The contribution of social and family networks in supporting care of children with sickle cell disease in Tanzania

Background The care of children with Sickle cell disease (SCD) in Africa has been the work of mothers or women within communities. Previous studies have indicated that mothers in these families are supported by other women within the family or even from outside family structures. Such support has allowed significant sharing of responsibilities in both domestic and care giving roles for children with sickle cell disease. However, there is limited recognition of this informal support and its importance as a key element in health care provision. Objective In this paper, we aim to demonstrate how these support networks have been used by mothers in shouldering their caregiving roles. We also propose how the networks can be integrated into the health care system to improve quality of care of the children with SCD. Methods We conducted interviews with families of children who are diagnosed with sickle cell disease through newborn screening program in Tanzania between 2015 and 2019. In total, 15 families were included through focus group discussions (FGDs), dyadic interviews, and individual interviews. Also, a survey was conducted involving 100 families of children with SCD aged between 0 and 17 years to assess the different networks of care that exists within families and communities. Thematic analysis was used for the qualitative data while data from the survey was presented in proportions as pie charts. Results The results from the FGDs and IDIs demonstrated three ways in which the networks of care were supportive to mothers (1) Facilitating sickle cell disease diagnosis to children who were undiagnosed (2) Caring for the sick child (children) after diagnosis and (3) Support at home in caring for other children who are not sick and helping with domestic work responsibilities. Survey results indicated that the highest proportion of the respondents listed mothers of the children as the primary care giver (88%), followed by grandmothers (10%) and close family members (2%). Extended family members (20%) were recognized as the largest network of care in the absence of the primary caregiver outside the parents, followed by siblings, defined as elder brothers and sisters (18%) and grandparents (16%). Conclusion The findings from this study confirm that there is an important network supporting care of children with SCD in communities supporting parents. Enabling these support networks to be more formally integrated into the health care system will ensure those members of the community providing care are equipped with knowledge on sickle cell disease and having positive impact on the quality of care of the children born with SCD in sub-Saharan Africa. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The study was funded by the Sickle Cell Program at Muhimbili University of Health and Allied Sciences ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics Committee of Muhimbili University of Health and Allied Sciences gave ethical approval for this work I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes All data produced in the present work are contained in the manuscript