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Learning Objective 1: The learner will be able to understand the needs of DLB patients living at home and of their families that have yet to be clarified.
Learning Objective 2: The learner will be able to understand the needs of DLB patients and their families, and consider care and support that responds to those needs.
The purpose of this study is to clarify the needs of patients suffering DLB who are living at home while receiving outpatient care, and the needs of their family in order for them to continue living at home, and to obtain implications for care.
Semi-structured interviews were conducted with 7 groups of DLB patients and their families. The patients were living at home and able to verbally express themselves when their condition was good. A qualitative, inductive analysis was carried out.
The results revealed 6 final categories of patient needs, including “desire to know the cause of worsening physical condition,” “confusion at the onset of DLB symptoms,” “desire for improvement of symptoms using appropriate medications,” as well as 7 final categories of family needs, including “desire for information regarding improving symptoms and the cause of worsening physical condition,” “lack of understanding of how to handle DLB symptoms,” “desire for improvement of symptoms using appropriate medications,” and “desire to be freed from loneliness and continue care in a mentally and physically stable state.”
The above findings suggest the need for providing sufficient information and psychological support to help patients and their families accept and cope with DLB, as well as to alleviate the care burden of families. Moreover giving advice on appropriate medications and assisting for information sharing with physicians are also considered to be important for patients living at home and their families.