Lauren R Hepworth, Temitope Labinjo, Andrew Riley, Cathy Williams, John Ravenscroft, Brinton Helliwell, Ffion Curtis, Michelle Maden, Charlotte Croft, Vijay S Gc, Andrew Hill, Ruaraidh Hill, Shelley Robinson, Catrin Tudur Smith, Fiona J Rowe
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.
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.