ArticleChildren (Basel, Switzerland)2022
"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care.
Article in Children (Basel, Switzerland), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04855734 (Palliative Care Needs of Children With Rare Diseases and Their Families), which is not on this map. Cited by 11 papers.
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.
Palliative Care Needs of Children With Rare Diseases and Their Families
Who cites it
11 citing papers in PubMed.
- Advance Care Planning for Children With Rare Diseases: A Pilot RCT.Pediatrics · 2024Trial
- 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
- Exploration Into Lived Experiences of Multiple Sulfatase Deficiency-Affected Individuals and Their Families.Journal of child neurology · 2025Article
- Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting.Nursing reports (Pavia, Italy) · 2025Article
- Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data.Children (Basel, Switzerland) · 2024Article
- Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review.BMC pediatrics · 2024Article
- Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity.BMC health services research · 2024Article
- 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.BMC palliative care · 2024Article
- Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis.Palliative medicine · 2024Article
- What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives.Palliative medicine · 2023Article
- Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease.Children (Basel, Switzerland) · 2022Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
aimsThis feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents.
methodsThe CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken.
resultsAll 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs.
conclusionsParents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.
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Registered trials
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