Fathers' experiences of caring for children living with cerebral palsy: A qualitative study in a low resourced socioeconomic context, Ghana

Bentum, Lucy Selorm; Ohene, Lillian Akorfa; Agyare, Veronica Adwoa; Laari, Luke; Ampomah, Menford Owusu

doi:10.1016/j.pedn.2023.07.019

Journal of Pediatric Nursing

2023

DOI: 10.1016/j.pedn.2023.07.019

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Fathers' experiences of caring for children living with cerebral palsy: A qualitative study in a low resourced socioeconomic context, Ghana

Lucy Selorm Bentum,

Lillian Akorfa Ohene,

Veronica Adwoa Agyare

et al.

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2024

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Cited by 3 publications

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Caring for autism in Ghana: exploring the psychological impact and coping strategies of caregivers

Acheampong

2024

Cogent Education

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Caring for autism in Ghana: exploring the psychological impact and coping strategies of caregivers

Acheampong

2024

Cogent Education

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Financial strain and resilience: a qualitative exploration of parental perspectives on caring for children with sickle cell disease in Ghana

Ampomah,

Atkin,

Ohene

et al. 2024

BMC Health Serv Res

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Background In Ghana, nearly one in four (25%) of the population are sickle cell disease carriers. Furthermore, 2% of all babies born (20 for every 1000 live births) has sickle cell disease. However, little is known about how parents negotiate the financial challenges facing parents of a child with sickle cell disease. This study explores the financial difficulties of parents and children living with sickle cell disease. Methods The study adopted a qualitative approach. Twenty-seven parents were purposively selected from a sickle cell clinic in Accra, Ghana. Data collection was through an in-depth, face-to-face interview, using an interview guide based on the research objectives, and analyzed using thematic analysis. Result The findings showed that parents faced multiple financial difficulties (both direct and indirect) as they met the direct cost of medications, routine laboratory investigations, and hospital admissions. The National Health Insurance scheme does not wholly cover these costs. Families also describe more indirect costs, such as those associated with maintaining their child’s well-being alongside those connected to their caring responsibilities, including the impact of giving up work and reducing working hours. Findings highlight the most pressing challenge, including the lack of access to financial support and a more general lack of understanding of the difficulties they faced on the part of policymakers. Conclusion Supporting sickle cell parents’ financial needs would improve their emotional and social well-being, enabling them to be more effective family carers. Supplementary Information The online version contains supplementary material available at 10.1186/s12913-024-11773-8.

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The mediating role of social support in the relationship between care burden and sleep status of parents of children with cerebral palsy

Düken,

Şahin,

Karataş

2024

Anatolian Journal of Health Research

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Aim: This study was conducted to examine the mediating role of social support in the relationship between the care burden of parents of children with cerebral palsy (CP) and their sleep states. Material-Method: This descriptive correlational study was conducted with the parents of children with CP who were hospitalized in the pediatric clinics of a university hospital and followed up in the pediatric outpatient clinics. The data were collected using the parent information form, Zarit Caregiver Burden Interview, Multidimensional Scale of Perceived Social Support, and Richards Campbell Sleep Scale. The mediating role of social support in the relationship between parental care burden and sleep status of parents of children with CP was examined using the AMOS software. Result: According to the results of the analysis, the Zarit Caregiver Burden Scale score predicted the Richards Campbell Sleep Questionnaire score (β=-0.932; p

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Fathers' experiences of caring for children living with cerebral palsy: A qualitative study in a low resourced socioeconomic context, Ghana

Cited by 3 publications

References 40 publications

Caring for autism in Ghana: exploring the psychological impact and coping strategies of caregivers

Caring for autism in Ghana: exploring the psychological impact and coping strategies of caregivers

Financial strain and resilience: a qualitative exploration of parental perspectives on caring for children with sickle cell disease in Ghana

The mediating role of social support in the relationship between care burden and sleep status of parents of children with cerebral palsy

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