ArticleBMC palliative care2024
It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study.
Article in BMC palliative care, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Experiences of Family Caregivers of Children Aged 1-23 Months Who Have Received Pediatric Palliative Care: A Systematic Review With Qualitative Metasynthesis.Journal of nursing scholarship : an official publication of Sigma Theta Tau International Honor Society of Nursing · 2025Pooled it
- Survival in children and adolescents with life-limiting conditions-a nationwide cohort study.European journal of epidemiology · 2026Article
- Exploring parents' perspectives on health technology to support communication in home-based pediatric palliative care: a qualitative study.BMC palliative care · 2026Article
- Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study.Children (Basel, Switzerland) · 2026Article
- Tailoring support for parents of children in palliative care: Feasibility of the carer support needs assessment tool intervention paediatric in a Norwegian context.Palliative care and social practice · 2026Article
- Health Technologies and Infrastructures for Supporting Home-Based Pediatric Palliative Care: Scoping Review.Journal of medical Internet research · 2025Article
- Coordinating children's palliative care in municipalities: a qualitative study.BMC palliative care · 2025Article
- Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care.Children (Basel, Switzerland) · 2025Article
- Help us make a better flow in everyday life - family needs in home-based pediatric palliative care: a qualitative study.BMC palliative care · 2025Article
- Correlation of Social Support with Care Burden and Post-Traumatic Growth in Mothers of Children with Leukemia.Journal of caring sciences · 2025Review
- Important factors in municipality-based pediatric palliation from healthcare professionals' perspective: A qualitative study.Palliative care and social practice · 2025Article
- Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study.Palliative care and social practice · 2024Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition.
methodsThe study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data.
resultsThe findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system.
conclusionsThe complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.