PURPOSE: To examine the experiences of patients and/or caregivers of care/services for children with cerebral visual impairment (CVI), as well as the barriers and facilitators to access and delivery of care/services for children with CVI. MATERIALS AND METHODS: A systematic review of mixed-methods studies reporting patient and/or caregiver experiences of services, impact on quality of life, and barriers/facilitators to care and services, for children with CVI. Database searches (to July 2026), a call for evidence and quality appraisal were conducted. A thematic synthesis approach was utilised, and descriptive themes were mapped onto the Capability, Opportunity and Motivation (COM-B) model and Theoretical Domains Framework. RESULTS: > 1,430).Key barriers and facilitators shaping the experience of families/professionals dealing with CVI were found, including fragmented services hindering coordinated care, however, collaboration across settings created supportive environments. CONCLUSION: This review demonstrates that challenges in CVI care and service provision are best understood as interacting behaviours and systemic determinants, rather than isolated service failures. A shift in approach from episodic, diagnosis-led care to more co-ordinated, functionally orientated models of care spanning education, healthcare and home contexts are required.
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Hepworth et al. (2026) studied this question.
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