Psychological support for parents of children with epidermolysis bullosa must address guilt, emotional exhaustion, and the wider impact on family relationships, say researchers.
Parents caring for children with epidermolysis bullosa face profound psychological pressures that extend well beyond the demands of managing the rare skin condition, new research has found.
A qualitative study published in the British Journal of Dermatology has highlighted the emotional toll of caring for children with epidermolysis bullosa (EB), including anxiety, guilt, social isolation, and strained family relationships.
The researchers said existing psychological support failed to adequately address the complex challenges facing families and have called for tailored, accessible interventions that include parents, siblings, and the wider family unit.
“The demands of caring for a child with EB can be significant, and depending on the subtype of EB, there can be lengthy wound care routines, resulting in some parents feeling exhausted and like they are never ‘off-duty’,” the researchers wrote.
“Wound care can be distressing, and although it is painful for children, parents can struggle with managing feelings of powerlessness and sadness.
“As a result, parents of children with EB may experience social isolation or loneliness, or a lack of energy to engage in leisure activities.”
The study, led by researchers at Cardiff University and the University of Bath, involved 21 semi-structured interviews conducted between July 2024 and March 2025.
Participants included 14 parents of children with EB from the UK, Portugal, and Romania, alongside seven healthcare professionals from the UK, US, Germany, and Singapore.
The children were aged four to 17 years and had either EB simplex or dystrophic EB.
Researchers identified four overarching themes relating to the emotional and practical burden of caregiving, the impact on family relationships, parents’ preferences for psychological support, and the potential role of self-help interventions.
Parents described persistent worry about their children’s health and future, alongside feelings of sadness, helplessness, and guilt associated with the hereditary nature of EB. That emotional burden was compounded by the need to perform painful but essential wound care. The researchers included comments from parents taken from the interviews.
“It’s stressful because you’re putting your child through pain, which is not what any parent wants to do, but you don’t have a choice,” one mother said.
“I do feel guilty because I know it’s from my side…deep inside, I do feel that it’s my fault,” another parent said.
The researchers found that psychological distress was closely linked to the responsibilities of caregiving rather than simply the severity or prognosis of the child’s disease.
Daily management of EB, including dressing changes, blister care, and medical appointments, frequently dominated family routines, and limited opportunities for employment, social activities, and respite.
Some parents reported clinical levels of anxiety and depression, while others described loneliness and exhaustion.
“The main one is like loneliness. I’m always in this house on my own…I had to give up work when I had my son,” one mother said.
The impact also extended to relationships between parents, siblings, and children.
“I have severe anxiety disorder, which I am medicated for…and it is anxiety from having the children and everything I have to do,” said one mother.
“When you’re depressed, you can’t really take care of your child, because you can’t take care of yourself,” said another.
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Parents described difficulties dividing their attention between children, with unaffected siblings sometimes feeling overlooked or taking on additional responsibilities to ease the family’s burden.
A clinical psychologist interviewed for the study said siblings could experience resentment, while a paediatrician reported that some children felt obliged to help reduce their parents’ stress.
The researchers also identified challenges in maintaining emotional and physical closeness between parents and children.
One clinical psychologist explained that fear of damaging fragile skin could make parents reluctant to touch or hug their child, potentially affecting bonding and communication.
“You teach a child, as a parent, that physical touch is nice…hugs are nice…and often parents can feel really frightened of touching their child,” the psychologist said.
The researchers said their findings suggested that psychological interventions focused solely on individual parental stress may overlook important aspects of family wellbeing.
Instead, they advocated a family-centred approach that recognised the interconnected experiences of parents, children and siblings.
They also found considerable interest in a tailored self-help toolkit, provided it was practical, accessible and sensitive to the realities of living with EB.
Parents favoured short, interactive exercises, videos and audio resources that could be accessed on demand, rather than lengthy written materials or worksheets requiring substantial time and concentration.
One mother welcomed a two-minute psychological exercise because it was easy to incorporate into everyday life.
“I liked that, because it’s two minutes, it’s easy to do. You could do it anywhere,” she said.
Participants also wanted resources to reflect the experiences of families affected by different EB subtypes, include fathers as well as mothers, and feature testimonials from other parents.
The researchers suggested that acceptance and commitment therapy, mindfulness and self-compassion techniques could provide useful foundations for future interventions.
However, they stressed that such approaches would need to be adapted to address family dynamics and avoid reinforcing feelings of guilt or self-blame.
The researchers also cautioned that standardised quality-of-life measures might not fully capture the broader impact of EB on families.
The study had several limitations, including its small, predominantly female parent sample and the self-selection of participants who may have been more willing to discuss psychological difficulties.
It was also unable to determine whether support needs differed according to EB subtype, disease severity or the child’s age.
The study explored preferences for psychological support but did not test the effectiveness of an intervention.
Despite this, the researchers said the findings would inform the development of a self-help toolkit incorporating short exercises, video and audio content, and lived-experience testimonials.
They concluded that future psychological interventions should recognise the considerable emotional demands of ongoing caregiving and address the needs of the entire family.
“The findings of this study will inform the design of a self-help toolkit, and suggest that any content should include short interactive exercises that can fit with busy parent schedules, and include a mixture of video and audio recordings,” the researchers concluded.
“Additionally, there was emphasis placed on interventions for EB having a systemic focus and including the wider family unit.
“The toolkit will also include lived experience testimonials of parents caring for a child with EB, based on findings surrounding loneliness and isolation, to validate concerns and increase connectedness.
“The discussions with parents and HCPs suggest that acceptance and commitment therapy, mindfulness, and self-compassion-based techniques may be appropriate to increase acceptance and promote coping.
“Most importantly, this study has illustrated there is a need to positively-frame future support resources, to avoid triggering shame or feelings of self-blame within parents.
“Herein, future research should focus on developing tailored self-help support resources for families affected by EB.”
