F18 ‘They’re not there for you’: impact of service organisation on the psychosocial experiences of young people with johd, and their parents, in england

Abstract

Introduction Previous studies examining family carers’ experiences of support services have highlighted the role of interpersonal factors such as trust, honesty and the importance of listening to family members. However, little is known about how service organisation issues impact upon family members’ psychosocial experiences and, more broadly, their perceptions of effective support. Aim To identify key components of effective support from the perspectives of young people with Huntington’s Disease and their family carers. Methods The paper presents findings from qualitative data generated within a multiphase, mixed-methods study. Multiple strategies (including referrals from clinical genetics centres and from the Huntington Disease Association) were utilised to identify families. 24 family interviews were conducted, of which 9 included young people with JOHD. Data was subjected to framework analysis. Results For many families, formal support services are experienced as sub-optimal, with consequent negative impact on families’ psychosocial experiences. Seven core components of effective support were identified. These were: proactivity; accessibility and ease of communication; positive interpersonal relationships; continuity of relationships; partnership working; specialist knowledge of JHD and; access to a key worker. Conclusion There is considerable potential to improve the support provided to young people with JHD and their family carers. Key to such improvement is the allocation of a key worker with whom family members can initiate and maintain contact over time as the disease progresses, the young person’s health deteriorates and support needs change. [Research funded by the NHS National Institute for Health Research. Research for Patient Benefit stream. PB-PG-112–29056]