Malmö University Publications
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
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Blekinge Institute of Technology, Faculty of Engineering, Department of Health, Valhallavägen 1, Karlskrona, 371 79, Sweden.ORCID iD: 0000-0002-2782-147X
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-6625-7031
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0003-1875-0443
Blekinge Institute of Technology, Faculty of Engineering, Department of Health, Valhallavägen 1, Karlskrona, 371 79, Sweden.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
Springer Nature , 2026. Vol. 25, no 1, article id 54
Keywords [en]
Home care, Palliative care, Relatives, Support, Support needs
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-82831DOI: 10.1186/s12904-026-02021-3ISI: 001698224400001PubMedID: 41689015Scopus ID: 2-s2.0-105030870008OAI: oai:DiVA.org:mau-82831DiVA, id: diva2:2041278
Available from: 2026-02-24 Created: 2026-02-24 Last updated: 2026-04-02Bibliographically approved
In thesis
1. Standing next to but not being part of: Support for relatives in general palliative care at home
Open this publication in new window or tab >>Standing next to but not being part of: Support for relatives in general palliative care at home
2026 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to explore support for relatives from healthcare professionals, before and after a patient’s death, when general palliative care is provided at home. The thesis comprises four studies, based on the perspectives of relatives and registered nurses, using both quantitative and qualitative methods. Studies I and II were register studies with data from the Swedish Register of Palliative Care. Study I analysed data from 160 relatives involved in general palliative care at home across Sweden, using descriptive statistics to describe support from healthcare professionals. Study II analysed open-ended responses from 83 of these relatives through thematic analysis to describe their suggestions for improving support. Study III analysed data from four focus groups with 18 registered nurses, using content analysis to explore their experiences of supporting relatives when general palliative care is provided at home. Study IV analysed data from 14 interviews with relatives involved in general palliative care at home, applying phenomenological hermeneutical analysis to elucidate their experiences of support from healthcare professionals.

The findings show that even if relatives receive some support (I–IV), it is often perceived as insufficient (I–II, IV), and that they tend to be more satisfied with support before the patient’s death than after (I–II, IV). The findings also indicate possible differences in whether support is offered, depending on the type of relative (I, III–IV). Overall, relatives need structured support through shared responsibility, continuous and timely information and communication, and access to competent and familiar healthcare professionals (II–IV). They also need to be seen as persons with their own needs beyond those of the patient and to receive tailored support (II, IV), including emotional support to process grief and experiences (III–IV), both before and after the patient’s death. Furthermore, the findings show that relatives and healthcare professionals may share fundamental needs, such as a need for structure and shared responsibility, and a need to know and be in control of the situation (II–IV). Healthcare professionals’ ability to support relatives may therefore partly depend on their own access to support (III).

This thesis contributes to increased knowledge on support for relatives in general palliative care at home by providing insights from two perspectives: relatives as recipients of support and registered nurses as providers of support, before and after a patient’s death. In conclusion, to meet relatives’ personal and changing support needs, healthcare professionals must adopt a dual focus on both patients and relatives, along with a structured and person-centred approach. Although some support is provided, it is often unstructured, insufficiently personalised, and unequal, both before and after the patient’s death. These shortcomings, resulting from limited knowledge and competence among healthcare professionals and organisational constraints regarding time and resources, risk leaving relatives feeling overwhelmed, unsafe, and alone, standing next to but not being part of palliative care when provided at home.

Place, publisher, year, edition, pages
Malmö University Press, 2026. p. 94
Series
Malmö University Health and Society Dissertations, ISSN 1653-5383, E-ISSN 2004-9277 ; 2026:05
National Category
Nursing Medical and Health Sciences
Identifiers
urn:nbn:se:mau:diva-83505 (URN)10.24834/isbn.9789178776986 (DOI)978-91-7877-697-9 (ISBN)978-91-7877-698-6 (ISBN)
Public defence
2026-05-07, Allmänna sjukhuset, HS aula, Jan Waldenströms gata 25, Malmö, 10:00
Opponent
Supervisors
Available from: 2026-04-02 Created: 2026-04-02 Last updated: 2026-04-02Bibliographically approved

Open Access in DiVA

fulltext(1114 kB)30 downloads
File information
File name FULLTEXT01.pdfFile size 1114 kBChecksum SHA-512
1f7661a0ebb8063778ec61534d7c2a0fc66ebbe37223b5e0648acb4e3ff706c875b9824abd99bd964438e186075f517cffc32ec1038cba1a367e0ff5d6be9813
Type fulltextMimetype application/pdf

Other links

Publisher's full textPubMedScopus

Authority records

Mikaelsson Midlöv, ElinaSterner, TheresePorter, SusannSjögren Forss, Katarina

Search in DiVA

By author/editor
Mikaelsson Midlöv, ElinaSterner, TheresePorter, SusannLindberg, TereseSjögren Forss, Katarina
By organisation
Department of Care Science (VV)
In the same journal
BMC Palliative Care
Nursing

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
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 3363 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