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

BACKGROUND: In Ghana, little is known about fathers' experiences caring for children with cerebral palsy. PURPOSE: The purpose of this study is to explore a. the caregiving demand and burden on fathers of children with cerebral palsy and b. describe the caregiving consequences and coping strategies of fathers of children with cerebral palsy. DESIGN AND METHODS: The study utilized an exploratory, descriptive qualitative approach with a sample size of fifteen fathers purposively selected. The study used a semi-structured interview guide to conduct a one-on-one interview with participants. The analysis performed was thematic and content analysis. RESULTS: The results revealed complexities of care demand and burden; thus, meeting the child's needs resulted in physical and mental exhaustion, frequent hospital visits, and substantial financial implications for fathers. CONCLUSIONS: We conclude that the family, particularly fathers, need support to embrace the challenging care roles as parents to children with cerebral palsy. It is evident that caring for children is mainly reserved for mothers in the African context. However, the demanding nature of care for a child with a developmental disability requires the involvement of both parents to meet the child's care needs and reduce the caregiver's care burden. PRACTICE IMPLICATIONS: Health professionals, particularly nurses must initiate and advocate for fathers' active participation in daily childcare. Tailored supportive care for families with children with disabilities in sub-Saharan Africa is required.

Physical and socioeconomic burden of caregiving on family caregivers of children with cancer at a tertiary Hospital in Ghana.

BACKGROUND: Childhood cancer is proportionately higher in Africa and these result in increased demands on caregivers. The inability of affected children to take care of themselves; coupled with prescribed medical interventions presents physical and social burdens on family caregivers. AIMS AND METHODS: This study used a qualitative exploratory design to explore the physical and socioeconomic challenges for family caregivers of children diagnosed with cancer and receiving care at one of the biggest tertiary hospitals in Ghana. A total of thirteen family caregivers of children with cancer were interviewed. FINDINGS: Two major themes were identified: Burden of care on Physical Health and Socioeconomic burdens of caregiving on the family caregiver. It was reported that family caregivers encounter physical challenges such as Aches and Pains when performing caregiving activities, Loss of Appetite, Fatigue, Compromised Functional State and Sleep Disruption. The second theme, Socioeconomic burdens of caregiving on family caregivers account for the consequences of caregiving on social lives, family relationships, finance and employment. CONCLUSIONS AND RECOMMENDATIONS: The study recommends that measures that provided relief for the caregivers such as teaching them to adopt local measures of pain relief such as massage should be encouraged. Policies should adopt measures that encourage caregivers to have some days of rest whiles providing care to their children with cancer. Also, health insurance packages that provide relief for the cost of accessing healthcare, should be extended to children with cancers to support their caregivers.

The perception of parents with a child with sickle cell disease in Ghana towards prenatal diagnosis.

Sickle cell disease is a global health concern. In the UK and USA, where the condition is common, prenatal testing is a routine aspect of antenatal care and offered on the basis of informed reproductive choice. Notwithstanding considerable advances in testing technologies, prenatal diagnosis for sickle cell disease is not common in Africa. There is a particular lack of research examining parental perceptions about the acceptability of antenatal screening. This qualitative paper explores the perceptions of parents, who had lived experiences of caring for a child with SCD, towards prenatal testing for sickle cell in Ghana. A purposive sample of 27 parents (four fathers and 23 mothers) was recruited via a sickle cell clinic in Accra, Ghana. Material was collected using semi-structured interview, using a topic guide that explored parental views on prenatal testing, along with factors influencing decision making about antenatal care. The findings shown that parents believed the decision to accept testing should be negotiated between both parents rather than the extended family. The decision to accept testing did not mean that parents would use the information to terminate the pregnancy of a child with SCD. They mentioned that they were more likely to use the test result to prepare themselves for the birth of their child. Parents accepted, however, that choice was important and that some parents may wish to terminate the pregnancy, given the impact of SCD on a person's quality of life. Parents lack awareness about prenatal testing because the procedure was not part of antenatal services in Ghana. However, the majority would accept testing should the process be available and affordable. The paper suggests that policy needs to establish and promote sickle cell prenatal testing/prenatal diagnosis and awareness among at-risk populations, bearing in mind the cost implication of the technology, equal access to healthcare, and the importance of informed reproductive decision making, which connects to the parents' experience of testing/screening.