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

Abstract

BackgroundInformal 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 methodsFrom 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.ResultsThe 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.ConclusionWe 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.

Development of a Nostalgic Remembering Intervention

“… 7 Both caregivers and care recipients express negative changes in long-established roles and relationships. 8 Furthermore, both experience social isolation, loneliness, and a sense of abandonment as social connection is diminished. 7 …”

Caregivers’ burden and other selected problems of patients treated for heart failure

“…In addition, progress in cardiac therapy, e.g. defibrillation and assistive devices, is another cause of greater stress due to the monitoring of the operation of these devices [34][35][36]. Many caregivers have also shown persistent anxiety, irritability, difficulty concentrating, and general confusion, which result in depressed mood.…”

Understanding Experiences in Hospice: Exploring Temporal, Occupational, and Relational Dimensions Using Pictor Technique

“…Temporality is the individual’s subjective experience of time, and may involve a divergence between linear clock time and experiences of it (Ellingsen et al, 2013; Larson, 2004; Lövgren et al, 2010). Temporality is described as more diverse than clock time, to include embodied and situated time, such as biological, relational, institutional, and so on (Ellingsen et al, 2013; Lövgren et al, 2010; Nimmon et al, 2018). The existential and embodied experiences of dying may cause dying people to experience temporality differently than those around them (Giuliani et al, 2015; Robertson, 2014).…”