Living with heart failure: perspectives of ethnic minority families

Abstract

BackgroundThe 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.MethodsIn 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.ResultsWe 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.ConclusionsThis 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.

Factors associated with family functioning in patients with heart failure and their family members: An international cross‐sectional study

“…Patients and family members face challenges and limitations in their daily lives. For instance, physical restrictions caused by HF may limit the physical activities of the patients and family joint activities, which affects the activities' dimension of family health in patients and their family members (Kim et al, 2020;Shamali et al, 2020).…”

“…Thus, when family health decreases, it affects family functioning. That is, decreased activities, well-being, and increased ill-being result in instability in the family structure and strained family relationship in the family's daily functioning until adjustments can be implemented (Shamali et al, , 2020. support in family members .…”

“…Qualitative studies of families living with HF found that while patients' abilities to do daily tasks decreased, family members mostly play a supportive role such as doing household tasks and providing physical care and emotional support to help meet the needs of daily life (Aldred et al, 2005;Shamali et al, 2020). This demands extra efforts from family members, which can affect their functioning role, relationships, and economical status.…”

“…Although there is significant progress in treatment and prevention, the quality of life of patients with HF is still poor (Riley et al, 2016;Savarese & Lund, 2017). HF is a chronic illness with restricted life and progressive dependency (Shamali et al, 2020). The medical treatment of HF is mostly targeted on symptom management and lifestyle modifications.…”

“…Furthermore, the challenges and limitations imposed by HF may affect family health by changing family daily life, roles, responsibilities, well-being, and activities (Aldred et al, 2005), accordingly affecting family functioning. For instance, families who adjust well to these limitations had strengthened relationships, and families who failed in adjustment seem to have strained relationships (Luttik et al, 2007;Shamali et al, 2020). The few studies that have examined the relationship between family health and family functioning in patients with HF and their family members have reported that family health and family functioning are positively correlated (Paavilainen et al, 2006;.…”