Status:
UNKNOWN
The Optimisation of Parkinson's Project
Lead Sponsor:
University of Southampton
Conditions:
Parkinson Disease
Eligibility:
All Genders
18+ years
Brief Summary
This project aims to gain a deep understanding of the available lay/professional community resources and systems of support for people with, and family carers of people with Parkinson's Disease (PD), ...
Detailed Description
From previous research the investigators know that living with PD depends on several factors including the acceptance of diagnosis of PD management of symptoms and social support for the person with t...
Eligibility Criteria
Inclusion
- Inclusion criteria:
- Person with Parkinson's (PD)
- People with PD living at home,
- Hoehn \& Yahr stage 1-4 (Hoehn and Yahr, 1967),
- Cognitively able to participate,
- Able to speak a conversational level of English,
- Different stages of PD (early, mid, later by years of diagnosis)
- Ages - younger and older.
- People with PD do not need to have their carer involved in the study also and vice-versa.
- Family carer
- Family caregivers of PD patients at different stages (early, mid, late) or friends involved in the care process.
- Family caregivers of patients with cognitive impairment will be included.
- Family carers do not need to have the person they care for in the study also and vice-versa.
- Stakeholders:
- Non-NHS professionals or volunteers involved in policy making or working or collaborating in voluntary organisations or from different sectors; (non-NHS) Health Care, Social Services, voluntary sector, employment, food, Pharmaceutical, Education, Political, that have an impact directly or indirectly in the management of PD and development of care pathways for PD or other long-term conditions (when relevant).
- Healthcare professional
- From a range of different disciplines (physician, neurologist, General Practitioners nurses/specialist nurses, social worker, occupational therapist, mental health workers, physiotherapist, pharmacist, speech therapist) that provide support directly or indirectly to patients with PD and family carers.
- Exclusion criteria:
- Person with Parkinson's (PD)
- Any hospital admission within the last 1 year, whether for PD or anything else, that was for more than 24 hours i.e. not day surgery/brief checks in the emergency department after falls;
- Patients diagnosed with PD less than 6 months ago to confirm the diagnosis and allowed them to have time for using the resources for people with PD
- Unwillingness to participate.
- Family carer
- Not being directly involved in the care of the person with PD
- Unwillingness to participate in the project
- An ability to speak a conversational level of the English language.
- Stakeholder
- Unwillingness to participate in the project
- Lack of involvement in strategic planning or involvement in provision of community PD care
- Healthcare professional
- Not involved in direct care or support of people with PD
- Unwillingness to participate.
Exclusion
Key Trial Info
Start Date :
June 11 2019
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
September 1 2022
Estimated Enrollment :
60 Patients enrolled
Trial Details
Trial ID
NCT04125485
Start Date
June 11 2019
End Date
September 1 2022
Last Update
October 8 2021
Active Locations (1)
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1
University of Southampton
Southampton, Hampshire, United Kingdom, SO17 1BJ