Priority setting for children and young people with chronic conditions and disabilities.

BACKGROUND: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. METHODS: We conducted a three-stage study based on the James Lind Alliance priority-setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia. RESULTS: In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis. CONCLUSIONS: The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. PATIENT OR PUBLIC CONTRIBUTION: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD.

Self-Compassion, Wellbeing, and Distress in Adolescents and Young Adults with Chronic Medical Conditions: the Mediating Role of Emotion Regulation Difficulties.

OBJECTIVES: Adolescents and young adults with chronic medical conditions report higher distress and lower wellbeing than their physically healthy peers. Previous research suggests that self-compassion is negatively correlated with distress and positively correlated with wellbeing among healthy young people, as well as adults with chronic medical conditions. The current study aimed to extend these findings to a sample of adolescents and young adults with chronic medical conditions. This study also aimed to replicate findings observed in other populations by testing emotion regulation difficulties as a mediator of this relationship. METHODS: Adolescents and young adults aged 16 to 25 with chronic physical medical conditions (N = 107) completed an online survey including measures of self-compassion, emotion-regulation, wellbeing, and distress. Two mediation models were tested using the PROCESS macro in SPSS, with distress and wellbeing as outcomes. RESULTS: Self-compassion had a significant direct negative association with distress and a significant direct positive association with wellbeing. While self-compassion and emotion regulation difficulties explained a large amount of variance in both wellbeing, R 2 = .31, p < .001, and distress, R 2 = .46, p < .001, no support was found for the mediating role of emotion regulation difficulties between self-compassion and wellbeing. However, emotion regulation difficulties mediated the relationship between self-compassion and distress. CONCLUSIONS: These findings suggest that an emotion regulation model of self-compassion may be applicable to young people with chronic medical conditions. Future research within this population may evaluate programs that develop self-compassion and emotion regulation skills.