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Involving stroke survivors in the planning of a research project

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Stroke Advisory Group

Glasgow Caledonian University

Project summary

This is a 4-year project relating to the long term (over 18 months post stroke) consequences and recovery from stroke. Stroke survivor involvement was central to the planning of this project and from the outset the team sought to ensure that the views, opinions and advice of long term stroke survivors were reflected in the planning of all aspects of the project. In order to involve a representative group, 5 long term stroke survivors (Stroke Advisory Group) were brought together through established contacts with local stroke groups, clubs and patient/carer consultation groups. The group have provided valuable insight into the best ways of enabling stroke survivors to participate in the research, regardless of stroke related impairment, by drawing on their own and also that of other stroke survivors’ experiences. Involving stroke survivors in the planning of the research has enhanced and provided credibility to the project methods. The Stroke Advisory Group will continue to be involved throughout in order to achieve optimum quality within this area of long term stroke research.

  • Audience
    • The key audience for the results of this project will be stroke survivors, carers and health professionals working within long term stroke care. The results of this project will also be relevant to researchers in the field of stroke care.
  • Purpose
    • The main purpose of the project is to explore the research question which was in the top 10 research priorities agreed in a recent James Lind Alliance Priority Setting Project relating to life after stroke. This question was number 2 in the list of shared priorities of stroke survivors, carers and health professionals and was the top question for stroke survivors. A programme of work has been designed with the aim to ‘unpack’ this complex question “How can we help people come to terms with the long term consequences of stroke?” The aim is to ensure that the involvement of long term stroke survivors is central to all aspects of the planning of this research, in order to enhance its quality and credibility.
    • This was clearly a complex question which could not be answered by one stand-alone project. As this question was generated and prioritised by stroke survivors, it was essential that stroke survivor involvement should feature highly in the research addressing this question. Stroke is a complex health condition with associated impairments that can be wide-ranging. These can include disabilities involving mobility, vision, communication, cognition and fatigue. Stroke survivors can also experience emotional lability, depression and lack of confidence. The members of this group are long term stroke survivors and not had involvement in public/patient involvement research projects before, therefore providing a fresh, unbiased approach. This group has active involvement throughout the project, ensuring that long term stroke survivors collaborate in the effective planning of research throughout. The level of involvement will be decided by the group during different stages of the project. To date the collaboration with the Stroke Advisory Group has resulted in successful NHS ethical approval, where the group had considerable input into the design of patient information leaflets. Currently the group are involved in piloting and refining data collection methods for the first phase of the project, with further involvement intended for future stages of the research. Phase 1 of the project is now complete. The Stroke Advisory Group have continued to not only to provide advice and guidance but one member organised and assisted with the recruitment and implementation of a project focus group. Another member co-presented with Bridget at a National Stroke conference and spoke about his experiences not only as a long term stroke survivor but also as a member of the research team. This project has therefore afforded the Stroke Advisory Team members with opportunities to become involved in the research process at every stage.
  • Planning
    • The project is designed to produce well-planned, relevant research through consultation with stroke survivors. To date meetings have been held every 3 to 6 months at an easily accessible venue. Group members were initially approached because they reside within a similar geographical area meaning that the travel costs were met by the researcher/s. This ensured that best use was made of the Stroke Advisory Group’s time with the minimum impact on fatigue through unnecessary travel. The project budgeted for a comfortable venue with all necessary accessibility, resources and refreshments available. Prior to every meeting a time scale and agenda was agreed by the group and meetings were planned weeks in advance to give group members adequate time to prepare. An evaluation was recorded following each meeting that was agreed upon by all who attended, including any follow-up thoughts and ideas that were subsequently communicated by email or telephone. The success of these meetings was demonstrated through 100% attendance by the group and through their continuing enthusiasm to be involved in the research. The Stroke Advisory Group are given regular updates on the progress of the research plan by email and post, with emphasis being afforded to the effect of their input and advice. The group therefore recognised that their unique insight into stroke and their contribution as collaborators was invaluable.
  • Mutual benefits
    • The Stroke Advisory Group consists of five motivated and enthusiastic long term stroke survivors, all of whom experience varying stroke related impairments. The evaluation of meetings and activities indicated that they gained valuable experience whilst working alongside members of the research team, found meetings stimulating and interesting and that they remain enthusiastic in their support for further involvement in stroke research. Their personal experience of the long term consequences of stroke mean that they have a greater understanding than researchers or health professionals of the potential barriers to stroke survivor participation that may exist, and how best to overcome them. The Stroke Advisory Group’s unique perspective enabled the research team to review the design and methods to better suit stroke survivor participation. This resulted in, for example, a more innovative approach to the Participant Information sheets, participants being offered the opportunity to be involved in more than one aspect of the research if they wished and some modification in the design of focus groups to ensure they carry as little risk as possible of causing upset or distress. Consequently their input had a positive impact on the researchers’ approach towards enabling stroke survivors to participate fully and should be reported on and adhered to in the planning of future projects. This project aims to ensure that stroke survivor involvement remains central to the planning of all aspects of the research; contributing to its quality and validity. Thus far this principle has resulted in the achievement of mutual benefit to group members, researchers and the planned research.
    • The development of the Stroke Advisory Group has resulted in innovative and creative ideas being implemented within the planned research. Stroke research has previously focussed upon enabling people with communication problems (or aphasia) to participate through the use of “aphasia-friendly” materials, including separate Participant Information sheets and consent forms. The group felt strongly that no group should be marginalised due to impairment and the information sheets/consent forms were therefore designed to suit all stroke survivors, including those with communication problems. They chose suitable graphics, wording and layout and, following consultation with speech and language therapists, this has resulted in materials that the group feel can be of use to all potential participants. The research involves a complex two-phase process, previously shown on two separate information sheets. However the group felt that information sheets should illustrate the project as a whole, giving potential participants the opportunity to consider taking part in both phases; this change has been implemented. The Stroke Advisory Group piloted a focus group that aims to elicit the views and opinions of stroke survivors and health professionals relating to stroke through the viewing of videos showing stroke survivors discussing their recovery. The group advised on the suitability of the time and concentration involved for the participants, paying special attention to those factors that may be of sensitive nature and could possibly cause distress or upset. The videos were subsequently adapted to a suitable length and content, with new footage of a more appropriate and less upsetting nature being produced where required. There has been an effective collaboration with the Stroke Advisory Group and given consideration to their insightful views so that the research can enable stroke survivors to participate as fully as possible.