The First Steps pathway for taking control after a diagnosis of Parkinson’s: a feasibility study


Study ID: 35346
Short Title: First Steps
Organisation: University Hospital Southampton NHS Foundation Trust
Location: Southampton General Hospital
Condition: Parkinson's disease
Main Specialty: Neurological disorders
Expected End Date: 11/06/2018
Postcode: SO16 6YD
Contact Name: UHS Research Team
Contact Email: R&Doffice@uhs.nhs.uk
Active: Yes

Inclusion Criteria

Adults with diagnoses of with Parkinson's within the previous 12months.

Exclusion Criteria

1) severe depression or psychosis, or


2) reduced cognition that would preclude active involvement and capacity to consent to participate,


3) unable to understand English

Study summary:

People with Parkinson's (PwP) report being diagnosed as devastating and could be better handled with a subsequent reduction in stress and anxiety for those affected and their families. Stress and anxiety have been highlighted as one of the top 10 research priorities for PwP (James Lind Alliance) with the need for improvement in the Information those newly diagnosed receive. This research is to evaluate the ‘first step program’, for taking control after diagnosis, which has been developed by PwP for PwP. The program has been piloted, supported by Parkinson’s UK, and now is being implemented in Oxfordshire and Hampshire. Adults with diagnoses of Parkinson's within the previous 12months, will be invited to attend the program and be offered the opportunity to take part in the research. It will be made clear to individuals that taking part in the program is not dependent on them taking part in the research. The program will take place in suitable community venues in Oxfordshire, Hampshire or Surrey (when the program becomes available). Currently the Oxfordshire program runs out of Witney Lakes Resort. The first step program consists of 2 workshops over a 6 week period. The workshops are delivered by pwp who provide information on how to face the future positively, address fears and misconceptions and how they can help manage the condition themselves. Those taking part in the research will be asked to take part in assessments delivered over the phone. The EPIC Questionnaire will be completed at their convenience either through post or by completing online. Assessment will take place before starting the program (baseline) and at 3months and 6months. At assessment we will asks questions about health, wellbeing and activity, using standard questionnaires. People’s experiences of the program and the research will also be asked. All people taking part in the research will have the opportunity to receive the program, however, delivery of the program will begin when available in that area.


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