Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time

Abstract

Background

Informal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care.

Materials and methods

From a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness.

Results

The analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state.

Conclusion

We conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.

Keywords:

• teamwork
• complex adaptive system
• palliative care
• caregivers
• chronic disease
• interdependence
• dimensions of time

Acknowledgments

The authors would like to acknowledge the patients, family members, and health professionals who shared their experiences with them. The authors received peer-reviewed funding to support this research from the Canadian Institutes of Health Research and the Academic Medical Organization of Southwestern Ontario. The authors acknowledge the support from the Heart Failure/Palliative Care Teamwork Research group: Malcolm Arnold, Fred Burge, Samuel Burnett, Sheri Burns, Karen Harkness, Kori LaDonna, Donna Lowery, Denise Marshall, Allan McDougall, Robert McKelvie, Joshua Shadd, Stuart Smith, Valerie Schulz, Patricia Strachan, Glendon Tait, and Donna Ward. The authors acknowledge some coding assistance from Wendy Hartford and a final proofreading of this paper from Dr Letitia Henville.

Disclosure

The authors report no conflicts of interest in this work.