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: caregivers; chronic disease; complex adaptive system; dimensions of time; interdependence; palliative care; teamwork.