Oral Presentation COSA-IPOS Joint Scientific Meeting 2012

How do adolescent and young adult (AYA) siblings of cancer patients fit into current service delivery in Australia?: An exploration of health care professionals’ (HCP) perceptions. (#47)

Marika Franklin 1 , Pandora Patterson 1 , Amanda Ross-Buckton 2
  1. CanTeen Australia, Sydney, NSW, Australia
  2. School of Social and Political Sciences, The University of Sydney, Sydney, Australia

Siblings of cancer patients are at risk of experiencing significant adverse psychosocial functioning. Research also reports AYA siblings have a high number of unmet needs and these are associated with substantial psychological distress. Recent years have seen the emergence of policy and guidelines discussing the importance of addressing the psychosocial needs of siblings and practicing family centred care within the health care system. At present however, it is unclear how well these policies and guidelines translate into service delivery for siblings. To successfully improve support for siblings it is critical to understand how siblings are catered for in current service delivery. HCP are well placed to provide insight on this important issue.

A qualitative phenomenological study was adopted. Nine semi-structured interviews were conducted and thematic analysis undertaken. Participants were HCP from Australian hospital settings. A purposive sampling strategy was used.

HCPs recognised the impact a child’s cancer diagnosis had on AYA siblings however few settings addressed their needs. HCPs perceived paediatric settings were better able to accommodate the needs of siblings compared to adult or AYA settings. Challenges to meeting AYA siblings’ needs included varying models of care across paediatric, AYA and adult settings; siblings’ needs perceived as not being the priority by HCP, parents, patients and siblings themselves; limited resource availability; limited opportunities to engage with siblings; and lack of assessment processes for siblings.

Formalised routine psychosocial care was acknowledged as still a recent and challenging feature of care for AYA cancer patients. Exactly how the service could extend to siblings was unclear. These findings make an important contribution to understanding HCP perceptions of siblings’ needs and highlight the invisibility of siblings in current service delivery models.