Health services experiences of parents of recently diagnosed visually impaired children.

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.

Engaging families in health services research on childhood visual impairment: barriers to, and degree and nature of bias in, participation.

AIM: To investigate the barriers to, and degree and nature of bias in, participation in health services research by parents of children with visual impairment. METHODS: Parents of children newly diagnosed with ophthalmic disorders at Great Ormond Street Hospital, London, participated in a study to elicit their health service experiences and needs through a postal questionnaire survey followed by in-depth interviews. The participating and non-participating families were compared at different stages of recruitment, according to sociodemographic and clinical characteristics. RESULTS: 20% (55) of all eligible families could not be invited to participate because of out of date contact details for either the family and/or family doctor in the hospital and/or community record systems. Completed questionnaires were received from 67% (147/221) of contacted families, although only 6% actively declined to take part. Compared to non-participating parents, those who took part were more likely to be white British, from higher socioeconomic groups, have English as their main language, and have no other visually impaired family members. There were no significant differences according to the clinical characteristics of their affected children. CONCLUSIONS: Families from socioeconomically deprived and ethnic minority groups are likely to be less visible than others in health services research on childhood visual impairment. Geographical mobility in families of young children with visual disability poses a potentially important obstacle to engaging them in research on their experiences of health services. These findings indicate the importance of addressing potential biases in the design and interpretation of future studies, to ensure equity in recommendations for policy and practice, and in implementation of services.