ArticlePalliative care and social practice2024
Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study.
Article in Palliative care and social practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Communication, everyday life and technology from the perspectives of children with life-limiting or life-threatening conditions: a qualitative study.BMJ paediatrics open · 2026Article
- Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning Toolkit.Children (Basel, Switzerland) · 2026Article
- Pediatric advance care planning: a mixed-methods evaluation of documentation and sharing in current practice.BMC palliative care · 2026Article
- Health Technologies and Infrastructures for Supporting Home-Based Pediatric Palliative Care: Scoping Review.Journal of medical Internet research · 2025Article
- Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care.Children (Basel, Switzerland) · 2025Article
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Authors and funding
5 authors.
Funding
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Abstract
Background: The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children's perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally. Objective: This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions. Design: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. Methods: Twelve children with cancer or genetic conditions participated. Due to the children's varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children's perspectives, including interviews, interactions, descriptions of the children's non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis. Results: The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items. Conclusion: Professionals across various levels within pediatric palliative care should acknowledge children's desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children's agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child.
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