Understanding Dyadic and Polyadic Heart Failure Self-Care from Informal Caregivers’ Perspective

The extensive burden associated with heart failure (HF) related hospitalizations can be reduced if patients adhere to their treatment plans and self-care. One of the supportive resources to assist HF patients is their family or friends, the informal caregivers (ICGs). However, limited knowledge is available on how ICGs work in a dyadic HF self-care system. The purpose of this study was to identify factors that influence ICGs’ engagement and effectiveness in the dyad, their dyadic roles and responsibilities, and cognitive processes underlying their dyadic HF self-care decisions. The motive is to inform the design and development of user-centered technology-based solutions to improve ICGs’ contributions in assisting HF patients. A concurrent mixed-methods was conducted from March to September 2021 in a 465-bed tertiary care hospital in a large urban Midwestern city in the United States. A total of 19 ICGs participated in this study. The findings of this study yielded a cognitive-socio-technical model for dyadic HF self-care that was used for creating a tool for modeling ICG personas. Six distinct ICG personas were modeled based on the findings of this study using the modeling tool to offer design consideration for technology-cased solutions that can foster dyadic or polyadic HF self-care. The results of this study show technology-based solutions can enhance ICGs’ workflows and address their challenges to improve engagement and effectiveness of ICGs in dyadic or polyadic HF self-care. Several changes in healthcare system policy and practice models are required, specifically changing the work culture and compensation for care providers to spend the required time for training, engaging, and supporting patients and their ICGs as one unit of care. Future research is also required to address the existing knowledge gaps about dyadic or polyadic HF self-care to understand their needs and develop successful technology-based solutions to improve engagement and effectiveness of ICGs in dyadic or polyadic HF self-care.