Evidence map›Paper›PMID 38942094›Full record

ArticleJournal of pain and symptom management2024

The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.

Jackelyn Y Boyden, Mary Ersek, Kimberley A Widger, Judy A Shea, Chris Feudtner

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In one paragraph

Article in Journal of pain and symptom management, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–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

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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

2 citing papers in PubMed.

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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

5 authors.

Jackelyn Y BoydenDepartment of Family and Community Health (J.Y.B.), Department of Biobehavioral Health Sciences (M.E.), School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Pediatrics (J.Y.B., C.F.), Children's Hospital of Philadelphia; Philadelphia, Pennsylvania, USA. Electronic address: jboyden@upenn.edu.
Mary ErsekDepartment of Family and Community Health (J.Y.B.), Department of Biobehavioral Health Sciences (M.E.), School of Nursing, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Corporal Michael J. Crescenz Department of Veterans Affairs Medical Center (M.E.), Philadelphia, Pennsylvania, USA.
Kimberley A WidgerLawrence Bloomberg Faculty of Nursing (K.A.W.), University of Toronto; Toronto, Ontario, Canada; Pediatric Advanced Care Team, Hospital for Sick Children (K.A.W.), Toronto, Ontario, Canada.
Judy A SheaDepartment of Medicine (J.A.S.), Department of Pediatrics (C.F.), Perelman School of Medicine, University of Pennsylvania; Philadelphia, Pennsylvania, USA.
Chris FeudtnerDepartment of Pediatrics (J.Y.B., C.F.), Children's Hospital of Philadelphia; Philadelphia, Pennsylvania, USA; Department of Medicine (J.A.S.), Department of Pediatrics (C.F.), Perelman School of Medicine, University of Pennsylvania; Philadelphia, Pennsylvania, USA.

Funding

Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) ProjectF32NR019517 · NINR · CHILDREN'S HOSP OF PHILADELPHIA · PI BOYDEN, JACKELYN Y · 2020 to 2021
$138k
NINR NIH HHS F32 NR019517
6 · The paper itself

Abstract

contextHome-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities.

objectivesTo evaluate the psychometric properties of the previously developed 23-item home-based PPHC EXPERIENCE Measure for use with families of children receiving home-based PPHC in the United States.

methodsParticipants included families recruited from the Children's Hospital of Philadelphia, Courageous Parents Network, and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services. Participants completed the EXPERIENCE Measure at baseline and again at retest. We evaluated the factor structure of the EXPERIENCE Measure, as well as evidence regarding score reliability and validity.

resultsEighty-two family participants completed the baseline and 53 completed the retest questionnaire from 15 states across the U.S. We found evidence for the score reliability and validity of a four-domain EXPERIENCE measure.

conclusionThe EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.

Indexed as

CaregiversHome Care ServicesHospice CarePalliative CarePsychometricsAdolescentAdultChildChild, PreschoolFamilyFemaleHumansInfantMaleReproducibility of ResultsSurveys and QuestionnairesCare experiencesHome-based pediatric palliative and hospice careInstrument developmentPsychometric evaluation

Identifiers

PMID38942094
PMCPMC11416331

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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.