Assessing family involvement in chronically ill children health care at Queen Elizabeth Central Hospital, Malawi
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Date
2018-01-01
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Abstract
Family involvement has been recognized as the standard of care in caring for children with chronic illnesses. Studies have suggested that family involvement in child’s care increases family understanding of the child’s illness, management and sharing in decision-making between the family and the health care providers. In Malawi, though family members stay with their hospitalized children, they only played a role of providing food and supportive care due to cultural expectations and due to lack of available nursing care. Studies had revealed family members' desires to be involved in both the physical care of their children and in decisions regarding their care. However, there was no information regarding the perception of health providers on family involvement.
The aim of this study was to assess the perception of healthcare providers on the practice of family involvement in chronically ill children’s health care at Queen Elizabeth Central Hospital. A descriptive qualitative study was done using semi structured interview guide to collect data from 16 health care providers working with children with cancer conditions. Thematic analysis was done guided by Collaizi’s framework. Five main themes identified from the data were: perception of health care providers on family involvement in the care of children, health care providers’ practice of family involvement in children’s care, inadequate involvement of other family members, lack of care giving role negotiation, factors that facilitate involvement of caregivers in children’s health care and challenges encountered by health care providers to involve families in children’s health care. From the study findings, it was found that there was a discrepancy between the health providers’ perception and practice in regards to most of the areas of family involvement in child’s care. For the few areas that the caregivers were involved, the health care providers only interacted with the caregiver who was available in the hospital with the child, the other family members were not involved. Furthermore, results have shown that health care providers were not aware of their role of negotiating the caregiver role in caring for their children. Health care providers need to have the appropriate theoretical knowledge and practical skills to negotiate roles with the families.