The impact on parents of having a child with haemophilia

Abstract

Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.

Guidelines on the use of prophylactic factor replacement for children and adults with Haemophilia A and B

“…46 Psychologists should support the families to address emotional and behavioural issues and anxieties, which might affect both delivery of prophylaxis and the family's quality of life. 47 Whether prophylaxis is administered through peripheral or central veins is dependent on the ease of venous access, the child and family. However, before inserting a CVAD, the risk of infection and thrombosis should be weighed against the relative ease of venous access.…”

“…Play therapy can be used to prepare, teach and distract the child, reducing difficulties around venous access 46 . Psychologists should support the families to address emotional and behavioural issues and anxieties, which might affect both delivery of prophylaxis and the family's quality of life 47 . Whether prophylaxis is administered through peripheral or central veins is dependent on the ease of venous access, the child and family.…”

The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies

“…The relationship between caregiver and the haemophilia centre plays an important role in their adjustment and improves their quality of life. 3 It was reported that haemophilia mothers' educational level was associated with general health and that parents' health was associated with coping strategies.…”

“…Parents of children with coagulation factor deficiencies also experienced worries and stress as a result of these challenges 3 . Emotional and psychological effects of having a child with coagulation factor deficiencies are an important burden for parents/caregivers 4,5 .…”

Menilai Kualitas Hidup Anak Penyandang Hemofilia

“…28 Faktor emosi tidak hanya dirasakan oleh penyandang hemofilia namun juga orangtua. 29 Rasa bersalah yang dirasakan oleh ibu menjadi pembawa genetik bermanifestasi sebagai perlindungan berlebihan ibu terhadap anak hemofilia. Ketegangan emosi orangtua anak hemofilia lebih rendah dibandingkan orangtua anak penyakit kronik lain yang kurang bisa diobati.…”