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Information sources and their use by parents of children with ophthalmic disorders
Jugnoo S Rahi1, Irene Manaras, Katharine Barr
1Centre for Paediatric Epidemiology, Institute of Child Health, Great Ormond Street Hospital, London, United Kingdom. j.rahi@ich.ucl.ac.uk
Insights
Parents of children with eye conditions primarily rely on ophthalmologists for information. While many can name the diagnosis, fewer understand its impact, highlighting the need for improved parental education.
Area of Science:
- Pediatric Ophthalmology
- Patient Education
- Healthcare Communication
Background:
- Parental involvement is crucial for effective clinical management in pediatric ophthalmology.
- Providing parents with adequate information empowers their participation in their child's care.
- Limited research exists on parents' information sources, their perceived usefulness, and its impact on understanding pediatric ophthalmic conditions.
Purpose of the Study:
- To investigate the sources parents use to learn about their child's ophthalmic condition.
- To determine which information sources parents find most useful.
- To explore the relationship between information sources and parental understanding of pediatric eye disorders.
Main Methods:
- A cross-sectional survey was conducted with parents/caregivers of children diagnosed with ophthalmic disorders for over a year.
- Participants were recruited from pediatric ophthalmology clinics at Great Ormond Street Hospital.
- Data collection occurred during a one-week period in August 2001.
Main Results:
- High participation rate (89%) among eligible parents.
- Ophthalmologists (79%) and family practitioners (42%) were the most common information sources.
- Verbal information from professionals was more frequent than written; only 46% of parents understood the disorder's nature and impact, despite 72% knowing the diagnosis.
- Ophthalmologists were ranked as the most important information source.
Conclusions:
- Ophthalmic professionals play a vital role in enhancing parental education directly.
- Professionals should actively support and guide information dissemination through primary care and online resources.
- Improving the quality and accessibility of information is essential for better parental understanding of pediatric eye conditions.
Purpose:
Parents' input is critical to clinical management in pediatric ophthalmology. The importance of providing parents with appropriate information to enable them to participate effectively is recognized. However, little is known about the range of sources parents use to learn about their child's ophthalmic condition, which sources they find most useful, and how this relates to their understanding.
Methods:
Cross-sectional survey of the parents or usual caregivers of children with diverse ophthalmic disorders, diagnosed at least 1 year earlier, who attended pediatric ophthalmology clinics at Great Ormond Street Hospital, London, during 1 week in August 2001.
Results:
Eighty-nine percent (n = 58) of parents with eligible children participated. Most parents received information from more than one source, with ophthalmologists (79%) and family practitioners (42%) being the two most frequently reported. Family support groups and voluntary organizations (29%) and the Internet (23%) were less commonly cited than anticipated. Parents reported receiving verbal information much more frequently than written information from professionals working with their children. Although 72% (n = 42) of parents could correctly name their child's diagnosis, only 46% (n = 27) were able to describe correctly the nature and impact of the disorder(s). Ophthalmologists were ranked as the most important source overall.
Conclusions:
The findings emphasize the key role of ophthalmic professionals in improving parental education directly, as well their responsibilities and opportunities to do so through supporting and shaping information provision through other sources, especially colleagues in primary care and the Internet.