Family narratives of lives with persistent physical symptom conditions

Background: Literature reviews revealed no existing research on family narratives of living with multigenerational persistent physical symptom (PPS) conditions. The current study examined the personal and family narratives of one such family, from a relational/systemic perspective.

Method: This research employed a qualitative research design, specifically using narrative methodologies to explore the experiences of a single family comprising two parents and their three children. All the children and their mother had a diagnosis of Ehlers–Danlos syndrome (EDS) but are specifically afflicted with PPS. The father is in good health. Using narrative inquiry, the family members were interviewed together and then individually. The interviews were audio-recorded, transcribed and analysed using narrative analysis in NVivo.

Findings: Overarching narratives were stories of loss and sacrifice and stories of family unity. An exploration of the family’s negotiation of roles and identities is presented in the context of stigmatised illness.

Discussion: Novel findings are presented in the context of the central role of the mother, the importance of family cohesion and the impact to family life resulting from living with stigmatised illness. Lastly, clinical implications and future research ideas are discussed.