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'You Can Help People': Adolescents' Views on Engaging Young People in Longitudinal Research

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Title: 'You Can Help People': Adolescents' Views on Engaging Young People in Longitudinal Research
Language: English
Authors: Robbins, Spring C. Cooper, Rawsthorne, Margot, Paxton, Karen, Hawke, Catherine, Skinner, S. Rachel, Steinbeck, Katharine
Source: Journal of Research on Adolescence. Mar 2012 22(1):8-13.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 6
Publication Date: 2012
Document Type: Journal Articles
Reports - Research
Descriptors: Focus Groups, Adolescents, Foreign Countries, Recruitment, Attitude Measures, Longitudinal Studies, Participation, Rural Areas, Motivation, Sampling, Biology
Geographic Terms: Australia
DOI: 10.1111/j.1532-7795.2011.00759.x
ISSN: 1050-8392
Abstract: We sought to discover adolescents' thoughts about participation in longitudinal research and identify recruitment and retention strategies that were meaningful to them. We conducted seven focus groups with 10-15-year-olds in two large rural centers in New South Wales, Australia, and all focus groups were digitally recorded, transcribed, and analyzed. Adolescents discussed factors salient to their involvement in focus groups, as well as factors that may influence involvement in a longitudinal study. At the outset of the focus groups, adolescents had a positive view of "research," but were reluctant to engage in research that involved biologic samples. Effective recruitment of adolescents requires an appreciation of motivators, and time and resources to extend potential participants' understanding.
Abstractor: As Provided
Entry Date: 2012
Accession Number: EJ956686
Database: ERIC
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  Value: <anid>AN0071842779;7mg01mar.12;2019May30.11:31;v2.2.500</anid> <title id="AN0071842779-1">'You Can Help People': Adolescents' Views on Engaging Young People in Longitudinal Research. </title> <p>We sought to discover adolescents' thoughts about participation in longitudinal research and identify recruitment and retention strategies that were meaningful to them. We conducted seven focus groups with 10–15‐year‐olds in two large rural centers in New South Wales, Australia, and all focus groups were digitally recorded, transcribed, and analyzed. Adolescents discussed factors salient to their involvement in focus groups, as well as factors that may influence involvement in a longitudinal study. At the outset of the focus groups, adolescents had a positive view of "research," but were reluctant to engage in research that involved biologic samples. Effective recruitment of adolescents requires an appreciation of motivators, and time and resources to extend potential participants' understanding.</p> <p>Published literature on recruitment of adolescent research participants is largely based on opportunistic debriefs. A review of published examples of adolescent involvement in school‐based prevention and intervention programs found that most authors did not report processes for recruiting and retaining adolescents (Blom‐Hoffman et al.,). We sought to discover adolescents' thoughts about and understanding of participation in longitudinal research, and to identify recruitment and retention strategies that were meaningful to them.</p> <p>The current research was a preliminary stage of a three‐year longitudinal study of the relationships between puberty hormones and adolescent health and wellbeing (the Adolescent Rural Cohort study on Hormones, Health, Education, Environment & Relationships—ARCHER—study), where annual blood samples and more frequent urine samples, as well as yearly self‐completed questionnaires and annual height and weight, are required.</p> <hd id="AN0071842779-2">Background</hd> <p>Our current understanding of adolescent health and morbidity relies mainly on successive cross‐sectional data. Few longitudinal studies have successfully involved adolescents and the collection of biologic data (Nicholson & Rempel,). Particularly challenging areas for researchers conducting longitudinal studies include: (<reflink idref="bib1" id="ref1">1</reflink>) ethical issues preventing use of incentives in recruitment of adolescents; (<reflink idref="bib2" id="ref2">2</reflink>) lack of relevance to adolescents' interest; and (<reflink idref="bib3" id="ref3">3</reflink>) recruitment and attrition during middle adolescence (Steinbeck, Baur, Cowell, & Pietrobelli,). Thus, adolescents remain relatively under‐researched and are therefore disadvantaged in terms of potential health benefits resulting from research (Sanci, Sawyer, Weller, Bond, & Patton,).</p> <p>The aims of the study were to inform research techniques by gaining greater knowledge of: (<reflink idref="bib1" id="ref4">1</reflink>) adolescents' understanding of and attitudes toward research; (<reflink idref="bib2" id="ref5">2</reflink>) ethical and methodological issues around more sensitive research areas such as puberty, sexuality, and collection of blood and urine samples, and (<reflink idref="bib3" id="ref6">3</reflink>) engagement strategies appropriate for adolescents involved in longitudinal research.</p> <hd id="AN0071842779-3">Method</hd> <p></p> <hd id="AN0071842779-4">Setting and Participants</hd> <p>We conducted seven focus groups with 10–15‐year‐olds (mixed and single gender) in two large rural areas in the state of New South Wales, Australia. Eligible participants were individuals aged between 10 and 15 years, with signed parental consent and individual assent.</p> <hd id="AN0071842779-5">Recruitment</hd> <p>Various recruitment processes were implemented until the target number (3–4 focus groups, each with 5–10 adolescents) was reached in both sites. Recruitment included direct approach by one researcher (involved in the focus group as an observer) to parents who were acquaintances, distribution of flyers in two schools, and a one‐day weekend advertisement in local newspapers. Despite multiple processes, there was a strong reliance on word‐of‐mouth recruitment.</p> <hd id="AN0071842779-6">Focus Group Interview Procedures</hd> <p>Four single‐sex focus group interviews (two male and two female) as well as three mixed‐group interviews were held. The focus groups were conducted at the two University of Sydney Schools of Rural Health campuses on a weekday after school. The average focus group interview duration was 62 minutes (range: 52–70 minutes). Group numbers ranged from 5 to 11 participants and were conducted by a moderator and two observers. Two experienced focus group moderators conducted separate focus groups and were unknown to all of the participants. The note‐taking observer was known to some of the adolescents; she lived in one of the towns where focus groups were conducted.</p> <p>The facilitators provided snacks prior to the focus group. While the students had snacks, the facilitator and observers talked to the youth to help break researcher‐participant barriers. When the focus group began, an ice‐breaker was conducted to further increase adolescents' comfort: adolescents were asked to brainstorm or draw their ideas about what they thought research was.</p> <p>Components of the proposed ARCHER study specimen collections were discussed. Adolescents rated their acceptability of a method of data collection (i.e., blood sample), followed by a discussion about the data collection and methods for making it more acceptable. At the end of each data collection discussion, participants rated their acceptability of the method.</p> <p>Motivations for participation in research were explored; the recruitment and retention portions of the discussions were the focus of analysis in the present article. The questions prompting these discussions were: (<reflink idref="bib1" id="ref7">1</reflink>) What would motivate you to become involved in research (including focus group involvement)? (<reflink idref="bib2" id="ref8">2</reflink>) Do you have any suggestions about how we can ensure young people continue for the whole length of the research? (<reflink idref="bib3" id="ref9">3</reflink>) Do you think young people who participate in our study should get a reward of some type? (Prompts: what? Should this be for individuals or for the town?) (<reflink idref="bib4" id="ref10">4</reflink>) How do you think we should involve young people in our study? (Prompts: they could give us advice, encourage others to become involved, help us to understand the results...).</p> <p>Students were able to choose either a $20 department store gift card or $20 mobile phone credit at the conclusion of the focus group as a token appreciation of their involvement.</p> <hd id="AN0071842779-7">Data Analysis</hd> <p>All focus groups and interviews were digitally recorded, transcribed verbatim, and analyzed by the research team. NVIVO (a qualitative data analysis program) was used to assist in managing the data. The first two authors performed separate content analyses and then discussed identified themes and concepts. No major discrepancies were identified.</p> <p>The study was approved by the University of Sydney Human Research Ethics Committee.</p> <hd id="AN0071842779-8">Results</hd> <p>A total of 58 students were recruited equally across both sites (males 46%). Primary school (aged 10–12 years) and secondary school (aged 13–15 years) students made up 46% and 54% of the sample, respectively (see Table).</p> <p>See Figure  for a pictorial view of the results.</p> <p>Graph: Visual representation of themes.</p> <p>Participants by Location, Gender, and Level of School</p> <p> <ephtml> <table><thead valign="top"><tr><th /><th align="center">Dubbo</th><th align="center">Orange</th><th align="center">Total</th></tr><tr><th align="center">Male</th><th align="center">Female</th><th align="center">Male</th><th align="center">Female</th><th align="center">Male</th><th align="center">Female</th></tr></thead><tbody><tr><td align="left">Primary</td><td align="char" char=".">5</td><td align="char" char=".">11</td><td align="char" char=".">5</td><td align="char" char=".">5</td><td align="char" char=".">10</td><td align="char" char=".">16</td></tr><tr><td align="left">Secondary</td><td align="char" char=".">3</td><td align="char" char=".">10</td><td align="char" char=".">14</td><td align="char" char=".">5</td><td align="char" char=".">17</td><td align="char" char=".">15</td></tr></tbody></table> </ephtml> </p> <hd id="AN0071842779-9">Opinions and Feelings Prior to Focus Group Discussions</hd> <p>To the adolescents, research often meant homework, books, the Internet, and working on computers. Many adolescents also mentioned that research was "good" or "helpful" to both themselves and the wider population. Despite these positive feelings, many adolescents were originally skeptical of longitudinal research that involved providing several biologic samples.</p> <hd id="AN0071842779-10">Recruitment to the Focus Group: Motivation for Participation</hd> <p></p> <hd id="AN0071842779-11">External factors</hd> <p></p> <hd id="AN0071842779-12">Parental encouragement</hd> <p>For younger participants (10–12‐year‐olds), parental encouragement was quite important in their participation in the focus group. Parental engagement with the purpose of the research was important, as noted by one participant:</p> <p>–[I'm here cause] Mum told me to... she thought everyone ought to be here.(Girl, Dubbo, 10–12 years).</p> <p>While parents were still supportive, the older participants (13–15‐year‐olds) exercised a greater choice in participation than younger participants ("<emph>Yeah, Dad showed me the paper but I decided to come along</emph>" compared with "<emph>I'm here because mum signed me in and I didn't even really know</emph>").</p> <hd id="AN0071842779-13">Peer influence</hd> <p>While parents were a motivator for many younger adolescents, peer encouragement was the main reason many focus group participants attended. Many adolescents invited a friend or two to attend the focus group with them.</p> <p>Female: I'm almost 14 and I came because she [indicating friend] wanted me to.Female 2: I'm 14 and I came because she [indicating friend] asked me to. (Mixed, 13–15, Orange).</p> <hd id="AN0071842779-14">Incentive</hd> <p>nitially, most of the adolescents did not know that they would receive snacks and acknowledgement of their time in the form of a $20 phone credit or gift card, but many adolescents were very appreciative. In later focus groups, some adolescents had heard from friends or siblings that an incentive was involved, and commented that the promised reward increased their desire to participate.</p> <hd id="AN0071842779-15">Internal factors</hd> <p></p> <hd id="AN0071842779-16">Making new friends</hd> <p>Most adolescents cited external factors as reasons for being involved in the focus group. However, internal factors resounded more strongly with some participants, with making new friends, or meeting new people of interest to some of the adolescents.</p> <hd id="AN0071842779-17">Experience/just because</hd> <p>IOther adolescents mentioned that they wanted to experience a focus group or wanted to be involved because it sounded like fun. "<emph>I came here [to the focus group] to see what it's like because I haven't done it before</emph>" (Girls, 10–12, Dubbo).</p> <hd id="AN0071842779-18">Large Study Engagement: Motivation for Participation</hd> <p></p> <hd id="AN0071842779-19">External factors</hd> <p></p> <hd id="AN0071842779-20">Incentives</hd> <p>Financial incentives were most strongly endorsed by a younger boys' focus group. However, over the course of the discussion, this group identified a range of non‐financial motivations ("<emph>because it was a good thing</emph>"). Among the older participants, financial incentives were seen as a "bonus" rather than the driving force behind participation. Most young people supported modest incentives such as phone cards, music downloads, and movie passes, and felt that the financial rewards should be age‐sensitive:</p> <p>I think you would have to have different age groups get different prizes because you give some six to eight year olds an iPhone for instance, they're not going to use it very well, but then again the littler kids will probably do it for less. (Girl, 10–12, Orange)</p> <p>A number of the focus group participants expressed individualistic values in relation to incentives. In general, they felt any rewards given should be to those directly involved. This individualism may reflect the intimate nature of the participation (i.e., repeatedly providing urine samples), with one participant commenting, "<emph>The town didn't pee in a bag</emph>" (13–15 year old boy, Orange).</p> <p>When pressed, some participants felt that schools involved in recruitment could be rewarded by, for example, sponsored excursions. A few adolescents also spoke about rewards that could be shared among their whole family.</p> <hd id="AN0071842779-21">Peer influence</hd> <p>Many adolescents voiced that they would like to be part of a research study of which their friends were a part. They also mentioned that they would like to be able to recruit friends into a study in which they were involved.</p> <hd id="AN0071842779-22">Internal factors</hd> <p></p> <hd id="AN0071842779-23">Interest/social good</hd> <p>A strong thread among the focus groups was the notion of participation as a social contribution: "<emph>I'd just do it cause it was a good thing to do</emph>" and "<emph>it could save somebody's life</emph>" (Girls, 10–12, Dubbo). When asked about possible incentives, some adolescents indicated that incentives weren't necessary: "<emph>I'd just do it for free</emph>," "<emph>I would just do it</emph>" (Boys, 10–12, Dubbo), or that they'd participate to "<emph>help Australia</emph>" (Mixed, 10–12, Orange).</p> <hd id="AN0071842779-24">Study engagement/acknowledgement</hd> <p>Connected to this desire to make a social contribution was a desire for acknowledgement, such as a certificate or public announcement, as a motivation for participation. Some adolescents were interested in contributing directly to the study by designing newsletters, planning social events, or even driving researchers to collect samples as they reached driving age.</p> <hd id="AN0071842779-25">Making new friends</hd> <p>Another strong thread among the focus groups, particularly among girls, was the socializing opportunities created by participation. Many talked about participation being motivated by a desire to meet new people, as the following comments reveal:</p> <p>–You get to be with new people...–Maybe every, end of the month, not individual prizes but everybody comes in to a big party and they have competitions...(Girls, 10–12, Dubbo).</p> <hd id="AN0071842779-26">Learning about themselves</hd> <p>Adolescents also wanted to be a part of research to learn about themselves. They expressed interest in receiving feedback and newsletters during the course of the study that were personalized with their feedback. Older participants indicated that this would act as a motivator to continue in the study, as they would learn about how to "take care" of their bodies.</p> <hd id="AN0071842779-27">Opinions and Feelings After Focus Group Discussions</hd> <p></p> <hd id="AN0071842779-28">Enjoyment of the focus group</hd> <p>At the conclusion of the sessions, participants in these focus groups were asked to confidentially rate their experience of participation and were overwhelmingly positive, with comments like:</p> <p>–That was great!–Have a group like this whenever you have to do it so it would keep kids coming if they had a meeting to look forward to.</p> <hd id="AN0071842779-29">Focus groups as recruitment</hd> <p>Research methods that value young people (such as focus groups) are likely to increase successful adolescent engagement. Adolescents in these focus groups were more inclined to join a longitudinal study involving biologic sampling at the end of the focus groups compared with the beginning.</p> <hd id="AN0071842779-30">Discussion</hd> <p>Our research found that young people's motivation to engage in research varies by age and gender. While incentives were important to the adolescents we interviewed, they did not need to be financially based; altruism was found to be an important motivator for participation.</p> <p>Altruism and helping friends and family were identified as important motivators in two separate study questionnaires given to adolescents, although both populations were very different to ours (Stanford et al., ; Villarruel, Jemmott, Jemmott, & Eakin,). While both previous studies found selflessness to be important to adolescent participation, our results are in a novel population, and emerged from data without prompts about altruism.</p> <p>Peer recruitment and the social opportunities possible through research participation were also important recruitment motivators to adolescents in our study. Past research has found that peer relationships are also important to retention (Clark‐Jones & Broome,).</p> <p>Our study found that detailed explanations of the research purpose and methodology appeared to increase interest in participation through the process of the focus group. It is likely that participants' underlying altruistic feelings and attitudes (i.e., "research helps people") were a strong foundation for building the attractiveness of research for young people. Establishing and then building on adolescents' good will toward research will probably contribute toward high levels of adolescent engagement.</p> <p>A possible limitation is that adolescents' expressed enthusiasm for the research was influenced by their peers. To promote the expression of other views, we asked adolescents to anonymously rate their enthusiasm to be involved in specific aspects of the study, after discussing them and receiving qualitative descriptors of their willingness. We asked adolescents to rate their willingness to participate in blood and urine collections, using a 1–5 scale, where 1 was "very ok with it" and 5 was "not ok with it at all." While there were some participants who were not enthusiastic about blood or urine collection following the focus group discussion, the vast majority of adolescents were okay with both: blood collection ratings ranging from 1 to 5, with the average being 2.3; urine collection ratings ranging from 1 to 5, with the average being 2.2.</p> <p>Our focus groups mainly consisted of participants from independent or private (non‐government) schools. This was probably due to the limitations of the recruitment process; accordingly, the findings may only reflect those of higher socio‐economic background. However, the adolescents in our focus groups underwent a marked change in opinion over the course of the focus group. This, in conjunction with research recommendations, suggests that other adolescents may also respond positively to being actively engaged.</p> <p>Care needs to be taken that adolescents are not coerced (by researchers or parents) or induced (via incentives) to participate. One method of increasing levels of informed consent is by having young participants explain the research process back to researchers in an interactive forum (Lamb, Puskar, & Tusaie‐Mumford,). This interactive process is reminiscent of a focus group interaction, which the current study found to be a method with potential for successful adolescent research recruitment. Furthermore, explanatory focus groups may be an effective recruitment strategy (Bagnoli & Clark,).</p> <p>Recruitment and retention strategies that respond to aspects that young people have identified as important are more likely to be successful in adolescents' engagement. Effective recruitment of adolescents requires an appreciation of motivators, as well as time and resources to extend potential participants' understanding. The wealth of information received in a short period suggests that focus groups are integral to research with adolescents.</p> <ref id="AN0071842779-31"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Supported by Sydney Medical School Foundation. Each author would also like to acknowledge their respective departmental affiliations. Cooper Robbins and Skinner: Discipline of Paediatrics and Child Health; Rawsthorne: Department of Social Work & Policy Studies; Paxton and Hawke: School of Rural Health; Steinbeck: Department of Adolescent Medicine.</bibtext> </blist> </ref> <ref id="AN0071842779-32"> <title> References </title> <blist> <bibtext> Bagnoli, A., & Clark, A. (2010). Focus groups with young people: A participatory approach to research planning. Journal of Youth Studies, 13, 101 – 119.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref2" type="bt">2</bibl> <bibtext> Blom‐Hoffman, J., Leff, S. S., Franko, D. L., Weinstein, E., Beakley, K., & Power, T. J. (2009). Consent procedures and participation rates in school‐based intervention and prevention research: Using a multi‐component, partnership‐based approach to recruit participants. School Mental Health 1, 3 – 15.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref3" type="bt">3</bibl> <bibtext> Clark‐Jones, F., & Broome, M. E. (2001). Focus groups with African American adolescents: Enhancing recruitment and retention in intervention studies. Journal of Pediatric Nursing, 16 (2), 88 – 96.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref10" type="bt">4</bibl> <bibtext> Lamb, J., Puskar, K. R., & Tusaie‐Mumford, K. (2001). Adolescent research recruitment issues and strategies: application in a rural school setting. Journal of Pediatric Nursing, 16 (1), 43 – 52.</bibtext> </blist> <blist> <bibl id="bib5" type="bt">5</bibl> <bibtext> Nicholson, J. M., & Rempel, L. A. (2004). Australian and New Zealand birth cohort studies: breadth, quality and contributions. Journal of Paediatrics and Child Health, 40 (3), 87 – 95.</bibtext> </blist> <blist> <bibl id="bib6" type="bt">6</bibl> <bibtext> Sanci, L. A., Sawyer, S. M., Weller, P. J., Bond, L. M., & Patton, G. C. (2004). Youth health research ethics: Time for a mature‐minor clause? The Medical Journal of Australia, 180, 336 – 338.</bibtext> </blist> <blist> <bibl id="bib7" type="bt">7</bibl> <bibtext> Stanford, P. D., Monte, D. A., Briggs, F. M., Flynn, P. M., Tanney, M., Ellenberg, J. H. et al. (2003). Recruitment and retention of adolescent participants in HIV research: Findings from the REACH (Reaching for Excellence in Adolescent Care and Health) Project. Journal of Adolescent Health, 32, 192 – 203.</bibtext> </blist> <blist> <bibl id="bib8" type="bt">8</bibl> <bibtext> Steinbeck, K. S., Baur, L. A., Cowell, C. T., & Pietrobelli, A. (2009). Clinical research in adolescents: Challenges and opportunities – using obesity as a model. International Journal of Obesity, 33, 2 – 7.</bibtext> </blist> <blist> <bibl id="bib9" type="bt">9</bibl> <bibtext> Villarruel, A. M., Jemmott, L. S., Jemmott, J. B., & Eakin, B. L. (2006). Recruitment and retention of Latino adolescents to a research study: Lessons learned from a randomized clinical trial. Journal for Specialists in Pediatric Nursing, 11, 244 – 250.</bibtext> </blist> </ref> <aug> <p>By Spring C. Cooper Robbins; Margot Rawsthorne; Karen Paxton; Catherine Hawke; S. Rachel Skinner and Katharine Steinbeck</p> <p>Reported by Author; Author; Author; Author; Author; Author</p> </aug>
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  Data: We sought to discover adolescents' thoughts about participation in longitudinal research and identify recruitment and retention strategies that were meaningful to them. We conducted seven focus groups with 10-15-year-olds in two large rural centers in New South Wales, Australia, and all focus groups were digitally recorded, transcribed, and analyzed. Adolescents discussed factors salient to their involvement in focus groups, as well as factors that may influence involvement in a longitudinal study. At the outset of the focus groups, adolescents had a positive view of "research," but were reluctant to engage in research that involved biologic samples. Effective recruitment of adolescents requires an appreciation of motivators, and time and resources to extend potential participants' understanding.
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    PhysicalDescription:
      Pagination:
        PageCount: 6
        StartPage: 8
    Subjects:
      – SubjectFull: Focus Groups
        Type: general
      – SubjectFull: Adolescents
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Recruitment
        Type: general
      – SubjectFull: Attitude Measures
        Type: general
      – SubjectFull: Longitudinal Studies
        Type: general
      – SubjectFull: Participation
        Type: general
      – SubjectFull: Rural Areas
        Type: general
      – SubjectFull: Motivation
        Type: general
      – SubjectFull: Sampling
        Type: general
      – SubjectFull: Biology
        Type: general
      – SubjectFull: Australia
        Type: general
    Titles:
      – TitleFull: 'You Can Help People': Adolescents' Views on Engaging Young People in Longitudinal Research
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Robbins, Spring C. Cooper
      – PersonEntity:
          Name:
            NameFull: Rawsthorne, Margot
      – PersonEntity:
          Name:
            NameFull: Paxton, Karen
      – PersonEntity:
          Name:
            NameFull: Hawke, Catherine
      – PersonEntity:
          Name:
            NameFull: Skinner, S. Rachel
      – PersonEntity:
          Name:
            NameFull: Steinbeck, Katharine
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 03
              Type: published
              Y: 2012
          Identifiers:
            – Type: issn-print
              Value: 1050-8392
          Numbering:
            – Type: volume
              Value: 22
            – Type: issue
              Value: 1
          Titles:
            – TitleFull: Journal of Research on Adolescence
              Type: main
ResultId 1