The Future as a Series of Transitions: Qualitative Study of Heart Failure Patients and Their Informal Caregivers

Abstract

BACKGROUND: Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. OBJECTIVE: We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. DESIGN: This was a cross-sectional study using qualitative methods. PARTICIPANTS: Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. APPROACH: Participants were asked in individual, semistructured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. KEY RESULTS: Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. CONCLUSIONS: Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

“…Thirteen studies addressed how fluctuations in the HF illness trajectory impact caregiving experiences over time [39, 57, 72, 73, 77, 78, 84, 88, 97, 113, 118, 127, 140]. Qualitative studies [39, 72, 73, 77, 78, 84, 88, 97, 118, 140] described a number of similar themes including: initial doubts and anxiety about performing in the caregiving role that improved over time; frenzied periods of medical instability (e.g.…”

“…Qualitative studies [39, 72, 73, 77, 78, 84, 88, 97, 118, 140] described a number of similar themes including: initial doubts and anxiety about performing in the caregiving role that improved over time; frenzied periods of medical instability (e.g. unanticipated emergency visits to hospital, device placement, heart transplant) followed by medical stability and concerted efforts to stabilize to a normal lifestyle; need for constant guidance and social support; persistent worry and stress over uncertainty about the future; constant “juggling” of work, home, and caregiving tasks; increased sense of responsibility and role in decision-making as care recipients health and functional ability worsened over time; constant adoption of new strategies and adaptations to normalize life as much as possible; feeling more socially isolated over time as care tasks increased; and a mixture of acceptance, relief, and sadness as end of life neared.…”

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“…Information on participant demographic characteristics was collected using a brief questionnaire before the interview. A team‐based approach to thematic analysis was used, beginning the analytical process while completing interviews to continue to refine the interview guide and identify new themes to pursue in interviews . Codes were developed inductively through group discussion; additional codes that emerged were applied to all previously coded manuscripts until thematic saturation was reached …”

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“…We applied our team-based, inductive and deductive analytic toolkit, including line-by-line reading and definition of emergent ideas, codes and then themes (Betz et al 2014; Jones et al 2014). The process was iterative, building consensus through visual mapping of themes, naming, re-naming and contextualizing themes through team discussion.…”