Childhood disability in rural Zambia : a qualitative study on the use of health care services

There are approximately 650 million people living with disabilities worldwide, an estimated 200 million of this number are children. A majority of disabled children live in poverty and lack access to basic health services and rehabilitation opportunities from being excluded from the allocation of resources. As such, they are highly susceptible to the risk of missing out on essential developmental opportunities. In Zambia, poverty levels are high and a national policy about disability is yet to be implemented, thus the care for disabled children falls on the families alone. This study explores how the health needs of disabled children are understood and managed through explanatory models within a framework of structural violence. In this qualitative study, observations and interviews with 16 parents of disabled children and 13 health workers in the Kazungula District, Zambia were carried out. Facilitating factors and barriers to health care were explored, formal and informal health services identified and reasons for the choice of services examined. Systematic Text Condensation was used to analyze the material. The primary caregivers of disabled children use the rural health centers, but rarely for an assessment of their disability. Family members attend rural health centers without bringing the disabled child, thus further management of the child is based solely on information from the relatives. The main barriers to health care are long distances, lack of available transport and shortage of staff, equipment and skills at the rural health centers to manage childhood disability. Referral to higher-level health facilities is done extensively, but is difficult for families to make use of. Parents become tiered of trying to respond to episodes of illness and they consequently give up. Primary health care in Zambia is not able to provide adequate care for disabled children, and their health needs are therefore assessed and managed within a family unit strongly influenced by poverty. Throughout this study, it will be argued that a combination of individual health beliefs and social and structural factors influence health behavior and must all be taken into consideration