Qualitative research: Online focus Group 1 -
Chronic illness and the social model of disability.

April - May 2018

Purpose

To explore lived experience of impairment and disability with chronic illness across diagnostic categories.

1. Explore disability identity and the barriers to identifying as Disabled.

2. Introduce the social model of disability, especially the distinction between impairment and disability.

3. Explore the nature of disablism experienced by people with chronic illness, including the concept of psycho-emotional disablism, in order to discover similarities and differences with established accounts of disablism. To distinguish whether people with chronic illness encounter a distinctive response from society relating to their impairment.

4. To explore the usefulness of the term “energy-limiting chronic illness” as a construct representing our experiences.

Numbers participating/attending

Approximately 25

Issues/challenges faced

We have had to radically curtail our original research agenda. We had planned six months of focus group activity, with a new topic posted every 2 weeks, covering a wide range of topics reflecting policy areas, and aspects of independent living and citizenship.

Participation was very high and yielded rich discussion. However, we found that after 4 to 6 weeks, numbers dwindled as participants could not sustain the level of input and both researchers experienced health crises at the same time, meaning we were unable to moderate the focus group temporarily.

We took stock of situation and decided to break qualitative research down into more manageable chunks of 6 weeks. And to follow up first focus group with quantitative survey.

Quantitative research - Follow up survey​

July - October 2018

Purpose

To validate the knowledge and experiences collected in the focus group.

To determine whether people who report impairment of “stamina/fatigue/breathing” experience impairment and disablism in similar ways.

To validate the concept of Energy Limiting Chronic Illness as a coherent impairment group, a constituency of the Disabled People’s Movement.

To ask about social problems, values and priorities for action and change among people with ELCI.

Numbers participating/attending

Over 2,250 people

Qualitative research: Online focus group 2 -
Benefits and work with energy-limiting chronic illness
​

September to November 2018​

Numbers participating/attending

Approximately 22 people

Stakeholder engagement​

  • LSE roundtable on improving disabled people’s employment.
  • Business Disability Forum
  • Shaw Trust
  • DWP Community partners
  • DWP WCA reform group
  • White Paper on Social Security project, Warwick University

Purpose

To publicise the aims of the project.

To gauge the response of policy influencers and policy makers to the concept of Energy Limiting Chronic Illness as a constituency of the Disabled People’s Movement and a coherent impairment group requiring specific policy responses.

To assess how to disseminate and present project findings to various stakeholder groups going forward.

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