The experience of being a female carrier of haemophilia and the mother of a haemophilic child

Abstract

Limited research has been conducted on how the female carrier experiences her life with a haemophilic child, and earlier studies are mostly questionnaire-based. No previous qualitative study on the female carrier's situation has been conducted in Sweden. The aim of the study was to describe the lived experience of being a carrier of severe or moderate haemophilia and of being the mother of a haemophilic child. The study was conducted via qualitative interviews and analysed by means of a phenomenological hermeneutic method; a total of 13 haemophilia carriers were interviewed in 2010. Being a carrier of haemophilia and having a haemophilic child was life changing. The women moved from a state of sad, guilty chaos to reconciling themselves with the new situation. Our analysis revealed three acts in which phenomena appeared: the time after diagnosis, the turning point and reconciliation with a changing life. Emerging as crucial to the process of reconciliation with a changing life was a sense of being fully informed and supported. The Haemophilia Treatment Centre (HTC) should create an environment that encourages learning, and the team should invite and encourage the woman's partner to be actively involved in the child's care. Moreover, the results indicate that it would be beneficial to invite female carriers to receive patient education at the HTC before they plan to start a family. During this visit, the woman may gain a greater understanding of her carriership to prepare her for future decisions concerning prenatal diagnosis, for example.

A tortuous route to a capable fatherhood: the experience of being a father to a child with severe haemophilia

“…The fathers described that the child's mother took most responsibility for their son's daily treatment and care and expressed guilt about having abandoned their partners during the first years. This emphasize that HTC should encourage the fathers to be more actively involved in the daily care of the child's disease . Our results strengthen an earlier assumption that support from the HTC in the learning process is essential for the parent of a child with severe haemophilia.…”

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

“…Previous research has consistently shown that being able to manage the child's treatment at home is essential to reduce the impact of the illness for both the child and the parent (Baker, Riske, Voutsis, Cutter, & Presley, ; Myrin Westesson et al, ; Myrin Westesson et al, ; Myrin Westesson et al, ; Stoffman et al, ; von der Lippe et al, ). Somewhat surprisingly, the findings revealed that when a family member administered the clotting factor to the child, the parental perceived burden was higher when compared to if a HCP administered the clotting factor.…”

“…Haemophilia might have likewise psychosocial effects on the parents (von der Lippe, Frich, Harris, & Nyheim Solbraekke, 2017; Saxena, 2013;Schwartz et al, 2018). Previous qualitative studies on parents of children with haemophilia revealed that parents experience feelings of guilt, anxiety, despair, vulnerability and powerlessness (Furmedge, Lima, Monagle, Barnes, & Newall, 2013;Myrin Westesson, Baghaei, & Friberg, 2013;Myrin Westesson, Sparud-Lundin, Wallengren, & Baghaei, 2015;Myrin Westesson et al, 2018).…”

The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study)

“…Caring for a child with haemophilia can cause caregiver burden through personal sacrifice, financial impacts, emotional stress and impaired health status of the caregiver . The caregiver may have to give up work to care for their child, at least during the years following diagnosis . They may also need to attend regular hospital appointments, which can be time‐consuming and financially burdensome.…”