitoring, intervention, and governance. Our sentiment and emotion analysis yielded valuable insights into the emotional tone of the tweets related to each identified online organizational communication objective. Most tweets exhibited a neutral sentiment, surpassing both the negative and positive categories across all 7 classes. This prevalence of neutrality could be attributed to the sensitive nature of the topic, as SA is a deeply distressing issue. However, it is worth noting that tweets related to partnerships and appreciation displayed a greater presence of joy as the dominant emotion, indicating positive sentiments associated with community engagement, support, and expressions of gratitude.

Machine Learning Classification

The evaluation of the machine learning model’s performance on the test set showcased promising results. The model demonstrated improvement in average sensitivity scores, from 48.3% to 53.1%, indicating its ability to accurately classify tweets into their respective categories and provide reliable predictions for content analytical themes. Nonetheless, it is essential to acknowledge that there is still room for improvement in the model’s performance, particularly in accurately classifying tweets related to partnerships and political advocacy, which constituted smaller segments of the data set.

Implications

Our research carries significant implications for both practitioners and policy makers in the field of SA support services. The typology we have developed represents a substantial advancement in research within this domain and provides a comprehensive framework for understanding how these organizations can effectively use Twitter to disseminate information and engage with the public at the message level. This typology empowers human service nonprofits to align their social media strategies with specific organizational goals. By understanding the different categories and topics of Twitter communication, these organizations can tailor their content and engagement strategies to maximize the impact and relevance of their online presence.

The study emphasizes the importance of social media as a potent communication tool for engaging with communities, raising public awareness, and providing essential information and support. Through an understanding of the diverse communication themes and strategies used by SA support organizations, practitioners can optimize their social media use to effectively reach and connect with their target audience.

On the basis of our research findings, we recommend that human service nonprofits invest in social media education and training for their personnel to enhance their understanding of how to use social media effectively. By building a strategic approach to social media use that aligns with organizational objectives, these nonprofits can maximize their impact and outreach, ultimately furthering their mission to support and advocate for survivors of SA.

Limitations

The study has certain limitations that need to be acknowledged. The predictive performance of the model is influenced by factors such as human annotation, interrater agreement, and the training data set. The trained model attempts to mimic the classification by the human coders, whose understanding of the tweet content and familiarity with the background and theoretical framework is critical to the study. In this regard, the study underwent 4 rounds of training to attain a satisfactory interrater reliability score. However, future studies could incorporate more human coders to enhance the accuracy of the results. Furthermore, our analysis focused solely on Twitter data from SA support organizations in Canada. This geographic and platform limitation may restrict the generalizability of our findings to other countries and social media platforms. Future research should consider expanding the scope to include a more diverse range of organizations and platforms. Finally, although our machine learning model demonstrated promising performance, there is still room for improvement. The accuracy of the model in classifying tweets related to partnerships and political advocacy was relatively lower compared to other categories. Further refinement and fine-tuning of the model could enhance its accuracy and reliability.

Conclusions

In conclusion, our study offers valuable insights into the application of machine learning to understand the message-level communication purposes of SA support organizations on Twitter in Canada. By combining social science and computer science, we effectively analyzed a large data set and identified content analytical themes, sentiments, emotions, and topics within tweets. These findings enrich our understanding of how SA support organizations use social media for community engagement, public awareness, and organizational administration purposes. The implications extend to practitioners, policy makers, and organizational personnel, emphasizing the significance of education and training to maximize the benefits of social media in achieving organizational goals within the realm of SA support services.

Acknowledgments

The authors would like to extend gratitude to Qiaoru Zhang and Yiding Jin for their contributions to the data validation process of our study. Qiaoru Zhang diligently identified organizations with active Facebook or Twitter accounts, thereby ensuring the reliability and relevance of our data sources. Yiding Jin collected a sample of the Facebook data set.

Data Availability

The data sets generated during and analyzed during this study are available from the corresponding author on reasonable request.

Conflicts of Interest

None declared.

Confusion matrix for the independent data sets.

The number of tweets collected each year.

The histograms of the categories in the human-labeled data: (1) community engagement, (2) organization administration, (3) public awareness, (4) political advocacy, (5) support for others, (6) partnerships, and (7) appreciation.

Top unigrams in the tweets.

Top bigrams in the tweets.

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Abbreviations

Edited by A Mavragani; submitted 08.08.23; peer-reviewed by MO Khursheed, N Hu; comments to author 31.08.23; revised version received 12.10.23; accepted 08.04.24; published 08.05.24.

©Jia Xue, Micheal L Shier, Junxiang Chen, Yirun Wang, Chengda Zheng, Chen Chen. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 08.05.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.