ArticleHealth expectations : an international journal of public participation in health care and health policy2019
Improving patient-centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of "off" periods.
Article in Health expectations : an international journal of public participation in health care and health policy, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
10 citing papers in PubMed, 21 citations in OpenAlex.
- Holding back in communications with clinicians: Patient and care partner perspectives in Parkinson's disease.PEC innovation · 2024Article
- A Qualitative Study on Perspectives of Parkinson's Disease Medications: Insights from Patient Focus Groups.Patient preference and adherence · 2024Article
- Real-World Experiences of Parkinson's Disease OFF Time and Role of Demographics.Journal of patient-centered research and reviews · 2024Article
- Living with Parkinson's disease: disease and medication experiences of patients and caregivers.International journal of qualitative studies on health and well-being · 2022Article
- Parkinson's Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers.International journal of environmental research and public health · 2021Article
- Impact of Off Periods on Persons With Parkinson Disease and Care Partners: A Qualitative Study.Neurology. Clinical practice · 2021Article
- How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study.Journal of medical Internet research · 2020Article
- Improving patient-centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of "off" periods.Health expectations : an international journal of public participation in health care and health policy · 2019Article
- The experience ofClinical parkinsonism & related disorders · 2019Article
- Communication About OFF Periods in Parkinson's Disease: A Survey of Physicians, Patients, and Carepartners.Frontiers in neurology · 2019Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 2 countries.
Funding
Abstract
objectiveThis study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of "off" symptoms.
methodsDuring 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.
resultsA 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.
conclusionBy 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.
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Registered trials
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