The experiences of caregivers caring for patients with haemophilia in rural areas

Abstract

Some patients with haemophilia from rural areas miss most of their clinic appointments and visit a clinic only when the complications of haemophilia have already set in. The observations from the daily practice motivated the researcher to investigate the experiences of caregivers caring for patients with haemophilia in rural areas with the aim of making recommendations that will promote a service that is responsive to these caregivers’ actual needs. A theoretical framework was obtained by doing a literature study on haemophilia as a condition. An empirical study was also conducted on an availability sample of ten caregivers who were at the Haemophilia Clinic at the Pretoria Academic Hospital. The sample was selected from a population of caregivers who brought patients to the Haemophilia Clinic. A qualitative approach was used; in-depth interviews were conducted and recorded on an audiotape. Interviews were later transcribed for analysis and interpretation. The researcher used Creswell’s model to analyse the data. The findings of the study include internal and external experiences of the caregivers. Internal experiences relate to issues around an emotional dimension, a spiritual dimension, cultural beliefs and future considerations. External experiences relate to negative and positive experiences encountered by caregivers in dealing with different systems, namely the health system, the education system, the transport system, a religious system, a cultural system, the social welfare system, the socio-economic system and the family system. The research focused only on a small sample of caregivers who brought the patients to the clinic at the Pretoria Academic Hospital. Therefore, future research could be conducted to include more caregivers from different areas. The study concludes that caregivers caring for patients with haemophilia in rural areas face unique challenges because of the rarity of the disorder and the scarcity of resources. Most people in rural areas lack insight on bleeding disorders because of their cultural beliefs; as a result, they fail to be supportive of the patients and their caregivers. However, there are a few people who do understand the nature of haemophilia as a disorder when it is explained to them and therefore give the necessary support to caregivers and the patients. Haemophilia as a disorder is associated with an array of psychosocial challenges. It is concluded that social work intervention in haemophilia care can ensure that the psychosocial problems of caregivers caring for patients with haemophilia in rural areas are properly addressed. Copyright