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Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE)

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  • Jenny Gyllén

    (Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, 40530 Gothenburg, Sweden
    Region Västra Götaland, Department of Ophthalmology, Sahlgrenska University Hospital, 41345 Mölndal, Sweden)

  • Gunilla Magnusson

    (Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, 40530 Gothenburg, Sweden
    Region Västra Götaland, Department of Ophthalmology, Sahlgrenska University Hospital, 41345 Mölndal, Sweden)

  • Anna Forsberg

    (Research Group: Care in High Tech Environments, Institute of Health Sciences, Lund University, 22100 Lund, Sweden
    Thoracic Unit, Skåne University Hospital, 22185 Lund, Sweden)

Abstract

Parents are a crucial part in the care of children with pediatric cataract. The aim of this study was to explore and explain sense of coherence, family self-efficacy, perceived social support, fatigue and parent reported experiences (PREM), in order to improve clinical care. Questionnaires were sent to the parents of children registered in the Swedish national Pediatric Cataract Register, PECARE, from 2006–2019 ( n = 506). The response rate was 46% ( n = 231), 185 mothers and 44 fathers with a mean age of 40.39 years (SD ± 6.41 years). In total, 38% of the parents reported severe fatigue, and mothers were more burdened than fathers. Sense of coherence was strongly related to fatigue, especially among parents of children with bilateral cataract. Mental fatigue and reduced motivation explained 45% of the variation in sense of coherence. Being taken seriously by the ophthalmological clinic explained over 60% of the variation in satisfaction with care when controlled for parents’ age and gender. In conclusion, fatigue is important to take in consideration when interacting with parents of children with cataract, especially those with bilateral cataract. Being taken seriously is the key marker of satisfaction with care and support from professionals. In addition to fatigue, the parents’ age and life situation affect how they perceive their own, as well as the professionals’ effort, and should be considered when tailoring family-centered care.

Suggested Citation

  • Jenny Gyllén & Gunilla Magnusson & Anna Forsberg, 2020. "Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE)," IJERPH, MDPI, vol. 17(17), pages 1-12, August.
    • Handle: RePEc:gam:jijerp:v:17:y:2020:i:17:p:6329-:d:406527
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    References listed on IDEAS

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    1. Anna Forsberg & Andreas Rantala, 2020. "The Being Taken Seriously Questionnaire—Development and Psychometric Evaluation of a PREM Measure for Person-Centeredness in a High-Tech Hospital Environment," IJERPH, MDPI, vol. 17(8), pages 1-10, April.
    2. Nuño, Roberto & Coleman, Katie & Bengoa, Rafael & Sauto, Regina, 2012. "Integrated care for chronic conditions: The contribution of the ICCC Framework," Health Policy, Elsevier, vol. 105(1), pages 55-64.
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