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Important sources of information to support self-management for families of children with pediatric cataracts – based on PECARE Sweden/Sahlgrenska University Hospital

Journal article
Authors Jenny Gyllén
Anna Rosenberg
Frida Rydström
Alf Nyström
Anna Forsberg
Gunilla Magnusson
Published in International Journal of Ophthalmic Practice
Volume 6
Issue 1
Pages 23-29
ISSN 2044-5504
Publication year 2015
Published at Institute of Neuroscience and Physiology, Department of Clinical Neuroscience and Rehabilitation
Pages 23-29
Language en
Keywords Self-management, Parents, Family, Cataract, Paediatric
Subject categories Ophtalmiatrics


ABSTRACT Purpose The aim of this study was to improve treatment concordance by investigating important sources of information on self-management for families of children with pediatric cataracts, from the perspective of parents and ophthalmologists. Methods This mixed-method study involved a deductive approach using a questionnaire administered to 69 families of children operated on and registered with the Swedish Pediatric Cataract Register (PECARE Sweden) in southern Sweden, as well as 30 pediatric ophthalmologists who monitored the patients upon their return to the local health care facility. An inductive approach was applied using analysis of open-ended questions about self-management. Both groups were asked about their perception of the value of strategies for providing information, and the timing of this. Results The response rate was 68% for families and 93% for ophthalmologists. Both groups agreed that ophthalmology visits were the most important source of information, followed by information in writing and online. Parents of children diagnosed before the age of 3 months were more likely to prefer written information. Content analysis revealed that a person-centred care is important. Conclusion Parents, particularly of the youngest children, requested more and directed information. By promoting self-management, a person-centred care may play a decisive role in treatment outcome.

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