2019 Volume 8 Issue 2 Pages 104-112
Objective: To identify how patients with intractable diseases living under home care build their own customized lifestyles while they face a series of experiences of loss.
Methods: We conducted semi-structured interviews of eight patients with intractable diseases living under home care. We collected data about their feelings and conditions, which change with disease progression. We conducted an analysis using the revised version of the grounded theory approach.
Results: The process of building customized lifestyles begins with a deviation from daily life. Following their diagnosis of an intractable disease, patients feel anxious about their unforeseeable future and to shelve their emotions as [nothing can be done]. During this time, patients must create a balance between making independent efforts to care for themselves and obtaining the required support. By building a modifiable and customized lifestyle, which can be adapted to long-term care, they found their way to a stage where they defined their role and felt that they belonged to society.
Discussion: To develop the process, it was important for patients to shelve their emotions as [nothing can be done].
