Intergenerational Caregivers of Parents With End-Stage Heart Failure

Abstract

Purpose: The purpose of this study was to longitudinally explore the experiences of young adult, adult, and older adult intergenerational caregivers caring for a parent with end-stage heart failure (HF). Design: This study was a secondary analysis of qualitative data collected during a longitudinal study that sought to determine the palliative care needs of individuals with end-stage HF and their family caregivers. Methods: Longitudinal interviews from 23 young adult, adult, and older adult children who were caring for a parent with end-stage HF were selected for thematic analysis. Researchers individually analyzed the interviews and then, as a group, came to a consensus about themes. Findings: Five major themes were identified: caregiver resources, role management, caregiver–parent relationships, filial responsibility, and personal benefits and challenges. Conclusions: These intergenerational caregivers struggled to balance their busy lives and caregiving roles. However, most felt supported by other family members or external resources. Longitudinal findings support a need for improved employer-based support for intergenerational caregivers and special attention to young carers in research and practice. Recognition of and advocacy for intergenerational caregivers providing care for a chronically ill parent is needed.

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

“…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.…”

“…It does get overwhelming. 18 Bearing physical burdens. Caregivers explained they were overwhelmed by their extended roles and duties as caregivers.…”

“…Caregivers explained they were overwhelmed by their extended roles and duties as caregivers. 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.…”

“…The participants of the included studies acknowledged receiving varying degrees of support from diverse sources. 18,19 In many cases, the initial support and concern that neighbors, friends, or colleagues displayed, declined over time. 35,36,37 While a few caregivers were satisfied with the support received, most felt that current assistance was insufficient.…”

“…Existing studies have largely evaluated only particular aspects of HF family caregiving, 11,17 including general experiences, 17 relationship quality, 18 needs, 19,20 burden, 19,21 and roles in patient self-care. 9,11 Qualitative synthesis is now recognized as a valuable tool for examining the meanings of participants' utterances, as well as their experiences and perspectives.…”