Ethical considerations on the value of patient knowledge in long-term care: a qualitative study of patients suffering from Korsakoff 's syndrome.

AIM: This study explores experiences of patients suffering from Korsakoff's syndrome. It contributes to improved reflection on the value of patient knowledge.

BACKGROUND: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients' individual needs necessary to provide good care. The information given by patients suffering from Korsakoff's syndrome might be mistaken, invented and even not true. The value of these patients' experiences and knowledge had not been researched to date.

METHOD: Data from six in-depth interviews were analysed concurrently through the constant comparative method.

ETHICAL CONSIDERATIONS: The principles of voluntariness, confidentiality and anonymity were respected during the research process.

FINDINGS: Four important themes within patients' knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective.

CONCLUSION: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients' unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the - unintended - effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff's syndrome.