Abstract
Background: Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning.
Objectives: The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence.
Methods: Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad member was asked similar questions about managing HF symptoms, psychosocial care, and planning for the future. Interviews were transcribed and analyzed using the general inductive approach.
Results: Congruence, incongruence, and lack of communication between patients and caregivers were identified in areas such as managing illness, perceived care needs, perspectives about the future of HF, and end-of-life issues. Seven dyads were generally congruent, 4 were incongruent, and 6 demonstrated a combination of congruence and incongruence. Much of the tension and distress among dyads related to conflicting views about how emotions should be dealt with or expressed. Dyad relationship (parent-child vs spouse) was not clearly associated with congruence, although the relationship did appear to be related to perceived caregiving roles.
Conclusions: Several areas of HF clinical and research relevance, including self-care, advance care planning, and communication, were affected by congruence. Further research is needed to define how congruence is related to other relationship characteristics, such as relationship quality, how congruence can best be measured quantitatively, and to what degree modifying congruence will lead to improved HF patient and caregiver outcomes.