Mental Health Issues and Associated Coping Strategies among Caregivers of Children and Adolescents With Sickle Cell Disease: Case of Siaya County Referral hospital

Abstract

Caring for children and adolescents with Sickle Cell Disease (SCD) can impose substantial psychological, social, and emotional burdens on caregivers, which, if unaddressed, may significantly affect their mental health. Despite this, limited localized data exist on the psychosocial impact of SCD and the coping mechanisms employed by caregivers in the study area. This study, therefore, sought to assess mental health issues and associated coping mechanisms among caregivers of children and adolescents with SCD at Siaya County Referral Hospital. The study was anchored on the ABC-X model, Double ABC-X model, Lazarus and Folkman’s Transactional Model of Stress and Coping, and the Family Systems Theory. A cross-sectional descriptive design employing a mixed-methods approach was adopted. Sampling integrated census and convenience techniques, targeting 74 caregivers for quantitative data and 10 for qualitative interviews. Data were collected using an instrument that combined the standardized DASS-21 and Brief COPE tools, complemented by semi-structured interviews to gain deeper insights into caregivers’ lived experiences. Ethical approvals were obtained from DU-ISERC, NACOSTI, and Siaya County Referral Hospital, and informed consent was secured from all participants. Quantitative data were analyzed using SPSS, applying descriptive and inferential statistics, including Chi-square tests to examine associations between variables. The results indicated that the majority of caregivers experienced symptoms of depression, with anxiety being the most prevalent, while stress symptoms were relatively less pronounced. Demographic variables demonstrated statistically significant associations with mental health outcomes, with age showing the strongest relationship, followed by marital status and living arrangements. In terms of coping mechanisms, caregivers predominantly employed problem-focused strategies over emotion-focused and avoidant approaches. A strong statistical association was found between mental health outcomes and coping mechanisms, suggesting that psychological well-being and adaptive capacity functioned as interdependent systems. Qualitative findings yielded five major themes: (1) overwhelming caregiving responsibility with gradual adaptation, (2) family disruption and economic strain, (3) medical complexity and social isolation, (4) limited formal support coupled with strong religious foundations, and (5) faith-based coping integrated with practical problem-solving. The study concludes that although caregivers demonstrate resilience through problem-focused and faith-based coping approaches, substantial mental health challenges persist, particularly depression and anxiety. It recommends the implementation of comprehensive mental health screening during routine SCD clinic visits, integration of counseling and psychosocial support services, and the development of coping skills training programs that reinforce existing adaptive strategies while promoting emotion-focused coping. Policy frameworks should prioritize integrating mental health services into SCD care to prevent the escalation of psychological distress among caregivers.