Consumers and health professionals’ perceptions of Participatory Action Research in developing a health resource

Abstract

Multiple Sclerosis (MS) has a relatively high prevalence in New Zealand (NZ), which was the setting for this study. Fatigue is a common and one of the most disabling symptoms of MS. Recent research focus has been on developing other ways to manage fatigue than via medication. Participatory Action Research (PAR) is an innovative method of including consumers in the research process. The aim of this qualitative study was to explore perceptions of consumers and health professionals of PAR methodology in the development of a selfmanagement programme for fatigue in MS and to identify considerations for health professionals when working with consumers in the development of health resources. Nine of the ten participants in the PAR group agreed to be interviewed. Semi-structured, individual interviews were audiorecorded and transcribed, then analysed thematically. The themes of ‘Having a voice’, ‘Accomplishment’ and ‘The process’ were all linked by an umbrella theme of ‘Empowerment’. Consumers and health professionals perceived that the PAR experience was positive  and valuable because it facilitated the sharing of knowledge between health professionals and people directly affected by MS. We believe PAR is a useful tool to facilitate a patient centred approach in developing relevant health resources.