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Thread: Research/Designer & Daughter of SLE Mom

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    Smile Research/Designer & Daughter of SLE Mom

    Hi everyone, my name is Bobbi and I'm the daughter of a terrific 55 year old lady with Lupus SLE. My mom started having symptoms within a few years of my being born. By the time I was 5-6 she battled with chronic pain and depression alone because she hadn't yet been diagnosed. She went from doctor to doctor who all told her the same thing (there's nothing wrong with her) and even worse (it's your imagination). It took her more than ten years of switching doctors and searching for answers before she was finally diagnosed both with hypothyroidism, chronic fatigue and Lupus SLE. That was more than 10 years ago, and I can honestly say that it put a tremendous strain on our family, but mostly my mom because she was never understood. Our household was not a healthy/happy environment due to a lack of education and understanding.

    I'm 30 now (our family split up in a bad way when I was a teen) and my brother and I are still struggling to understand what my mom has been-and still-is going through. I've gone back to school and I'm now a full time industrial design student in Vancouver, BC. I recently enrolled in a medical design course that is focusing on assistive design and technology and rather than focusing on designing another brace, wheelchair, or regular assistive device... I'm interested in making my project about designing for long term illness and terminal disease. Specifically, I'm thinking of designing for lupus as another way to support my mom, connect with the lupus community and create awareness. Since my mom's only strategy is flare-up management, I thought I'd try to conceptualize a tool for this. My class requires co-creators and user feedback as part of the design process, but it is understandably difficult to find other people with Lupus to join in the creative process. I've joined the BC Lupus foundation and attempted to email contacts there, and never received a single reply. I'm actively searching other support groups and sites trying to find anyone that would be interested in helping a student (me) with feedback during my creative design process.

    I read the rules of this forum to make sure, and I think research is permitted here, but please let me know if this in any way is inappropriate or violates the forum rules. If it is indeed okay to post for help on a student lupus research project here, please advise me where is best in the forums to post about it. Or if you are willing to make it a temporary sticky post, I'd love to share my process with the community.

    Thanks!
    Bobbi K.

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    hi bobbi, i am not a moderator, just a fellow member.

    we have had a couple of students on here before, doing research.

    i have willingly assisted each time.

    what are you asking from us?
    what are you hoping to achieve?

    in principle, i am happy to assist, but what do you require from us?

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    design_for_mom (01-31-2012)

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    I am happy to help I have a PhD so I understand the difficulty in getting raw data from the targeted groups. As above what do you want and how?
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Hi Steve, thanks for the reply

    I'm thinking of trying to design a simple phone or touch-device app to help journal activities that potentially contribute to flares. The reason I've chosen this for my project is that in the past my mom sometimes kept a diary to help her figure out some of the things that set her off. It's a complete stab in the dark and may not work at all, but it would have made her feel better to reflect on things, to look for correlations or even just to feel more in control of communicating these things to her doctor and family. She once tried to track her moods and fatigue on new medications and found it easier to evaluate how the treatment was working for her. Unfortunately it became too hard to remember, and took too long with simple pen and paper. She is helping me with information and feedback but she's not web or tech savvy at all (she doesn't go on the computer, but she does have a cell phone) and she now lives 3000 miles away from me. Also we are being asked to user test and get user feedback in the weeks to come and it would be great to have some additional input on this.

    Really what I want is to bounce ideas off people by making a super simple questionnaire, I'd also want to post some of the crazy and quirky ideas that have come up for this and get feedback on them.

    the type of questions I'd ask would be related to how people best like to track things:
    how are you most comfortable tracking things? lists, notes, book, journal, diary, computer, blog, phone, etc?
    would you be interested in an app to track your mood, stress level, sunlight exposure, exercise level etc?
    what type of things do you think it would be helpful for you to keep track of?
    what things do you think it would make a difference to keep track of (if you were able to reflect upon them and use this for positive change?)
    These might be simple once a day questions like: rate your stress level today on a scale of 1 - 10 etc. etc.
    How many times a day would you be comfortable inputting this information?
    What time of the day would you want to interact with a tracking app?
    What's the most amount of time you'd spend doing this?
    Would it be best if it was on the computer, a nice simple touch screen app, on paper, in a journal or book, on your phone,

    These are just examples, I'd have to refine my questions a lot to make them really useful in informing my design.
    I also considered designing a little remote vibrating wrist band to go along with it, maybe as a reminder to journal (my school is conceptual so we throw out a lot of interesting and sometimes weird ideas lol)

    If I did end up going with making an mobile-app mockup, I'd build it on the web, and would be interested in having people test it (i'd post it online so people can fiddle with it on their computer and give me feedback)

    So to sum it up, a short survey, some crazy idea reviewing via blog/forum (if I'm permitted, or I can set something up on my own site if the moderators would rather me do it offsite), and maybe an online testing app (on my own site) for people to play with and give me feedback.

    I'd also enjoy posting a summary/schedule of what my class is doing along with photos and posters that we have to make weekly to chart our progress.
    Our school does have a research ethics procedure in place to protect co-creators students and participants so I'd be able to keep anyone who would like to help informed, and provide informed consent information.

    *please note that I want to make sure I have the moderator's okay before getting started with it.
    If they are okay with it, I can post some pics and info of other projects we've worked on as an example. In the end, I'm hoping to make a working app for my mom to be able to use. We have a small show for at GF Strong Rehabilitation center in Vancouver with other universities in the area to share student design ideas in assistive medical design. The work goes in our portfolio and on our personal websites. I'm in my 3rd year of design so it would be a great addition to my portfolio for 4th year as well and a terrific gift for mom if I can get it working.

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    Awesome, thanks Delsey. Its indeed hard to get good data. I'm also taking the second part of an ergonomics course which helps with case studies, user profile creation, research and cognitive ergonomics for UI design.
    Over the next week I'll be composing a starter questionnaire, some simple focused questions (consider the forum a sort of focus group), some idea critique, rating and eventually online testing if i can.

    If I can have a handful of people willing to give feedback (more is certainly welcome) for a few minutes once a week, I'd be doing great
    Last edited by design_for_mom; 01-31-2012 at 10:26 PM.

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    Hi Bobbi,
    You can count me in for your project.

    Since I've been gifted with several overlapping autoimmune diseases, I have a few other organizations that I am involved in that you might be interested in checking out:

    http://www.sjogrensworld.org/mandel.htm Several of us at WHL have an overlap of Sjogrens. The folks there might really like your project.
    http://www.dysphonia-bb.org/forums/sd/ People with Spasmodic Dysphonia have voice problems that fluctuate day-to-day, so your app could apply to them.
    http://avnsupport.org/ Avascular Necrosis affects bones and joints - They might want to track symptoms and locations in the body.
    http://www.sp-foundation.org/hsp.html Spastic Paraplegia affects the muscles and walking. They also need to keep track of symptoms for their docs.

    Yeah, I'm dealing with all of these things. I think that your project might really be helpful to me.
    Also, the folks with spastic paraplegia often need walk-aids, like canes, braces, walkers and wheelchairs. If you and some of your colleagues could come up with out-of-the-box ideas for them, it would be wonderful. I use a cane, a service dog, a rollator and sometimes a wheelchair.
    Good luck to you.
    Hugs,
    Marla

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    Thank you so much Marla, the additional resources will be extremely helpful. I'm very appreciative of any help I can muster in this. I will also pass on the links to my classmates as some are undecided yet on what to design for. I believe there is one student designing for ALS and another for parkinsons, others are approaching it from the product end by finding an assistive device already in use and focusing on improving or adapting it for other uses. Any one of them may also find the links provided helpful.

    I have class tomorrow in which I will speak to my instructor about our school's ethics rules/guidelines for posting information online so I can provide some further background about myself, the class and our processes, then I'll update it here.

    I'm very excited now
    To be honest I was getting a bit disheartened in my search for information...until I found this site. I'm going to have to teach my mom how to forum/blog. She would love the positive, helpful and healthy vibe here

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    Bobbi,
    Please point your mom to WHL. It would be a good community for her. I'm near her age - 54, and there are many people here who are near our age.
    She would probably make some friends very quickly.
    Hugs,
    Marla

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    Ok I am in an app would be best in my opinion. You would also need to go to your college to get an ethics clearance and you should have to present your questionnaire and target group criteria. And also the moderators here need to be ok with this. If they wish it to go off this site I am happy to be contacted outside through a personal email. You would under ethics need to present each person with a letter containing your project outline. The collage your are working through and a person to contact if the participants are not happy with treatment which is the norm for ny research? This is a standard letter that can be copied from your college for research. Ethics are extremely important to ensure that your research is acknowledged as reputable. Send me a pm if you need to.
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Bobbi,

    Welcome to WHL. I'm Rob, one of the moderators here. The decision to allow your project to go ahead here will have to come from our Manager/Admin, Saysusie. I'll go ahead and message her to let her know about your proposal.

    Rob

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