EXTENDED REPORT

Health services experiences of parents of recently diagnosed visually impaired children

J S Rahi¹, I Manaras², H Tuomainen³ and G Lewando Hundt⁴

¹ Centre for Paediatric Epidemiology and Biostatistics, and Department of Ophthalmology/Visual Sciences Unit, Institute of Child Health, Great Ormond Street Hospital, and the Department of Epidemiology, Institute of Ophthalmology, London, UK
² Institute of Child Health, London, UK
³ School of Health and Social Studies University of Warwick, UK
⁴ Institute of Health, School of Health and Social Studies University of Warwick, UK

Correspondence to:
Correspondence to:
Jugnoo Rahi
Centre for Paediatric Epidemiology and Biostatistics, Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; j.rahi{at}ich.ucl.ac.uk

Aim: To investigate the health service experiences and needs of parents in the period around diagnosis of ophthalmic disorders in their children.

Methods: Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at a tertiary level hospital in London participated in a questionnaire survey, using standard instruments, followed by in-depth individual interviews, to elicit their views about the processes of care, their overall level of satisfaction, and their unmet needs.

Results: 67% (147) of eligible families (135 mothers, 76 fathers) participated. Overall satisfaction with care was high, being greater among parents of children with milder visual loss or isolated ophthalmic disorders than those with more severe visual loss or multiple impairments. Nevertheless, parents’ reported greatest need was the provision of general information, including about their child’s ophthalmic disorder and educational and social services and support. Mothers reported greater information needs than fathers, as did white parents compared to those from ethnic minorities. White parents also regarded the processes of care to be less comprehensive and coordinated, as well as less enabling, than did parents from ethnic minorities.

Conclusions: Although parents reported high overall satisfaction with services, improving the medium, content, and scope of general information provided by professionals to parents of visually impaired children emerges as a priority. Equitable planning and provision of health services for families of children with visual impairment needs to take into account that informational and other needs vary by whether the parent is the primary carer or not and their ethnicity, as well as by the severity and complexity of their child’s visual loss.

Abbreviations: GOS, Great Ormond Street Hospital; MPOC, measure of processes of care

Keywords: health services research; visual impairment; children; disability; families

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