Evidence map›Paper›PMID 42380841›Full record

ArticleBMC palliative care2026

Quality domains in home-based pediatric hospice and palliative care: adolescent and young adult perspectives.

Daniel H Grossoehme, Claire A Crawford, Jhansi Chandra Ellakula, Toluwalase Ajayi, Justin N Baker, Sarah Friebert, Lisa Humphrey, JillAnn Jarrell, Rachel Thienprayoon, Pamela S Hinds

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Article in BMC palliative care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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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

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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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

10 authors.

Daniel H GrossoehmeHaslinger Family Pediatric Palliative Care Center, Akron Children's Hospital, Akron, OH, USA. dgrossoehme@akronchildrens.org.ORCID http://orcid.org/0000-0002-5654-0693
Claire A CrawfordDivision of Palliative Care, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
Jhansi Chandra EllakulaDivision of Palliative Care, Department of Anesthesia, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Toluwalase AjayiDivision of Palliative Medicine, University of California San Diego, La Jolla, CA, USA.
Justin N BakerDivision of Quality of Life and Pediatric Palliative Care, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, CA, USA.
Sarah FriebertHaslinger Family Pediatric Palliative Care Center, Akron Children's Hospital, Akron, OH, USA.
Lisa HumphreyNationwide Children's Hospital, The Ohio State University College of Medicine, Columbus, OH, USA.
JillAnn JarrellDivision of Palliative Care, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA.
Rachel ThienprayoonDepartment of Pediatrics, James M. Anderson Center for Health Systems Excellence, University of Cincinnati College of Medicine, Cincinnati Children's Hospital, Cincinnati, OH, USA.
Pamela S HindsSchool of Medicine and Health Sciences, Children's National Hospital and George Washington University, Washington, D.C, USA.

Funding

NIH HHS NIH NR R01-020608
6 · The paper itself

Abstract

backgroundCurrent United States palliative care practice guidelines are intended to cover care across all age groups. Previous research with pediatric providers and caregivers concluded that pediatric hospice and palliative care have unique attributes. Not known is how adolescent hospice and palliative care patients understand quality palliative care. The purpose of this study was to characterize and define quality of care domains as described by adolescent and young adult patients receiving home-based hospice and palliative care.

methodsSemi-structured interviews with 10-26 year-olds who received home-based hospice and/or palliative care visits in the prior three years at six diverse sites in the United States. Data were analyzed using Krippendorff's semantic content analysis methodology.

resultsThere were 32 participants (63% female) who had a median(range) age of 17.5 (10-26) years old, and 69% (n = 22) were White. The domains with the highest number of themes were Structure and Processes of Care and Compassionate Care.

conclusionsThe results address an important gap by including adolescent/young adult patients' voices regarding delivery of home-based hospice and palliative care. Clinical implications include prioritizing and making time to build trusting relationships directly with the AYA, empowering them to participate in their care to the extent appropriate and prepare for transition to adult care when needed, providing support for family members, and training for all providers in generalist spiritual care.

Indexed as

Home Care ServicesHospice CarePalliative CarePediatricsPerceptionQuality of Health CareAdolescentAdultChildFemaleHumansInterviews as TopicMaleQualitative ResearchUnited StatesYoung AdultAdolescentDelivery of health careHospicePalliative carePediatricYoung adult

Identifiers

PMID42380841
PMCPMC13587331

What Socratic holds

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Registered trials

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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 Socratic graph.