Improving patient‐centred care for persons with Parkinson's

Qualitative interviews with care partners about their engagement in discussions of “off” periods

Bibliographic Data

ID19507510
AuthorsTara Rastgardani (University Health Network Toronto Ontario Canada), Melissa J Armstrong (0000-0002-2163-1907, Department of Neurology University of Florida Gainesville Florida), Connie Marras (0000-0002-9236-9328, University Health Network Toronto Ontario Canada), Anna R Gagliardi (0000-0002-5721-809X, University Health Network Toronto Ontario Canada, corresponding author)
Year2019
Volume22
Issue3
Pages555-564
Publication date2019-06-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.12884
PMID30977262
OpenAlexW2937728921
LanguageEN
Citations received2
References cited35

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

Active listening · Psychological intervention · Psychotherapist · Qualitative research · Medicine · Nursing · Parkinson's Disease and Spinal Disorders · Parkinson's Disease Mechanisms and Treatments · Psychology · Voice and Speech Disorders

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