Recruitment and retention into longitudinal health research from an adolescent perspective: a qualitative study

Abstract

Background High quality longitudinal studies investigating changes in health behaviours over the transition into early adulthood are critical. However, recruiting and retaining adolescents is challenging. This study explored adolescents’ perspectives of signing up to and continuing involvement in a hypothetical longitudinal health research study. Methods Forty-eight individuals (15-20y) participated in nine in-person focus groups about recruitment and retention in research. Participants were (a) school students in the last year of compulsory school (Year 11, 15-16y), (b) school/college students in Sixth Form (Year 13, 17-18y), (c) Further Education students studying after secondary education, but not higher education (16-18y) and (d) young adults not in education, employment, or training (18-20y) across England. Thematic analysis resulted in seven themes. Results Driving factors for sign-up included social connection e.g., joining with peer groups, personalised feedback, and incentives, primarily financial. Key barriers were lack of interest, the perception of commitment, and timing of recruitment. Young people preferred recruitment processes via social media with messages tailored to their motivations, monthly data collection of maximally 20–30 min, and hybrid data collection with some in-person contact with a consistent, non-judgemental researcher. The provision of autonomy, choice, and financial incentives were perceived to promote retention. Conclusions Adolescent recruitment and retention strategies need to align with contemporary interests and motivations. Studies should involve adolescents early to develop a planned, systematic approach to participant sign-up and follow-up. Effective and ineffective recruitment and retention strategies should be reported as part of study findings. Future research should trial how perceived barriers to study engagement can be overcome.

Feasibility of Recruiting and Retaining Adolescents into a Prospective Cohort Study of the Effects of Social Isolation During COVID-19

“…Importantly, a systematic review and meta-analysis of retention of adolescents in longitudinal cohort studies found that improved retention was not associated with increasing the number of such enhancing strategies, but instead associated with barrier-reduction strategies (i.e., those reducing participant burden, such as exibility in data collection) (42). A recent qualitative study of adolescent perspectives on engaging in longitudinal health studies found that key factors for continued involvement include user-friendly reporting (such as technology-based assessment and integration of smartphone apps), exible scheduling, and avoiding excessive outreach (43).…”

“…Although our study did meet the recruitment rate criteria of 30%, our retention rate fell under 80% and was not su cient to progress to a larger cohort study without further re nement of the study protocol. Our study did incorporate many of the suggestions for effective research engagement set forth in previous studies, such as app-based data collection, offering of nancial incentives, and leveraging pre-existing subject relationships with the research team and/or healthcare institution (43). However, the persistent di culties in subject retention suggest that there were additional barriers to participation.…”

Studying social anxiety without triggering it: Establishing an age-controlled cohort of social media users for observational studies

“…After extracting a group of users that reported being in the correct age range of [13][14][15][16][17][18][19][20][21][22][23][24][25],…”

“…These studies suffer from known limitations such as reporting bias 19 , recall bias 20 , negativity bias 21 and post-event processing issues 22 . While there have been studies focused on getting information directly from adolescent patients 23,9 , obtaining clinically relevant insights from adolescents, such as patient-reported outcomes, is complicated by challenges with recruitment and patient retention 24 . Best practices for adolescent recruitment emphasize the need to employ a wide variety of recruitment methods, such as text messages, social media, and word of mouth 25 , and a focused and judicious strategy to reduce the participant's burdens 26 to maximize cohort retention.…”

“…Annotation results of reports of other comorbidities. The table contains the overall totals, the totals in each age group (Adolescents[13][14][15][16][17][18] and Young Adults[19][20][21][22][23][24][25]) and the totals when considering the certainty of a SAD diagnosis (user reports going to therapy or having a SAD diagnosis). Reports of Attention Deficit Disorder are clustered under Attention-deficit/hyperactivity disorder, and Asperger's under Autism Spectrum Disorder.…”