Stigma and chronic disease

Stigma and chronic disease

by Yasin Fatine -
Number of replies: 4

Since Sam has covered obesity very well, I thought I'd go more general and focus on stigma.

Much research has already been done into society's response towards mental health especially, and that stigma can have adverse effects on a person's well-being. It has been found that underrecognition does occur when it comes to identifying stigma, and pieces of research on the topic are usually restricted to one circumstance (mental illness, AIDS, obesity etc), and measure one outcome (earnings, social inclusion, self esteem).

Research should ideally be done to produce a scale and categorise all chronic conditions based on how much stigma they receive. By using a mix of qualitative and quantitative data collection, it could be determined if the problem is widespread, and in what scenarios, thereby identifying where possible future action can be targeted.

The interview would happen before/after GP appointments, with the option to follow them up to see if perceptions of stigma have changed with time. Ideally, access to information of the patient's demographics through GP records would allow analysis of variations in age and gender etc.

Much of the interview will be driven by the responses to the previous questions, so if the patient does not believe there is stigma, there may not be much need to ask further questions.

Objective: To provide a clearer understanding of how widespread stigma is in society, producing a quantifiable scale based on chronic disease suffered, and effect it has on personal life.

Research question: Which chronic diseases receive the most stigma?

Questions:

- What condition/s are you suffering from? How long have you had this for?

- Do you feel society treats you differently because of your condition? [Scale from 'very well' to 'very badly']

- Has this had an effect on how you carry out your daily life activities? If so, how much? [scale]

-Could you describe any specific cases of when you were discriminated against because of your condition? Where did it happen? [etc.]

- Do you think your family has been affected by how you have been treated by society?

- Have you experienced any discrimination by health workers because of your condition? [scale and description of events]

- How much do you think society can change its perspective towards your condition? [scale, but probably may be influenced by patient's mood/personality]

- Can you think of anything that would change society's perspective towards your condition?

In reply to Yasin Fatine

Re: Stigma and chronic disease

by Lucy Caroline Eastgate -

Hi Yasin, I like this idea as a route to forming ideas to challenge stigma. Have you thought about maybe splitting the research, half toward a cohort with chronic disease and half toward a cohort without, who could give insight toward attitudes toward chronic disease rather than just personal experience, which could be a little subjective? Maybe involve healthcare staff/clinicians in the research? Also, do you think it would be easier to focus on a set list of diseases? I don't know if this is helpful and would be intersted to know what anyone else thinks.

In reply to Lucy Caroline Eastgate

Re: Stigma and chronic disease

by Yasin Fatine -

Hey Lucy, including people without chronic disease would be a good idea, but because stigma is only experienced by the person suffering from the disease (if at all; well that's what hopefully the research can answer), would the views from those not experiencing the disease really count towards much? Unless they are family members of participants perhaps. The same thing with clinicians; in order to appear 'legit' to the researchers, would they answer the question in such a way as to make them appear more 'favourable'? But it would be interesting to compare responses, and perhaps show a disparity between how the clinicians feel they are treating the patients and what the patients think (assuming the data is quantitave).

I was thinking of having a set list of diseases, but because I don't know which have the most stigma associated, I thought there could be an initial 'phase' where a number of patients were interviewed, and using data collected, determine which don't 'count' and afterwards only focus efforts on patients with specific diseases that did have significant data, but I suppose that would depend on numbers in this initial phase. I don't know if that's exactly allowed in research world, but anyway thank you Lucy!

In reply to Yasin Fatine

Re: Stigma and chronic disease

by Storm Parker -

I like this idea of doing an scaling study of stigma of all chronic diseases. Would this study be open to all patients with chronic diseases, or those with chronic diseases that are already known/though to be stigmatised?

It may be necessary to expand on how it affects their daily lives, especially for patients with life-long conditions that have adopted an attitude of 'just getting on with it'. For example, does it affect their ability to work/learn, their interactions with others, transportation etc.

It's interesting that your study includes stigma from health workers as well as the general public- it may be important to consider the effect that conducting the study before or after the GP appointment will have on this. For example, if a patient felt frustrated with the lack of curative treatment from their GP, they may translate this into perceived stigmatisation of their condition?

In reply to Yasin Fatine

Re: Stigma and chronic disease

by Deleted user -

I find your research pretty interesting to understand how widespread stigma is in society.I am wondering if you want to make these interviews face-to-face and if you want to study all the chronic diseases, because I think this will cost you too much time. Hence, I agree with Lucy to focus on a set list of diseases.

In addition, Lucy's idea of interviewing healthcare staff/ clinicians would be very interesting, because you could see from a different and more objective point of view the phenomenon of stigma.