Patient Activation in Neurorehab
Research type
Research Study
Full title
Patient Activation in a Community Neurorehabilitation Setting: Understanding Patient and Staff Perspectives
IRAS ID
289260
Contact name
Rebecca Roberts
Contact email
Sponsor organisation
University of Oxford/Clinical Trials and Research Governance
Clinicaltrials.gov Identifier
OSF Registration DOI, 10.17605/OSF.IO/FKTGH
Duration of Study in the UK
1 years, 1 months, 27 days
Research summary
People living with neurological conditions (disorders of the brain, spinal cord or nerves e.g. Stroke, Parkinson’s and Multiple Sclerosis) may have a range of medical, physical, cognitive, communicative and psychosocial problems for which they might seek rehabilitation. Rehabilitation is an active, collaborative process between the person living with a neurological condition and a professional and so, effective outcomes require engagement and willingness to take action. A person’s ‘willingness to take action’ can be understood psychologically within the concept of ‘patient activation’ i.e. ‘an individual’s knowledge, skill and confidence for managing their health and healthcare’ (Hibbard et al., 2005). Levels of patient activation have been shown to relate to patient outcomes: the more activated a person with a long-term condition is, the more likely they are to engage in positive health behaviours and effectively manage their health condition (Hibbard & Gilburt, 2014).
This study therefore seeks to understand what factors help or hinder this population to increase in patient activation. Based on service data from the community neurorehabilitation service in Buckinghamshire, the research will investigate whether people within the service do improve, and what factors predict this. The research will then seek to find out more by interviewing five former patients who became more activated during their time with the service, five former patients who did not and five therapists who work in the service. These interviews will be conducted virtually and will last 45 minutes to 1 hour. The results from this research will inform the service as to what changes could be made to help more patients to improve in their activation levels. More widely, it will contribute to the understanding of patient activation in people with neurological conditions and may inform treatment provision within other neurorehabilitation services. The study aims to be completed by May 2022.
Lay summary of study results: Why we did this research
This research wanted to help people with neurological conditions to get the most out of their rehabilitation at the Community Neurorehabilitation Service in Buckinghamshire (CNRS). Previous research has shown that people benefit most from therapeutic interventions when they take an active role in the management of their own health condition (i.e. are ‘activated’). This research sought to understand whether current practices at CNRS help people to become activated and, what more could be done to support patients with this.
What we did
We compared the questionnaire data of 77 patients before and after rehabilitation with CNRS. We also spoke to four members of the therapy team and eight former patients to see what they thought helped or hindered activation.
What we found
Questionnaire data showed that most people who have rehab with CNRS become activated and that this was not affected by factors such as age, diagnosis, wait time or social support.
Interviews with therapists showed the importance of helping someone to approach their difficulties (e.g. helping them to acknowledge fatigue or supporting with emotional difficulties). Therapists also emphasised that they needed to be flexible, allow the patient to take a lead, and help the patient to find confidence and direction.
Interviews with patients showed the importance of wider social support including from others with the same condition. They expressed that the therapist needed to be supportive and collaborative, and that it helped to see the purpose of the rehabilitation i.e. how will this intervention help me with what’s important to me.
Interviews with patients also showed that negative past experiences of services and difficult emotions were important to consider. Feelings of hopelessness or ignoring the problem, isolation and cognitive difficulties seemed to make it harder for people to become activated.
What changed
CRS implemented a number of changes based on the findings of this research:
1. Reviewing the initial assessment to check that all therapists take time to hear a patient’s journey and support them with the emotional side of living with a neurological condition.
2. Ensuring all patients are asked about their past experiences of rehabilitation so that CNRS can avoid repeating previous frustrations.
3. Making sure to connect people with local support groups e.g. Stroke Association/ Parkinson’s UK.
4. Developing a specific intervention for people who struggle with actively managing their health condition.
Conclusions
Neurorehabilitation can help people to become more activated and changeable factors such as emotions, social support and seeing progress and purpose seem to be more important than fixed factors such as age and diagnosis. There is lots that neurorehabilitation services can do to help patients with this, including making sure people are listened to and understood and linking people in with others with the same condition.REC name
West of Scotland REC 4
REC reference
21/WS/0054
Date of REC Opinion
22 Jun 2021
REC opinion
Further Information Favourable Opinion