Children with EB describe physical, social challenges in daily life
Interviews highlight wound-care burden, emotional strain, and family support
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An interview study found that epidermolysis bullosa (EB) can affect nearly every part of children’s daily lives. The children described constant pain and wound care, fear of new wounds, emotional strain, social isolation, and difficulty taking part in normal childhood activities.
“Pediatric nurses should provide holistic and child-centered care addressing psychosocial well-being in addition to wound management,” the scientists wrote. “Interventions supporting emotional coping, school adaptation, family support, and social participation may improve the quality of life of children with EB.”
The findings were reported in “Living on fragile skin: the lived experiences of children with epidermolysis bullosa,” published in the Journal of Pediatric Nursing.
EB causes fragile skin and painful blistering
EB is a group of rare disorders in which the skin is extremely fragile and can break or blister from minor pressure, friction, or trauma.
Symptoms often appear at birth or in early childhood, and EB is a lifelong condition. Blisters most commonly form on the palms, soles of the feet, and legs, and can also affect the lining of the mouth and esophagus, the tube that carries food from the throat to the stomach. Current treatment focuses on managing symptoms, promoting wound healing, and preventing complications.
Skin fragility and related complications can make physical and social activities difficult for children with EB and may lead them to withdraw from those activities.
The researchers therefore explored how children with EB in Turkey experienced the disease and its treatment.
“A thorough examination of the experiences of children with EB is crucial to guide healthcare professionals and develop care approaches that improve quality of life,” the team wrote.
They conducted at-home interviews with seven girls and three boys, ages 6-16, all of whom had been diagnosed with EB. Five (50%) had a sibling with EB, and 60% had parents who were first cousins.
In all cases, signs of EB were present at birth, including blisters or peeling skin, usually on the feet and other areas prone to friction. One child said, “The skin on my feet was completely peeled off the moment I was born.”
Most of the children were admitted to neonatal intensive care units (NICUs) after birth. Uncertainty during the diagnostic process increased feelings of helplessness among family members. “They took him to the NICU right after he was born. He stayed there for months, and they never gave us a clear diagnosis.”
Pain and wounds can limit movement and eating
Difficulty walking was among the most frequently reported limitations, largely because of blisters and sores on the soles of the feet. Some children used wheelchairs or strollers when they went outside. Sores in the mouth and esophagus also led some children to choose soft or liquid foods.
Nearly all of the children described difficulties with the constant need for wound dressing and care. One child said, “We have dressing changes that take hours every day, and this process is both very painful and psychologically exhausting for me.”
Some children reported fusion affecting their hands and feet, including fused fingers that made tasks such as writing and holding objects difficult. Two children also described health problems such as infections and anemia — low levels of red blood cells or hemoglobin, the protein that carries oxygen — that left them feeling weaker and more tired than their peers.
All of the children reported constant pain throughout the day, with pain becoming especially intense during bathing and dressing changes. A large majority said they lived in fear of accidents that could cause new blisters or skin peeling, leading them to limit their movements and avoid their peers.
One child said, “My biggest fear is bumping into something because even the slightest bump causes my skin to break and new wounds to form.”
More than half of the children reported feeling ashamed of their appearance and excluded by others. One child said, “When people see my wounds, they look at me as if I were burned; those looks embarrass me a lot, and I don’t want to go outside.” Some children said they had accepted their illness, while two said they felt they needed to be psychologically strong and resilient.
Nearly all of the children reported isolating themselves socially, in part because of strangers’ stares and physical fatigue. A child said, “Most of the time, I prefer to stay home because I get tired outside and I’m bothered by people’s stares.”
EB can disrupt friendships and school life
Most of the children described difficulty forming friendships because they could not take part in play with their peers. Some said their friends were supportive and protective, while others had their schooling disrupted and had to continue their education at home.
Most of the children reported receiving support from their mothers, who helped with all aspects of their care. One child said, “My mom changes my bandages every day, helps me bathe, and takes constant care of me throughout this process.”
Eight children described their fathers as not actively participating in direct care tasks such as dressing changes or bathing, but said they provided emotional strength by supporting the family financially. One child who had a sibling with EB said that sibling provided the most support: “Since my sibling is going through the same illness, I think they’re the one who understands me best.”
Some children said their families faced financial and emotional strain from the demands of care, including the cost of dressing supplies. One said, “The care process is very challenging for my family, both financially and emotionally, but we still manage to get through it together.”
The researchers noted that the study included only 10 children from one healthcare center in Turkey, so the findings should not be generalized to all children with EB.
“This study shows that EB is best understood as a condition that affects the whole child — physically, emotionally, and socially — and the whole family, rather than a purely dermatological disease,” the researchers wrote. “Larger, multi-site studies that include parents’ and siblings’ perspectives are needed to build on these findings and inform more comprehensive models of care.”
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