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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, Valhallavägen 1, Karlskrona, 371 79, Sweden; Faculty of Health and Society, Department of Care Science, Malmö University, Malmö, 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
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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/s12904-026-02021-3PubMedID: 41689015OAI: oai:DiVA.org:mau-82831DiVA, id: diva2:2041278
Available from: 2026-02-24 Created: 2026-02-24 Last updated: 2026-02-24Bibliographically approved

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Sterner, TheresePorter, SusannSjögren Forss, Katarina

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Midlöv, Elina MikaelssonSterner, TheresePorter, SusannLindberg, TereseSjögren Forss, Katarina
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2829303132333431 of 238
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