Qualitative study of challenges of caring for a person with heart failure

Abstract

Heart failure (HF) is a chronic health condition that causes significant morbidity among older adults, many of whom receive support and care from an informal caregiver. Caregiving is a difficult role with many responsibilities and challenges. An in-depth understanding of these challenges is necessary to develop services, resources, and interventions for HF caregivers. The goal of this study was to qualitatively ascertain the most significant challenges facing HF caregivers. We conducted semi-structured interviews with 16 caregivers of a person with HF (PHF). Content analysis revealed challenges rooted within the PHF (negative affect, resistant behavior, independence, and illness) Caregiver (balancing employment, lack of support, time, and caregiver health) and Relational level (PHF/caregiver dyadic relationship and other relationships). These findings can be used to inform interventions and support services for HF caregivers.

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

“…14 Their degree of involvement with the patients was extremely high, leaving little room for them to live their own lives. 32 Patients' dependence on caregivers increased over time. Together with increasing their burden, this instilled feelings of fear and hopelessness from observing their loved ones' deteriorating condition.…”

“…33,34,14 While the caregivers experienced stress and negative emotional responses, they tried to hide this psychological burden from patients; in order to offer encouragement, they needed to remain positive. 32 In home-based management of HF, family caregivers were likely to perform the role of overseer and motivator; to do so, they needed to establish a boundary between facilitating the patient's autonomy while ensuring that things functioned smoothly. 18,32,34 This was likely to generate conflict because in attempting not to overstep their boundaries, in many instances, the caregivers had to go against the patients' wishes.…”

“…18,19 They reported multiple physical problems associated with caring for the patient with HF, including fatigue, musculoskeletal disorders, and sleep disturbance. 19,32,35 Since the patients were dependent on the caregivers, and there was nobody else available to assist them, the caregivers often delayed going to see a doctor until they were in crisis. 34,36 Importantly, most family caregivers had to serve as a full-time caregiver because their patients were dependent on them for many activities of daily living.…”

“…I can't handle this and my dad right now; I can't handle both things. 32 Unmet needs for help. The participants of the included studies acknowledged receiving varying degrees of support from diverse sources.…”

“…35,36,37 While a few caregivers were satisfied with the support received, most felt that current assistance was insufficient. 19,32,34,35 From the caregivers' point of view, sufficient social support could have a positive influence on motivating the patient to engage in self-care management. "My relatives and neighbors seldom ask about our situation.…”