Interviews highlight caregiver burden for hemophilia families
Lack of information, access to services among issues cited
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Caring for a child with hemophilia can bring emotional strain and disrupt family life even as advances in treatment make it easier to manage the disease, a study in the Netherlands found.
Caregivers interviewed for the study generally valued the care they received at specialized hemophilia centers, but identified important gaps outside those centers. These included limited knowledge of hemophilia among other healthcare professionals, difficulty finding reliable information, and a need for easier access to peer support and remote care.
Hemophilia affected caregivers emotionally, socially, and at work, although its impact varied among families. Bleeding frequency and injuries strongly shaped daily life, while having a family history of hemophilia could make a diagnosis easier to navigate. Caregivers also emphasized the freedom offered by preventive treatment and the ability to administer it themselves.
“To further enhance patient-centred care, caregivers expressed the need for a tailored and centrally available information resource, expansion of remote healthcare services and increased haemophilia knowledge,” the researchers wrote, adding that “healthcare providers should be more aware of the multifaceted impact of haemophilia on caregivers and the factors influencing haemophilia impact on daily life.”
The study, “The Haemophilia Health Journey: Experiences and Unmet Care Needs of Caregivers and Their Young Children,” was published in Haemophilia.
Family experiences
Hemophilia occurs when the blood does not clot properly because certain clotting factors are missing or present at very low levels. While hemophilia treatments to prevent bleeds have substantially improved disease management and quality of life, children may still experience bleeding, pain, psychological stress, and limitations in physical or social activities. Managing the condition can also affect caregivers and family life.
Researchers conducted 27 interviews between September and November 2022, with additional interviews conducted in November and December 2024. In all, they talked to 38 caregivers — 26 mothers and 12 fathers — and 15 children. The children, ages 1 to 10, had hemophilia A or B, ranging from mild to severe, and received care at one of two specialized treatment centers in the Netherlands.
Families with a history of the disorder generally felt better prepared and less overwhelmed by a hemophilia diagnosis, while those encountering hemophilia for the first time described needing more time to adjust. In some cases, limited hemophilia knowledge among healthcare professionals outside specialist centers led to delays in diagnosis and added to families’ distress.
Peer support was particularly valued early after diagnosis, giving caregivers a chance to exchange experiences, ask practical questions, and hear from families further along in the journey.
Finding reliable information was another challenge. Although caregivers trusted their hemophilia teams, they sometimes struggled to absorb everything they were told shortly after diagnosis. Information found elsewhere could be fragmented, outdated, or focused mainly on severe disease.
Treatment brought families greater control. For children with severe hemophilia, prophylaxis made bleeds more predictable, while being able to give treatment at home provided greater independence. Caregivers of children with mild hemophilia expressed interest in greater access to prophylaxis or home treatment to avoid burdensome trips to treatment centers after bleeds or injuries.
Caregivers were generally positive about their specialist teams, describing them as supportive and easy to reach. Travel distances nevertheless led families to call for expanded remote care options, including digital follow-up and treatment closer to home.
Bleeds and injuries brought another set of challenges. Caregivers were often unsure when to contact the treatment center, particularly shortly after diagnosis. In emergency departments and regional hospitals, limited hemophilia knowledge sometimes led to long waits and treatment delays, while poor communication and difficult needle sticks could leave children afraid of needles and make future home treatment harder.
The impact on daily life varied considerably and depended more on a child’s tendency to bleed and how often injuries and bleeds occurred than on whether hemophilia was classified as mild, moderate, or severe. Children with severe disease receiving prophylaxis, for example, could experience relatively little disruption.
Parents also struggled with knowing when to let go. They wanted their children to explore and become independent, but giving up control could be stressful. With experience, caregivers became more confident in recognizing bleeds and responding to emergency situations.
Children said the most burdensome part of hemophilia was missing fun activities due to bleeding. Caregivers also found it challenging to explain the disease to family, friends, schools, and daycare, where misunderstandings could lead others either to overprotect children or underestimate the risks.
Hemophilia also affected caregivers’ working lives. Some parents said they had to leave or stop work because of hospital visits and the need to remain available when their child was injured.
“Our qualitative interview study provided an in-depth understanding of the experiences and needs of young children with haemophilia and their caregivers, and identified several areas for improvement to further enhance patient-centred care,” the researchers wrote.
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