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Family members' experiences of integrated palliative advanced home and heart failure care: a qualitative study of the PREFER intervention
Ersta Sköndal Bräcke University College, Sweden;Dalen Hospital, Sweden.
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital, Sweden.ORCID iD: 0000-0002-0961-5250
Umeå University, Sweden.
Umeå University, Sweden.
2018 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 3, p. 278-285Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

Place, publisher, year, edition, pages
Cambridge University Press, 2018. Vol. 16, no 3, p. 278-285
Keywords [en]
Family members, Heart failure, Intervention, Palliative care, Qualitative
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
URN: urn:nbn:se:lnu:diva-74241DOI: 10.1017/S1478951517000256ISI: 000435649400005PubMedID: 28464977Scopus ID: 2-s2.0-85018388784OAI: oai:DiVA.org:lnu-74241DiVA, id: diva2:1205053
Available from: 2018-05-09 Created: 2018-05-09 Last updated: 2019-11-13Bibliographically approved

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Årestedt, Kristofer

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