ArticleBMJ supportive & palliative care2022
Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.
Article in BMJ supportive & palliative care, 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 20 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
20 citing papers in PubMed, 25 citations in OpenAlex.
- Advance Care Planning for Children With Rare Diseases: A Pilot RCT.Pediatrics · 2024Trial
- Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations.The American journal of hospice & palliative care · 2026Article
- An Australian standard of care for Niemann-Pick disease type C.Internal medicine journal · 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
- "The American journal of hospice & palliative care · 2025Article
- What are the greatest opportunities for innovation to improve access to and quality of palliative care services to children? A qualitative interview study.BMC palliative care · 2025Article
- Review
- 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
- Article
- Review
- Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study.Palliative care and social practice · 2023Article
- Needs of informal caregivers of people with a rare disease: a rapid review of the literature.BMJ open · 2022Review
- Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review.Children (Basel, Switzerland) · 2022Review
- Article
- Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions.Children (Basel, Switzerland) · 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
- Towards a Comprehensive Strategy for the Management of Rare Diseases in Slovenia: Outlining an IT-Enabled Ecosystemic Approach.International journal of environmental research and public health · 2021Article
- The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups.Palliative care and social practice · 2020Article
- Issues Related to Children-Faced by Armed Forces Families When Caring for Patients in Palliative Care - A Qualitative Study.Indian journal of palliative careArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 3 institutions in 2 countries.
Funding
Abstract
objectiveTo develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)).
methodsFACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2;
resultsParents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that
conclusionsFACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.
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.