Adolescents and young adults with a life threatening illness: Preferences for support services
Key objective:
To investigate the preferences and trade-offs for support services in a group of adolescents and young adults with a life threatening illness
Life-threatening illnesses in young people are traumatic for patients and their families. Support services can help patients and families deal with various non-medical impacts of diagnosis, disease and treatment. The aim of this study was to determine which types of support are most valued by adolescents and young adults (AYA) with cancer or blood disorders and their families.
A discrete choice experiment (DCE) was performed. Separate experiments were conducted with AYA and their guardians. Types of support included in the experiment were: assistance returning to school/work; emotional support for the patient and/or family; financial support; spiritual support; and cultural support.
Completed surveys were returned by 83/88 AYA and 78/79 guardians. AYA preferred emotional support for themselves (either by counsellors and/or peers), emotional support for their family, financial support and assistance returning to school/work over services relating to cultural and spiritual needs. Covariate analysis indicated female AYA were more likely than males to prefer emotional support, while males were more likely to prefer assistance returning to work/school and to have an aversion for cultural needs.
Guardians preferred emotional support for their dependants and assistance returning to school/work. To a lesser extent, they valued financial and emotional support for themselves. Like AYA, they were indifferent about services relating to cultural and spiritual needs.
Providing the types of support services that people prefer should maximise effectiveness. Results from this DCE can inform evidence-based health policy decision making about the types of support services provided for AYA and their families.
This study was presented at AHES, Brisbane 2007. A journal article has been prepared and submitted for peer review.
Funding source
CHERE
CHERE staff
Stephen Goodall
Collaborators
Madeleine King1
1. University of Sydney
