Informational needs and related problems of family caregivers of heart failure patients: A qualitative study

BACKGROUND: Heart failure is incurable disease and patients often have an ongoing decline once diagnosed. The symptoms of heart failure may impair the ability of patient to perform activities of daily living. As heart failure progresses, patients normally increase their reliance on family caregivers. AIMS: This paper explored the informational needs and related problems of family caregivers of heart failure patients as a part of the findings of a study exploring experiences of family caregivers in the caregiving situation. SETTING AND DESIGN: Using a qualitative design, 19 family caregivers from three educational hospitals in Isfahan, Iran, were recruited. MATERIALS AND METHODS: Participants were selected by purposive sampling. Data were collected through semi-structured interviews. Interviews were transcribed verbatim and analyzed concurrently. RESULTS: Four major themes were emerged from the analysis of the transcripts: “Lack of care-related knowledge”, “Inaccessibility to responsible source of information”, “Lack of guidance from healthcare team” and “caring with ambiguity due to unpredictable nature of the disease”. Caregivers believed that they did not have the basic knowledge related to disease and medication administration. They received little guidance and support from the health care team on the caregiving roles. They experienced high level of ambiguity and stress in caregiving tasks due to lack of care-related knowledge and unpredictable nature of disease. CONCLUSION: The care, which was performed by the caregivers of HF patients, is beyond of their knowledge, capabilities, and resources. Nurses and other healthcare providers can use the findings of this study to develop effective educational and supportive programs to facilitate these needs.