What do young adolescents think about taking part in longitudinal self-harm research? Findings from a school-based study

Abstract

BackgroundResearch about self-harm in adolescence is important given the high incidence in youth, and strong links to suicide and other poor outcomes. Clarifying the impact of involvement in school-based self-harm studies on young adolescents is an ethical priority given heightened risk at this developmental stage.MethodsHere, 594 school-based students aged mainly 13–14 years completed a survey on self-harm at baseline and again 12-weeks later. Change in mood following completion of each survey, ratings and thoughts about participation, and responses to a mood-mitigation activity were analysed using a multi-method approach.ResultsBaseline participation had no overall impact on mood. However, boys and girls reacted differently to the survey depending on self-harm status. Having a history of self-harm had a negative impact on mood for girls, but a positive impact on mood for boys. In addition, participants rated the survey in mainly positive/neutral terms, and cited benefits including personal insight and altruism. At follow-up, there was a negative impact on mood following participation, but no significant effect of gender or self-harm status. Ratings at follow-up were mainly positive/neutral. Those who had self-harmed reported more positive and fewer negative ratings than at baseline: the opposite pattern of response was found for those who had not self-harmed. Mood-mitigation activities were endorsed.ConclusionsSelf-harm research with youth is feasible in school-settings. Most young people are happy to take part and cite important benefits. However, the impact of participation in research appears to vary according to gender, self-harm risk and method/time of assessment. The impact of repeated assessment requires clarification. Simple mood-elevation techniques may usefully help to mitigate distress.

Development and Validation of the Suicide Behaviours Questionnaire – Autism Spectrum Conditions in Autistic, Possibly Autistic and Non-Autistic Adults.

“…Participants were then asked for consent to complete the SBQ-R and SBQ-ASC again in two weeks. Subsequently participants were provided with a full debrief including information about further information and support, followed by a positive mood induction procedure (a doodle page with jokes, puzzles and cute animal videos) which has proved effective in previous research exploring similar topics [42].…”

Key ethical questions for research during the COVID-19 pandemic

“…Finally, providing mood mitigation to all participants is an important method to boost mood, particularly when participants have been asked to consider anxiety-provoking questions about COVID-19 and answer sensitive questions about selfharm or suicide. A number of methods including exam howlers, 5 cute animal pictures, 4 interactive websites, 6 and so-called doodle pages 7 have been shown to work for young people. The ethics of voucher lotteries and other incentives for participants in studies on suicide and self-harm have been questioned by lived experience authors.…”

“…When other initiatives to improve mental health care for BME communities have failed to produce meaningful or sustainable change, 7 why should this project succeed? There are several reasons to believe that this approach will change the current, discriminatory dynamics of mental health care.…”

Children and young people’s experiences of completing mental health and wellbeing measures for research: learning from two school-based pilot projects

“…• Present key information to participants in an accessible manner (e.g., videos), as the written information sheets typically used may not be fully digested by participants; • Ensure that information clarifies the purpose of data collection and how data will/will not be used, including explicit clarity on procedures of anonymity and confidentiality; • Remind participants of the anonymity and/or confidentiality (as appropriate) of their responses at the end of completion along with clear signposting for relevant avenues of support, and encourage schools (or other delivery agent) to facilitate help-seeking after completion; • Work with schools to take steps to make clear to CYP that their participation is voluntary rather than compulsory (e. researchers could provide definitions of frequently misunderstood words to facilitate understanding; • When integrating multiple measures, inspect overlap and fit across the framework to avoid unnecessary repetitiveness and length; • It may be beneficial to structure a measurement framework so that measures comprising mostly positive items are presented at the beginning and end to facilitate a more emotionally positive experience; indeed, recent evidence indicates mood-mitigation activities such as a doodle page at the end of a measurement framework may be helpful following emotionally sensitive measure completion [41]; • Including a qualitative strand within the overall project may facilitate a deeper understanding of phenomena and ensure prioritisation of CYP voice; and • Computer-based administration may be preferable to paper completion for research with CYP.…”

“…At present, there is relevant literature relating to the experience of CYP research participation more generally [38,39], as well as school-based research engagement [31][32][33][34][35] and mental health measure completion for clinical purposes [40]. However, to our knowledge, there is no prior research exploring CYP's experiences of completing mental health and wellbeing measures for school-based research (though a recent study explored school-based completion of self-harm measures [41]). As researchers, there is a responsibility to explore and understand how self-report processes are experienced by CYP in mental health research, including in particular contexts, in order to offer appropriate procedures that are ethical, reliable, and valid, and can meet the needs of this group.…”