Inadequate heart failure (HF) symptom management causes both human suffering and increased health care system utilization for the approximately six million Americans with the diagnosis. An estimated 45-70% of HF patients have unpaid, informal caregivers (such as family or friends) who engage in varying amounts of symptom management. What has not been examined critically is the role of the patient and informal caregiver dyad in symptom management -symptom recognition, symptom evaluation, treatment implementation, and treatment evaluation. Little is known about how patient and informal caregiver dyads mutually engage in symptom management or what impact dyadic engagement has on patient symptom management outcomes. The literature and our previous work suggest four basic patterns or dyadic symptom management types exist - patient oriented, caregiver oriented, collaborative, and complementary dyads.
The aims of this innovative and significant mixed methods pilot study are: 1) To describe how HF patient and caregiver dyads mutually engage in symptom management;2) To examine the relationship between specific dyadic symptom management types and patient symptom management outcomes;3) To understand symptom management within the context of the dyadic relationship. A sample of 80 New York Heart Association (NYHA) Class III/IV (Stage C or D) HF patient and informal caregiver dyads will be accrued from an affiliated hospital and outpatient clinic. The proposed study will significantly contribute to the science by linking the innovative concept of patient and caregiver dyadic symptom management types to a significant health care problem - HF symptom management. This study aims to fill a gap in our knowledge about the role that the dyad, not just the individual patient or caregiver, plays in HF symptom management. Outcomes from this study could be generalized to other chronic illness populations. The long term objective of this line of inquiry is to understand dyadic variations in symptom management to enable the development of: 1) interventions mobilizing the additional symptom management support of the informal caregiver and 2) dyadic models of care. This study will provide key pilot data, such as the prevalence of particular dyadic types (or overall distribution of types), the degree of congruence between patient and caregiver self-selected type, and the relationship of a particular dyadic type with adequate scores in symptom management, which will inform the development of a dyadically adapted HF symptom management intervention. The goal of the intervention is to maximize the functioning of the dyad so that HF symptoms are optimally managed. This study addresses the NINR priority to develop strategies to assist individuals and their caregivers in managing chronic illness.
There is a pressing need to address the suffering of the growing number of heart failure (HF) patients and understand factors that may impact symptom management for these patients and their unpaid, informal caregivers (such as family or friends). The purpose of this research is to: describe how HF patient and caregiver dyads engage in symptom management;examine the relationship between specific dyadic symptom management types and patient symptom management outcomes;and understand symptom management within the context of the dyadic relationship. This proposed study will contribute to in a deeper understanding of dyadic symptom management in HF.