Developing consumer-directed care for people with a disability: 10 lessons for user participation in health and community care policy and program development.
This paper outlines 10 lessons derived from the development of a consumer-directed care program for families with disabled children in Melbourne, Australia. The following program elements proved to be of importance over the course of the development process: (1) research participants should be involved as early as possible; (2) an open, inclusive communication style in conjunction with a good understanding of potential concerns and a careful framing of the policy issue is required to build trust and allow meaningful collaboration; (3) various strands of evidence have to be woven together; (4) ongoing commitment and support from management and key stakeholders; (5) effective knowledge transfer and cultural change processes; (6) capacity building; (7) mediation of power differentials; (8) community building; (9) participant re-engagement strategies; and (10) solid project management skills.
Uniting Community Options-Deakin University, 221 Burwood Highway, Burwood, VIC 3125, Australia. goetz.ottmann@deakin.edu.au
Goetz F
GF
Ottmann
Carmel
C
Laragy
D002675:Child, Preschool; D003153:Community Health Services / Q000458:organization & administration*; D055812:Community-Based Participatory Research / Q000458:organization & administration*; D019988:Children with Disabilities; D005192:Family Health; D006291:Health Policy; D006801:Humans; D011368:Professional-Family Relations; D016730:Program Development; D014739:Victoria