Palliative Needs of Spousal Caregivers of Patients With Heart Failure Followed Up at Specialized Heart Failure Centers

Hupcey, Judith E.; Fenstermacher, Kimberly; Kitko, Lisa; Fogg, Janet

doi:10.1097/njh.0b013e31820ce15e

Cited by 30 publications

(91 citation statements)

References 21 publications

(26 reference statements)

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“…Caregivers in incongruent dyads reported increased levels of tension and psychosocial distress both individually and within the dyad adding to the potential burden in an already burdensome role. This finding highlights the importance of health care providers, viewing the caregiver as not only a co-provider but also a co-recipient of care (Hupcey, Fenstemacher, Kitko, & Fogg, 2011). …”

Section: Discussionmentioning

confidence: 77%

Patient and Caregiver Incongruence in Advanced Heart Failure

et al. 2014

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The important role of caregivers in heart failure (HF) management is well documented, but few studies have explored HF patient–caregiver dyads when dyadic incongruence is evident. The purpose of this study was to determine the prevalence of incongruence between HF patient–caregiver dyads, areas of incongruence, and the impact on individuals in the dyadic relationship. Data were collected as part of a longitudinal qualitative study examining the palliative care needs of HF dyads. Interviews with dyads determined to be incongruent were further analyzed. Of the 100 dyads, 47 were identified as being incongruent. Dyads were found to be incongruent in illness management, health care issues, and end-of-life decisions. Dyads that were incongruent reported more psychosocial issues and distress within the dyad and individually. Further research is needed to determine the impact of incongruence and whether interventions to modify incongruence will lead to improved HF patient and caregiver outcomes and experiences.

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Section: Discussionmentioning

confidence: 77%

Patient and Caregiver Incongruence in Advanced Heart Failure

et al. 2014

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“…Thirteen studies addressed how fluctuations in the HF illness trajectory impact caregiving experiences over time [39, 57, 72, 73, 77, 78, 84, 88, 97, 113, 118, 127, 140]. Qualitative studies [39, 72, 73, 77, 78, 84, 88, 97, 118, 140] described a number of similar themes including: initial doubts and anxiety about performing in the caregiving role that improved over time; frenzied periods of medical instability (e.g.…”

Section: Resultsmentioning

confidence: 99%

“…Qualitative studies [39, 72, 73, 77, 78, 84, 88, 97, 118, 140] described a number of similar themes including: initial doubts and anxiety about performing in the caregiving role that improved over time; frenzied periods of medical instability (e.g. unanticipated emergency visits to hospital, device placement, heart transplant) followed by medical stability and concerted efforts to stabilize to a normal lifestyle; need for constant guidance and social support; persistent worry and stress over uncertainty about the future; constant “juggling” of work, home, and caregiving tasks; increased sense of responsibility and role in decision-making as care recipients health and functional ability worsened over time; constant adoption of new strategies and adaptations to normalize life as much as possible; feeling more socially isolated over time as care tasks increased; and a mixture of acceptance, relief, and sadness as end of life neared.…”

Section: Resultsmentioning

confidence: 99%

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

et al. 2017

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Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence-base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize: 1) how caregivers influence patients, 2) the consequences of HF for caregivers, and 3) interventions directed at HF caregivers. We reviewed all literature to December 2015 in PubMed and CINAHL using the search terms “heart failure” AND “caregiver.” Inclusion criteria dictated that studies report original research of HF family caregiving. Articles focused on children or instrument development or aggregated HF with other illnesses were excluded. We identified 120 studies, representing 5,700 caregivers. Research on this population indicates that: 1) caregiving situations vary widely with equally wide-ranging tasks for patients to help facilitate their health behaviors, psychological health and relationships, and quality of life (QoL); 2) caregivers have numerous unmet needs that fluctuate with patients’ unpredictable medical status, are felt to be ignored by the formal healthcare system, and can lead to distress, burden, and reduced QoL; and 3) relatively few interventions have been developed and tested that effectively support HF family caregivers. We provide recommendations to move the science forward in each of these areas that moves beyond descriptive work to intervention development and clinical trials testing.

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“…Future longitudinal studies exploring the quality of interpersonal dynamics in family caregiver and patient relationships across the HF trajectory may help to identify those at risk for depression as they transition into their new roles. 28 …”

Section: Discussionmentioning

confidence: 99%

Competence, Compassion, and Care of the Self

Sullivan

Marcuccilli²,

Sloan

et al. 2016

Journal of Cardiovascular Nursing

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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.

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Palliative Needs of Spousal Caregivers of Patients With Heart Failure Followed Up at Specialized Heart Failure Centers

Cited by 30 publications

References 21 publications

Patient and Caregiver Incongruence in Advanced Heart Failure

Patient and Caregiver Incongruence in Advanced Heart Failure

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

Competence, Compassion, and Care of the Self

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