Table 2.
Major and subnodes following grounded theory analyses of eight interviews with caregivers of people with PD.
| Major themes and subcodes | Researcher 1 N comment/s coded | Researcher 2 N comment/s coded |
|---|---|---|
| The negative effects of PD on carers (total) | ||
| Doing fewer things in general | 14 | 19 |
| Difficulties getting out | 4 | 5 |
| Less travel and holidays | 2 | 2 |
| Loss of intimacy | 1 | 1 |
| Increased responsibilities | 3 | 4 |
| Adapting to new routines | 5 | 4 |
| Mothering/being “overly” helpful | 6 | 5 |
| Loss of freedom | 7 | 8 |
| Sense of suffocation/claustrophobia | 2 | 3 |
| Feelings and emotions | ||
| Depression | 2 | 2 |
| Anxiety | 3 | 2 |
| Stress | 4 | 4 |
| Guilt/Selfishness | 3 | 4 |
| Associated with religion | 1 | 1 |
| Associated with love and marriage | 3 | 4 |
| Associated with sense of duty and sacrifice | 3 | 3 |
| Loneliness/lack of understanding | 3 | 3 |
| Loss of friends | 3 | 4 |
| Carers' perceptions of living with PD | ||
| What being a carer means for caregivers of PwP | 8 | 7 |
| Accepting life with PD | 5 | 6 |
| Life before PD (reminiscence/change/loss) | 6 | 5 |
| Diagnosis and symptoms | 9 | 11 |
| Experienced with outside help for people with PD | 3 | 2 |
| Issues related to cognitive impairment in addition to PD | 8 | 6 |
| Issues related to caregiver ailments | 1 | 2 |
| Number of activities discussed | 12 | 12 |
| Exercise | 4 | 4 |
| Dance for Parkinson's/music group | 6 | 6 |
| Enjoyment of music | 3 | 3 |
| Support group | 2 | 2 |
| Total beneficial reasons for accompanying PD individuals to the activities | ||
| Motivation to do “something,” rather than nothing | 2 | 3 |
| Socialising | 9 | 6 |
| Shared understanding in safe space | 4 | 4 |
| Increased positivity | 5 | 4 |
| Seeing benefit for person they care for (mood, confidence, independence) | 6 | 5 |
| Physical (increased energy/fitness) | 4 | 4 |
| Increased fatigue | 3 | 3 |
| Comparison with other people with PD (disease progression) | 5 | 5 |
| No benefit perceived by carers | 3 | 2 |
| Only attend because not enough time to do something else | 2 | 3 |
| Barriers to participation | ||
| Physical deterioration (including speech) | 7 | 8 |
| Fatigue/Apathy | 1 | 2 |
| Discomfort at facing future impact of PD | 2 | 2 |
| Does not like the activity | 4 | 3 |
| Benefits to caregiver by not attending the activities | ||
| Freedom from PD/distraction from reality | 3 | 4 |
| Time to self | 4 | 3 |
| Different interests | 2 | 1 |
| Increased independence of person with PD | 2 | 3 |
| The meaning of being well for caregivers of person with PD | ||
| Contentment | 5 | 6 |
| Physical | 6 | 6 |
| Lack of pain | 2 | 3 |
| Less fatigue | 3 | 2 |
| Psychological | 7 | 5 |
| Less depressed | 1 | 1 |
| Less anxious/worry about future | 3 | 4 |
| Less stressed | 4 | 3 |
| Autonomy | 3 | 4 |
| Financial | 1 | 1 |
| Reminiscence for freedom | 2 | 3 |