Exploring familial psychosocial support needs following an adolescent and young adult cancer diagnosis: a mixed methods study

A cancer diagnosis during adolescence and young adulthood is associated with a range of experienced adverse psychological, social and developmental outcomes (5, 7-11). Whilst this growing body of research makes a considerable contribution to our current understanding of the psychological impact of cancer and the various factors that are associated with it, significant gaps in our understanding still remain, which hinders the development of policy and interventions to help support AYAs (adolescents and young adults) and their families. There is an AYA Cancer Service Network in Ireland (12), yet in NI there are currently no age-appropriate psychological support services for AYAs with cancer and their families (13). The need for developing effective psychosocial support services for AYACS (adolescents and young adult cancer survivors) is a vital element to improve psychological wellbeing, QoL and resilience amongst this group (5, 10), but the development of such services must be evidence-based. Despite research highlighting the importance of family support for AYAs with cancer, a significant limitation is that most research focuses on AYAs individual needs (5). The family provides an ecosystem of support, but little is known about the ways that families provide support and help AYACS navigate the transition from adolescence into young adulthood (6).

This proposed mixed-methods study will provide an opportunity towards identifying and generating recommendations for psychological support services for families of AYACS. The study will build upon and extend a current study that is exploring the psychosocial needs of AYACS across the island of Ireland. The study aims to identify familial impact and support needs during and following an AYAs cancer diagnosis. Specifically, the core objectives are to determine the impact of cancer diagnosis upon family; explore current familial support services and identify need; assess what role family plays in supporting AYAs with cancer; and develop partnerships with key stakeholders to make available robust evidence to inform policy and practice regionally.