Parents’ reported experiences when having a child with cataract—important aspects of self-management obtained from the paediatric cataract register (PECARE)

Research output: Contribution to journalArticle


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 Paediatric 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.


External organisations
  • Sahlgrenska Academy
  • Sahlgrenska University Hospital
  • Skåne University Hospital
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Public Health, Global Health, Social Medicine and Epidemiology


  • Family centered care, Fatigue, Parents, Pediatric cataract
Original languageEnglish
Article number6329
Pages (from-to)1-12
Number of pages12
JournalInternational Journal of Environmental Research and Public Health
Issue number17
Publication statusPublished - 2020 Aug 31
Publication categoryResearch