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Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Department of Health, Faculty of Engineering Blekinge Institute of Technology Karlskrona Sweden.ORCID iD: 0000-0002-2782-147X
Department of Health, Faculty of Engineering Blekinge Institute of Technology Karlskrona Sweden.ORCID iD: 0000-0003-3166-0274
Faculty of Health Science Kristianstad University Kristianstad Sweden.ORCID iD: 0000-0002-5731-2799
2024 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 38, no 2, p. 358-367Article in journal (Refereed) Published
Abstract [en]

Introduction: The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home.

Methods: This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis.

Results: The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support.

Conclusions: It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024. Vol. 38, no 2, p. 358-367
National Category
Nursing
Research subject
Care science
Identifiers
URN: urn:nbn:se:mau:diva-65610DOI: 10.1111/scs.13239ISI: 001147115800001PubMedID: 38258965Scopus ID: 2-s2.0-85183052281OAI: oai:DiVA.org:mau-65610DiVA, id: diva2:1833521
Funder
Blekinge Institute of TechnologyAvailable from: 2024-02-01 Created: 2024-02-01 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, Elina

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