Thanks for this topic.
I am a researcher working in the field of disability and I often ask myself whether my research does take into consideration the real experience of disability. It is probably easier to talk about disability than understanding it. This is why I really value current trend in participatory design that advise researchers to never loose sigh on what matters to people and what they experience.
I look forward to reading what other users will post here...
thanks for your reply. I am curious to hear others' opinions, too.
I think it's great that you as a researcher make the effort to get in touch with people who are affected by a disability. And I was very happy to read that there's a current trend in parcipatory design - that's great! We need more of that!
One thing that I'd really like researchers and doctors to hear and read is: Please always see the individual person, and please don't automatically assume any psychologic deficiencies. Please see and value our strenghts and experiences, and listen to our stories. Please let us take our own informed decisions and help us to do so by providing unbiased information. Please believe us, and please value our self-view.
Living with a disability can mean being viewed with a focus on deficiencies (which can go hand in hand with bias), being belittled, not being taken seriously, not being heard and not being believed. It means being dependant on medical professionals, and this is a setting of imbalance of power. It's so important to be allowed to take one's own decisions, to be respected, in this situation - because imbalance of power and lack of respect is a very bad combination.
I think it would be necessary to have a look at some of the older diagnostic questionnaires that are still in use and examine if they promote bias and a deficiency-oriented view. For example, I think the SF-36 does so and isn't adapt for use with patients with a chronic disability. Several questionnaires regarding chronic pain do so, too. Please discern throroughly between physical symptoms, participation and psychological health. Don't automatically assume any causal relationship, don't underestimate our resiliency.
Actually, resilience in patients with a chronic disability would be a very interesting field of research. I know many patients who say: "Of cause I'd like my health back. But what I've learned through this - I'd never want to give that back".
All the best,
It is really nice to read that you are interested in what is going on in research. We also very much appreciate your view and recommendations concerning how individuals with an impairing (physical) condition should be perceived by physicians and researchers. It is always important to be aware and value strengths, experiences and knowledge of these individuals.
You are right, resilience in individuals with a chronic condition is an important and growing field of research. To date, extensive literature can be found on the buffering effect of resilience on the likely negative consequences of adverse life events such as bereavement, divorce, or natural disaster but barely on health conditions. These studies are showing that the majority of individuals react resilient in the face of adversity. But there are also individuals reacting with a drop of well-being after the event and slowly recover, and others do, unfortunately, not recover.
We are currently preparing a study about the impact of a chronic health condition on well-being. The onset of a chronic condition can have a severe impact on individuals’ life. Nonetheless, people react differently. Some individuals experience a longer phase of being not so happy, others are able to get well soon after the onset or diagnose of a chronic condition. In other words, they show resilience; resilience broadly refers to a positive adaptation in the context of serious threats to an individual’s life or function.
A strength of directing more attention towards resilience, as opposed to focusing exclusively on the deficit, is that it captures the whole spectrum of possible reactions to adversity. We are interested whether there is something external (e.g., social support by family or friends) or internal (e.g., spirituality) of the person influencing the reaction following the onset, and if so what is it?
At the end of the year, we will have results and we are going to communicate them as soon as possible in a scientific journal and possibly also provide a lay summary in a journal such as Paraplegie or Paracontact. If you are interested about the results let me know so I can inform you know when there is a publication. So we have a highly interesting year of research ahead of us
You were mentioning in your post that you know many patients who don’t want to miss what they learned out of their physical condition. This reminded me of an article about post-traumatic growth, you might be interested in.
Thank you again for your feedback. In general, we as researchers really appreciate feedback like yours. Getting feedback from persons who are directly affected helps us a lot.
All the best,