Molly Magid1, Jacqueline Jones, Larry A Allen, Colleen K McIlvennan, Katie Magid, Jocelyn S Thompson, Daniel D Matlock. 1. Molly Magid High School Student, Colorado Academy, Denver.Jacqueline Jones, PhD, RN Assistant Professor, College of Nursing, University of Colorado, Aurora.Larry A. Allen, MD, MS Assistant Professor, Advanced Heart Failure Specialist, University of Colorado, Aurora.Colleen K. McIlvennan, DNP, ANP Assistant Professor, Heart Failure Advanced Practice Nurse, School of Medicine, Division of Cardiology, University of Colorado, Aurora.Katie Magid Brown University, Providence, Rhode Island.Jocelyn S. Thompson, MA Professional Research Assistant, Colorado Health Outcomes, School of Medicine, University of Colorado, Aurora.Daniel D. Matlock, MD, MPH Assistant Professor, Internist, School of Medicine, Division of General Internal Medicine, University of Colorado, Aurora.
Abstract
BACKGROUND: The use of a left ventricular assist device (LVAD) is becoming increasingly common in patients with end-stage heart failure. Many LVAD programs require patients to have a caregiver before receiving a device. There are few studies exploring the experience, burden, and impacts on caregivers of patients with LVADs. OBJECTIVES: The aim of this study was to synthesize the qualitative literature regarding caregiver's perceptions about caring for an adult LVAD patient. METHODS: We searched MEDLINE, CINAHL, PsychInfo, and Web of Science to find English articles on the topic of LVAD caregiver's perceptions. The articles were then synthesized using a formal process of qualitative meta-synthesis. RESULTS: Eight articles met criteria for inclusion. The meta-synthesis across the articles resulted in 8 themes categorized under 3 domains. Many of the articles suggested a longitudinal process of caregiving with perceptions largely dependent upon the time of interview in relation to the LVAD. The first domain of caregiving is the "early" stage, covering the life before the LVAD through the procedure. This phase is characterized by the pre-LVAD "emotional rollercoaster," the decision seen as "no option," and the thought of "leave it [the LVAD] at the hospital." The second domain is the "middle" stage, covering the time frame after discharge from the hospital. This phase is characterized by fragility of the patient, recognition of a need to adapt, and a transformed life. The final domain is "late LVAD" and describes how late in the LVAD process the LVAD indication (bridge to transplant or destination therapy) brings in to focus what is important to caregivers. CONCLUSIONS: Existing literature indicates that the LVAD caregiver experience is intense as well as burdensome and entails the need to adapt to a new life. Given the burdens caregivers experience, clinicians and future research should explore strategies to support these important individuals.
BACKGROUND: The use of a left ventricular assist device (LVAD) is becoming increasingly common in patients with end-stage heart failure. Many LVAD programs require patients to have a caregiver before receiving a device. There are few studies exploring the experience, burden, and impacts on caregivers of patients with LVADs. OBJECTIVES: The aim of this study was to synthesize the qualitative literature regarding caregiver's perceptions about caring for an adult LVADpatient. METHODS: We searched MEDLINE, CINAHL, PsychInfo, and Web of Science to find English articles on the topic of LVAD caregiver's perceptions. The articles were then synthesized using a formal process of qualitative meta-synthesis. RESULTS: Eight articles met criteria for inclusion. The meta-synthesis across the articles resulted in 8 themes categorized under 3 domains. Many of the articles suggested a longitudinal process of caregiving with perceptions largely dependent upon the time of interview in relation to the LVAD. The first domain of caregiving is the "early" stage, covering the life before the LVAD through the procedure. This phase is characterized by the pre-LVAD "emotional rollercoaster," the decision seen as "no option," and the thought of "leave it [the LVAD] at the hospital." The second domain is the "middle" stage, covering the time frame after discharge from the hospital. This phase is characterized by fragility of the patient, recognition of a need to adapt, and a transformed life. The final domain is "late LVAD" and describes how late in the LVAD process the LVAD indication (bridge to transplant or destination therapy) brings in to focus what is important to caregivers. CONCLUSIONS: Existing literature indicates that the LVAD caregiver experience is intense as well as burdensome and entails the need to adapt to a new life. Given the burdens caregivers experience, clinicians and future research should explore strategies to support these important individuals.
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