Towards an understanding of consumer participation in health care : a participatory research approach

Abstract

Health consumer participation is increasingly being stressed by policy makers as increased numbers widely accept that health consumer participation is pivotal to consumer centered ideology, in health promotion, hospital and community care, health education and empowering health care systems. The literature shows that health consumer participation represents interactions which range from a loose arrangement where there may be value simply in participating irrespective of the outcome to interactions which represent total consumer control. Perhaps equally as important as the ‘degree’ of control by health consumer or health worker, is the ‘nature’ of the interaction accompanying participation, which may signal accompanying health consumer empowerment through processes which individuals can increase control over events which determine their lives. In order to achieve this, a radical paradigm shift in health care is required. This thesis seeks to explain and explore participation in health care from the viewpoint of health consumers, health workers, and health administrators. In assessing this examination from the viewpoint of three major stakeholder groups there is an inherent attempt to adopt a holographic view where the abstraction of participation is seen from a wider perspective of both recipients and providers of health care services. A central focus for comparison of data in the thesis draws from viewpoints highlighted through the dialogue of a video designed as a research tool to assist and focus the participatory research process. The thesis begins a current and important debate which may enhance further research and dialogue between rival paradigms which impact on empowerment and participatory health care systems. This thesis seeks to offer an alternative paradigm to health care delivery - that of a participatory consumer focus which is enacted through the methodology of the research itself - that of participatory research where the research and health care agenda is influenced by the participants who are actively involved in the conceptualisation, design, and implementation of health care and the research study itself. The participatory process was sought in an attempt to promote an ongoing process of creative reformulation of the health care delivery system and the thesis seeks to encourage this ongoing process by recognising itself as a tentative proposal within the broader context of dialogue occurring through health care reform.