Caring experiences of family caregivers of patients with heart failure: A meta-ethnographic review of the past 10 years

Abstract

Background: Living with heart failure, a debilitating disease with an unpredictable course, requires ongoing adaptation and management not only from patients but also from their families. Family caregivers have been known to be key facilitators of self-management of heart failure. An integrative understanding of the experiences of family caregivers will provide essential information for improving the quality of life of persons with heart failure and their families. Aims: This study aimed to integrate and synthesize the findings of qualitative studies on family members’ experiences of caring for patients with heart failure. Methods: We employed the meta-ethnography methodology. Five electronic bibliographic databases were used to retrieve studies published from April 2009–March 2019 that explored family caregivers’ experiences of caring for patients with heart failure. Twelve qualitative studies were finally included for the synthesis, based on the eligibility criteria. Results: Three themes were identified: “shouldering the entire burden,” “starting a new life,” and “balancing caregiving and everyday life.” These three themes illustrate how family caregivers fulfilled caregiving roles, what helped them juggle their multiple responsibilities, and how they struck a balance between life as caregivers and individuals in their own right. Conclusion: This review provides a deeper understanding of family caregivers’ experiences of caring for patients with heart failure. The findings can help healthcare providers in the development and implementation of tailored interventions for both patients and family caregivers.

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

“…Social relationships influenced the perceptions of patients with obesity [ 142 ]. In HF and COPD, informal caregivers reported perceiving insufficient social support [ 36 , 143 , 144 ]. This theme included two subthemes: informal caregivers’ burden and patient–informal caregiver partnership.…”

“…Informal Caregivers’ Burden Most informal caregivers of patients with COPD [ 41 , 43 , 44 , 145 ] or HF [ 36 , 143 , 144 , 146 , 147 ] considered their role to be challenging and burdensome, affectively and cognitively demanding, and involving feelings of anxiety, fear, loss of control, sense of duty, loss of intimacy, social isolation, declining energy levels, and adverse effects on quality of life. Informal caregivers described undergoing a significant role change, with more domestic tasks and less personal time [ 36 ].…”

“…In HF and COPD, informal caregivers experienced ambiguity and uncertainty in their role [ 36 , 59 , 117 , 143 , 151 ]. Most had no formal care training and devised personal strategies [ 36 , 144 ]. In T2DM, some healthcare professionals also reported that remaining aware of changing recommendations [ 93 ] or methods to help patients to manage insulin effectively was challenging [ 79 ]; others expressed difficulties identifying end-of-life stages in patients with COPD [ 43 ].…”

“…Some patients did not participate in forums and preferred to keep their privacy or real-life contacts [ 161 ]. Informal caregivers of patients with HF found support groups useful [ 144 ].…”

Family Nursing: The family as the unit of research and care

“…Generally speaking, the importance of family members in care is increasingly acknowledged. 6,7 However, research indicates that nurses do not include the role and support of family in their professional activities. Tapp and Moules describe how, although nurses highly acknowledged the importance of family in the care for their (cardiac) patients, there were no formal approaches to family assessment, and interventions towards families were hardly observed.…”