title: Support for infants and young people with sight loss: a qualitative study of sight impairment certification and referral to education and social care services.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  Qualitative study.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
authors.affiliation: Cardiff, UK.
authors.forename: Tammy
authors.initials: T
authors.lastname: Boyce
authors.affiliation: NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, UK.
authors.forename: Annegret
authors.initials: A
authors.lastname: Dahlmann-Noor
authors.affiliation: International Centre for Eye Health, London School of Hygiene and Tropical Medicine, London, UK Institute of Child Health, London, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Bowman
authors.affiliation: Royal National Institute of Blind People (RNIB), Birmingham, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Keil
mesh_terms: D001766:Blindness / Q000175:diagnosis*; D002568:Certification / Q000331:legislation & jurisprudence* / Q000592:standards*; D002648:Child; D004739:England; D006282:Health Personnel / Q000523:psychology; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D010290:Parents / Q000523:psychology; D010353:Patient Education as Topic; D036301:Qualitative Research; D012017:Referral and Consultation / Q000592:standards*; D012946:Social Welfare / Q000331:legislation & jurisprudence*; D013689:Telephone
keywords: QTVIs; QUALITATIVE RESEARCH