Certain Coping Strategies May Help Boost Life Quality for Young Patients, Parents

Children with epidermolysis bullosa (EB) who accept their condition and emotionally detach themselves from it tend to have a better quality of life than children who are very emotional and use other strategies to cope with their disease, a Dutch study has found.

Likewise, when the parents of these children use avoidance strategies, they seem to fare better than those who tended to react emotionally.

The study, “The relationship between quality of life and coping strategies of children with EB and their parents,” was published in the Orphanet Journal of Rare Diseases.

EB comprises a group of rare genetic disorders that cause the skin to blister and tear easily, leading to the formation of chronic painful wounds and scarring.

The condition is known to exert a negative impact on the physical, psychological, and social well-being of young patients. Previous studies have found the disease not only causes physical impairments, such as pain and skin itching, but also affects the children’s ability to socialize and interact with their peers.

EB can also have a negative impact on family members, especially parents, due to the high physical and emotional demands it poses.

“However, despite the findings of previous studies that parents and children influence each other’s behavior and well-being,” the scientists wrote, “few studies have investigated the relationships between the coping strategies of children and parents and their own as well as each other’s quality of life.”

To tackle this gap in knowledge, researchers at the University of Groningen, in the Netherlands, conducted a study to examine if and how the adoption of coping strategies could affect the quality of life of children with EB and that of their parents.

In the study, 55 children (28 boys and 27 girls) with all types of EB and 48 parents — nine men and 39 women — were asked to complete online questionnaires to assess their quality of life and coping strategies. All parents and children, 8 and older, completed both questionnaires by themselves. Parents of younger children (ages 2–8) were asked to complete their child’s quality of life questionnaire, but not the one assessing coping strategies.

Quality of life for those ages 2 to 25 was assessed by the Pediatric Quality of Life Inventory, and the TNO-AZL Questionnaire for Adult’s Health-related Quality of Life was used for the parents. Slightly different versions of the Coping with a Disease Questionnaire were used to evaluate coping strategies in children and their parents.

Results showed that, in general, the overall quality of life of children with EB and their parents was slightly lower than that of healthy children and adults. In the case of children with EB, their overall quality of life seemed to be similar to that reported in other studies of pediatric patients with chronic illnesses.

Wishful thinking and acceptance were the coping strategies used more frequently by children and their parents. Cognitive-palliative strategies and those involving emotional reactions were the least used in both groups. Notably, examples of cognitive-palliative strategies included thoughts like “I tell myself that even famous people have illnesses” and “I learn as much as possible about my child’s illness.”

Subsequent analyses found that children who used cognitive-palliative strategies and showed emotional reactions more often to cope with their condition tended to have a worse quality of life, especially in their emotional and social functioning, compared with children who were able to accept and emotionally distance themselves from EB.

Likewise, parents who resorted to emotional reactions more often tended to have lower levels of social functioning and were more likely to feel depressed and angry. In contrast, those who used avoidance strategies and kept their emotions in check tended to experience more positive feelings.

Additional analyses also showed that better emotional and social functioning in children was associated with a reduction of depressive feelings in their parents.

In addition, parents’ use of acceptance strategies was linked to higher physical functioning in children, while children’s use of avoidance strategies was associated with a lower level of anger in their parents.

“Children who are able to accept the disease or distance themselves from it appear to be better off in contrast to those who tend to engage in the cognitive-palliative strategies and expressing emotional reactions,” the researchers concluded.

In a similar way, parents who use avoidance strategies seem to fare better than those who resorted to emotional reactions.

However, the researchers added that “further research is needed to investigate the causal relationships between the quality of life and coping strategies of children with EB and their parents.”