Understanding the Experiences of Caregivers for Children Five Years and Above Living with Sickle Cell Diseases in Kaduna, Nigeria

Background: Sickle cell disease (SCD) affects more than 20 million people globally and disproportionately affects individuals of African descent. Nigeria has the highest number of newborns with SCD, accounting for more than 150, 000 births annually; yet this region lacks many needed resources that will cater for the parents and caregivers of these individuals. Being a lifelong disease, SCD is associated with financial, social, and emotional challenges for families, and little attention has been paid to this aspect in low- and middle-income countries (LMIC), where the burden is highest. The long-term goal is to deliver education and support to the families of children with SCD in LMIC. The aim of the current study is to understand the experiences of caregivers of children with SCD in northern Nigeria.

Methods: This is a qualitative cross-sectional study using in-depth interviews with caregivers of children with SCD attending routine clinic at Barau Dikko Teaching Hospital (BDTH) in Kaduna, Nigeria. The interview guide was written with the structure of the Exploration, Preparation, Implementation, Sustainment (EPIS) framework, where we focused on the Exploration phase to enable us to identify the needs of caregivers and how best to address these needs. The study was approved by the IRBs at BDTH and Washington University School of Medicine, and informed consent was obtained from participants. Interviews were completed in English or Hausa, transcribed (translated from Hausa), and coded with inductive and deductive approaches. Nvivo software was used by the coding team.

Results:Eighteen in-depth interviews lasting 30-45 minutes were conducted with caregivers of children with SCD attending follow up at the Barau Dikko Teaching Hospital (BDTH) in Kaduna, Nigeria (11 - English, 7 - Hausa). All (100%) participants were female with a mean age of 36.5 years (±7.1), 50% were civil servants, 39% were self-employed and 11% were full time homemakers.. The most common themes identified included: 1) Attitudes toward SCD including diagnosis, 2) Knowledge of SCD including genetics, 3) Stigmatization, 4) Impact on family relationships, 5) Educational experience of students with SCD, 6) Parenting hardships and social isolation, 7) Financial barriers, 8) Methods of coping and support. Caregivers largely experienced stigma with carrying the sickle trait and having children with SCD. Inconsistent screening for sickle trait - access to premarital testing, accurate test results, delayed diagnosis time, lack of space in facilities, and counseling - is a cause of concern for caregivers. The students need academic support and accommodations for frequent absenteeism, and the families desire more support to address financial strain and community isolation. Religion was a large source of coping and support, but families largely felt ill equipped.

Conclusion: Caregivers of children with SCD in Nigeria commonly experience fear, guilt, and a sense of being overwhelmed with little support. Families are seeking more information, emotional and educational support including resources to care for their children. All caregivers provided suggestions for future interventions. Resources for medical care are challenging, yet education and behavioral interventions for support may be more achievable. Further studies that incorporate these will incorporate these findings are necessary.

Bello-Manga:Forma: Honoraria; Pfizer: Consultancy, Honoraria. Ijei-Enesi:Agios: Honoraria; Novo Nordisk (Forma): Honoraria; EU Horizon 2020 ARISE: Other: Training fellowship. King:UpToDate: Patents & Royalties; Cigna: Consultancy.