Lived experiences of mothers caring for children with cerebral palsy in Rwanda: a phenomenological study
摘要
Mothers of children with Cerebral Palsy face increased responsibilities and challenges, exacerbated by traditional gender roles that assign most home duties to women. In patriarchal societies such as Rwanda, these gender norms can limit women’s rights and reinforce unequal power dynamics. Despite the joy that children with disabilities may bring by achieving some developmental milestones, caregiving imposes emotional, physical, and financial burdens, affecting caregivers’ overall well-being and marital relationships. Research on cerebral palsy in Rwanda is limited, with existing studies suggesting that mothers face significant challenges.
ObjectiveThis study aimed to explore the lived experiences of mothers of children with cerebral palsy and identified the specific difficulties they encounter.
MethodologyThis study used a phenomenological hermeneutic study design to explore the lived experiences of mothers as well as their challenges in caring for children with cerebral palsy. A purposive sample of ten mothers of children with cerebral palsy was recruited. The key informants’ interviews were conducted using an interview guide, and inductive thematic analysis was performed using NVIVO software. Through an iterative process of comparison and refinement, codes were reviewed, clustered, and organized into broader categories. Codes that describe challenges faced by mothers and emotional experiences were created. Themes emerged as long as researchers were organizing and grouping related codes into broader themes.
ResultsMothers who are responsible for the care of their children with cerebral palsy encounter challenging and stressful circumstances, including marital difficulties, time-consuming care, financial burdens and social stigma. Additionally, they grapple with feelings of hopelessness regarding the future of their children and struggle to select appropriate food for their children.
ConclusionMothers caring for children with cerebral palsy face multiple challenges, the findings of this study suggest a need for improved support mechanisms for families of children with cerebral palsy. Areas that warrant attention include enhanced care and treatment, financial support, availability of assistive devices, and providing timely, clear, and empathetic communication at the time of diagnosis. Strengthening these areas may contribute to better caregiver coping and family functioning. Future research should include fathers and relatives to provide a more comprehensive understanding of caregiving.