ArticleBMJ open2023
Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana.
Article in BMJ open, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed, 10 citations in OpenAlex.
- Newborn Screening for Hemoglobinopathies and Thalassemias: Brief History, Recent Activities, and Global Status-2026.International journal of neonatal screening · 2026Review
- Low depression rates among caregivers of young children with sickle cell disease: a rapid report.Journal of sickle cell disease · 2026Article
- Observational
- Sickle cell disease awareness and perception among Christian religious leaders in Accra Metropolis: a qualitative study.Journal of community genetics · 2024Article
- Financial strain and resilience: a qualitative exploration of parental perspectives on caring for children with sickle cell disease in Ghana.BMC health services research · 2024Article
- Current Methods of Newborn Screening Follow-Up for Sickle Cell Disease Are Highly Variable and without Quality Assurance: Results from the ENHANCE Study.International journal of neonatal screening · 2024Article
- Article
- Psychosocial impacts of caring for a child with a genetic disorder in Accra, Ghana.Journal of community genetics · 2023Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThis study sought to explore the burden experienced by informal caregivers in caring for their children with sickle cell disease (SCD).
designA qualitative exploratory design was employed in the study using in-depth interviews.
settingThe study was conducted at the sickle cell clinic of the Tamale Teaching Hospital, Ghana.
participantsData were gathered from 15 purposively selected informal caregivers, whose children with SCD received care at the sickle cell clinic of the Tamale Teaching Hospital, using a semistructured in-depth interview guide in May-June 2021. Their responses were audio-taped, transcribed and analysed using the reflexive thematic analysis approach.
resultsFive major themes emerged from data analysis. These were: the burden of children's ill-health; financial burden; employment challenges; psychosocial burden and determinants of caregivers' burden. These burdens destabilised the personal lives, financial standing, social relationships, and employment of caregivers in general and that of other immediate family members, thus, impacting family processes and health.
conclusionsHealth professionals must devise strategies for counselling, early diagnosis and effective management of children with SCD across Ghana. The Ministry of Health must subsidise medications and laboratory services for children with SCD to help minimise the financial burden on caregivers. Further, counselling and psychological support services must be established in hospitals to assist caregivers to cope effectively.
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