Sickle Cell Disease in Children: Knowledge and Home-Based Management Strategies among Caregivers at a Tertiary Facility in Northern Ghana

Abstract

Sickle cell disease (SCD) is a serious genetic and inherited disorder. It has a physical, psychological, and socioeconomic impact on affected individuals including children and families. Globally, about 275,000 children are born annually with SCD, with an estimated 85% of these births being in Africa. In Ghana, an estimated 2% of infants that were screened were affected by SCD. Although extensive studies have been conducted on the burden on parents of children with SCD, little is known about how parents manage the disease among their children at home in our setting. This qualitative study explored the knowledge of caregivers of children with SCD, how they recognize/monitor complications of the disease and management strategies at home. An explorative qualitative study using the nonprobability purposive method was used to interview fourteen (14) caregivers of children with SCD who were recruited from the Tamale Teaching Hospital. In-depth interviews using an interview guide was used. A tape recorder was used to record each interview yielding a total of fourteen (14) audios. Audiotapes were transcribed verbatim. Data collected during these interviews were analyzed using inductive thematic content analysis. Caregivers have adequate knowledge of the signs and symptoms of SCD, its complications, and the various types their children have but fall short of knowledge on the cause of SCD. Knowledge acquired on SCD does not translate into caregivers’ ability to effectively identify and monitor crises or complications at home. Home management strategies used by caregivers’ were both pharmacological and nonpharmacological, and some used the combination to manage pain and monitor the health of their children. Even though the majority have used traditional medicine before, they prefer orthodox interventions which they consider more effective.

Hidden stories of caregivers with children living with sickle cell disease in Uganda: experiences, coping strategies and outcomes

“…Many participants faced financial hardships, impacting their ability to access proper medical care and support for their child’s condition. This finding aligns with other studies conducted in similar contexts, where financial strain was reported as a common challenge for caregivers of children with sickle cell disease (22), (1), this still shows a lot of economic hardships that are still prominent among the caregivers.…”

“…The positive attitude towards local herbal remedies reflects the integration of traditional and modern approaches to healthcare in Uganda, a similar study in knowledge of SCD among caregivers at a tertiary facility in Northern Ghana found that caregivers employed both pharmaceutical and non-pharmacological home management techniques, and some caregivers combined the two to control discomfort and keep an eye on their children’ health. Despite the fact that the majority had previously used traditional medicine, they favor conventional interventions because they believe they are more successful (21). Whereas for Uganda, the traditional remedies were used as an adjunct to modern medicine in cases where most of the participants were lacking enough funds and transport to the health facility according this study.…”