PhD Project - Co-designing a physical health education programme for people newly diagnosed with Parkinson’s Disease: a mixed methods study

Lay Summary

Background to the research: Parkinson’s Disease (PD) is a common neurodegenerative disorder characterised by motor and non-motor symptom which progress over time and impact negatively on a person’s quality of life. The benefits of exercise and physical activity for people with PD are extensive and well documented. Like in other chronic conditions, people with PD, need to be equipped with the skills and knowledge to effectively manage the demands of a chronic condition. Education of people with PD and their caregivers around the importance of physical activity and exercise, is probably one of the most relevant parts of PD management and national guidelines recommend is provided around the time of diagnosis. Despite this, education programmes addressed to people who are within the first year of diagnosis are rare, especially those which focus on exercise and physical activity.

Aim of the research:

  • To determine the level of PD specific knowledge and attitude towards exercise and physical activity in people with PD across the disease trajectory.
  • To identify the exercise and physical activity training needs of people with PD around the time of diagnosis and map the current education and information provision around physical health education for this group
  • To co-design a programme that will emphasise those topics and will be tailored towards newly diagnosed people with PD.

Methods and design: This is a cross-sectional mixed methods study utilising surveys, semi-structured interviews and focus groups to address the research questions. The first phase of the study includes two different online surveys, one for people with PD and the other addressed towards healthcare professionals working with people with PD. Semi-structured interviews with people with PD will explore further on the education needs of people with PD around the time of diagnosis. The data gathered from the surveys and interviews will be analysed and their findings will be discussed in focus group discussions attended by people with PD and healthcare professionals to co-design the content of the physical health education programme from the perspective of all stakeholders.

Deliverables: This study will draw on the knowledge gaps, education needs and education preferences around exercise and physical activity, of people with PD, living in the UK. We worked closely with the Patient and Public Involvement group to develop the surveys and interview guides and will continue to ask for their input during the different phases of the project. We will work with people with PD and healthcare professionals to co-design the content of a physical health education programme to ensure the programme represents the training needs and preferences of people with PD.

Dissemination: We will share our learning and experience during each phase of this 9-month project with all stakeholders involved. This will comprise newsletters, presentations, and peer-reviewed journal publications.

Recent Activity

  • First Advisory Group meeting, including people with Parkinson’s and expert Clinicians Academics and Researchers who work with people with Parkinson’s, completed in May. Members were briefed in preparation of the study commencing.
  • Ethical approval has been obtained. Surveys are active and we are recruiting for the semi-structured interviews.

Timeline of project

March - April 2021 : Draft study materials (surveys and interview guides) and request input from PPI

April - May 2021: Finalise study materials and apply for ethics approval

July -September 2021: Send out surveys and run interviews

September – October 2021: Analyse data and draft findings report

October 2021: Discuss data report with advisory group and draft focus group discussion guidelines

October 2021 -January 2022 : Run Focus group discussions and co-design education programme

February - March 2022: Finalise education programme and present findings to all groups involved

A summary of the findings for each stage will become available on this page.

People Involved

PI: Dr Louise Lafortune

PHD Researcher: Ledia Alushi


Ledia Alushi, University of Cambridge