Symptom perception among persons with heart failure and their informal caregivers: development and feasibility of a complex nursing intervention

Heart failure is a major chronic cardiovascular illness associated with poor outcomes. Its prevalence rises to > 10% among people aged > 70 years old. In Switzerland, about 200,000 people live with heart failure and heart failure is the main cause of hospitalization in persons ≥ 65 years old.

Symptom perception in heart failure has been identified as crucial for effective self-care, which is a modifiable factor associated with decreased hospital readmission and improved survival.

Symptom perception is a prerequisite for self-care management and has emerged as being essential for effective heart failure self-care. Symptom perception has been described as involving body listening, monitoring signs to detect physical sensations and recognising, interpreting and labelling symptoms. Symptom perception is challenging for persons with heart failure, and failure to detect or appropriately interpret symptoms can result in inappropriate, or delayed responses, and prolonged hospitalization.

HF symptom perception literature is integrated within the literature on HF self-care. The impact of targeting symptom perception specifically requires further study. Furthermore, uncertainties remain about the feasibility, acceptability, and outcome responsiveness of a novel intervention supporting symptom perception, including among informal caregivers.

The doctoral project aimed to develop a complex, evidence-based intervention supporting SYMptom PERception in HEART failure (SYMPERHEART) and test its feasibility, acceptability, and outcome responsiveness among persons with HF and their informal caregivers.

The project was made up of three studies:

1. A scoping review to map HF symptom perception literature on definition, description, factors, instruments, interventions, outcomes and informal caregivers’ role.
2. A longitudinal observational study to assess the test–retest reliability of an HF self-care measurement instrument—the Self-Care of Heart Failure Index (SCHFI) v.6.2—in its French version for Switzerland.
3. A feasibility study with a single group, quasi-experimental, with a pre-test post-test design, to test the SYMPERHEART intervention for feasibility, acceptability, and outcome responsiveness. A qualitative study embedded in this feasibility study explored the intervention’s perceived feasibility and acceptability from the perspective of the nurses delivering the intervention.

The results of the doctoral thesis:

1. The HF symptom perception literature was mapped with regard to definition, description, related factors, measurement instruments, interventions, and outcomes.
2. The test–retest reliability of SCHFI v.6.2 in its French version for Switzerland was found to be poor-to-moderate among 88 inpatients with HF and subsequently moderate-to-good among the same participants in an outpatient setting.
3. SYMPERHEART was tested in a home-based care setting among 18 home-dwelling persons with HF (mean age 85.5) and seven informal caregivers (mean age 64.7). It was delivered by six homecare nurses as part of their daily working practice. SYMPERHEART was found to be feasible and acceptable by persons with heart failure, informal caregivers and nurses. The nurses described SYMPERHEART’s perceived value positively using four themes. Symptom perception and contribution to symptom perception responded favorably to the novel SYMPERHEART complex nursing intervention.

This doctoral project was guided by the UK Medical Research Council’s framework for developing and evaluating complex interventions in health. The studies provide important information needed to progress to the next phase of evaluating the novel intervention’s effectiveness. This doctoral thesis contributes to our overall knowledge of HF self-care, specifically symptom perception, among persons with HF and their informal caregivers.