Exploring the experiences of individuals, parents, and siblings living with Epidermolysis Bullosa: A qualitative thematic synthesis and interpretative phenomenological analysis

Downey, Sarah 2025. Exploring the experiences of individuals, parents, and siblings living with Epidermolysis Bullosa: A qualitative thematic synthesis and interpretative phenomenological analysis. ClinPsy Thesis, Cardiff University. Item availability restricted.

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Abstract

The current thesis investigates the lived experiences of individuals with Epidermolysis Bullosa (EB) and their families. A systematic review was conducted on the existing qualitative literature on the individual experience of EB, and that of parents/caregivers to people with EB. The empirical research considers the experience of the healthy siblings of children with EB, by collecting parent and sibling views. EB is a rare, chronic skin condition which causes blistering when the skin is exposed to friction. EB is incurable and is treated using dressing changes which can take up large amounts of time and usually require the support of another person. Some people use the term ‘butterfly skin’ to describe how fragile EB makes the skin, but others do not like this term as it undermines the pain, itch and discomfort the condition causes. There is an emerging collection of research on the experiences of individuals with EB and their families. Some researchers have previously attempted to collate the existing literature by conducting reviews on the quantitative literature or using pre-defined concepts such as ‘quality of life’. These reviews have varied in rigor and quality, which limits their usefulness to professionals caring for individuals with EB. Therefore, a systematic literature review was conducted to collate, synthesise and appraise the existing qualitative EB literature (i.e., research which has involved capturing the views of participants using methods such as interviews and focus groups). Four databases were searched, which resulted in 994 studies being identified. These studies were systematically screened against the inclusion criteria to identify the relevant studies. Twenty-six studies were included in the review. Some studies included data from individuals with EB themselves, and their parents/caregivers, or data from both adults and children with EB. The data of individuals with EB, and parents/caregivers of people with EB were analysed and presented separately in the review. The results show that for individuals with EB, difficult childhood experiences have a lasting impact into adulthood and can negatively influence how children and adults feel about themselves. Individuals with EB face the challenge of managing the physical symptoms of the condition, and how it impacts their abilities to interact with the world and others. The results showed that parents/caregivers held a lot of responsibility for managing their child’s condition, and did not always feel supported by healthcare professionals. These challenges impacted family relationships and parental mental health. The review also showed that the overall quality of qualitative EB literature varies greatly, and many studies struggled to evidence reflexivity which is an important part of qualitative research. The review supports healthcare professionals sharing knowledge about EB to better inform their practise, and the need for psychological support for individuals with EB and family members. It also identified that there is not enough qualitative research which captures the views of children and adolescents. The second part of the thesis focuses on the sibling experience of EB. Previous research, and the aforementioned systematic review shows that having a child with EB puts additional stress on parents/caregivers due to things such as time-consuming dressing changes, feeling distressed at witnessing their child in pain, and that EB disrupts many elements of family life. When some parents have been interviewed for research, they have mentioned that they worry about their other children who are healthy. They have reported that these healthy siblings may have less time and opportunities for activities, lack attention from their parents and sometimes may be involved in EB care. However, no researchers have asked the siblings of children with EB directly what they think about their brother/sister having EB and how it impacts their lives. The empirical study is the first one to interview siblings of children with EB. Seven parent-child sets participated, with all fourteen people being interviewed separately. Having separate interviews was intended to allow parents and children to speak more freely. An approach called ‘Interpretive Phenomenological Analysis’ was used to analyse the data. Sibling and parent data were analysed separately, to help ensure the unique sibling experience was clearly represented. Four main themes were found for siblings. The themes showed that the emotional wellbeing of siblings is impacted by EB, and that although EB changes parts of family life, siblings want their family to be seen as normal. Five parent themes were found. Parents felt that siblings had less time within the family because of EB. Sometimes parents presented sibling experiences in a way that was less upsetting for them, but may not have reflected the siblings’ experience completely. These themes are important as they give insight into how family members understand EB to impact the brothers/sisters of children with EB. The results show that professionals working with children with EB should consider how EB is affecting their siblings too.

Item Type:	Thesis (DClinPsy)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Psychology
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Date of First Compliant Deposit:	5 September 2025
Last Modified:	05 Sep 2025 15:57
URI:	https://orca.cardiff.ac.uk/id/eprint/180926

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