Support for infants and young people with sight loss: a qualitative study of sight impairment certification and referral to education and social care services

OBJECTIVES: To examine the experience of infants, children and their parents, the role of ophthalmologists and other health, social care and education professionals in the certification and registration processes and examine the relationship between certification and referrals and pathways to support. DESIGN: Qualitative study. SETTING: Telephone interviews with health and, social care professionals, qualified teachers of children and young people with vision impairment (QTVIs) and parents of infants/children in England. PARTICIPANTS: 52 health, social care and education professionals who are part of the certification or registration process. 26 parents of infants and children with vision impairment. RESULTS: Referrals to education do not require a Certificate of Vision Impairment (CVI); however, the majority of parents received support from education and social services only after an offer of the CVI, which was often dependent on having a formal diagnosis. Parents stated they wanted support sooner, particularly parents of children with additional complex needs who experienced longer delays. Areas with multidisciplinary teams and support roles such as eye clinic liaison officers (ECLOs) appeared to have more reliable referral pathways. CONCLUSIONS: For infants and children with vision impairment, there should be a consistent mechanism for triggering education and social care support even with uncertainty about diagnosis and/or prognosis. All professionals involved in the certification and registration processes (ophthalmologists, optometrists, ECLOs, orthoptists, social workers, QTVIs) can better communicate the value and benefits of certification and registration.