Developing Consumer-Directed Care for People with a Disability: 10 Lessons for User Participation in Health and Community Care Policy and Program Development

Article excerpt

Abstract. 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 reengagement strategies; and (10) solid project management skills.

What is known about the topic? User involvement in planning and decision making has become the policy of choice for government as well as health and social care service providers in most democratic countries. However, there are few examples highlighting key factors for successful user involvement.

Whatdoes this paper add? Based on a longitudinal review of a program developed with significant user involvement, this paper outlines 10 key requirements underpinning participatory strategies for project and policy design.

What are the implications for practitioners? Participatory methodologies are potentially complex, have to be meticulously planned and resourced, and have to be carefully managed. To meaningfully involve users in more intricate projects may require the input of experienced professionals.

Objectives

User involvement in planning and policy decision making has become the policy of choice for government as well as health and social care service providers in most democratic countries.1-7 This makes a lot of sense. Indeed, a growing body of research evidence suggests that actively engaging users in the program and policy design process leads to better policy outcomes.5 Yet this transition to a more participatory and collaborative mode of program and policy design has been uneven. In many health and social care programs, public participation is often restricted to the operational level where users can only influence the service mix they receive and user input into program design and policy making is often minimal.4,7-12 This is understandable. The transition to a more participatory mode of program and policy development requires a fundamental shift in professional practice and takes time and sustained effort. Moreover, little guidance is available for those who aspire to a more active involvement of user groups in decision-making processes. The lessons outlined in this paper were designed to provide health and social care professionals with a practical guide for an active and ongoing inclusion of user groups.

Setting, participants and methodology

We derived the following 10 lessons from a longitudinal study conducted between 2003 and 2008. The study gave rise to a Consumer-Directed Care (CDC - see Box 1 for an overview) project for people with disabilities and their carers or families hosted by UnitingCare Community Options (UCCO), a subsidiary of the UnitingCare network, a large provider of aged and social care in Australia. A detailed description of this government- funded project has been published elsewhere.13,14 Because of the limited scope of this paper, only a very cursory summary of the project is given.

The project was constructed in three stages. The predevelopment stage (1) involved the identification of potential participants as well as the development of knowledge and infrastructure elements underpinning the participatory approach. Approximately 20 families caring for a son or daughter with a disability in their homes declared an interest in participating in the project. …