Evidence map›Paper›PMID 42176215›Full record

ArticleJournal of patient-reported outcomes2026

Quality of life and research benefit and burden in siblings of children with life-limiting conditions: a prospective multicentre cohort study.

Anne-Kathrin Gerber, Karin Zimmermann, Michèle Widler, Michael Simon, Nicolas von der Weid, Stefan Mitterer, Eva Bergsträsser

Abstract readMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient-reported outcomes, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
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

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

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

7 authors.

Anne-Kathrin GerberInstitute of Nursing Science, Department of Public Health, University of Basel, Bernoullistrasse 28, Basel, 4056, Switzerland.ORCID http://orcid.org/0000-0001-9334-7457
Karin ZimmermannInstitute of Nursing Science, Department of Public Health, University of Basel, Bernoullistrasse 28, Basel, 4056, Switzerland. karin.zimmermann@kispi.uzh.ch.ORCID http://orcid.org/0000-0002-6718-265X
Michèle WidlerPaediatric Palliative Care, University Children's Hospital beider Basel (UKBB), Spitalsstrasse 33, Basel, 4056, Switzerland.
Michael SimonInstitute of Nursing Science, Department of Public Health, University of Basel, Bernoullistrasse 28, Basel, 4056, Switzerland.ORCID http://orcid.org/0000-0003-2349-7219
Nicolas von der WeidDivision of Haematology-Oncology, University Children's Hospital beider Basel (UKBB), Spitalsstrasse 33, Basel, 4056, Switzerland.ORCID http://orcid.org/0000-0002-9555-3817
Stefan MittererInstitute of Nursing Science, Department of Public Health, University of Basel, Bernoullistrasse 28, Basel, 4056, Switzerland.ORCID http://orcid.org/0000-0002-6102-8897
Eva BergsträsserPaediatric Palliative Care and Children's Research Center, University Children's Hospital Zürich, Lenggstrasse 30, Zürich, 8008, Switzerland.ORCID http://orcid.org/0000-0002-0340-1868

Funding

Stiftelsen Kristian Gerhard Jebsen Stiftelsen Kristian Gerhard JebsenSwiss Academy of Medical Sciences PC25/18Swiss Research Network of Clinical Pediatric Hubs Swiss Research Network of Clinical Pediatric HubsSwiss Society of Pediatrics Swiss Society of PediatricsUBS Optimus Foundation UBS Optimus Foundation
6 · The paper itself

Abstract

backgroundSiblings of children suffering from a life-limiting condition (LLC) may experience impaired psychological and social well-being and strained family functioning. Due in part to concerns about research burden, evidence on siblings' quality of life (QoL) remains limited. This study aimed to examine longitudinal changes in QoL among well siblings of children with a (LLC) during the palliative care and bereavement phases, and to assess their perceived benefits and burdens of research participation. METHODOLOGY: This prospective multicentre cohort study was conducted within the SPhAERA project. Data were collected using paper-and-pencil questionnaires at predefined care and bereavement time points. QoL was assessed using the KIDSCREEN-52 instrument, and perceived research benefit and burden were measured using eight self-developed items. Analyses were primarily descriptive. Siblings aged 8-18 years were recruited from three Swiss University Children's hospitals between November 2019 and May 2022.

resultsTwelve siblings participated. QoL scores were above the Swiss normative values across all domains except psychological well-being. QoL varied over time in all participants. The median research burden score was 1.4 (scale from 0 to 10), and no consistent benefits or burdens were reported.

conclusionsCare for children with a (LLC) should include screening to identify siblings with low QoL and increased support needs. Further research is required to examine factors influencing QoL and its fluctuations across the palliative and bereavement phases, in order to inform targeted support strategies.

Indexed as

Palliative CareQuality of LifeSiblingsAdolescentBereavementChildCost of IllnessFemaleHumansMaleProspective StudiesSurveys and QuestionnairesSwitzerlandPalliative carePediatricsQuality of lifeResearch burdenSiblings

Identifiers

PMID42176215
PMCPMC13385311

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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 OpenQuestion graph.