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Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention

Published online by Cambridge University Press:  03 May 2017

Anette Alvariza ,
Kristofer Årestedt ,
Kurt Boman  and
Margareta Brännström
Anette Alvariza*
Affiliation:
Department of Health Care Sciences and Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden Capio Palliative Care, Dalen Hospital, Stockholm, Sweden
Kristofer Årestedt
Affiliation:
Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden Department of Research, Kalmar County Hospital, Kalmar, Sweden
Kurt Boman
Affiliation:
Research Unit Skellefteå, Department of Medicine, Umeå University, Sweden Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden The Arctic Research Centre, Umeå University, Umeå, Sweden
Margareta Brännström
Affiliation:
The Arctic Research Centre, Umeå University, Umeå, Sweden Department of Nursing, Campus Skellefteå, Umeå University, Sweden
*
Address correspondence and reprint requests to: Anette Alvariza, Ersta Sköndal University College/Palliative Research Centre/Department of Health Care Sciences, Box 11189, 10061 Stockholm, Sweden. E-mail: anette.alvariza@esh.se.
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Abstract

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.

Keywords

Family membersHeart failureInterventionPalliative careQualitative
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 3 , June 2018 , pp. 278 - 285
Copyright
Copyright © Cambridge University Press 2017 

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