Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Standing next to but not being part of: relatives' experiences of support from healthcare professionals when general palliative care is provided at home
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.ORCID iD: 0000-0002-2782-147X
Malmö University.
Malmö University.
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.ORCID iD: 0000-0003-3166-0274
Show others and affiliations
2026 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 25, no 1, article id 54Article in journal (Refereed) Published
Abstract [en]

Background: Relatives 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.

Methods: A 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.

Results: Relatives 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.

Conclusions: The 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. 

Place, publisher, year, edition, pages
BioMed Central (BMC), 2026. Vol. 25, no 1, article id 54
Keywords [en]
Home care, Palliative care, Relatives, Support, Support needs
National Category
Nursing Palliative Medicine and Palliative Care
Identifiers
URN: urn:nbn:se:bth-29218DOI: 10.1186/s12904-026-02021-3ISI: 001698224400001Scopus ID: 2-s2.0-105030870008OAI: oai:DiVA.org:bth-29218DiVA, id: diva2:2043101
Available from: 2026-03-03 Created: 2026-03-03 Last updated: 2026-03-09Bibliographically approved

Open Access in DiVA

fulltext(1114 kB)35 downloads
File information
File name FULLTEXT01.pdfFile size 1114 kBChecksum SHA-512
1f7661a0ebb8063778ec61534d7c2a0fc66ebbe37223b5e0648acb4e3ff706c875b9824abd99bd964438e186075f517cffc32ec1038cba1a367e0ff5d6be9813
Type fulltextMimetype application/pdf

Other links

Publisher's full textScopus

Authority records

Mikaelsson Midlöv, ElinaLindberg, Terese

Search in DiVA

By author/editor
Mikaelsson Midlöv, ElinaLindberg, Terese
By organisation
Department of Health
In the same journal
BMC Palliative Care
NursingPalliative Medicine and Palliative Care

Search outside of DiVA

GoogleGoogle Scholar
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 4585 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf