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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

Artikel i vetenskaplig tidskrift
Författare Jenny Gyllén
Anna Rosenberg
Frida Rydström
Alf Nyström
Anna Forsberg
Gunilla Magnusson
Publicerad i International Journal of Ophthalmic Practice
Volym 6
Nummer/häfte 1
Sidor 23-29
ISSN 2044-5504
Publiceringsår 2015
Publicerad vid Institutionen för neurovetenskap och fysiologi, sektionen för klinisk neurovetenskap och rehabilitering
Sidor 23-29
Språk en
Länkar dx.doi.org/10.12968/ijop.2015.6.1.2...
Ämnesord Self-management, Parents, Family, Cataract, Paediatric
Ämneskategorier Oftalmiatrik

Sammanfattning

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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