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
Support given by health professionals before and after a patient's death to relatives involved in general palliative care at home in Sweden: Findings from the Swedish Register of Palliative Care
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Blekinge Inst Technol, Fac Engn, Dept Hlth, Karlskrona, Sweden.ORCID iD: 0000-0002-2782-147X
Blekinge Inst Technol, Fac Engn, Dept Hlth, Karlskrona, Sweden.
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-6625-7031
Blekinge Inst Technol, Fac Engn, Dept Hlth, Karlskrona, Sweden.ORCID iD: 0000-0002-5731-2799
2024 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, no 5, p. 1142-1149Article in journal (Refereed) Published
Abstract [en]

Objectives: General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient's death to relatives involved in general PC at home.

Methods: A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys.

Results: The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient's death. The findings also indicated differences in whether relatives received some support before and after a patient's death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying.

Significance of results: There is potential for improvements regarding support for relatives, especially after a patient's death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient's death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient's death when general PC is provided at home.

Place, publisher, year, edition, pages
Cambridge University Press, 2024. Vol. 22, no 5, p. 1142-1149
Keywords [en]
Home care, palliative care, relatives, support
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-63090DOI: 10.1017/S1478951523001323ISI: 001071522700001PubMedID: 37746762Scopus ID: 2-s2.0-85173773758OAI: oai:DiVA.org:mau-63090DiVA, id: diva2:1804134
Available from: 2023-10-11 Created: 2023-10-11 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

No full text in DiVA

Other links

Publisher's full textPubMedScopus

Authority records

Mikaelsson Midlöv, ElinaSterner, Therese

Search in DiVA

By author/editor
Mikaelsson Midlöv, ElinaSterner, ThereseSkär, Lisa
By organisation
Department of Care Science (VV)
In the same journal
Palliative & Supportive Care
Nursing

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 281 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