ArticleJournal of child health care : for professionals working with children in the hospital and community2024
'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition.
Article in Journal of child health care : for professionals working with children in the hospital and community, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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Who cites it
3 citing papers in PubMed.
- Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care.Children (Basel, Switzerland) · 2025Article
- Understanding what matters to young people with life-limiting and life-threatening conditions: a qualitative study to inform the development of a young person end-of-life capability measure.Social science & medicine (1982) · 2025Article
- Changing bodies: A scoping review and thematic analysis of family experience during serious childhood illness.Journal of child health care : for professionals working with children in the hospital and community · 2024Article
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Authors and funding
3 authors.
Funding
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Abstract
Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores the prevalent and all-consuming experiences of parents caring for their children. A qualitative descriptive study design was used. Twenty-three parents (both mothers and fathers) were interviewed. Transcribed interview data were analyzed using thematic analysis. 'Managing an unexpected life' was the central concept when parents recounted ongoing efforts to address the emotional and practical effects of their child's condition on their life and that of their family. Analysis revealed three main distinct but interrelated themes within the concept of 'Managing an unexpected life' helping us enhance our understanding of parents' experiences: 'Striving for normality', 'Becoming the expert' and 'Fighting for your child'. Findings suggest that the central concept of 'Managing an unexpected life' appeared to be in keeping with a caregiver's career. Findings likewise suggest the need for improved and focused support and services to enhance parents' career caregiving.
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