BACKGROUND: Despite a considerable amount of research into heart failure there remains a divergence between the care available and patient's needs. The predominant biomedical perspective is more focused on the disease rather than the patient. In order to deliver formal care appropriate to the needs of middle-aged patients with moderate-severe HF it is imperative to gain the perspective of the individual patient. AIMS: The aim of the current study was to explore and understand the phenomenon: Formal care as experienced from the perspective of middle-aged patients living with HF. METHODS: The study was performed using a lifeworld perspective. Data was collected in seven unstructured interviews with middle-aged people living with moderate-severe HF. Data was analysed using a phenomenological approach. RESULTS: Formal care, as experienced by middle-aged patients living with moderate to severe HF, means hope to once again be able to have access to life. However, the meaning of formal care is ambiguous, which signifies that care means both health and suffering at the same time. The essence's meaning constituents are: dependency of care, surrender to care and unclear participation. CONCLUSION: The experience of formal care means both well-being and suffering at the same time. Patients' suffering in relation to formal care can be reduced if formal carers act from an ethical patient perspective point of view and if carers regard patients' lived experiences.
BACKGROUND: Despite a considerable amount of research into heart failure there remains a divergence between the care available and patient's needs. The predominant biomedical perspective is more focused on the disease rather than the patient. In order to deliver formal care appropriate to the needs of middle-aged patients with moderate-severe HF it is imperative to gain the perspective of the individual patient. AIMS: The aim of the current study was to explore and understand the phenomenon: Formal care as experienced from the perspective of middle-aged patients living with HF. METHODS: The study was performed using a lifeworld perspective. Data was collected in seven unstructured interviews with middle-aged people living with moderate-severe HF. Data was analysed using a phenomenological approach. RESULTS: Formal care, as experienced by middle-aged patients living with moderate to severe HF, means hope to once again be able to have access to life. However, the meaning of formal care is ambiguous, which signifies that care means both health and suffering at the same time. The essence's meaning constituents are: dependency of care, surrender to care and unclear participation. CONCLUSION: The experience of formal care means both well-being and suffering at the same time. Patients' suffering in relation to formal care can be reduced if formal carers act from an ethical patient perspective point of view and if carers regard patients' lived experiences.
Authors: Karolien Baldewijns; Sema Bektas; Josiane Boyne; Carla Rohde; Lieven De Maesschalck; Leentje De Bleser; Vincent Brandenburg; Christian Knackstedt; Aleidis Devillé; Sandra Sanders-Van Wijk; Hans-Peter Brunner La Rocca Journal: Int J Care Coord Date: 2017-08-20