Becoming and being mother to a boy with severe haemophilia.

Abstract

Haemophilia is a recessive genetic disorder which manifests symptoms in males but is carried by females. The disordered coagulation associated with severe haemophilia causes atraumatic joint and muscle bleeds and prolonged mucosal bleeding. These acute bleeding episodes frequently occur without any obvious injury and cause severe pain which is only relieved by administering intravenous treatment accompanied by rest, ice, compression and elevation. The management and treatment of haemophilia has evolved over the past fifty years from a dependence on lengthy hospital admissions to community based care with parents, usually mothers, administering bolus intravenous infusions to their boys at home. A review of the literature revealed that, despite being essential contributors to their sons’ care, there was a paucity of literature relating to mothers experiences of their sons disorder.
Research Aim
To gain a richer understanding of what it is to become and be mother to a boy with severe haemophilia.
Methodology and Methods
This qualitative study was informed by hermeneutic phenomenology. Data were collected from mothers of boys with severe haemophilia (n=5) using unstructured interviews. Data were interpreted and given meaning through immersion in the interview transcripts, coding and the development of themes.
Findings and Discussion
The mothers in this study discussed how, at times, they felt being responsible for giving their boys treatment burdensome and isolating, and that this was an immense added responsibility for them as mothers. This sense of burden, isolation and responsibility could be lessened by Haemophilia Teams addressing the difficulties of out of hours’ services; developing a mother to mother support network, and by an expectation that more than one family member should be able to administer treatment in the home. The mothers also talked of how their lives were in some ways enriched by their sons’ haemophilia as they accessed previously undiscovered strengths and skills and discovered a new sense of normal. All of the mothers had moved from a position of vulnerability to independence, although they still experienced ongoing concerns around what limitations to place on their sons’ activities, disclosure of the diagnosis to outsiders and imagining their boys’ futures. Core findings from this study resonate with those from other studies about mothers’ experiences.
Conclusion
In conclusion this study shows that mothers develop skills and knowledge that enable them to manage their boys’ haemophilia independently. Home based services are clearly beneficial in promoting and facilitating independence but Haemophilia Teams need to address the perceived negative aspects of haemophilia care and support mothers as their reality changes to encompass that of becoming and being mother to a boy with severe haemophilia.