Table 1.

Interview Domains and Sample Questions for Caregivers

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.