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The aim of this study was to analyse non-directed parental feedback to health care providers responsible for paediatric cataract care in Sweden. This was a cross-sectional study including open-ended questions. Ninety percent were mothers, and most from Sweden (82.5%) with university education (75%) who were working or studying (77%) and living in a conjugal family (85%). Deductive analysis was conducted using a model of balancing the child’s activities and abilities within the categories of mastering, collaborating, facilitating and adapting. The study highlights the pros and cons of parental self-management. Parents’ suggestions for the eye team included: (1) listen to the parents, (2) provide information straight after the referral but before the first check-up, (3) provide more direct information about diagnosis and prognosis, (4) provide more support about patching and visual stimulation, (5) provide contact with other parents in similar situations, (6) provide more support in the context of education / school, (7) provide direct contact channel to enable text messages and photograph sharing, (8) give regular appointments in the first postoperative year, and (9) provide case manager to give added support. The authors conclude a caring partnership is needed for parents of children with cataracts, where parental reports are listened to and taken seriously.

PECARE: parental feedback to improve congenital cataract care in Sweden.
Gyllen J, Haargaard B, Nystrom A, et al.
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Fiona Rowe (Prof)

Institute of Population Health, University of Liverpool, UK.

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