The Optimisation of Parkinson's Project

NCT04125485 | Unknown

• 1 other identifier: 48708
• Study Type: observational
• Target: 60
• Locations: 1 country
• Sites: 1

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), healthcare professionals and organisations and community groups, and discuss strategies that could approximate interests of voluntary groups, and patients and families. This will constitute a starting point to propose a transformative framework that incorporates dialogue between sectors and levels of care for better living with PD.

Conditions

Parkinson Disease

Outcome Measures

Primary Outcomes (1)

• Qualitative interviews and qualitative Focus Groups

  We are not using questionnaires or other quantitative outcomes measures in this study, which is a development stage for a future feasibility study. We are using one-to-one qualitative interviews (10 of each participant group) and qualitative Focus groups (x4), and will use an interview schedule which will cover the following; * knowledge, attitudes and perceptions about the available resources and support for people with PD * the community challenges (availability of resources, integration of services, support in care) and the factors that influence roles, working relationships and partnerships between sectors in the management of PD. * use a concentric circles mapping network tool to map out the sources of support in the community. * strategies that could build partnerships between all stakeholders for development of a multi-sectoral action plan. * the relationships with and capacity of voluntary organisations and their role in enhancing the experience of living with PD.

  Through study completion, an average of 6 months

Study Arms (4)

Person with Parkinson's

Inclusion criteria for interview/focus group with people with 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, and at different stages of PD (early, mid, later by years of diagnosis) and ages (younger and older). Exclusion criteria: any hospital admission within the last 1 year, whether for Parkinson's 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.

Healthcare professional

Inclusion criteria for interview/focus group for health professionals: Professionals from 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: Not involved in direct care or support of people with PD or unwillingness to participate.

Family carer

Inclusion and exclusion criteria for all are the same for Interviews and Focus Groups. Family carers: Inclusion criteria: family caregivers of PD patients at different stages (early, mid, late) or friends involved in the care process. Also, family caregivers of patients with cognitive impairment will be included. Exclusion criteria: not being involved in the care of the person with PD or unwillingness to participate in the project, and an ability to speak a conversational level of the English language. Family carers do not need to have the person they care for in the study also and vice-versa.

Stakeholder

Stakeholders: Inclusion criteria: 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). Exclusion criteria: unwillingness to participate in the project or lack of involvement in strategic planning or involvement in provision of community PD care.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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 PD, and organisations and community groups, and discuss strategies that could approximate interests of voluntary groups, and patients and families. This will constitute a starting point to propose a transformative framework that incorporates dialogue between sectors and levels of care for better living with PD.

You may qualify if:

• 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

You may not qualify if:

• 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.

Sponsors & Collaborators

• University of Southampton: lead

Study Sites (1)

University of Southampton

Southampton, Hampshire, SO17 1BJ, United Kingdom

Location

MeSH Terms

Conditions

Parkinson Disease

Condition Hierarchy (Ancestors)

Parkinsonian Disorders; Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases

Study Officials

• Mari Carmen Portillo, PhD,MSc,RN

  University of Southampton

  STUDY CHAIR

• Helen Roberts, PhD,FRCP,MB

  University of Southampton

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: August 19, 2019
• First Posted: October 14, 2019
• Study Start: June 11, 2019
• Primary Completion: March 30, 2022
• Study Completion: September 1, 2022
• Last Updated: October 8, 2021

Record last verified: 2021-10

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)