title: Experiences of disability consumer-directed care users in Australia: results from a longitudinal qualitative study.
abstract: The rapidly growing body of literature suggests that Consumer-directed Care (CDC) has the potential to empower consumers and improve the flexibility and quality of care. However, reports highlighting quality and risk concerns associated with CDC focusing on a longer time frame have been few. This paper presents the findings from a qualitative longitudinal evaluation of an Australian CDC programme. Focusing on the period between 2003 and 2008, it reports on the experiences of 12 families caring for a dependent family member. It is based on two external evaluations completed 6 and 36 months after enrollment, and one internal evaluation completed 48 months after enrollment. The findings were triangulated with internal memos, reports and minutes of meetings, as well as with the theoretical literature. The study demonstrates that CDC harbours considerable benefits for people with disabilities and their carers. However, the study also suggests that, over time, carers may experience an increased sense of isolation and lack of support as a result of their involvement in the CDC programme. The paper argues that the development of safeguards addressing these weaknesses is crucial for the sustainability of CDC programmes in contexts where risk cannot be simply transferred onto consumers.
authors.affiliation: School of Nursing, Deakin University, Melbourne, Australia. goetz.ottmann@deakin.edu.au
authors.forename: Goetz
authors.initials: G
authors.lastname: Ottmann
authors.forename: Carmel
authors.initials: C
authors.lastname: Laragy
authors.forename: Michelle
authors.initials: M
authors.lastname: Haddon
mesh_terms: D000293:Adolescent; D001315:Australia; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D003256:Community Participation / Q000191:economics*; D003258:Consumer Behavior; D019988:Children with Disabilities; D005260:Female; D006699:Home Care Services / Q000191:economics*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008483:Medical Assistance; D010342:Patient Acceptance of Health Care; D055815:Young Adult