An investigation into the understanding of basic genetic inheritance amongst amaXhosa caregivers of patients with Haemophilia

Master Thesis


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University of Cape Town

This study sought to explore the level of understanding of basic genetic inheritance among isiXhosa-speaking caregivers of patients with the genetic bleeding disorder haemophilia. Haemophilia A and B are X-linked recessive inherited, lifelong bleeding disorders that are caused by deficiencies in blood clotting factors. The condition predominantly affects males, while females are carriers and usually unaffected. These bleeding disorders have a profound impact on the daily life of the affected individual, on carrier mothers and close family. Education is vital to enable women to appreciate the implications of being a carrier and to fully inform them and their partners of the implications for a prospective child. Socio-economic and language issues in South Africa are a major barrier to communication and an obstacle to good medical care for first-language Xhosa speakers. In order to provide culturally-sensitive, effective genetic counselling and to improve communication between health care service providers and first-language Xhosa speakers, it is important to explore the intrinsic knowledge and basic understanding of this cultural group. The study used an exploratory qualitative research design. Ten participants were recruited amongst first-language Xhosa speaking mothers or caregivers of patients with haemophilia residing in townships near Cape Town. Qualitative data were generated from transcribed and translated audiorecords of ten semi-structured interviews, conducted in Xhosa by an interpreter as well as from participant observation notes by the investigator. Results suggest that the participants had a very limited understanding of the clinical management and cause of haemophilia. Information given by health care providers did not appear to be assimilated and participants remained unsure as to the implications of haemophilia. In spite of frequent visits to clinics there appeared to be limited understanding of the medical treatment and genetic consequences of haemophilia, which suggests that communication between health care providers and participants was inadequate. While treatment and care by health care service providers was fully accepted, several participants believe that traditional practices would provide more satisfactory explanations regarding the cause of the condition. Awareness by all role players of v different cultural beliefs and of how illness is interpreted by first-language Xhosa speakers might improve communication between health care service providers and isiXhosa speakers.