Living with Parkinson’s disease: disease and medication experiences of patients and caregivers

Figures & data

Figure 1. Research framework.

Table I. Patient characteristics (N = 15)

Item	n(%)
Gender Male Female	11 (73.3) 4 (26.7)
Age (years) 50 ~ 59 60 ~ 69 70 ~ 79 80 ~ 89	4 (26.7) 3 (20) 6 (40) 2 (13.3)
Education Elementary school (and below) Junior high Senior high University Master’s degree or above	5 (33.3) 2 (13.3) 3 (20) 4 (26.7) 1 (6.7)
Current occupation Retired or none Service Industry	8 (53.3) 6 (40) 1 (6.7)
Disease duration (years) ≤2 3 ~ 5 6 ~ 10 16 ~ 19	9 (60) 3 (20) 2 (13.3) 1 (6.7)
Medications L-dopa Dopamine agonist COMT inhibitor MAO-B inhibitor Amantadine Anti-cholinergic	15 (100) 8 (53.3) 0 (0) 0 (0) 0 (0) 2 (13.3)
Duration of taking L-dopa <6 months 6–11 months 1–2 years 5 years 6 ~ 9 years 10 years	N = 14 1 (7.1) 1 (7.1) 7 (50.0) 3 (21.4) 1 (7.1) 1 (7.1)
Identity of usual caregiver Spouse Direct relative Spouse and direct relative Foreign worker	N = 14 10 (71.5) 2 (14.2) 1 (7.1) 1 (7.1)
Living with the usual caregiver	N = 14 14 (100)
Duration with usual caregiver (years) 2 5 6 ~ 9 16 ~ 19	N = 14 8 (57.1) 3 (21.4) 2 (14.2) 1 (7.1)
Support by usual caregiver Participates in treatment discussion Reminds to take medication only None of the above	N = 14 9 (64.3) 1 (7.1) 4 (28.6)

Abbreviations: COMT, catechol-o-methyl transferase; MAO-B: monoamine oxidase-B

Table II. Core themes and subthemes

Core themes	Sub-themes
1. Symptoms and help-seeking behaviours before a diagnosis	Experiencing PD symptoms Self-treatment before diagnosis
2. Emotional impacts and life adaptations of patients after a PD diagnosis	Feelings after the diagnosis Difficulties in public Changes and worries about work Changes in daily activities
3. Life affected by medications	Medication effects and perceived feelings Life readjustment and medication adherence in maximizing treatment effects
4. Experience of caregivers in taking care of PD patients	Becoming depressed Giving motion orders
5. Communication between doctors and patients	Reconciling doctor’s words with actual experience Social care in PD support groups

Table

Disease awareness How did you realize you had the disease? What is the difference in your body compared to the old days? Since you discovered something was wrong with you, what is the difference in your daily life? Have you made any adjustments to your daily life? What kind of changes have you had so far since you were diagnosed with PD? Do you encounter difficulties in public areas? What was that experience? Could you share with us? What did it mean to you when you were diagnosed with Parkinson’s disease? What was the impact on your daily life? What did others think of you?

Medical care On what occasion did you seek for others’ help? What was your feeling? What would you like to know about the disease? What do you hope will improve by the medical environment and policy?

Medication use Would you please share your experience discussing your disease with doctors in the clinic? What is the difference between before and after taking your medications? Could you share the impacts of the medications on your daily life and personal feelings? Did you have the experience of asking your doctor to change the prescription? Could you share the experience when a doctor changed your medications in the past?

Table

Medical care When do you give assistance to patients? Under what situation? Using what method? Did you guide the patient or let him/her help himself/herself? Do you discuss caregiving with your patient? When do you feel frustrated? When do you have a sense of achievement? Could you share the experiences with us? What would you like to know about the disease? What do you hope will improve in terms of the medical environment and policy?