Despite global interest in cancer service reform, evidence for best practice adolescent and young adult(AYA) care is scarce.
This study investigated treatment experiences of AYAs and their parents to inform a program logic model of best-practice supportive care. We present here the financial challenges encountered during and after treatment.
This mixed method study included in-depth interviews (60 AYAs; 60 parents) and a nationally representative survey (197 AYAs; 204 parents). Content/thematic analyses were applied to qualitative responses. Descriptive statistics were applied to survey data.
Over half of AYAs and parents reported financial difficulties following the diagnosis and treatment of cancer. Top-ranking difficulties were vehicle and medical expenses (AYAs) and vehicle (parking, fuel) and utility costs (parents). AYAs reported considerable need for government income support (GIS) (58% on-treatment;45% post-treatment). Many parents also reported needing GIS (38% on-treatment;26% post-treatment); some were significantly challenged to meet even basic needs (food, housing). More than 80% of participants seeking GIS reported access difficulties: staff encounters were characterised by insensitivity about the seriousness of ill-health (including requirements to attend public GIS offices despite immunosuppression); conflicting advice about entitlements and changing decisions about eligibility; and lengthy delays processing claims. AYAs and parents described this exacerbating the distress associated with the diagnosis and treatment of cancer.
Families commonly experienced a double layer of financial hardship through the loss of AYA and parent income due to illness and carer responsibilities. Negative interactions with GIS staff compounded these distressing circumstances. These findings indicate a gap in the capacity of the GIS system to adequately respond to the age, employment and illness characteristics of the AYA population and their carers. Youth-friendly care should include greater emphasis on AYA and family financial support, while systematic reform to reduce the financial burden for individuals and families appears indicated.