Understanding the experience of children aged between five and thirteen years old and their parents undergoing long-term treatment for juvenile dermatomyositis : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Auckland, New Zealand

Abstract

This thesis examines the emotional and practical challenges faced by children with juvenile dermatomyositis and their parents during treatment. It also explores the challenges experienced on the journey to diagnosis. Juvenile dermatomyositis (JDM) is a rare chronic childhood autoimmune disease with the average age of onset of 7 years old with a girl-to-boy ratio of 3:1 (Pachman et al., 2021). The international annual incidence of juvenile dermatomyositis is 1.7-3 per million, as reported by Concannon (2021). The existing literature demonstrates a robust focus on biomedical interventions for juvenile dermatomyositis; however, empirical investigations into the experiences of children and their parents remain scarce. This study primarily utilises parental perspectives to highlight the systemic challenges that may influence the treatment experience of children with juvenile dermatomyositis. Purposive sampling was used to recruit participants to complete an anonymous survey, resulting in sixteen survey participants. Of those sixteen survey participants, five agreed to an interview. The results were analysed using reflexive thematic analysis and descriptive statistics. The main findings were the need for advocation during the journey to diagnosis and throughout treatment, treatment experience, and parent knowledge. There was a common thread of emotional resilience required for constant advocation, mental labour for treatment logistics, and the need for independent research due to lack of information given around prognosis and treatment options. The research revealed a significant lack of mental health services offered for the child or the family, highlighting the need for psychosocial support for both children and their families due to the ripple effect that treatment experience has. Future research could benefit from prioritising the voices of the children and gaining access to a larger, more diverse sample pool.