Evidence map›Paper›PMID 32745574›Full record

ArticleJournal of pain and symptom management2021

What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

Jackelyn Y Boyden, Mary Ersek, Janet A Deatrick, Kimberley Widger, Gwenn LaRagione, Blyth Lord, Chris Feudtner

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Article in Journal of pain and symptom management, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

23 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Jackelyn Y BoydenSchool of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA. Electronic address: jboyden@upenn.edu.
Mary ErsekSchool of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania, USA; University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
Janet A DeatrickSchool of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Kimberley WidgerLawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Ontario, Canada; Hospital for Sick Children, Toronto, Ontario, Canada.
Gwenn LaRagioneChildren's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Blyth LordCourageous Parents Network, Newton, MA, USA.
Chris FeudtnerChildren's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.

Funding

Home-based Pediatric Palliative Care Outcomes StudyF31NR017554 · NINR · UNIVERSITY OF PENNSYLVANIA · PI BOYDEN, JACKELYN Y · 2018 to 2020
$98k
NINR NIH HHS F31 NR017554
6 · The paper itself

Abstract

contextChildren with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most.

objectivesTo explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.

methodsTwenty domains of high-value PPHC@Home, derived from the National Consensus Project's Guidelines for Quality Palliative Care, the literature, and a stakeholder panel, were evaluated. Using a discrete choice experiment, parents provided their ratings of the most and least valued PPHC@Home domains. We also explored potential differences in how subgroups of parents rated the domains.

resultsForty-seven parents participated. Overall, highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. Lowest-rated domains included Spiritual and religious aspects of care and Cultural aspects of care. In exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children (P = 0.02). Furthermore, bereaved parents rated the Caregiversupportat the end of life domain significantly higher than parents who were currently caring for their child (P = 0.04). No other significant differences in domain ratings were observed.

conclusionKnowing what parents value most about PPHC@Home provides the foundation for further exploration and conversation about priority areas for resource allocation and care improvement efforts.

Indexed as

Hospice and Palliative Care NursingHospice CareHospicesChildHumansPalliative CareParentsdiscrete choice experimenthome-based carepediatric hospice carePediatric palliative care

Identifiers

PMID32745574
PMCPMC9747513

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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.