Abstract 13790: Patient and Caregiver Incongruence in Heart Failure Dyads
Background: The majority of care for the 5 million people with advanced heart failure (HF) is provided by informal caregivers. Caregivers provide a combination of physical, practical, and emotional care that has been demonstrated to improve the outcomes of HF patients. The important role of caregivers in HF management is well documented but few studies have explored HF patients and their caregivers as a dyad and more specifically the experience if incongruence is evident in the dyad. Incongruence is defined as differences in decisions, behaviors and attitudes which may lead to conflict in the relationship. The purpose of this study was to examine incongruence between HF patients and their caregivers and its impact on HF management and the dyadic relationship.
Methods: One hundred HF dyads, who are part of a longitudinal study of heart failure patients with either a <1-year or <2-year predicted survival, were independently interviewed. Dyads were asked about their role in HF management, decision-making, and planning for the future. Interviews with dyads showing incongruence were further analyzed. Specific areas of incongruence and the impact on both HF disease management and the individual were explored.
Results: The majority of dyads reported areas of incongruence. Dyads were found to be incongruent in lifestyle/healthcare decisions, illness management, perspectives about the future of HF, and end-of-life issues. Dyads that were incongruent reported more psychosocial issues, tension, and distress within the dyad and individually. Patients’ noncompliance with the medical regimen led to a high level of distress in dyadic relationships. This distress often continued for caregivers even after patients’ deaths. The relationship of the dyad (parent-child vs. spouse) did not appear to impact discordance.
Conclusions: Several important areas, related to HF management, were affected by incongruence. 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.
- © 2013 by American Heart Association, Inc.