PDA

View Full Version : Research/Designer & Daughter of SLE Mom



design_for_mom
01-31-2012, 07:46 PM
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.

steve.b
01-31-2012, 08:21 PM
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?

Desleywr
01-31-2012, 08:57 PM
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?

design_for_mom
01-31-2012, 09:31 PM
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.

design_for_mom
01-31-2012, 09:40 PM
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 :)

magistramarla
01-31-2012, 10:48 PM
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

design_for_mom
01-31-2012, 11:06 PM
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 :)

magistramarla
01-31-2012, 11:13 PM
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

Desleywr
02-01-2012, 01:58 AM
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.

rob
02-01-2012, 04:39 AM
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

Mica
02-01-2012, 09:29 AM
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.

design_for_mom
02-01-2012, 11:06 AM
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 :)

design_for_mom
02-01-2012, 11:10 AM
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.

Desleywr
02-01-2012, 05:28 PM
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.

tgal
02-01-2012, 05:38 PM
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.

Desleywr
02-01-2012, 06:35 PM
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!

tgal
02-01-2012, 06:46 PM
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

magistramarla
02-01-2012, 10:10 PM
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

steve.b
02-01-2012, 11:07 PM
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.

design_for_mom
02-02-2012, 12:40 AM
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 :)

Desleywr
02-02-2012, 03:01 AM
So in summary this is not a research project but an ideas gathering exercise? I have developed my own exel spreadsheet for data collecting as requested by my rhumy and I gather most others here have many methods of recording their progress.

design_for_mom
02-02-2012, 12:14 PM
The industrial design process is transdisiplinary so its hard to pigeon hole it - but no it's not a formal research project. Im hoping that anyone willing to take part will be able to have fun, be relaxed and remain open/casual about the topic. Since the topic has been chosen already most of the idea gathering is over what im really interested in refining the concept, it's delivery system and functions: what do potential users want, what would best serve them, how can the concept benefit people, how can it be uplifting and positive, etc. So the forum is like a remote focus group, and hopefully a circle of new friends willing to give casual feedback. :)

I've learned through school that the creative process is wonderfully fun, stimulating and challenging - and it should always be shared :)

Saysusie
02-02-2012, 10:17 PM
Design_for_Mom;
We have, in the past, had several persons request our participation in their studies/research. As has been stated on those previous occasions, I believe that research is vital to the possibility of a cure or for treatments that truly alleviate the symptoms of Lupus. However, such research cannot be conducted here on WHL. By this, I mean that you may ask if any member wishes to participate and you may provide your contact information here on WHL. Should a member agree to participate, the member may contact you outside of WHL and their participation would be completely voluntary and a personal decision. Any further contact between you and that member must remain outside of WHL.
As you've seen, there are several members who have agreed to help you with your research. I now ask that you provide your information to these members so that they may contact you in order to continue to help you. But any help or participation may not be conducted here at WHL.
If you have any further questions or should you need any more information, please feel free to contact me by PM. Thank you for adhering to our rules and for all that you are trying to do for those of us who suffer from this disease.

Peace and Blessings
Namaste
Saysusie

design_for_mom
02-02-2012, 11:48 PM
Hello, Saysusie,

Thank you for taking the time to review this. I understand completely why this forum may not be the right place for my class research. I appreciate being permitted to join the community regardless, and will refrain completely from posting anything more about the project on these forums. I look forward to introducing my mom to this site (and will teach her how sign up and surf it) because I think she would find an uplifting experience and a great community of people. I will also be sure that she is clear that the topic is not to be discussed anywhere on these forums. :)

To continue the project I will install and configure a simple, temporary forum on my own website this weekend for interested participants to view offsite. (I should hopefully have it ready for Monday)
I'm also hoping it is okay to provide my email address via PM to the interested members above, however I will respectfully wait for your reply before proceeding.

Thanks again,

Bobbi a.k.a 'design_for_mom'

tgal
02-03-2012, 07:30 AM
Hello, Saysusie,

Thank you for taking the time to review this. I understand completely why this forum may not be the right place for my class research. I appreciate being permitted to join the community regardless, and will refrain completely from posting anything more about the project on these forums. I look forward to introducing my mom to this site (and will teach her how sign up and surf it) because I think she would find an uplifting experience and a great community of people. I will also be sure that she is clear that the topic is not to be discussed anywhere on these forums. :)

To continue the project I will install and configure a simple, temporary forum on my own website this weekend for interested participants to view offsite. (I should hopefully have it ready for Monday)
I'm also hoping it is okay to provide my email address via PM to the interested members above, however I will respectfully wait for your reply before proceeding.

Thanks again,b

Bobbi a.k.a 'design_for_mom'

You may, of course, provide an alternate source of contact via PM for anyone that wishes to participate. Thank you for your work in.trying to make our lives easier.

I will now lock this thread.