Elsevier

Heart & Lung

Volume 30, Issue 6, November–December 2001, Pages 429-436
Heart & Lung

Issues In Cardiovascular Nursing
An ethnographic approach to understanding the illness experiences of patients with congestive heart failure and their family members*

https://doi.org/10.1067/mhl.2001.119832Get rights and content

Abstract

Objective: The purpose was to understand the illness experiences of patients with congestive heart failure and their family members. Design And Setting: The study design was a focused ethnography that took place in 1 outpatient cardiology clinic, 2 outpatient heart failure clinics, and informants’ homes located in a large metropolitan city in southeast Texas. Sample: The sample consisted of 28 informants (patients, n = 16; family members, n = 12). Method: Data were collected from observations, participant observations, demographic forms, chart reviews, and interviews. Interviews were open-ended, semistructured, in-depth, and audiotaped. A thematic analysis process was conducted through domain analysis and constructing data into themes and subthemes. Findings: Patients with congestive heart failure and their family members experience a process of disruption, incoherence, and reconciling. Reconciling emerged as the salient experience described by informants and was manifested as struggling, participating in partnerships, finding purpose and meaning in the illness experiences, and surrendering. (Heart Lung® 2001;30:429-36.)

Section snippets

Design

This study used a focused ethnographic research method, a qualitative research approach that is used by anthropologists, nurses, and social scientists to understand cultural experiences of the group that is being studied. The ethnographer understands the meanings of chronic illness by conducting field studies that provide the context for the emergence of data with regard to the cultural collision of the patient’s world and biomedicine. This method has been widely used in research to understand

Results

This section describes an overview of the findings of the study that lay a foundation for understanding the experiences of living with CHF. Selected interview texts will be presented to illustrate the informants’ perspective. Thematic analysis revealed that patients and family members living with CHF experience a process that includes disruption, incoherence, and reconciling.

All cases were incorporated into the analysis. The rationale for including contrast cases (patients who had coronary

Discussion

Findings from this study support the view suggested by Frank32 and Kleinman33 that the illness experience entails more than the medical story can convey. The processes of disruption, incoherence, and reconciling provide a broad foundation for understanding the illness experiences of patients and their family members who live with CHF. Disruption was described in terms of events or thoughts that caused a change in the order of one’s life. This is in contrast to the illness constellation model

Limitations

Despite researchers’ attempts to purposefully sample patients across all New York Heart Association classifications of heart failure, no patients with class I CHF participated in the study. This may be a result of these patients’ requiring fewer clinic visits than their counterparts, and therefore, they are not as available during recruitment at clinical sites. Attempts were also made to incorporate ethnic diversity; however, the participants were primarily Caucasians and African Americans.

Implications

The findings of this study serve to highlight the processes individuals experience as they navigate through this burdensome condition. Knowledge of these processes provides an emerging theoretic portrait that is useful to practice. Clinicians need to elicit illness narratives of the patient and family member to assess for discrepancies between the practitioner, patient, and family member perspective of the illness and to identify the disruptions and incoherences in the experience. One of the

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    *

    Reprint requests: Jane S. Mahoney, DNS, RN, CS, University of Texas-Houston Health Science Center School of Nursing, 1100 Holcombe Blvd, Room 5.533C, Houston, TX 77030.

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