The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania

Manase Kilonzi, Dorkasi L. Mwakawanga, Fatuma Felix Felician, Hamu J. Mlyuka, Lulu Chirande, David T. Myemba, Godfrey Sambayi, Ritah F. Mutagonda, Wigilya P. Mikomangwa, Joyce Ndunguru, Agnes Jonathan, Paschal Ruggajo, Irene Kida Minja, Emmanuel Balandya, Julie Makani and Nathanael Sirili
Additional contact information
Manase Kilonzi: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Dorkasi L. Mwakawanga: School of Nursing, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Fatuma Felix Felician: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Hamu J. Mlyuka: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Lulu Chirande: School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania
David T. Myemba: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Godfrey Sambayi: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Ritah F. Mutagonda: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Wigilya P. Mikomangwa: School of Pharmacy, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Joyce Ndunguru: School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania
Agnes Jonathan: School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania
Paschal Ruggajo: School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania
Irene Kida Minja: School of Dentistry, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania
Emmanuel Balandya: School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania
Julie Makani: School of Medicine, The Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65001, Tanzania
Nathanael Sirili: Department of Development Studies, School of Public Health and Social Sciences, Muhimbili University of Health and Allied Sciences, Dar es Salaam P.O. Box 65013, Tanzania

IJERPH, 2022, vol. 19, issue 11, 1-9

Abstract: Tanzania is among the top five countries with a high burden of sickle cell disease (SCD) in the world. Even though the effects of SCD on quality of life have been documented in other countries including Nigeria and the United States of America, few are known from Tanzania. Therefore, this study focused on evaluating the effects of SCD on the quality of life among children living with SCD and their parents. The study employed a qualitative approach to interview purposively selected parents of children who have lived with SCD and have used hydroxyurea (HU) for more than 3 years. The in-depth interviews were conducted with 11 parents of children with SCD at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar-es-salaam, Tanzania. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed, and thematically analyzed. Three themes were generated including psycho-social effects: family conflicts and divorce, limited access to education, stress and fear; financial effects: Employment limitation, reduced efficiency and productivity, loss of job and lack of self-keeping expenses; and physical effects: physical disability and dependence, and burden of the frequent crisis. Children living with SCD and their parents suffer psycho-social, financial, and physical impacts of the disease. Appropriate interventions should be introduced to minimize the observed effects as ways of improving the quality of life of the individuals living with SCD and their caregivers.

Keywords: SCD; children; parents; impact; quality of life; Tanzania (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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