City Research Online

Abstract

Purpose: To understand how people experience and make sense of having a sibling with Hypermobility Spectrum Disorder (HSD) or Hypermobile Ehlers-Danlos Syndrome (hEDS) and the meaning they place on caring or supporting their sibling.

Methods: Six adults with a sibling diagnosed with HSD or hEDS, who did not personally meet formal diagnostic criteria, participated in semi-structured interviews. Interpretative Phenomenological Analysis was used to analyse data.

Results: Three superordinate themes were identified: i) emotional consequences of having a sibling with EDS, ii) interference with life, iii) absence of support. A transcending theme throughout was the conflict participants experience between having a caring and supportive role for their SWEDS versus being a sibling. Participants reported a lack of trust in professionals due to a perceived lack of knowledge on the conditions. As part of their caring and supportive role, they take on the roles of researcher, advocate and help the family to collectively cope, whilst experiencing a conflict between being a carer or sibling and little support is available for them.

Conclusions: Increased psychological and educational support is needed for siblings and clinicians should consider the views of siblings and the family during the diagnostic process and when considering treatment plans, as they can also be affected. It is imperative to consider rarer physical health conditions before making assumptions and for clinicians to willingly learn about conditions clients present with. This is the first study to date on the experiences of people who have a sibling with HSD or hEDS with previous research focusing on patients and parents and larger studies are warranted in this area.

Publication Type:	Thesis (Doctoral)
Subjects:	B Philosophy. Psychology. Religion H Social Sciences > HQ The family. Marriage. Woman R Medicine R Medicine > RC Internal medicine
Departments:	School of Health & Medical Sciences > Department of Psychology & Neuroscience School of Health & Medical Sciences > School of Health & Medical Sciences Doctoral Theses Doctoral Theses

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