PARENTS caring for children with epidermolysis bullosa (EB) experience complex emotional and psychological challenges, highlighting the need for tailored support that considers the impact of the condition on the whole family. A qualitative study explored parental experiences and identified key considerations for developing a psychosocial self-help toolkit.
What Challenges Do Parents of Children with EB Experience?
EB is a rare genetic condition characterised by skin fragility and blistering. Management involves ongoing wound care, dressing changes and medication to address pain and chronic itch. These responsibilities place additional demands on parents, who often provide substantial day-to-day physical care.
The study aimed to understand the support needs of parents caring for children with EB and explore how these needs could inform the development of a self-help intervention.
Interviews revealed a range of emotional experiences among parents, including sadness, worry, uncertainty about the future and feelings of guilt. The findings highlighted the psychological demands associated with providing continuous care alongside the wider challenges of managing a child’s condition.
Why Is Family-Centred Support Important?
Semi-structured interviews were conducted with parents of children with EB and healthcare professionals (HCPs). Researchers used thematic analysis to identify common experiences and support requirements.
Healthcare professionals’ accounts supported the experiences described by parents and reinforced the need for a tailored psychosocial intervention. The findings also indicated that support should extend beyond individual parents to recognise the wider impact of EB on family life.
In particular, the researchers highlighted the importance of acknowledging siblings and other family members who may also be affected by the practical and emotional demands of caring for a child with EB.
How Could a Self-Help Toolkit Address These Needs?
The findings suggested that future interventions should adopt a systemic, family-centred approach rather than focusing exclusively on individual parental wellbeing.
Acceptance and commitment therapy (ACT) was identified as a potentially relevant approach, although the researchers emphasised that adaptation would be necessary to address the wider family context.
The study provides insights into the experiences and support requirements of parents caring for children with EB. These findings could inform the development of a self-help toolkit that acknowledges the ongoing responsibilities of caregiving and the emotional needs of the wider family. Further development of tailored psychosocial interventions may help address an important aspect of care beyond the physical management of EB.
Reference
Hughes O et al. Understanding the experiences and needs of parents with children with epidermolysis bullosa. a qualitative study to inform the development of a self-help toolkit. Br J Dermatol.2026;DOI:10.1093/bjd/ljag477.
