The Perceptions of Important Elements of Caregiving for a Left Ventricular Assist Device Patient

Magid, Molly; Jones, Jacqueline; Allen, Larry A.; McIlvennan, Colleen K.; Magid, Katie; Thompson, Jocelyn S.; Matlock, Daniel D.

doi:10.1097/jcn.0000000000000242

Cited by 48 publications

(39 citation statements)

References 39 publications

(30 reference statements)

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“…11 While functional status and patient reported outcomes, including quality of life, have been reviewed in the literature, no single study has provided a holistic account regarding the ways in which patients experience and adapt to living with an LVAD. The purpose of this review is to synthesize and convey information to inform components of LVAD education programs that support the coping and adaptation of patients living with an LVAD and identify opportunities for future interventions.…”

Section: Coping and Adaptation In Lvad Patients: A Meta-synthesismentioning

confidence: 99%

Adaptation and coping in patients living with an LVAD: A metasynthesis

et al. 2016

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Background Left Ventricular Assist Device (LVAD) patients have shown improvements in measures of quality of life and functional status compared to those who are medically managed. Qualitative research has not yet been meaningfully integrated. Aim To synthesize and convey information to inform components of LVAD education programs that support the coping and adaptation of patients living with an LVAD and to identify opportunities for future interventions. Methods Qualitative meta-synthesis using Lazarus and Folkmans’ Transactional Model of stress and coping Results Four distinct stages of adaptation were identified: Pre-LVAD, Implant Hospitalization, Early Home Adaptation and Late Home Adaptation. Each stage includes tasks related to physical, psychological and social domains. Further, two themes emerged: 1) Primary Appraisal: Every stage is a new challenge and 2) Secondary Appraisal: Routines are achievable, emotions are more difficult. Conclusions The emotional challenges LVAD patients face including fear and anxiety related to living with a life limiting illness and changed social roles need to be honestly addressed. Individuals living with LVAD can achieve a sense of independence and enjoy social interactions and activities that are important to them through addressing practical and emotional problems to facilitate effective coping.

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Section: Coping and Adaptation In Lvad Patients: A Meta-synthesismentioning

confidence: 99%

Adaptation and coping in patients living with an LVAD: A metasynthesis

et al. 2016

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“…Several reviews have evaluated particular aspects of HF family caregiving, including general experiences [12], relationship quality [13], needs [14], burden [15, 16], roles in patient self-care [17–19] and left ventricular assist device management [20]. However, to our knowledge, the evidence-base of original research focused on HF family caregiving has yet to be assessed in its entirety in order to inform future research directions and priorities in HF palliative care.…”

Section: Introductionmentioning

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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The Perceptions of Important Elements of Caregiving for a Left Ventricular Assist Device Patient

Cited by 48 publications

References 39 publications

Adaptation and coping in patients living with an LVAD: A metasynthesis

Adaptation and coping in patients living with an LVAD: A metasynthesis

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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