Disbelief and Disregard project update: September 2022 

A quick update on the project as we have been working on it for 5 months. What have we been doing in that time? 

The project started with the webinar ‘Challenging Disbelief and Disregard in relation to Health, Medicine and Disability’ in May.  

Since then we’ve had three strands of work ongoing: 

  1. We’ve been analysing the data from the survey that Chronic Illness Inclusion carried out. Across the 14 qualitative questions and over 800 respondents, we have around 195,000 words to analyse. The way we’re doing this is through a process called coding. This is where you identify particular themes and subthemes in the answers people have given and associate answers with those themes. We have 9 themes in total and many subthemes beneath those. They include accounts of disbelief, disregard and medical gaslighting and the impacts of these; issues and problems in the patient pathway including diagnosis, treatment and access to domiciliary care; challenges in access to benefits, welfare support and reasonable adjustments at work; and the ways that chronic illness experiences are also inflected by ableism, sexism, racism and other axes of oppression; amongst others. Reading through the data and learning of people’s stories is deeply moving and we are incredibly grateful to everyone who shared their experiences. We hope we can do these stories justice as we move towards writing about them. 
  1. We’ve been working on literature searching, reviewing and collating a collection of other research that overlaps with this project. This includes work from many different disciplines, including disability studies, medicine, sociology, social policy, geography, public health, nursing, physiotherapy and many others. We’ve been really lucky to have two outstanding student interns from Hope University working on this with us, many thanks to Abigail Lavers and Charlie Shenton for all their work on this. 
  1. We’ve been contacting people to form an advisory group for the project. This group consists of people who have expertise (lived, research, professional or a combination of those) in chronic illness. The advisory board will take a look over a draft of the report when we have one and will help us make sure that what we’re writing is relevant to people beyond the project team. 

That’s it for now. We’ll update again once we have finished the analysis and have made progress with the report. 

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