Abstract
Heart failure (HF) is associated with frequent exacerbations and shortened lifespan. Informal caregivers such as significant others often support self-management in patients with HF. However, existing programs that aim to enhance self-management seldom engage informal caregivers or provide tools that can help alleviate caregiver burden or improve collaboration between patients and their informal caregivers. To develop and pilot test a program targeting the needs of self-management support among HF patients as well as their significant others. We developed the Dyadic Health Behavior Change model and conducted semi-structured interviews to determine barriers to self-management from various perspectives. Participants' feedback was used to develop a family-centered self-management program called "SUCCEED: Self-management Using Couples' Coping EnhancEment in Diseases." The goals of this program are to improve HF self-management, quality of life, communication within couples, relationship quality, and stress and caregiver burden. We conducted a pilot study with 17 Veterans with HF and their significant others to determine acceptability of the program. We piloted psychosocial surveys at baseline and after participants' program completion to evaluate change in depressive symptoms, caregiver burden, self-management of HF, communication, quality of relationship, relationship mutuality, and quality of life. Of the 17 couples, 14 completed at least 1 SUCCEED session. Results showed high acceptability for each of SUCCEED's sessions. At baseline, patients reported poor quality of life, clinically significant depressive symptoms, and inadequate self-management of HF. After participating in SUCCEED, patients showed improvements in self-management of HF, communication, and relationship quality, while caregivers reported improvements in depressive symptoms and caregiver burden. Quality of life of both patients and significant others declined over time. In this small pilot study, we showed positive trends with involving significant others in self-management. SUCCEED has the potential of addressing the growing public health problem of HF among patients who receive care from their significant other.
Highlights
Heart failure (HF) is a significant and growing public health problem characterized by frequent episodes of worsening symptoms, poor quality of life, and shortened lifespan [1,2,3]
A key innovation in our conceptual model is the synergy between the patient and the spousal caregiver, an aspect of disease management neglected in previous theoretical models [33,34,35]
We published an earlier version of this model [45] where we describe the components and pathways; Figure 1 represents an update of the previous model
Summary
Heart failure (HF) is a significant and growing public health problem characterized by frequent episodes of worsening symptoms, poor quality of life, and shortened lifespan [1,2,3]. Between 2010 and 2030, the direct costs related to HF are expected to increase 215%, from $25 billion to nearly $80 billion [5] To maximize their health and decrease symptom burden, HF patients need to master skills that facilitate self-management, including the ability to: adhere to medication regimens, diet, and physical activity recommendations; communicate with their health-care team; and receive appropriate screening tests and immunizations [6]. HF selfmanagement typically involves ongoing support from members of the health-care team such as nurses. Many of these interventions do not work. Heart failure (HF) is associated with frequent exacerbations and shortened lifespan Informal caregivers such as significant others often support self-management in patients with HF. Existing programs that aim to enhance self-management seldom engage informal caregivers or provide tools that can help alleviate caregiver burden or improve collaboration between patients and their informal caregivers
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