Family Caregivers' inside Perspectives: Caring for an Adult with a Left Ventricular Assist Device as a Destination Therapy

Marcuccilli, Linda; Casida, Jesus; Bakas, Tamilynn; Pagani, Francis D.

doi:10.7182/pit2014684

Cited by 28 publications

(30 citation statements)

References 46 publications

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“…transplant potentiality or device failure). 11,12,32-34 Additionally, patient physical symptoms have been previously associated with worse caregiver psychological health, 35 and our sample – like the broader population of VAD patients – had advanced HF (NYHA Class III/IV) that is characterized by a heavy burden of symptoms. Hence, it not surprising that we observed caregiver depression and anxiety that were numerically worse than national norms and published averages in HF caregiving samples.…”

Section: Discussionmentioning

confidence: 79%

Quality of Life, Depression, and Anxiety in Ventricular Assist Device Therapy

et al. 2017

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Background: Patients who receive ventricular assist device (VAD) therapy typically rely on informal caregivers (family members or friends) to assist them in managing their device. Objective: The purpose of this study is to characterize changes in person-oriented outcomes (quality of life [QOL], depression, and anxiety) for VAD patients and their caregivers together from pre-implantation to 3 months post-implantation. Methods: This was a formal interim analysis from an ongoing prospective study of VAD patients and caregivers (n = 41 dyads). Data on person-oriented outcomes (QOL: EuroQol 5 Dimensions Visual Analog Scale; depression: Patient Health Questionnaire-8; anxiety: Brief Symptom Inventory) were collected at 3 time points (just prior to implantation and at 1 and 3 months post-implantation). Trajectories of change for patients and caregivers on each measure were estimated using latent growth modeling with parallel processes. Results: Patients’ QOL improved significantly over time, whereas caregiver QOL worsened. Depression and anxiety also improved significantly among patients but did not change among caregivers. There was substantial variability in change on all outcomes for both patients and their caregivers. Conclusions: This is the first quantitative study of VAD patient-caregiver dyads in modern devices that describes change in person-oriented outcomes from pre-implantation to post-implantation. This work supports the need for future studies that account for the inherent relationships between patient and caregiver outcomes and examine variability in patient and caregiver responses to VAD therapy.

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Section: Discussionmentioning

confidence: 79%

Quality of Life, Depression, and Anxiety in Ventricular Assist Device Therapy

et al. 2017

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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%

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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“…Therefore, we derived a list of core caregiver support domains from a growing conceptual peer-reviewed literature on the importance of caregiver involvement in LVAD and other health outcomes. [2][3][4][5][6][7][8][9] To create these domains, we incorporated pre-existing domains that were part of social work assessments (using Stanford Integrated Psychosocial Assessment for Transplantation variables as a starting point for our conceptual framework) and then added additional elements of caregiver support proposed anecdotally in other studies as potential factors impacting patient mortality after LVAD placement.…”

Section: Caregiver Support Domainsmentioning

confidence: 99%

Caregivers of Patients With Left Ventricular Assist Devices

Bruce

Minard

Wilhelms

et al. 2017

Circ: Cardiovascular Quality and Outcomes

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Support emphasize the importance of caregiver support for left ventricular assist device (LVAD) placement, recommending that a lack of support should serve as a relative contraindication to device placement.1 Despite the integral role that caregivers are expected to play, findings from studies on LVAD caregivers are limited. Most of these studies are qualitative, exclusively focus on caregivers' experiences or burdens, and fail to examine specific mechanisms of support and the impact of caregiver support on patient mortality or morbidity events. 2-9How caregivers contribute to positive or negative patient mortality or morbidity events is unclear. Without this foundational understanding, there will be variability across LVAD programs and among candidates with regard to how much emphasis to place on caregiver support, how such support should be assessed, and at what threshold an absence of support becomes Background-How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers' psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients' post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support-defined morbidity events. Methods and Results-We retrospectively reviewed and recorded social workers' clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan-Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P=0.01), a caregiver who has identified a backup plan (P=0.02), and a caregiver who is able to provide logistical support (P=0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles (P=0.03) and those who have an extended family who can care for the patient (P=0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone (P=0.04). No caregiver characteristics were significantly associated with morbidity. Conclusions-This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver u...

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Family Caregivers' inside Perspectives: Caring for an Adult with a Left Ventricular Assist Device as a Destination Therapy

Cited by 28 publications

References 46 publications

Quality of Life, Depression, and Anxiety in Ventricular Assist Device Therapy

Quality of Life, Depression, and Anxiety in Ventricular Assist Device Therapy

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

Caregivers of Patients With Left Ventricular Assist Devices

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