In the past three or so years, I have led the implementation of a stigma related research in a chronic tropical infectious disease. This was a new perspective in addition to the mainstream biomedical my group does. The nature of the methods being used continue to provide valuable insights on living with the condition. In the quest to understand disease conditions – pathophysiology, pathogenesis, etc., the experiences of the people living with the conditions are mostly neglected.
As a biomedical research assistant with a background in biochemistry, I mounted the mental block against learning qualitative skills for the said project at the initial stages of training. I had to quickly conduct a demolishing exercise so that I can assimilate the new information and skillset – there were fantastic social scientists who made the process enjoyable. Now, a biomedical scientist with some training in qualitative research, I strongly believe that it is necessary for medical research to make ample room for qualitative aspect of projects that involve human participants living with conditions being investigated. Patients are most likely to respond affirmatively to questions on taking their prescriptions. However, a friendly conversation [interview] reveals nuances and provide insights to non-adherence.
The experiences of people living with Parkinson’s disease (PD) extend beyond the genetic, physiology, among other. Since activities of daily living are affected, quality of life will most likely decline. The inability to perform one’s usual tasks due to PD is likely to lead to intrinsic stigma and social isolation which further accentuates the situation. This hypothesis may be best tested with qualitative method including participatory methods such as body mapping and photovoice – engaging people living with PD as co-researchers. As knowledge holders of the condition they live with, these individuals can contribute immensely to improving their own quality of lives.
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@ekaamewu, yes! you highlight a very important gap in research, particularly those dependent on questionnaires (whether ‘validated’ or not). I am also concerned about transferability of research instrument (e.g. a validated quality of life survey that has been used for decades in Westernized countries, would it have construct validity in other geographic regions?) This is one example how qualitative research might inform of gaps in a tool. But additionally, qualitative research is useful for each stage of a quantitative research program with few exceptions. Qual findings can generate novel insights into new hypotheses, how to frame a question, prioritizing research questions, guiding interpretation of findings, and discussing the potential for translation. Anecdotally, mixed methods (qual and quant combined research) seem to be increasingly more common - which I am glad to see. It is something I would like to add to my work at some point.
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Very well, @fbbriggs. Qualitative skills need to be integrated into training of scientist in addition to working interdisciplinarily. I am happy read how enthusiastic you are going into the future.
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Well said @ekaamewu and @fbbriggs ! I went to look in Fox Insight, which we started in large part to better understand the lived experience of people with PD directly from them, and didn’t see much in the way of stigma-related questionnaires.
It might just be the keywords I chose to search, but aside from the ‘Impact of Thinking, Mood, and Motor Symptoms’ questionnaire, nothing really directly touches on feeling a sense of stigma or being ashamed/embarrassed – more on anxiety and loneliness.
If either of you (or anyone else!) has interest in developing a survey for Fox Insight that touches on that, would be happy to speak more about what that might look like/discuss feasibility.
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Yes, I am open to work together with interested parties on this.
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Hi @jgottesman, there is a NEURO-QOL stigma tool (as well as other instruments: see Table 2 here: Neuro-QOL - PMC) that I have worked with, but there are a few others, i.e. Stigma Scale for Chronic Illnesses 8-item version (SSCI-8; The Stigma Scale for Chronic Illnesses 8-item version (SSCI-8): Development, validation, and use across neurological conditions - PMC)
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Hi @ekaamewu , @jgottesman and @fbbriggs
I used the SSCI- 24 scale for my neurology fellowship research paper in assessing quality of life in Parkinson’s disease patients in Ghana
Though not illness specific, in developing this tool, focus groups of adults with Parkinson’s disease, Alzheimer’s, Stroke, ALS and Epilepsy were used.
I am definitely open to developing a survey for Fox insight.
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