TY - JOUR

T1 - Living with heart failure

T2 - perspectives of ethnic minority families

AU - Shamali, Mahdi

AU - Østergaard, Birte

AU - Konradsen, Hanne

N1 - © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

PY - 2020

Y1 - 2020

N2 - 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.

AB - 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.

KW - Activities of Daily Living

KW - Adaptation, Psychological

KW - Adult

KW - Aged

KW - Cost of Illness

KW - Cultural Characteristics

KW - Denmark/epidemiology

KW - Ethnic Groups/psychology

KW - Family Relations

KW - Female

KW - Health Knowledge, Attitudes, Practice/ethnology

KW - Heart Failure/diagnosis

KW - Humans

KW - Illness Behavior

KW - Interviews as Topic

KW - Iran/ethnology

KW - Male

KW - Middle Aged

KW - Minority Groups/psychology

KW - Minority Health/ethnology

KW - Qualitative Research

U2 - 10.1136/openhrt-2020-001289

DO - 10.1136/openhrt-2020-001289

M3 - Journal article

C2 - 32591405

VL - 7

JO - Open Heart

JF - Open Heart

SN - 2398-595X

IS - 1

M1 - e001289

ER -