Developing a protocol and conducting qualitative research to identify what good employment support for people with epilepsy should look like.
1. Aim and motivation
All research related activity commissioned by Epilepsy Action focuses on our strategic goals to:
- Improve the quality and availability of healthcare services for people with epilepsy and
- Improve awareness and understanding of epilepsy
In order to improve awareness and understanding of epilepsy we are commissioning a project to identify what good employment support for people with epilepsy should look like. The aim of this research is to:
- Identify and challenge specific examples of discrimination, prejudice or unfairness relating to the employment of people with epilepsy and
- Identify, celebrate and promote examples of positive action or good practice relating to the employment of people with epilepsy
Existing research shows that:
“Elements identified in association with successful employment were supportive, and knowledgeable, employers and supportive co-workers.” [Bishop 2002]
“Key to employment of disabled people lies with the employer, at least as much as with the disabled jobseeker or employee. Disability is complex and employers are fearful.” [Wass 2016]
To enable people with epilepsy to successfully gain and retain employment, we need to address both:
- The employer knowledge barrier and:
- The ability of managers and co-workers to provide appropriate support in the workplace.
“One of the most critical barriers to employment is the degree of social acceptance or stigma in the workplace.” [Scheid/Smeets 2007]
Epilepsy Action is aware that the literature documenting barriers to employment of people with epilepsy and other disabilities is extensive. We want to commission research that goes beyond documenting:
- Misconceptions, lack of understanding of epilepsy and possible negative stereotypes or stigma
- Practical elements that concern employers, such as the extra costs of hiring someone with a disability or health condition
We are seeking examples of strategies and actions that have been successful in breaking down some of the barriers and changing the way people with epilepsy are perceived and treated in the workplace. It would also be of interest to see examples of good practice from other conditions that could be translated and be useful for people with epilepsy.
For example, researchers at Cardiff University found people with a disability or health condition are unlikely to recognise unfair treatment or discrimination because of their disability or health condition. They are therefore either unaware of, or don’t ask for, adjustments they are entitled to in the workplace.
It would be of interest to Epilepsy Action to see examples of support available to people with epilepsy, to assert their own rights.
2. Call for a research collaborator to lead work to identify what good employment support for people with epilepsy should look like
We are now seeking a qualitative researcher or researchers, skilled in social research, to develop a protocol and conduct a piece of research to address:
- What information from a prospective employee with epilepsy would enable recruitment by/reassure an employer
- What should good employment support for people with epilepsy look like? Including changes to shift patterns, content of work, lone-working; do equality and diversity policies mention employees with long-term chronic health conditions like epilepsy?
- Why epilepsy is different from other conditions, in terms of support into employment?
- What epilepsy has in common with other long-term conditions, in terms of support into employment
- What impact could be achieved with good employment support (for example, people with epilepsy are more confident or work ready)?
- How can charities that support people with epilepsy and other conditions work with and influence employers?
The results from this project will assist Epilepsy Action in developing an employer support strategy and producing useful resources for employers. This will ensure good support for people with epilepsy going into employment.
Epilepsy Action will seek to have the results from this piece of research published.
The researcher(s) should:
- Obtain ethical approval
- Develop a research protocol and propose an approach to accessing a range of employers and employees in both public and private sectors
- Conduct appropriate field work to uncover good practice and answer the six questions above
- Provide reports to publication standard
We would welcome suggestions for anything else that should be included in the study from the qualitative research perspective.
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 final write up.
4. Researcher experience
Experience of completing qualitative research studies is required.
Experience of epilepsy research is not 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 May 2018 and final reports sent to Epilepsy Action by 30 November 2018.
Completion to publication standard is expected by January 2019.
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 12th March 2018
Proposals should include:
- A description of your approach to this work
- A timeline demonstrating completion to publication standard by xxxxx
- CVs demonstrating the experience of the proposed researchers
- A breakdown of the costs
Bishop, M.,2002.Barriers to employment among people with epilepsy: report of a focus group. J. Vocat. Rehab. 17 (4), 281–286
Chen Mun Wo et al ‘Employability in people with epilepsy, a systematic review’ Epilepsy Research, 2015, vol 116, pp67-78
Scheid..Smeets et al ‘Epilepsy and Employment literature review’ Epilepsy & Behaviour, 2007, vol 10, pp354-362
Victoria Wass ‘Disability Employment Gaps and Evidence Gaps’ ‘Closing Disability Gaps at Work conference, Cardiff University, London 13.12.16
Ralph Ferve ‘Are employers discriminating by default’ Closing Disability Gaps at Work conference, Cardiff University, London, 13.12.16