Experiences and Coping Strategies of Primary Caregivers of Children with Severe Visual Impairment in Nigeria: A Qualitative Study.

Abstract

Background Childhood visual impairment (VI) remains a critical global public health challenge, affecting approximately 91 million children worldwide, with 90% of cases occurring in low- and middle-income settings. In Nigeria, while clinical management of ocular diseases is often prioritized, the multidimensional psychosocial and economic toll on primary caregivers remains largely under-recognized. This study addresses the critical gap in qualitative research examining the emotional, cultural, and psychological experiences of these caregivers within the Nigerian context. Methods Utilizing a a hermeneutic phenomenological approach, this study explored the lived experiences of 11 primary caregivers (mean age 36; 91% female) purposively recruited from a regional paediatric ophthalmic referral in Nigeria. Participants, all with a minimum of three years of experience caring for children with severe VI, participated in one-on-one, in-depth semi-structured interviews lasting an average of 55 minutes. Data were transcribed verbatim and analyzed using an iterative thematic analysis framework to ensure depth and methodological rigor. Results Four major themes emerged from the data: (1) The Holistic Burden of Caregiving, which encompasses chronic emotional distress manifested as persistent worry, sadness, emotional exhaustion, frequent crying, and feelings of being overwhelmed; depressive symptoms including hopelessness and episodes of depression; and considerable physical strain, including frequent headaches, fatigue, and sleeplessness; (2) Navigating a Support Void, characterized by pervasive institutional neglect that forced a heavy reliance on faith communities and immediate family members for practical and emotional support. Some caregivers faced dehumanizing treatment and social exclusion from extended family members who viewed disability as a "nemesis" or punishment; (3) Anticipatory Anxiety, specifically regarding the child's future independence, social acceptance, and marriageability in the African context, often described as a chronic "what if" syndrome; and (4) Multidimensional Adaptation, where resilience was sustained through spirituality, meticulous pragmatic planning (e.g., using electronic reminders), and cognitive restructuring triggered by exposure to successful adult role models with VI. Conclusion The findings reveal a profound tension between the overwhelming physical and emotional costs of caregiving and the sophisticated adaptive strategies employed by families in a resource-constrained environment. Caregivers frequently emerge as "hidden patients" whose well-being is essential yet neglected within the current health system. There is an urgent need to integrate mandatory psychosocial counselling and structured referral pathways into routine paediatric eye care. Moving toward a holistic, family-centred model is critical to support the mental health and long-term effectiveness of those providing essential care for visually impaired children.