Table 1.
Interview domains | Sample questions/probes |
---|---|
Communication | How has your healthcare team communicated with you as a caregiver? |
□ Probe: mode and quality of communication | |
Think back to the time a healthcare professional first told [name] he/she had PD. | |
□ What did they do well? | |
□ What should they have done differently? | |
□ What would you recommend to a healthcare professional about how and what to tell people about the diagnosis? | |
From where have you received the most useful information about being a caregiver of someone with PD? | |
What kind of information do you think is most helpful? (Including information they have not found) | |
Is there information that you think would have made you feel better prepared? | |
How do you think communication with [patient name] could be improved? | |
Patient symptoms | What symptoms of [name] PD are most difficult for you to deal with? |
□ Probe: motor (i.e., tremor, slowness, balance, and fine motor impairment) | |
□ Probe: nonmotor (i.e., mood, fatigue, sleep, cognitive, hallucinations, swallowing, and speech) | |
What is it about [mentioned symptom] that is difficult to manage? | |
Psychological | Where do you find strength? |
What makes you feel hopeful? | |
When you think about [name] PD, what are the strongest emotions that come to mind? | |
When you think about being a caregiver to [name], what are the strongest emotions that come to mind? | |
Which aspects of caring for someone with PD worry you the most? | |
Social | How would you describe your social life since [name] was diagnosed with PD? Has it changed? |
What might help you be more social and active? | |
Advance planning | What is the future to you? |
As a caregiver, what aspects of planning for the future are most important to you? | |
Have you talked with [name] about what he/she would want done if he/she could no longer speak for himself/herself? | |
□ If yes, could you tell me more about that discussion? | |
□ Who would you want to help you with planning for the future? | |
□ When do you think it would be appropriate to talk about planning for the future? | |
□ What would be most helpful for starting this conversation? | |
Caregiver safety | Are you concerned about your personal safety around [name]? |
□ Probe: physical, sexual, and verbal abuse | |
Preferences | Is there anything you could use some more help with right now? |
What do you anticipate needing help with in the future? | |
Were there any events that changed your role as a caregiver? (e.g., need for walker, wheelchair, dementia…) | |
What kind of support would be most helpful to you as a caregiver? | |
If you could design your perfect clinic, what would it look like? | |
(Can give probes, e.g., team-members, availability, group visits, continuity…) | |
Palliative care | Have you ever heard of the term “palliative care”? |
□ If yes, what does that mean to you? | |
Show palliative care brochure and ask for feedback. | |
□ Probe: Do you think this might be helpful for you? When do you think something like this might be helpful? | |
Other | Is there anything else you would like to talk about that I haven't mentioned? |
PD, Parkinson's disease.