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Supporting relatives when general palliative care is provided at home– a focus group study based on nurses’ experiences
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: 0000-0003-1875-0443
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: 0000-0002-3594-3944
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2025 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 24, no 1, article id 108Article in journal (Refereed) Published
Abstract [en]

Background: Relative's efforts are essential when palliative care is provided at home and support from healthcare professionals is needed. Despite this, since the support provided varies, relatives may have unmet support needs. Many people receive general palliative care at home rather than specialised care, and nurses play a significant role in supporting relatives. This study aimed to explore registered nurses' experiences of supporting relatives before and after a patient's death when general palliative care is provided at home.

Methods: This study used a qualitative explorative design. Data were collected through focus group interviews with 18 registered nurses in home care in Sweden and were analysed using content analysis. The Consolidated Criteria for Reporting Qualitative Research checklist was used for explicit reporting.

Results: The findings are presented in four categories with subcategories: receiving support to provide support, continuously providing understandable information, balancing different needs and building relationships facilitates safety and identifying needs.

Conclusions: Even if registered nurses support relatives to some extent, they rarely reflect on the support they provide and lack structure in providing support both before and after the patient's death. The findings showed inadequacies in support after the patient's death, which is also emphasised in previous studies. The findings also showed deficiencies in routines, local guidelines and checklists as well as in training and education on how to support relatives when palliative care is provided at home, thereby risking that relatives' needs remain unmet. This highlights the need for creating routines and developing detailed local guidelines and checklists on providing support to relatives both before and after the patient's death.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2025. Vol. 24, no 1, article id 108
Keywords [en]
Home care, Nurses, Palliative care, Relatives, Support
National Category
Nursing
Research subject
Care science
Identifiers
URN: urn:nbn:se:mau:diva-75570DOI: 10.1186/s12904-025-01744-zISI: 001472115100003PubMedID: 40259273Scopus ID: 2-s2.0-105003140049OAI: oai:DiVA.org:mau-75570DiVA, id: diva2:1954266
Funder
Blekinge Institute of TechnologyAvailable from: 2025-04-24 Created: 2025-04-24 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

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Mikaelsson Midlöv, ElinaPorter, SusannSterner, ThereseSjögren Forss, Katarina

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Mikaelsson Midlöv, ElinaPorter, SusannSterner, ThereseSjögren Forss, KatarinaLindberg, Terese
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