Qualitative research with people who live with chronic illness and pain

A chronic illness qualitative research program that has been in progress since 1996 has focused on understanding the experience of long-term illness and how people can learn to incorporate the symptoms and consequences of illness into their lives. A primary healthcare philosophy has underpinned this research program which has been undertaken in a community health practice setting. The philosophy guiding this research program has been researching with people; hence the principles of primary healthcare (PHC) and participatory action research (PAR) have provided the theoretical framework. We have researched with both men and women who have diverse chronic conditions. Pain appears to be a constant companion in the lives of some people. We have come to understand that health workers may be the expert in clinical matters, but the person with the illness is the expert in his or her own life. Prescriptions for treatment may have little impact unless an understanding of the social and cultural context of a person's life is gained. Qualitative research is a mode of research that may lead us to a greater appreciation of the complexity of living with chronic pain. In this chapter we focus on ways people with chronic illness express and experience pain and how qualitative research can facilitate our understandings of their experiences. Our aim is to reveal the possibilities of qualitative research as an approach that may give voice to people who may be silent or have been silenced by objectivist research practices. Rather than focus on the cause or treatment of pain, we show the way we have used qualitative research to provide context to the lives lived with pain and the meanings ascribed to the experience of pain. The aims of this chapter are to trace the development and share the findings of our research with men and women who live with pain, and to explore the ways that qualitative research can inform our understandings of the experience of living with long term and persistent pain. To achieve this, we will begin by introducing the chronic illness experience research program of which these studies with people who live with pain have been a part, and then explicate the participatory action research methodology we have utilized extensively to harness qualitative research findings. We will share our current theorizing and work in progress and explore contributions from the wider qualitative research literature