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Health services experiences of parents of recently diagnosed visually impaired children
J S Rahi1, I Manaras, H Tuomainen
1Centre for Paediatric Epidemiology and Biostatistics, Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK. j.rahi@ich.ucl.ac.uk
Insights
Parents of children diagnosed with visual impairments need better general information and support. Information needs vary by ethnicity and the child's condition severity, requiring tailored health services.
Area of Science:
- Ophthalmology
- Pediatric Health Services
- Family Support
Background:
- Parents of children diagnosed with ophthalmic disorders face significant challenges.
- Understanding parental experiences is crucial for improving pediatric eye care.
Purpose of the Study:
- To investigate the health service experiences and needs of parents during the diagnosis of their children's ophthalmic disorders.
- To identify areas for improvement in support and information provision for these families.
Main Methods:
- A mixed-methods approach combining questionnaire surveys and in-depth interviews.
- Involved parents of children newly diagnosed with visual impairment or ophthalmic disorders at a London tertiary hospital.
Main Results:
- High overall satisfaction with care was reported, but varied by visual loss severity.
- The greatest unmet need identified was for general information on the child's condition and available services.
- Mothers and white parents reported greater information needs and perceived care as less coordinated.
Conclusions:
- Improving the provision of general information is a priority for professionals supporting visually impaired children.
- Health services must be equitably planned, considering parental ethnicity, primary caregiver status, and the child's visual impairment complexity.
- Tailored information and support are essential for diverse families navigating pediatric ophthalmic disorders.
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.
