Stories of the Heart: Illness Narratives of Veterans Living With Heart Failure

Heart failure (HF) is a costly and burdensome illness and is the top reason for hospital admissions for the US Department of Veterans Affairs (VA) and Medicare.¹ The cost of HF to the United States is estimated to grow to $3 billion annually by 2030.² People living with HF have a high symptom burden and poor quality of life.^3,4 Symptoms include shortness of breath, fatigue, depression, and decreases in psychosocial, existential, and spiritual well-being.^5-9

Veterans in the US are a unique cultural group with distinct contextual considerations around their experiences.¹⁰ Different groups of veterans require unique cultural considerations, such as the experiences of veterans who served during the Vietnam war and during Operation Iraqi Freedom/Operation Enduring Freedom (OIF/OEF). The extent of unmet needs of people living with HF, the number of veterans living with this illness, and the unique contextual components related to living with HF among veterans require further exploration into this illness experience for this distinct population. Research should explore innovative ways of managing both the number of people living with the illness and the significant impact of HF in people’s lives due to the high symptom burden and poor quality of life.³

This study used the model of adjustment to illness to explore the psychosocial adjustment to illness and the experience of US veterans living with HF, with a focus on the domains of meaning creation, self-schema, and world schema.¹¹ The model of adjustment to illness describes how people learn to adjust to living with an illness, which can lead to positive health outcomes. Meaning creation is defined as the process in which people create meaning from their experience living with illness. Self-schema is how people living with illness see themselves, and world schema is how people living with chronic illness see their place in the world. These domains shift as part of the adjustment to living with an illness described in this model.¹¹ This foundation allowed the investigators to explore the experience of living with HF among veterans with a focus on these domains. Our study aimed to cocreate illness narratives among veterans living with HF and to explore components of psychosocial adjustment informed by the model.

Methods

This study used narrative inquiry with a focus on illness narratives.^12-17 Narrative inquiry as defined by Catherine Riessman involves the generation of socially constructed and cocreated meanings between the researcher and narrator. The researcher is an active participant in narrative creation as the narrator chooses which events to include in the stories based on the social, historical, and cultural context of both the narrator (study participant) and audience (researcher). Riessman describes the importance of contextual factors and meaning creation as an important aspect of narrative inquiry.^12-14,16,17 It is important in narrative inquiry to consider how cultural, social, and historical factors influence narrative creation, constriction, and/or elimination.

This study prospectively created and collected data at a single time point. Semi-structured interviews explored psychosocial adjustment for people living with HF using an opening question modified from previous illness narrative research: Why do you think you got heart failure?¹⁸ Probes included the domains of psychosocial adjustment informed by the model of adjustment to illness domains (Figure). Emergent probes were used to illicit additional data around psychosocial adjustment to illness. Data were created and collected in accordance with narrative inquiry during the cocreation of the illness narratives between the researcher and study participants. This interview guide was tested by the first author in preliminary work to prepare for this study.

Allowing for emergent probes and acknowledging the role of the researcher as audience is key to the cocreation of narratives using this methodological framework. Narrators shape their narrative with the audience in mind; they cocreate their narrative with their audience using this type of narrative inquiry.^12,16 What the narrator chooses to include and exclude from their story provides a window into how they see themselves and their world.¹⁹ Audio recordings were used to capture data, allowing for the researcher to take contemporaneous notes exploring contextual considerations to the narrative cocreation process and to be used later in analysis. Analytic notes were completed during the interviews as well as later in analysis as part of the contextual reflection.

Setting

Research was conducted in the Rocky Mountain Regional VA Medical Center, Aurora, Colorado. Participants were recruited through the outpatient cardiology clinic where the interviews also took place. This study was approved through the Colorado Institutional Review Board and Rocky Mountain Regional VA Medical Center (IRB: 19-1064). Participants were identified by the treating cardiologist who was a part of the study team. Interested veterans were introduced to the first author who was stationed in an empty clinic room. The study cardiologist screened to ensure all participants were ≥ 18 years of age and had a diagnosis of HF for > 1 year. Persons with an impairment that could interfere with their ability to construct a narrative were also excluded.

Recruitment took place from October 2019 to January 2020. Three veterans refused participation. Five study participants provided informed consent and were enrolled and interviewed. All interviews were completed in the clinic at the time of consent per participant preference. One-hour long semi-structured interviews were conducted and audio recorded. A demographic form was administered at the end of each interview to capture contextual data. The researcher also kept a reflexive journal and audit trail.