Next Article in Journal
Dextromethorphan Attenuates Sensorineural Hearing Loss in an Animal Model and Population-Based Cohort Study
Previous Article in Journal
The Perspectives of Professional Caregivers on Implementing Audio-Based Technology in Residential Dementia Care
Open AccessArticle

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

1
Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, 40530 Gothenburg, Sweden
2
Region Västra Götaland, Department of Ophthalmology, Sahlgrenska University Hospital, 41345 Mölndal, Sweden
3
Research Group: Care in High Tech Environments, Institute of Health Sciences, Lund University, 22100 Lund, Sweden
4
Thoracic Unit, Skåne University Hospital, 22185 Lund, Sweden
*
Author to whom correspondence should be addressed.
Int. J. Environ. Res. Public Health 2020, 17(17), 6329; https://doi.org/10.3390/ijerph17176329
Received: 4 August 2020 / Revised: 26 August 2020 / Accepted: 27 August 2020 / Published: 31 August 2020
(This article belongs to the Section Health Behavior, Chronic Disease and Health Promotion)
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. View Full-Text
Keywords: pediatric cataract; fatigue; parents; family centered care pediatric cataract; fatigue; parents; family centered care
MDPI and ACS Style

Gyllén, J.; Magnusson, G.; Forsberg, A. Parents’ Reported Experiences When Having a Child with Cataract—Important Aspects of Self-Management Obtained from the Pediatric Cataract Register (PECARE). Int. J. Environ. Res. Public Health 2020, 17, 6329.

Show more citation formats Show less citations formats
Note that from the first issue of 2016, MDPI journals use article numbers instead of page numbers. See further details here.

Article Access Map by Country/Region

1
Search more from Scilit
 
Search
Back to TopTop