ArticlePalliative care and social practice2020
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups.
Article in Palliative care and social practice, 2020. 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 17 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
17 citing papers in PubMed, 28 citations in OpenAlex.
- 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
- Help us make a better flow in everyday life - family needs in home-based pediatric palliative care: a qualitative study.BMC palliative care · 2025Article
- "I'm not a physician, but i'm the expert for my child" experiences of parents caring for their child with a life-limiting condition in an inpatient setting - A qualitative study.Palliative & supportive care · 2025Article
- 'A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK.Journal of child health care : for professionals working with children in the hospital and community · 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
- Parents providing palliative care for children with cancer.Ecancermedicalscience · 2024Article
- Using the Carers' Alert Thermometer tool to identify needs and support family caregivers of people with motor neurone disease: moving beyond needs assessments.Palliative care and social practice · 2024Article
- End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?European journal of pediatrics · 2023Observational
- Support Needs of Parents of Adolescents Abusing Substances in Selected Hospitals in Limpopo Province.Children (Basel, Switzerland) · 2023Article
- Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective.BMC palliative care · 2022Article
- Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases.Children (Basel, Switzerland) · 2022Article
- "It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care.Children (Basel, Switzerland) · 2022Article
- Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms.Journal of pain and symptom management · 2022Article
- Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians.Children (Basel, Switzerland) · 2022Article
- Building capability in paediatric palliative care and enhancing education through the voice of parents: the Quality of Care Collaborative Australia.Palliative care and social practice · 2022Article
- The Childhood Cancer Centre Is Coming Home: Experiences of Hospital-Based Home Care.International journal of environmental research and public health · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 5 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundParents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being.
objectivesEvaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested.
methodsA non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study.
resultsTwo-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve.
conclusionUsing the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.