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

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 focu...

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Autores principales: Kilonzi, Manase, Mwakawanga, Dorkasi L., Felician, Fatuma Felix, Mlyuka, Hamu J., Chirande, Lulu, Myemba, David T., Sambayi, Godfrey, Mutagonda, Ritah F., Mikomangwa, Wigilya P., Ndunguru, Joyce, Jonathan, Agnes, Ruggajo, Paschal, Minja, Irene Kida, Balandya, Emmanuel, Makani, Julie, Sirili, Nathanael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9180017/
https://www.ncbi.nlm.nih.gov/pubmed/35682454
http://dx.doi.org/10.3390/ijerph19116871
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author Kilonzi, Manase
Mwakawanga, Dorkasi L.
Felician, Fatuma Felix
Mlyuka, Hamu J.
Chirande, Lulu
Myemba, David T.
Sambayi, Godfrey
Mutagonda, Ritah F.
Mikomangwa, Wigilya P.
Ndunguru, Joyce
Jonathan, Agnes
Ruggajo, Paschal
Minja, Irene Kida
Balandya, Emmanuel
Makani, Julie
Sirili, Nathanael
author_facet Kilonzi, Manase
Mwakawanga, Dorkasi L.
Felician, Fatuma Felix
Mlyuka, Hamu J.
Chirande, Lulu
Myemba, David T.
Sambayi, Godfrey
Mutagonda, Ritah F.
Mikomangwa, Wigilya P.
Ndunguru, Joyce
Jonathan, Agnes
Ruggajo, Paschal
Minja, Irene Kida
Balandya, Emmanuel
Makani, Julie
Sirili, Nathanael
author_sort Kilonzi, Manase
collection PubMed
description 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.
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spelling pubmed-91800172022-06-10 The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania Kilonzi, Manase Mwakawanga, Dorkasi L. Felician, Fatuma Felix Mlyuka, Hamu J. Chirande, Lulu Myemba, David T. Sambayi, Godfrey Mutagonda, Ritah F. Mikomangwa, Wigilya P. Ndunguru, Joyce Jonathan, Agnes Ruggajo, Paschal Minja, Irene Kida Balandya, Emmanuel Makani, Julie Sirili, Nathanael Int J Environ Res Public Health Article 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. MDPI 2022-06-04 /pmc/articles/PMC9180017/ /pubmed/35682454 http://dx.doi.org/10.3390/ijerph19116871 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Kilonzi, Manase
Mwakawanga, Dorkasi L.
Felician, Fatuma Felix
Mlyuka, Hamu J.
Chirande, Lulu
Myemba, David T.
Sambayi, Godfrey
Mutagonda, Ritah F.
Mikomangwa, Wigilya P.
Ndunguru, Joyce
Jonathan, Agnes
Ruggajo, Paschal
Minja, Irene Kida
Balandya, Emmanuel
Makani, Julie
Sirili, Nathanael
The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania
title The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania
title_full The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania
title_fullStr The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania
title_full_unstemmed The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania
title_short The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania
title_sort effects of sickle cell disease on the quality of life: a focus on the untold experiences of parents in tanzania
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9180017/
https://www.ncbi.nlm.nih.gov/pubmed/35682454
http://dx.doi.org/10.3390/ijerph19116871
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