{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T08:08:42Z","timestamp":1789546122474,"version":"build-2803163510"},"reference-count":76,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2024,1,1]],"date-time":"2024-01-01T00:00:00Z","timestamp":1704067200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat\ufffdCare"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>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\u2019s perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective:<\/jats:title>\n                    <jats:p>This study seeks to address gaps in existing knowledge, especially the limited inclusion of children\u2019s 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>The study has a qualitative, hermeneutic phenomenological design inspired by van Manen\u2019s phenomenology of practice.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Twelve children with cancer or genetic conditions participated. Due to the children\u2019s varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children\u2019s perspectives, including interviews, interactions, descriptions of the children\u2019s non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>The findings showed that the children\u2019s 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>Professionals across various levels within pediatric palliative care should acknowledge children\u2019s desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children\u2019s 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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/26323524241301431","type":"journal-article","created":{"date-parts":[[2024,11,30]],"date-time":"2024-11-30T00:54:12Z","timestamp":1732928052000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":8,"title":["Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions\u2014a qualitative study"],"prefix":"10.1177","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-6688-8421","authenticated-orcid":false,"given":"Trine Brun","family":"Kittelsen","sequence":"first","affiliation":[{"name":"Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo Metropolitan University, Pilestredet 32, 0167 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