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TableĀ 2 The coding tree

From: Living with idiopathic basal ganglia calcification 3: a qualitative study describing the lives and illness of people diagnosed with a rare neurological disease

Categories Subcategories
Frustration and anxiety with progression of symptoms without being diagnosed Had not felt any physical abnormality in their teens
Were recommended to consult doctors by their friends and parents
Had obsessed with anxiety about the unknown disease and progression of their symptoms
Confusion about diagnosis with an unfamiliar disease Got upset when they heard the diagnosis was a genetic and intractable disease
Calmly understood the situation afterwards
Did not check because there was fear about knowing
Were not able to obtain sufficient information about the disease on the Internet and were not satisfied with the information
Emotional distress caused by a genetic disease Tended to avoid contacting their brothers and sisters, who did not have the same symptoms
Confessing to their supervisors about contracting the disease to account for their absences to consult doctors
Concerns for marriage and childbirth
Passive attitude toward life, being extra careful Dealt with things while embracing the anxiety
Had experienced troubles in life that others could not know
Taking charge of life, becoming active and engaged Were willing to communicate with other patients with the same disease
Recognized that life was not only for oneself
Requests for healthcare Specialized doctors and hospitals should be increased
medical financial supports must be provided
Expected enactment of laws allowing euthanasia