Burden of Care, Self-Care Practices and Quality of Life among Caregivers of Children with Sickle Cell Disease in Ghana

Abstract

This study explored psychosocial factors driving the burden of caregiving, self-care practices, and quality-of-life among caregivers of children with sickle cell disease (SCD) in Ghana. The study used the socio-ecological model, self-care theory, and quality-of-life theory as theoretical frameworks. A sequential exploratory mixed-method design was used. The qualitative phase explored; psychosocial factors driving burden, understanding of self-care and self-care practices, and suicidality among the caregivers. Qualitative data was gathered from 34 caregivers (females = 29, age range = 22–85) using semi-structured individual interviews, and analysed using thematic analysis The follow-up quantitative phase examined burden of caregiving and predictors of caregiver burden. The quantitative data was gathered using survey with 486 respondents (females = 428, age range = 18–66, 40.2 ± 8.9), and analysed using descriptive statistics, ANOVA and hierarchical multiple regression inferential statistical techniques. Emergent themes from the qualitative phase showed that the caregivers experienced five domains of burdens- psychological, financial, physical health, work-related, and marital burdens. Psychological burden was driven by acceptability of chronicity, cumulative and complex grief patterns, selective disclosures, psychological compensation, and access to information. Second, financial burden was driven by sense of unfulfilled dreams, dependence on a single income source, and inability to meet other critical financial obligations. Additionally, physical burden was driven by assumption of sole responsibility of care, use of activity-based coping, and pre-existing health conditions. Work burden was also driven by emotional labour at work, complaints by colleagues and guilt of missing work. Further, marital burden was driven by accusations, thoughts of divorce, and fear of giving birth again. The themes showed further that the caregivers’ understanding of self-care reflected materialistic and beauty-focused, age-related dismissal, selfish investment, inactivity, and idleness. The caregivers employed strategies like seeking emotional support, engaging in hobbies, and practicing relaxation techniques to improve their mental well-being. They also found solace and strength in their religious or spiritual beliefs, incorporating prayer, meditation, or religious practices as part of their self-care routine. Suicidal ideation was virtually non-existent. However, some expressed that they had wished for death when their children were diagnosed with sickle cell disease (SCD). Some also mentioned wishing that their children who were diagnosed with the condition, would die. Findings from the quantitative phase showed that, the burden of caregiving was significantly highest among biological mothers compared to fathers and other family caregivers. Additionally, educational level, employment status, and residence of the caregivers had significant effects on their burden. Further, an interaction effect between employment status and residence indicated that employed caregivers residing in rural areas faced heightened burden. Self-care and stigma significantly predicted dimensions of caregiver burden, with higher self-care associated with lower physical and psychological burdens. Health responsibility, physical activity, and interpersonal relationships significantly predicted physical and psychological burdens. Nutrition and stress management significantly predicted physical burden, while spiritual growth significantly predicted psychological burden The convergence of qualitative and quantitative findings emphasizes the multidimensional nature of the burden of caregiving and the vital role of self-care practices in enhancing caregivers' quality-of-life. The findings expand theoretical frameworks by highlighting the influence of socio-ecological factors, self-care practices, and quality-of-life on the well-being of caregivers. The findings underscore the importance of integrating psychological support and self-care interventions into the healthcare system for these caregivers. Such interventions can help alleviate the burden of caregiving, enhance mental well-being, and ultimately improve the quality of care provided to children with SCD.