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

Aim. The purpose of this paper is to describe the birth of a research cultu re in a community nursing service, and the development and implementation o f an action research programme that focuses on understanding the experience s of living with chronic illness. Background. Approximately 70% of the clients of our community nursing pract ice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic cond itions to live 'well'. In this paper we describe the way in which we have a pplied the principles of participatory action research (PAR) when working w ith women who live with multiple sclerosis (MS) and urinary incontinence. W e then draw on elements of PAR research with men who live with MS and men a nd women who live with type 2 diabetes. In total, we have convened eight PA R groups researching with people who live in the community with chronic ill ness and this work constitutes our chronic illness research programme. Design. The PAR philosophy is based on the principles of democratic, equita ble, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborati ve inquiries the researchers have facilitated participants to reflect on ho w illness affects their lives, to tell their own story, make connections, p lan action and help them negotiate the rites of passage. We select two area s for discussion: methodological issues in the application of PAR principle s and our tentative findings from the chronic illness research programme. Findings. 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 r esult of action at an individual level, with improved self-management of ch ronic illness, or at a collective level where the PAR group instigates larg er reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of trans ition toward incorporating the illness into their lives. Although we have n ot yet identified specific events, we have noted that there are critical tu rning points in the illness transition experience. Participants feel valida ted 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 participa te. Conclusion. If health care professionals can understand the process that fa cilitates people to move toward incorporating chronic illness into their li ves, We can make a substantial contribution to enhance their chronic diseas e self care management.