An Exploration of the Values Elicitation Experiences of Patients With Heart Failure and Their Family Caregivers

Values, defined as abstract, subjective, and significant core beliefs, which function within a system and priority, are integral to how individuals make decisions, and cope with stressors, including serious illness. However, little research has been conducted to explore the experiences of patients with heart failure (HF) and their family caregivers. Therefore, the purpose of this dissertation was to explore how values are discussed, reflected upon, and acted on by patients with HF and their family caregivers. This purpose was accomplished through four manuscripts and a mixed methods analysis: 1) a concept analysis of values elicitation in the context of health care and treatment decision‐making; 2) a scoping review on how values are discussed, reflected upon, and acted on by patients with HF, their family caregivers, or both related to health-related decision-making and coping; 3) a qualitative analysis exploring the values elicitation experiences of patients with a left ventricular assist device (LVAD), 4) a qualitative analysis exploring the values elicitation experiences of family caregivers of patients with an LVAD, and 5) integration of quantitative and qualitative findings to identify facilitators and barriers to values elicitation among and across patients with an LVAD and their family caregivers. In the main findings of this convergent mixed methods dissertation study (Manuscripts III/IV) exploring the values elicitation experiences of 27 patients with an LVAD and 21 family caregivers, we found that LVAD implantation was an impactful experience which prompted both patients and caregivers to reevaluate their values and priorities. Further, their values became instrumental to navigating decisions and managing stressors in the post-implantation period. Integration of quantitative and qualitative findings identified patient and caregiver facilitators, including a perceived close relationship, values alignment, being assertive, positive dyadic communication, clinician discussion initiation, one-on-one dyadic interactions, an impending decision, and involvement of a third person. Barriers included patient uncertainty about timing, lack of clinician time to engage caregivers, belief their values are known, sensitivity about certain values, being reserved, poor clinical communication, and patient hopelessness. Future communication-focused interventions are needed aimed at promoting positive patient-caregiver-clinician interactions during clinic encounters, including how to best elicit and incorporate their values.