Improving patient-centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of "off" periods.
OBJECTIVE
This study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of "off" symptoms.


METHODS
During qualitative interviews, CPs of PwP sampled by convenience through the Michael J Fox Foundation online clinical trial matching service were asked to describe their familiarity with "off" symptoms, how "off" symptoms were discussed with clinicians, and the impact of "off" symptoms on them. Data were analysed using constant comparative technique by all members of the research team.


RESULTS
A total of 20 CPs were interviewed. Compared with PwP, they were more likely to describe "off" symptoms to clinicians. CPs identified important aspects of patient-centred care for PD: establishing a therapeutic relationship, soliciting and actively listening to information about symptoms, and providing self-management support to both PwP and CPs. CPs said that clinicians did not always engage CPs, ask about "off" symptoms or provide self-management guidance, limiting their ability to function as caregivers.


CONCLUSION
By not engaging and educating CPs, "off" symptoms may not be identified or addressed, leading to suboptimal medical management and quality of life for PwP. These findings must be confirmed on a broader scale through ongoing research but suggest the potential need for interventions targeted at clinicians and at CPs to promote patient-centred care for PwP.
['Rastgardani|Tara|T|', 'Armstrong|Melissa J|MJ|0000-0002-2163-1907', 'Marras|Connie|C|', 'Gagliardi|Anna R|AR|0000-0002-5721-809X']
D000368:Aged D017028:Caregivers D005260:Female D006801:Humans D008297:Male D008875:Middle Aged D010300:Parkinson Disease D018802:Patient-Centered Care D036301:Qualitative Research D011788:Quality of Life
patient-centred care caregivers Parkinson's disease health communication patient participation qualitative research