Developing psychosocial support for parents and carers of children and young people with an appearance-affecting condition or injury

Children and young people with appearance-affecting conditions and injuries report common pervasive psychosocial difficulties, regardless of cause or nature of their visible difference. When present alongside the typical challenges of parenting (e.g., practical challenges of childcare, developmental transition points such as puberty and adolescence), parents or carers may also experience psychosocial difficulties related to their child’s visible difference. Current literature is confined to exploring condition-specific concerns of parents, typically in respect to cleft lip and palate (CLP) and burn injuries. Due to the wide range of conditions and injuries which may cause a visible difference, the experiences of parents of many affected children and young people are unknown. Study 1 took a qualitative approach, utilising individual interviews and focus groups to explore the cross-condition experiences and support needs of parents and carers of children with a variety of visible differences. It was found that parents can experience common psychosocial difficulties regardless of the nature or cause of their child’s visible difference. The qualitative themes highlighted that some parents do experience psychological distress related to their child’s appearance difference. Parents also reported concerns about preparing their child to independently manage challenges related to their condition or injury and lacked clarity about how best to provide support. Study 2 aimed to increase the generalisability of the findings of study 1 and investigate risk and protective factors for parent psychosocial adjustment. The online survey findings aligned with the qualitative data from study 1 and identified several possible cross-condition risk and protective factors. Despite the cross-condition findings of studies 1 and 2, evidence-informed cross condition support for this population is lacking. Based on the integrated mixed methods findings, the content for an evidence-informed cross-condition intervention was drafted. This content was informed by the Acceptance and Commitment Therapy therapeutic model. Study 3 took a collaborative Participatory Action Research approach to involve individuals with lived experience of parenting a child with a visible difference and professional advisors. Parents and health and support professionals attended online group workshops and discussed and provided feedback on the content and design of the draft intervention. Finally, study 3 aimed to assess acceptability of the content and design of the intervention. Parents were asked to view the materials and complete an online feedback survey. The findings from this survey indicated that parents found both the content and the presentation of the intervention acceptable.The studies within this PhD add new knowledge and understanding to the field of visible difference. The intervention output is an innovative and novel evidence-informed intervention for parents of children with a wide range of appearance-affecting conditions and injuries, which aims to promote psychosocial adjustment in this population. A full list of the outputs from this PhD can be found in Appendix A and the intervention materials can be found in Appendix M