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Caregiver suffering of the families of the patients with Sickle cell: a qualitative study

Shayesteh Haghighi, Shahnaz Rostami, Simin Jahani


Introduction: Caring for patients with sickle cell is a challenging experience for their caregivers and family members. Objective: This study was aimed at describing the caregiving suffering of the families of the patients with sickle cell anemia. Materials and Methods: In this qualitative content analysis study, 22 home caregivers and patients with sickle cell anemia (SCA) were selected through purposive sampling method. Data was collected using semi-structured interviews and managed in MAXQDA software. The steps proposed by Graneheim and Lundman (2004) were used for data analysis. Results: Four classes - 1) costly treatment, 2) overwhelming care, 3) stresses faced by the family, and 4) stigma - were obtained as a result of data analysis, which were placed in “family suffering” theme. Conclusion: The results showed that the care suffering of the families with sickle cell patients exists in all aspects of life and the families of these patients need specific and organized attention and support to reduce caregiving suffering and enhance family functioning‎.

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