Care and services for children with cerebral visual impairment – barriers, facilitators and experiences: a mixed-methods systematic review

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 Included studies (n = 23) spanned education, healthcare and home settings and involved children, caregivers, teachers, educational specialists and healthcare professionals (n > 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.