Chronic illness: reflections on a community-based action research programme.

Abstract

The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness. Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live 'well'. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme. The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme. We assert that the facilitator's skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate. If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.