The experience of fatigue for adults living with HIV

Aims. The aim of this study was to go beyond objective clinical assessment and explore the experience of fatigue and self‐care strategies with adults who live with HIV. Rationale. This study responded to a perceived lack of available evidence to inform the practice of service providers about ways fatigue impacts on the lives of people with HIV. Prior understandings of fatigue are derived from survey or instrument‐based tools or studies that do not consider the complexities of the personal experience that in‐depth interviews can elicit. The focus remains generally on description, measurement or management from a biomedical perspective. Methods. A qualitative study using participatory action research methods was conducted during 2003 with 15 adults diagnosed with HIV who perceived fatigue was a problem in their lives. Data were collected by individual interviews, researcher's notes and two participatory action research groups. Results. Thematic analysis of data demonstrated that fatigue remains silent and invisible to participant's families, friends and employers. Fatigue experienced by people living with HIV generally also met with a lack of acknowledgement and understanding from health professionals. People developed self‐care strategies over many years of trial and error. Relevance to clinical practice. People living with a HIV seek to be acknowledged that fatigue is a legitimate concern, not only by health care professionals, but also people with whom they live. It is imperative that nurses who work with people living with HIV‐related fatigue consider the wider social aspects of the person's life as well as physical symptoms. Most importantly, there then needs to be a process of engagement and active listening to the individual's account of their experience of fatigue. Advocating that fatigue is a legitimate complaint to the person living with HIV as well as the wider public and professional community is imperative.