Exploring the Struggles of Caregivers of Children With Acute Lymphoblastic Leukemia: Implications for Social Work Services in Malaysia
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Abstract
Childhood cancer can cause extreme discomfort and stress for the caregivers of affected children. These challenges affect caregivers and their children and need to be recognized and addressed. This study used individual, in-depth interviews to explore the challenges faced by caregivers of children with acute lymphoblastic leukemia (ALL) in Malaysia, to identify the social work services available to them, and to understand the support they need. The interviews with eight informants were transcribed, translated, and systematically analyzed using qualitative content analysis to identify emerging themes and patterns. The study highlights several issues and coping strategies: financial burdens from indirect treatment costs and job or income loss; medical caregiving responsibilities, including accompanying their child during admission, treatment, and prolonged hospital stay; difficulties in addressing and providing for their ill child’s emotional needs and those of their other children; social support received from close and extended family members, and friends. There are also coping strategies, such as comparing one’s child with other children in the ward who are in a more disadvantaged condition, talking to other caregivers, and sharing information and experiences. The study provides recommendations for oncology social work services in the country’s healthcare system.
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References
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