Evidence map›Paper›PMID 41689015›Full record

ArticleBMC palliative care2026

Standing next to but not being part of: relatives' experiences of support from healthcare professionals when general palliative care is provided at home.

Elina Mikaelsson Midlöv, Therese Sterner, Susann Porter, Terese Lindberg, Katarina Sjögren Forss

Abstract read
In one paragraph

Article in BMC palliative care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

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

1 citing paper in PubMed.

  1. Article
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.

Elina Mikaelsson MidlövBlekinge Institute of Technology, Faculty of Engineering, Department of Health, Valhallavägen 1, Karlskrona, 371 79, Sweden. elina.mikaelsson.midlov@bth.se.ORCID http://orcid.org/0000-0002-2782-147X
Therese SternerFaculty of Health and Society, Department of Care Science, Malmö University, Malmö, Sweden.ORCID http://orcid.org/0000-0002-6625-7031
Susann PorterFaculty of Health and Society, Department of Care Science, Malmö University, Malmö, Sweden.ORCID http://orcid.org/0000-0003-1875-0443
Terese LindbergBlekinge Institute of Technology, Faculty of Engineering, Department of Health, Valhallavägen 1, Karlskrona, 371 79, Sweden.ORCID http://orcid.org/0000-0003-3166-0274
Katarina Sjögren ForssFaculty of Health and Society, Department of Care Science, Malmö University, Malmö, Sweden.ORCID http://orcid.org/0000-0002-3594-3944

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundRelatives play a crucial role when palliative care is provided at home. More advanced care at home places higher demands on relatives, taking great responsibility, facing challenges, and often lacking adequate knowledge and skills to provide care. Therefore, relatives need support from healthcare professionals, yet do not receive the needed support. This study aimed to elucidate relatives' experiences of support from healthcare professionals before and after a patient's death when general palliative care is provided at home.

methodsA phenomenological hermeneutical method was used. The inclusion criteria were relatives of people who had died, involved in general palliative care at home. The sample consisted of 14 adult relatives involved in general palliative care at home between one week and 12 months. Data were collected through individual interviews between January and May 2025.

resultsRelatives needed to be seen as they felt left out; they felt an overwhelming responsibility; they needed to feel safe at home through guidance from and access to healthcare professionals; they felt the need to know what was happening and what to expect; and they needed help in processing the grief both before and after the patient's death. These themes formed the main theme: Standing next to but not being part of.

conclusionsThe findings of this study showed a lack of support for relatives before and after the patient's death but offer insights into what support relatives need from HCPs when general PC is provided at home. Relatives need to feel seen, informed and prepared, to feel safe when care is provided at home, and not feel overwhelmed by the responsibility of the situation. As research continuously reveals that relatives have unmet support needs, this highlights the need for tailored interventions and the targeting of available support actions for improved support. Since relatives play a crucial role in palliative care at home, continued work with education and training for relatives should be prioritised to support them in feeling prepared, obtaining necessary caregiving knowledge and skills, enabling them to cope with the situation at home.

Indexed as

FamilyHealth PersonnelHome Care ServicesPalliative CareAdultAgedAged, 80 and overFamily SupportFemaleHumansMaleMiddle AgedQualitative ResearchSocial SupportHome carePalliative careRelativesSupportSupport needs

Identifiers

PMID41689015
PMCPMC12930732

What OpenQuestion holds

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LicenceCC BY
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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.