Burden experienced by informal caregivers of children with sickle cell disease (SCD): a qualitative exploratory study at Tamale Teaching Hospital, Ghana

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.

Current Methods of Newborn Screening Follow-Up for Sickle Cell Disease Are Highly Variable and without Quality Assurance: Results from the ENHANCE Study

“…This result is similar to findings from other studies where caregivers who have a child with SCD or a family history of SCD tend to more willingly accept the results. However, those families who have friends or community members with a child with severe SCD tend to have intense anxiety due to prior negative experiences with the disease [ 39 ]. In addition, parents who received results in a face-to-face setting as part of regular scheduled appointment reported that this method of disclosure was helpful [ 40 ].…”

Exploring Factors Associated with Quality of Life in Caregivers of Children and Adolescents with Sickle Cell Disease and HIV: A Comparative Analysis

“…Research findings indicate that as a child's illness advances, both the child and their caregivers undergo a decline in quality of life, leading to a notable deterioration in their physical, psychological, social, and economic welfare [ 18 ]. Caregivers of children with chronic illnesses, such as sickle cell disease and HIV, may experience significant impacts on their quality of life due to increased stress, financial strain, social isolation, and changes in routines [ 19 , 20 ].…”