Evidence map›Paper›PMID 37950793›Full record

ArticleEuropean journal of pediatrics2024

Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

Marije A Brouwer, Barbara C Bas-Douw, Carlo J W Leget, Marijanne Engel, Saskia C C M Teunissen, Marijke C Kars

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in European journal of pediatrics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
0.9field-weighted citation impact, top 24% of its field
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

5 citing papers in PubMed, 3 citations in OpenAlex.

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  5. Review
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

6 authors at 2 institutions in 1 country.

Marije A BrouwerJulius Center for Health Sciences and Primary Care, Center of Expertise in Palliative Care Utrecht, University Medical Center Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0002-5464-355X
Barbara C Bas-DouwJulius Center for Health Sciences and Primary Care, Center of Expertise in Palliative Care Utrecht, University Medical Center Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, The Netherlands.
Carlo J W LegetDepartment of Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0002-6647-8141
Marijanne EngelJulius Center for Health Sciences and Primary Care, Center of Expertise in Palliative Care Utrecht, University Medical Center Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, The Netherlands. m.engel-5@umcutrecht.nl.ORCID http://orcid.org/0000-0003-3625-7839
Saskia C C M TeunissenJulius Center for Health Sciences and Primary Care, Center of Expertise in Palliative Care Utrecht, University Medical Center Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0001-8827-461X
Marijke C KarsJulius Center for Health Sciences and Primary Care, Center of Expertise in Palliative Care Utrecht, University Medical Center Utrecht, Universiteitsweg 100, 3584 CG, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0001-5680-4559
Utrecht University · NLUniversity of Humanistic Studies · NL

Funding

the Netherlands Organization for Health Research and Development (ZonMw) 10050011910008
6 · The paper itself

Abstract

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding.

conclusionParents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.

Indexed as

ParentsSpiritual TherapiesChildHumansPalliative CareQualitative ResearchSpiritualityChild careFocus groupsGriefPalliative careParentsSpirituality

Identifiers

PMID37950793
PMCPMC10912281
OpenAlexW4388592834

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.