Competence, Compassion, and Care of the Self

Abstract

Background Family caregivers are essential to the well-being of patients with chronic heart failure (HF) because they provide care in managing complex medication regimens, dietary sodium restrictions, and symptoms. Objective The purpose of this qualitative study was to gain a deeper understanding of the HF caregiving experience and describe the needs and concerns expressed by caregivers. Methods Qualitative descriptive methodology was conducted using data from responses to open-ended questions asked as part of a larger longitudinal study. The sample was 63 patients with HF and 63 family caregivers. Results Utilizing basic content analysis, the three main themes of needs and concerns that emerged were competence concerns, compassion maintenance, and care of the self. Sub-themes of competence concerns were doing things right, making a serious mistake, and uncertainty. Conclusions Family caregivers of HF patients had many needs and concerns about their competence in performing tasks, their compassion, and caring for themselves. Data can be used to design testable interventions to improve the HF caregiving experience for patients and caregivers.

Long-Term Socioeconomic Impact of Informal Care Provided to Patients with Pacemakers: Remote vs. Conventional Monitoring

“…On the other hand, at the time of providing care, 28% of the participants had doubts about how to perform the tasks, and 34% expressed the need to obtain more training. These results are consistent with those of other studies [21,30,31], in which informal caregivers experienced ambiguity and uncertainty with respect to the caregiver's role. In addition, they were afraid of making serious mistakes due to their lack of competence to perform care tasks correctly.…”

“…The workload of informal caregivers was related to the tasks they performed to help meet the basic and instrumental needs of the daily life of patients with pacemakers, namely: preparing meals; doing household chores; going to the doctor; shopping; managing procedures; medication control; helping with bathing/getting ready; and helping with dressing/undressing-it is worth noting that these tasks have been described by other informal caregivers in simulated studies [14,21,[29][30][31]. There was a higher percentage of caregivers who performed these tasks in the CM group, and these results were similar to those obtained in previous studies conducted with a one-year monitoring period [8,32].…”

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

“…15,18 Caregivers have a range of unmet needs that fluctuate with PHF medical status, and are ineffectively addressed or ignored by the formal healthcare system, and relatively few interventions effectively support HF caregivers. 7,19 It is critical to develop interventions that support these caregivers so that care can be provided in effective and sustainable ways. Moreover, supporting HF caregivers also has important implications for PHF.…”

Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study

“…HF also impinges on family, friends, and significant others [5,6], especially when the ill person experiences more severe symptoms [7]. Family members often shoulder the role of informal carers, supporting persons with HF both practically and emotionally [5,6,8] and are instrumental in supporting self-care [9] as well as in helping the ill person navigate the health care system [6,9,10].…”