The Optimisation of Parkinson's Project
- Conditions
- Parkinson Disease
- Registration Number
- NCT04125485
- Lead Sponsor
- University of Southampton
- 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.
- 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 the condition. Through this project the investigators aim to map on a diagram (using a method called concentric circles) what are the lay and professional community resources and systems of support that people with PD use or have available to them in the community. The investigators will also explore ways these resources can be better utilized, and to discuss their personal social preferences. This project aims to gain a deep understanding of these resources and systems of support for people living with PD in the community, carers, stakeholders and healthcare professionals, and discuss strategies that could approximate interests of all stakeholders and professionals. This will constitute a starting point to develop and implement a transformative framework that incorporates dialogue between sectors and levels of care for better living with PD.
The investigators plan to look at knowledge and attitudes towards resources in the community of people with PD carers, stakeholders and healthcare professionals, with a special interest in those living in less advantaged circumstances, such as older people living alone or in less accessible areas. The investigators will map the social support available on circle diagrams (demonstrating varying levels of value of this support) in one-to-one interviews with approximately 10 people with PD, 10 family carers, 10 Stakeholders and 10 healthcare professionals. The investigators will also undertake Focus Groups (n=4) with each of these stakeholder groups. Focus Groups will go over concepts raised in interviews and develop further understanding of priorities and tensions between different stakeholder groups.
Participants will take part in semi-structured interviews, which will begin with using a concentric circles diagram to discuss and map social support networks and availability of support for people with PD and family carers from the perspective of people with PD, carers, stakeholders and healthcare professionals. This will encompass identification and discussion of existing community resources and systems of support. All participants will also be asked to complete a socio-demographic form (e.g. ge, gender, years since diagnosis of PD, working status or organisation and professional role and years in practice).
Individual interviews will be undertaken face-to-face or by phone and will follow a semi-structured interview guide. The mapping element creates a visual map of participant's current social and support network, applying a concentric circles method, which will involve thinking of, and visualising the sources of support or community resources involved in their life as person with PD, carer, community or professional stakeholder or Healthcare professional. Furthermore, participants' social preferences or choices will be discussed in an attempt to understand the potential changes experienced and the utility and appropriateness of community resources.
This process will be facilitated and discussion will take place with the participant.
Participants will be invited to take part in a Focus Group following on from analysis of interviews to go over concepts raised in interviews and develop further understanding of priorities and tensions between different stakeholder groups.
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 60
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Qualitative interviews and qualitative Focus Groups Through study completion, an average of 6 months 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.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
University of Southampton
🇬🇧Southampton, Hampshire, United Kingdom