Study uncovers ways to ease parental guilt in hemophilia
Education and community can turn self-blame into empowered care
- Parents of children with hemophilia often feel deep guilt due to the disease's genetic nature and diagnostic uncertainty.
- Lack of clear information and delayed diagnosis intensify parental guilt and stress.
- Supportive healthcare, clear information, and shared experiences help parents adapt and reduce guilt.
A new study highlights a hidden emotional burden for families living with hemophilia: the deep sense of guilt felt by parents, particularly mothers, who pass the condition on to their children. However, researchers found that this weight can be significantly lifted through better access to medical information, professional counseling, and the power of shared experiences within the patient community.
Published in the Journal of Pediatric Nursing, the qualitative study explored the complex emotions of parents navigating a hemophilia diagnosis. The researchers discovered that while guilt is often an immediate and overwhelming reaction to the disease’s hereditary nature, it is not permanent. With the right psychosocial support, families can move from a place of self-blame to one of empowered caregiving.
“The findings indicate that parents’ feelings of guilt are closely related to uncertainty during the diagnostic process, perceptions of genetic responsibility, changes in family relationships, and coping mechanisms,” researchers wrote in “Guilt in parents of children diagnosed with hemophilia: A qualitative study.”
The emotional impact of a genetic diagnosis
Hemophilia is a genetic disease in which the blood cannot clot properly, resulting in unusually heavy and prolonged bleeding. In most cases, it is inherited. Many parents, especially mothers, often face strong emotional challenges, including deep guilt about passing hemophilia on to their children.
“The genetic nature of the disease often leads to guilt and responsibility, negatively affecting family dynamics, coping, and well-being. Understanding these experiences is essential for improving psychosocial support and healthcare services,” the researchers wrote.
In this study, they explored how 12 mothers and one father, ages 30 to 51, experienced guilt while caring for a child with hemophilia. Data were collected through face-to-face interviews based on a semi-structured guide of five questions. Each interview took place in a quiet, private setting and lasted less than 30 minutes.
Four themes were identified that revealed how parents experienced, expressed, and coped with feelings of guilt. Guilt did not appear alone but was mixed with fear, stress, and changes in daily life and family dynamics. According to the team, understanding these feelings is crucial for providing better emotional and social support to families.
The first theme was the emotional and psychological reactions to the diagnosis. Before diagnosis, many parents described feeling confused and unprepared. They often lacked clear information or were misguided, which led to delays in the diagnostic process. “It was a really troubling process,” one mother said.
When the diagnosis was finally made, “shock and fear” were common reactions. Some parents initially denied the diagnosis or felt panic. Learning that hemophilia has a genetic cause intensified guilt, especially for mothers who were told they were carriers. In some families, this led to tension or silent blame between partners.
After the diagnosis, parents began to adapt. Many searched for information and connected with other families. “There are people who have hemophilia and open accounts abroad on social media,” another mother said. Learning about treatment helped parents feel more in control of their child’s care. However, some became overprotective, limiting their child’s activities to prevent bleeding.
Another theme was guilt and perception of responsibility. Many parents blamed themselves for their child’s diagnosis. Some regretted not knowing their family’s genetic history earlier. “When we learned that it was a genetically inherited disease from the mother, I was even more upset,” one mother said.
At the same time, parents blamed the healthcare system. Many doctors missed the early symptoms of hemophilia, delaying the diagnosis. “Misdirection by healthcare professionals has resulted in delays to diagnosis,” the researchers wrote.
Parents also noticed low public awareness, which led to stigma and difficulties in schools and social settings.
Building resilience through community and support
Over time, guilt became less intense for many parents. As they learned more about hemophilia, feelings of self-blame gradually decreased. “Now I am more conscious, more understanding,” one mother said. Supportive communication with doctors helped parents feel reassured and emotionally stronger.
Hemophilia also brought changes in daily life and family dynamics. Stress and worry sometimes caused conflict between spouses. In other cases, working together to care for the child strengthened their bond. To protect their child, parents limited sports and outdoor activities. “No matter how much we try to raise him socially, at some points there are things we cannot allow,” one mother said.
To cope, parents developed personal strategies. They adjusted routines, learned how to control bleeding episodes, and tried to balance safety with normal childhood experiences. Talking with other families, joining support groups, and receiving psychological care helped parents feel less alone.
“I believe that everyone should definitely get professional support if they have the opportunity or the power to talk,” one mother said. While guilt did not disappear completely, information, shared experiences, and healthcare support “contributed to making this emotion more functional by reducing its destructive effects,” the researchers wrote.
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