Heart failure at home—an observational study of participation among patients in structured home care

INTRODUCTION: A growing number of patients with heart failure (HF) will need lifelong care and one option is to provide advanced HF care in the patient’s home. To our knowledge, studies describing the observed participation in home-care settings are lacking. AIM: To identify and describe patient participation in care-meetings during home-care given through a European home-care model. METHODS: Study inclusion among Swedish patients that receive structured home-care at four different home care settings are ongoing. A strategic sample of patients is performed to reach a variation regarding severity of HF, different needs of home-care, age and gender. To collect data, video-recorded non participant observations are conducted. A total of 15 observations have been performed. The remaining observational data will be collected during 2011. Data will be analyzed with qualitative content analysis and categories developed inductively. The analysis has been initiated. Meaning units related to patient participation have been identified and recorded. The next step will be to develop codes out of the units, and to develop a coding scheme. Finally categories that describe patient participation will be developed. Significance of the study: Participation in care is regulated in health-care legalizations and is important from the individual’s perspective. The results from this study can be used for deepening the understanding of participation in home-care.