Stories of a long life with HIV: a qualitative study of a narrative intervention

BACKGROUND: The dominant story of HIV in Denmark portrays HIV as compatible with a nearly normal life. International research on the experiences of elderly people diagnosed with human immunodeficiency virus (HIV) in the 1980s to mid-1990s challenges this narrative.

AIMS: To gain knowledge on the experiences of elderly long-term survivors of HIV in Denmark and to evaluate if a narrative intervention 'giving voice' to this specific group was experienced as improving their quality of life.

METHODS: In collaboration with relevant stakeholders, we developed a narrative intervention at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care focusing on the experiences and stories of people having lived a long life with HIV. Nineteen women and men living with HIV were included in the study. The intervention's evaluation design was based on ethnographic fieldwork that included participant observation and focus group interviews. The qualitative data were analysed using thematic content analysis.

RESULTS: The findings show that the dominant story on HIV does not adequately cover the experiences of elderly Danes who have lived a long life with HIV. The participants continue to suffer from late complications and physical, existential, emotional and social challenges. The narrative intervention helped improve how participants experienced their quality of life.

CONCLUSION: Long-term elderly Danish survivors diagnosed with HIV in the 1980s to mid-1990s suffer from complex symptoms and problems related to living their lives with HIV and treatment. They found that telling and sharing their life stories with other people with HIV gave them a sense of coherence, meaning and direction in life.

RELEVANCE: The study documents the experiences of a group of long-term survivors of HIV in Denmark, making it relevant for organisations supporting people with HIV and for health care professionals working with this group. Furthermore, the study adds to the knowledge base on the use of narrative methods in rehabilitation.