Family Narratives of Lives Where Both Parent and Child Have Been Diagnosed with Persistent Physical Symptom (PPS) Conditions

Abstract

There is a limited body of research that explores the lived experiences of families with persistent physical symptoms (PPS) conditions and no qualitative research on the intergenerational component to PPS. Existing research focusing on PPS conditions is often researched from several different, individualised perspectives, such as; the person with PPS (adult or child), their GP or healthcare professional (HCP) or the parents of the child with PPS. Additionally, much of the intervention or treatment research about PPS is based on cognitive behavioural therapy (CBT) or psychodynamic approaches. To the author’s knowledge, there is no current research on exploring the storied lives of a family where there are two generations of PPS. The current study aimed to think about the unique life events of a family with multiple generations of PPS from a relational/systemic perspective. This study employed a qualitative study design, specifically using narrative methodologies to explore the lived experiences of a single family comprising two parents and their three children aged 17, 15 and 12 years old. All the children and their mother have 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 following narrative analytic methodologies. The findings initially presented the storylines of each of the individuals and from the group interview. The main overarching narratives were stories of loss and sacrifice, stories of family unity and a story of collective versus individualistic language. Lastly, the family’s negotiation of roles and identities is explored in the context of stigmatised illness. The findings were then reviewed in context. Clinical implications and future research ideas are discussed.