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Original research
Living with heart failure: perspectives of ethnic minority families
  1. Mahdi Shamali1,
  2. Birte Østergaard1 and
  3. Hanne Konradsen2,3
  1. 1Department of Clinical Research, University of Southern Denmark, Odense, Denmark
  2. 2Department of Gastroenterology, Herlev and Gentofte University Hospital, University of Copenhagen, Copenhagen, Denmark
  3. 3NVS, Karolinska Institute, Stockholm, Sweden
  1. Correspondence to Mr Mahdi Shamali; gezaltoshmal{at}yahoo.com

Abstract

Background The family perspective on heart failure (HF) has an important role in patients’ self-care patterns, adjustment to the disease and quality of life. Little is known about families’ experiences of living with HF, particularly in ethnic minority families. This study describes the experiences of Iranian families living with HF as an ethnic minority family in Denmark.

Methods In this descriptive qualitative study, we conducted eight face-to-face joint family interviews of Iranian patients with HF and their family members living in Denmark. We used content analysis with an inductive approach for data analysis.

Results We identified three categories: family daily life, process of independence and family relationships. Families were faced with physical restrictions, emotional distress and social limitations in their daily lives that threatened the patients’ independence. Different strategies were used to promote independence. One strategy was normalisation and avoiding the sick role; another strategy was accepting and adjusting themselves to challenges and limitations. The independence process itself had an impact on family relationships. Adjusting well to the new situation strengthened the relationship, while having problems in adjustment strained the relationship within the family.

Conclusions This study highlights the process of independence as perceived by families living with HF. It is crucial to both families and healthcare professionals to maintain a balance between providing adequate support and ensuring independence when dealing with patients with HF. Understanding patients’ stories and their needs seems to be helpful in gaining this balance.

  • heart failure
  • qualitative
  • family perspective
  • minority group
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors MS performed the interviews, collected the data and drafted the initial manuscript. All authors were involved in the study concept and design, data analysis and interpretation of the data; critically revised the manuscript for important intellectual content; and gave their final approval of the version to be published.

  • Funding This work was funded by the Novo Nordisk Foundation under grant Number NNF17OC0027968.

  • Competing interests None declared.

  • Patient consent for publication Obtained.

  • Ethics approval The study has been approved by the University of Southern Denmark, Odense, Denmark (journal number 18/24435). Formal ethical permission was not required according to the Scientific Ethics Committees for the Region of Southern Denmark (number: 20182000–73).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information. All data relevant to the study are included in the article.