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

Abstract

Background In recent years there has been growing interest in child and adolescent mental health and wellbeing, alongside increasing emphasis on schools as a crucial site for research and intervention. This has coincided with an increased use of self-report mental health and wellbeing measures in research with this population, including in school-based research projects. We set out to explore the way that children and young people perceive and experience completing mental health and wellbeing measures, with a specific focus on completion in a school context, in order to inform future measure and research design. Methods We conducted semi-structured interviews and focus groups with 133 participants aged 8–16 years following their completion of mental health and wellbeing measures as part of school-based research programmes, using thematic analysis to identify patterns of experience. Findings We identified six themes: Reflecting on emotions during completion; the importance of anonymity; understanding what is going to happen; ease of responding to items; level of demand; and interacting with the measure format. Conclusions Our findings offer greater insight into children and young people’s perceptions and experiences in reporting on their mental health and wellbeing. Such understanding can be used to support more ethical and robust data collection procedures in child and adolescent mental health research, both for data quality and ethical purposes. We offer several practical recommendations for researchers, including facilitating this in a school context.

Involving adolescents with intellectual disability in the adaptation of self‐reported subjective well‐being measures: participatory research and methodological considerations

“…Recent PR is showing evidence of the capability of adolescents with ID to provide a unique perspective of their own subjective well-being, thereby having a more inclusive role in research (Ikeda et al 2016). Over the last decade, and in line with the trend of using PR in adolescents with ID, there has been an increase in their use within school-based research to develop, design and adapt self-reported QoL measures for this target population (Foley et al 2012;Boström et al 2016;Ikeda et al 2016;Demkowicz et al 2020). However, a significant limitation of this work is the lack of consultation with young people with ID to adapt the measures and the lack of transparency on what modifications were made, thus limiting the ability of others to build on such work or assess the appropriateness of the measures in these contexts.…”

“…2016; Demkowicz et al . 2020). However, a significant limitation of this work is the lack of consultation with young people with ID to adapt the measures and the lack of transparency on what modifications were made, thus limiting the ability of others to build on such work or assess the appropriateness of the measures in these contexts.…”

‘Shall We Send a Panda?’ A Practical Guide to Engaging Schools in Research: Learning from Large-Scale Mental Health Intervention Trials

“…This will allow staff to book computer rooms and prepare for their pupils to complete the survey. Providing resources to help with research literacy is also important to help staff convey the research aims and wider context to pupils [ 25 ].…”

Readability of Commonly Used Quality of Life Outcome Measures for Youth Self-Report

“…Young people have raised challenges associated with the readability and broader comprehensibility of mental health and wellbeing measures, with issues including unfamiliar words; ambiguous wording; and complex, double-barrelled sentences [ 3 ]. Commonly used youth mental health measures have been found to often not be age appropriate with regards to their required reading level [ 4 ].…”