The presence of inhibitors and excessive body weight increase the sense of disease burden felt by parents of children with moderate to severe hemophilia, a study reports.
The study “Burden on parents of children with hemophilia: the impact of socio- demographic and child’s medical condition” was published in the Journal of Clinical Nursing.
Caring for a child with hemophilia is challenging for adults, not only in terms of daily activities (time dedicated to the child, hospital visits, reduced work and leisure time), but also financially and psychologically. Feelings of guilt, depression, anxiety, and a sense of failure can trouble or burden parents.
“To be able to care for children with hemophilia and support affected families, there is a need for increasing knowledge and understanding of the parent’s life situation,” the researchers wrote.
A team led by researchers in Sweden investigated this burden, including its sociodemographic and clinical aspects, using the HEMOphilia associated CAregiver Burden scale (HEMOCAB) questionnaire, which includes 54 questions. Burden is scored from zero to 100 on a five-point scale; the higher the score, the greater is the perceived burden.
The study enrolled Swedish children and adolescents (up to the age 17) with moderate or severe hemophilia. Among the 128 families eligible to participate, 102 parents completed the questionnaire. The majority (91.2%) of the responders were mothers, with a mean age of 40.6, and 91.2% were working either part- or full-time.
In total, the analysis included 121 children. In 18 cases, parents were caring for more than one child with hemophilia. (In these cases, researchers collected data on the youngest children.)
About 89.1% of the children (mean age, 10.7) were given treatment at home, and a majority (87.8%) had severe disease. Parents gave the treatment to children with a mean age of 8.1, while older children (mean age, 14.9) self-infused. Parents often relied on health professionals to treat the youngest, those with a mean age of 6.8. But children in this last group generally had moderate disease, with treatment given on an on-demand basis, the study said.
Higher scores – meaning greater burden – were more prevalent among parents of children that developed inhibitors, an immune reaction to clotting factor concentrates.
Parents who had administered a clotting factor at home in last 12 months also reported higher burden compared to those whose children were treated by healthcare professionals. The sense of burden declined as the child aged.
Parents of overweight or obese children reported a significantly higher burden compared to those with normal body weight, even though the proportion of overweight children here was similar to that of the general population for their age group, the researchers said. They speculated this greater burden might be due to obese children with hemophilia being at an elevated risk of joint damage and mobility problems.
“Parental perceived burden can be negatively affected by the child’s medical condition,” the researchers wrote.
These results “underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors or has overweight/obesity,” their study concluded.