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Thread: Research/Designer & Daughter of SLE Mom

  1. #11
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    You really do have a great idea, especially for the generation who grew up with technology. Im 20 and practically live online so I really do hope your allowed to continue you research on WHL. Also, if the moderators don't allow this then i'll be more than happy to provide you with my personal email for your research.

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    Thanks for passing it on Rob, I appreciate it.
    Desley: Thanks, I do indeed have an informed consent form prepared through the university, one for online surveys and a paper/electronic one for other applications. I could forward it if I do get the go ahead to discuss it here.
    I have given my mom an email format consent form to reply to as an affirmative to being included and I'll likely walk her through how to reply on the phone
    Participants can also remain anonymous, I recently did a co-creation project with an 8 year old boy and his parents who remained anonymous but helped us to design a game for him for phonetic learning with dyslexia. It was a terrific outcome and when we were done we gave it to him because we all had a such a blast with it

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    Thanks Mica, I'd appreciate your input
    I think an app could prove very helpful, especially on a touch screen device because I've been researching the use of touch screen devices and found people with arthritis find them easier to use. They dont require a lot of pressure to operate and the texts or buttons can be made as large as needed to work well. I know my mom has a fair bit of trouble with her hands now and then and anything that would make interacting and operating it easier would be great.

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    Another thought we have a lot of our Family here some diagnosed with Lupus and some not yet diagnosed. Discuss with your supervisor as I think you may be wise to limit your research target group to Lupus Diagnosed as this will give more validity to your research.
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Quote Originally Posted by Desleywr View Post
    Another thought we have a lot of our Family here some diagnosed with Lupus and some not yet diagnosed. Discuss with your supervisor as I think you may be wise to limit your research target group to Lupus Diagnosed as this will give more validity to your research.
    There can be no differentiating between members of our family. Here, on WHL, we are a family and we are here for people in all stages of diagnosis and even those with other AI disease. I know the letters have been sent off to Susie however I can say beyond a shadow of a doubt that if this research is not open to all members of our community it cannot be sanctioned by, or be a part of, WHL.

    We will be back with Susie's and the management answer as soon as we have one.
    Mari

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    ~Winston Churchill~







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    Yes I totally see what you say our Family is what makes this group so unique. I was pointing out to the researcher a research issue that she might consider for the validly of her research no intension for any inclusiveness against this group and members. I am sorry if that if is how it came across in no way was this my intension!

    When I joined this group the main thing that separated this wonderful group from others is that it is so inclusive. I can not appreciate this inclusiveness enough this principle has been such a support for myself and many others.

    I am sorry if I have offended anyone!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Quote Originally Posted by Desleywr View Post
    Yes I totally see what you say our Family is what makes this group so unique. I was pointing out to the researcher a research issue that she might consider for the validly of her research no intension for any inclusiveness against this group and members. I am sorry if that if is how it came across in no way was this my intension!

    When I joined this group the main thing that separated this wonderful group from others is that it is so inclusive. I can not appreciate this inclusiveness enough this principle has been such a support for myself and many others.

    I am sorry if I have offended anyone!
    No no no. You didn't offend. I was just making a point and I understood yours as well. There really is nothing to say until we here from the higher ups
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    Desleywr (02-01-2012)

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    Bobbi,
    Also keep in mind that many older members, like me, might not have a smart phone or a touch screen device. I would most appreciate an app that I could download and use on my little old Dell laptop.
    Hugs,
    Marla

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    steve.b (02-01-2012)

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    bobbi, i do not have a smart phone either.
    they do not work in my area.
    i do use a computer daily, so like marla, i would use a computer app.

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    Smile Project scope clarification

    I'll give you a bit more about the project scope. To be honest I didn't want to add too much information before the project was approved but I think clarification would be helpful.

    This is fundamentally and arts/design driven semester long assignment, please keep in mind that my school is highly conceptual. My industrial design classes have a basis in the humanities, sciences and art.
    This particular class however, is about co-creative, empathy-based design. We are being taught in this course how to design for people on a personal, needs-based and emotional level. That said it is important to note that this particular assignment is not a formal research project and is not sciences or tech driven. I don't conduct extensive technical research, I draw from existing research, related research, case studies, journals, etc. I do conduct some basic ethnographic research (I study people and their habits through observation, survey, co-creation kits, cultural probe kits, user opinion, user testing, site visits, field interviews and a few other approaches locally.) And I also focus a fair amount of my energies on physical and cognitive ergonomics (usability). This is also not a full product development course; we are not expected to turn out a complete, working product in the 2.5 months we have left of the class (although I'd love to accomplish this for my mom). My mom is why I chose to focus on auto-immune disease in first place...it was the invisible gauntlet that she had to dodge on a daily basis while she tried her best at living a normal life. It really deserves more exploration, awareness and understanding. What I am being asked to do as a student is to invest my creativity, love, thoughts (yes my research) and energies into a presenting a meaningful concept to the medical/assistive community. So what does this accomplish? We are trying to raise awareness of potential new directions in medical design that uses the arts to bridge the gap between the sciences and humanities.

    I'm not a programmer, or an app developer. I don't work for a design firm and this is not sponsored by any company. The goal of this assignment is to identify a real need and conceptualize a tool that could make a difference to someone on a personal level. Its about enabling someone to feel better through positive activity or exercise. Its not meant to offer a product, a cure or a remedy. If in any way it reinforced any kind of exclusionary or negative activity, I'd scrap the project myself.

    But to clarify the scope, I'm not superwoman... what I am is an insatiably curious, creative person that values out-of-the box thinking. (I research, ideate, explore, sketch, photograph, sculpt, 2D model, 3D model, produce graphic designs & posters and I also do some minor web design). If this project can be of value to the medical community later on, that would be great but I can't promise a fully working app/site. I will likely build a click-able web/app interface and even post parts of it on my website for simple user testing but it will not collect any real data at this point. What I can do is come up with a beautiful, intuitive and meaningful idea, a prototype for someone to hopefully find value in and develop further. I'd love to see the idea prove fruitful or useful to an organization willing to develop it into a full fledged system (hopefully a non-profit one like the Lupus Foundation). If I could continue it as my grad project next year, I'd gladly spend the time to try to make that happen and turn it into a free website, and android/iphone app. But that's thinking a bit big for one student's humble project at this point.

    Also I'd like to say that I agree with tgal, in my opinion, this project should exclude no one. I will be welcoming the feedback of anyone interested, as all ideas/input are valuable in empathy based design.

    Also, thanks to Steve and Marla for reminding me that any good tech solution works on all tech.. so it makes sense that it would ideally need to be a website and an app
    This makes more sense also when considering that a user might want it to link to the office of a health care practitioner, in which case it would need to have a web interface.
    That just brings up a boat load of new questions that I don't have permission to ask yet lol.

    I hope that helps clarify things
    Last edited by design_for_mom; 02-02-2012 at 01:48 AM.

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