Steady Together

  • Research type

    Research Study

  • Full title

    Feasibility study of a a falls-based self-management guide for people with Parkinson's disease and their informal caregivers

  • IRAS ID

    221022

  • Contact name

    Helen Roberts

  • Contact email

    hcr@soton.ac.uk

  • Sponsor organisation

    Southern Health NHS Foundation Trust

  • Clinicaltrials.gov Identifier

    NCT03111472, ClinicalTrials.gov Identifier

  • Duration of Study in the UK

    0 years, 11 months, 31 days

  • Research summary

    Parkinson’s disease is characterised by slowness of movement, a feeling of stiffness and shaking. Amongst people with Parkinson’s, falling and memory problems are both very common, and increase with frequency and severity as time progresses. Those with memory problems are at increased risk of falling.

    The majority of people with Parkinson’s live in their own home with a relative, who often plays a significant role in helping them with activities such as washing, dressing, cleaning and cooking. These relatives are often referred to as ‘informal caregivers’. Informal caregivers of people with Parkinson’s have reported that they feel unsupported in their caregiving role; this often results in significant levels of depression and stress, with higher levels in caregivers of people who fall or who have memory problems.

    Previous studies of interventions for people with Parkinson’s have rarely been able to reduce the frequency of falls. However, they have shown promise in their ability to improve a patient’s sense of well-being, or their quality of life. Many of these studies have not included participants with memory problems, and they have rarely looked at the effect on caregivers. Increased involvement of people with Parkinson’s in their care has been shown to improve overall patient satisfaction. We will distribute a self-management guide for people with Parkinson’s who fall, and their caregivers, and will seek feedback about its content, usability, acceptability and format after a period of three months. We will include participants with memory problems, and will also study the effect that the guide has on caregivers. Our study will provide a preliminary assessment as to whether the guide has any impact on the sense of well-being (quality of life) and concerns of falling in people with Parkinson’s, or on the difficulties that caregivers experience in relation to their caregiving role.

  • REC name

    South Central - Oxford C Research Ethics Committee

  • REC reference

    17/SC/0488

  • Date of REC Opinion

    13 Dec 2017

  • REC opinion

    Further Information Favourable Opinion