Determinants of Retention in Care of Newborns Diagnosed with Sickle Cell Disease in Liberia: Results from a Mixed-methods Study of Caregivers

Background: Nearly 300,000 infants are born with sickle cell disease (SCD) in sub-Saharan Africa (SSA) annually, where survival to age 5 years is estimated to be 10-50%. Studies in high-income nations have established that early diagnosis and preventive treatment of SCD can reduce early deaths. Through a pilot neonatal screening study in Liberia, the diagnosis of SCD was made in 1.3% of newborns tested. Newborn screening (NBS) enables early diagnosis and linkage to care for provision of early penicillin prophylaxis, patient/caregiver education and clinical monitoring. In low- and middle-income countries (LMICs), many health needs are met outside of the formal health care system. The factors contributing to high rates of attrition from clinical care in the SCD population in LMICs are multi-factorial and poorly understood. The objective of this study is to define factors that influence caregiver decision-making around chronic health care needs of a child with SCD following a diagnosis through NBS.

Methods: We conducted a mixed methods study of caregivers of children diagnosed with SCD through the NBS program at John F. Kennedy Medical Center in Monrovia, Liberia. We recruited a convenience sample of caregivers to complete demographic surveys, questionnaires, and semi-structured interviews. We managed quantitative data in Excel and performed descriptive statistical analyses. Interviews were digitally recorded and transcribed. We uploaded transcripts into Dedoose for coding and analyzed qualitative data using a thematic approach to identify emergent themes.

Results: Twenty-six caregivers (22 females and 4 males) whose children were diagnosed with SCD via NBS participated. The median age of the children at the time of interview was 46.5 months (IQR 7.3 months). Among caregivers, 6 had never brought the child back to the clinic, 11 estimated fewer than 5 visits, 4 reported 6-10 visits, and 5 reported more than 10 visits since the diagnosis discussion in clinic. Fifteen respondents (58%) reported giving their child penicillin prophylaxis regularly. We identified the following barriers which negatively impact decision-making: prevalent community misconceptions about SCD, challenges of poverty, fear of disease disclosure to family and community, poor knowledge of SCD, denial of child’s diagnosis, and difficulty accessing the health facility due to location. Themes which positively impacted decision-making included: cultural standards that enabled community-level support, importance of familial support, religion as a coping mechanism, a strong perception that clinics and medications could be helpful.

Conclusion: These findings highlight the need for community engagement and awareness to aid in dispelling myths and misconceptions about SCD. Stigma and discrimination may lead to fear of disclosure and affect health seeking behavior. Programs that increase the knowledge and understanding of the disease could lead to improved patient outcomes and disease management. The poor economic status and difficulty accessing care negatively impact retention, despite perceived benefits derived from clinical care.