Unfolding the Realities of Family Care: The Experience of family members caring for a child with disability

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Addis Ababa University


Disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. The challenge of facing disability is not only the problem of children with disability rather it becomes a problem of primary care givers because they are in one way or another becomes a part and parcel of the caring process. By using qualitative research design with the method of case study, the study explored and described the experiences of mothers who are responsible for caring of children with multiple disabilities generally and exploring and describing the feeling of mothers, the challenges they faced and how to take care their responsibility specifically. Five mothers (clients of BGW), two FGDs and two key informants were interviewed and tape recorded. 9 themes and 34 sub themes were identified and based on these themes, the research identified that mothers as a primary care giver involved in every activity to take care of their children so their ample time was taken by their children due to the demanding nature of caring. Social isolation, high level of stress, burden, occurrence of health problems, not able to engage in income generating activity simply, abandon their marital life and are always very much worried about the future fate of their children when they may face sickness, problem or death . Mothers also experience wrong societal belief and have negative impact on care giving beliefs like: disability is occurred as a result problem in kinship, curse and sin, children with disability are useless and they should be raised in human service organization. Regarding coping mechanism, strength of mothers, high level of attachment to their religion, strong level of support from BGW and not listening negative sayings forwarded from their surrounding environment were identified. Involvement of all stakeholders and integrated interventions at all level from policy, social work education and research is important in order to alleviate the challenges faced by children with multiple disabilities and their family care givers. Key words: multiple disabilities, children, mothers, experience, policy, societal beliefs



Multiple Disabilities; Children; Mothers; Experience; Policy; Societal Beliefs