Developing a protocol and conducting an appropriately powered random-stratified sample of the UK population, to measure changing public attitudes to epilepsy and people with epilepsy.
1. Aim and motivation
Some people with epilepsy feel they are being prevented from living an ordinary life due to stigma resulting from negative attitudes of the general public towards epilepsy and people with epilepsy. Some researchers have suggested this may be an internal perception rather than widely enacted discrimination.
Epilepsy Action has a goal to improve awareness and understanding of epilepsy. We also aim to reduce stigma and the psychosocial impact of epilepsy.
We want to be able to track changing public attitudes over time. Initially, we want to produce a baseline position, using a valid measure and method that can be replicated at future time points.
The results from this project will assist Epilepsy Action in planning future work.
2. Call for a research collaborator to lead work to establish a UK longitudinal survey of public attitudes to epilepsy
Epilepsy Action has permission to use the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale, developed by the US Centers for Disease Control and Prevention (CDC), Atlanta, USA.
We are now seeking a quantitative researcher or researchers, skilled in statistical analysis, to develop a protocol and conduct an appropriately powered random-stratified sample of the UK population, using the ABLE scale.
The results will provide a 2018 baseline understanding of public attitudes to epilepsy and people with epilepsy.
Epilepsy Action will seek to have the results from the public attitudes survey published.
The researcher(s) should:
- Obtain ethical approval
- Capture responses to the validated tool
- Capture additional demographic and epilepsy knowledge based data
- Provide statistical analysis of the data
- Provide reports to publication standard
The methodology should be capable of replication at future points, for example every 5 years.
The appointed researcher must agree the research methodology to be used, with Epilepsy Action and its chosen advisors, BEFORE work commences. In line with normal protocol, the methodology will be included in the write up of the final synthesis review.
4. Researcher experience
Experience of statistical analysis and completing quantitative research studies is required.
This work could be undertaken by a research assistant, assisted by a more experienced researcher for the analysis.
Experience of epilepsy research may not be necessary, provided the researcher is willing to undertake epilepsy awareness training and to seek input from an appropriate clinician.
The project is expected to start in March 2018 and final reports sent to Epilepsy Action by 3 September 2018.
Completion to publication standard is expected by December 2018.
Epilepsy Action has a budget of £20,000 for this work.
Proposals outlining your approach, personnel and costs should be submitted to firstname.lastname@example.org before 19 January 2018.
Proposals should include:
- A description of your approach to recruitment
- A proposed survey method
- An approach to the statistical analysis
- A timeline demonstrating completion to publication standard by December 2018
- CVs demonstrating the experience of the proposed researchers
- A breakdown of the costs
Diiorio CA1 et al. Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy Behav. 2004 Dec;5(6):965-75.
Kobau R1 et al. Further validation and reliability testing of the Attitudes and Beliefs about Living with Epilepsy (ABLE) components of the CDC Epilepsy Program Instrument on Stigma. Epilepsy Behav. 2006 May;8(3):552-9. Epub 2006 Feb 23.
Wanjun Cui et al. Recent changes in attitudes of US adults toward people with epilepsy - Results from the 2005 SummerStyles and 2013 FallStyles surveys Epilepsy & Behavior 52 (2015) 108–118.