LifeLab Lounge
Ariel Vizcaino-Amador
Build a prototype for an online community that will address the biopsychosocial needs of young (18-34 years old) cancer survivors by providing a safe space to share personal experiences and find common ground to move on in life.
Classes
Final Project Seminar
Keywords
online community, mediated interaction, social facts, social capital, cancer, survivor, support
Description
Build a prototype for an social online community that will address the biopsychosocial needs of young (18-34 years old) cancer survivors by providing a safe space to share personal experiences, interact and find common ground to move on in life. This project will become part of New York City based LifeLab a non-profit that serves the cancer community.
Personal Statement
After studying social facts with Clay Shirkey I realized the importance of exploring existing and non-existent online/mediated communities in order to be able to define what makes them successful and how to help and provide such resources to communities that might not be able to benefit otherwise – due to distance, isolation, fear, disability or health risk. The purpose is to use mediated communities to enhance social capital thus online and off-line by improving the quality of life of those involved by realizing the possibility of a better quality of life from learning from online peers.
Since I started working online (1993) I became fascinated with online interaction and the perceived danger of isolation by the individuals that would use it for everything in their lives. It has been proven that online activities in general improve the quality and amount of time spent in social situations. The latter by providing extra time by streamlining processes that otherwise would take to long absorbing large amounts of time to accomplish. Those that already isolate themselves remain isolated physically but they have built online relationships that might have improved their social skills at large – which otherwise they would not be able to develop due to the isolation they were immersed to begin with.
I have also been interested in the concept of the so-called Information Society – with Marc Libarle – which for me has existed for centuries now – the only thing that changes now is the media used and the proportional amount of content available. E.g. in the Middle Ages it was technically possible for someone to acquire all the knowledge available at the time – today that is impossible. The scalability has surpass the potential of learning as much as one wishes but it is much easier to learn about anything we want. Does that make it an Information Society more so than in the past? Before it was possible to attain all knowledge now only a fraction of it.
Since I started working online (1993) I became fascinated with online interaction and the perceived danger of isolation by the individuals that would use it for everything in their lives. It has been proven that online activities in general improve the quality and amount of time spent in social situations. The latter by providing extra time by streamlining processes that otherwise would take to long absorbing large amounts of time to accomplish. Those that already isolate themselves remain isolated physically but they have built online relationships that might have improved their social skills at large – which otherwise they would not be able to develop due to the isolation they were immersed to begin with.
I have also been interested in the concept of the so-called Information Society – with Marc Libarle – which for me has existed for centuries now – the only thing that changes now is the media used and the proportional amount of content available. E.g. in the Middle Ages it was technically possible for someone to acquire all the knowledge available at the time – today that is impossible. The scalability has surpass the potential of learning as much as one wishes but it is much easier to learn about anything we want. Does that make it an Information Society more so than in the past? Before it was possible to attain all knowledge now only a fraction of it.
Background
There are a lot of resources of information but they are limited in their scope on providing young adult cancer survivors to interact online.
Lance Armstrong Foundation
http://www.livestrong.org
Good general resource guide
Testimonials
Survivorship tools
Livestrong survivorship notebook to record your experience
Brochure series – What’s next? Self-assessment survey to figure out what do you need or what is it that you want to learn more about.
American Cancer Society
http://www.acscsn.org/
General statistical and support network divided by cancer type.
They have a newsletter and login option. It has increased the services by providing space for personal pages (profiles) of patients in different stages, searcheable by age group, gender, and cancer type. They include discussion and chat, resource library, talk shows and stories. This is one of the most complete and robust web sites.
Beyond the Cure
http://www.beyondthecure.org/index.html
Information for survivors of childhood cancer: Build Your Personal Profile, Retrieve Your Personal Information, View Common Late Effects, and Contact Us.
Planet cancer
www.planetcancer.org
Mission: An international network of young adults, ready and willing to help each other through what may well be the most difficult experience of their lives. We know it's a big dream, but we figure that once you face cancer, there's little you can't do.
Registration form age groups: under 18, 18-25, 26-30, 31-35, over 35
Categories: Friend, Family Member, Medical Professional, Patient, and Diagnosis.
The site contains forums on the following topics: general topics, support topics, specific disease. A lot of the postings are of people freaking out in the Testicular Cancer forum, of 20 postings 11 ask for help or diagnosis. The date of the system is off triggering a 1969 date when registering in 2005. They organize retreats. It also contains a chat in the form of a fish tank. They sell cancer related merchandise. One of the most unique features is a section called Cancertainment: At Planet Cancer we often find that our definition of entertainment is just a little off the beaten path. If you ever feel yourself drifting from the mainstream, then this section is for you. Books, movies, music, and humor to inspire, comfort, and keep you in stitches, even if you already are.
Teens Living with Cancer
http://www.teenslivingwithcancer.org/home.asp
Mission: A site for teens with cancer who have lots of living to do! You'll get straight information - we know what it's like. All pics and stories are of "real" teens with cancer.
You can connect with others - like yourself. Your friends will see what you really need. Your family will learn how to get a grip. Cancer facts, I can deal with it, body issues, school issues, etc. Staying healthy. This site includes discussion boards and teen connection, requires registration.
The Ulma Cancer Fund for Young Adults
http://www.ulmanfund.org/index.asp
Connects you with other young adults affected by cancer. No online interaction.
It provides information about support programs, education and resources, to benefit young adults, their families and friends, who are affected by cancer, and to promote awareness and prevention of cancer.
Candlelighters
Childhood Cancer Foundation
http://www.candlelighters.org/
Mission: Candlelighters Childhood Cancer Foundation is committed to our mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them. They include resources for kids, teens and siblings. They sponsor a camp, message board, and treatment information. It is also a resource for families with economic hardships and resources. Under this light is important to mention about a large network of large corporations that offer free flights for cancer patients to fly for treatment to another location – this network includes airlines and companies offering seats in private jets for free.
Fertile Hope
http://www.fertilehope.org/
Fertile Hope is a nonprofit organization dedicated to helping cancer patients faced with infertility. The website includes resources, information, and referrals. Free brochures.
Group Loop
http://www.grouploop.org/default_flash.php
It is a safe place for teens with cancer and their parents to build an online community to find support, education and hope while dealing with a cancer diagnosis.
- Join today! it's free to join, free to share your thoughts and free to get support
- Online support groups talk with other teens affected by cancer
- Discussion boards 470 messages in 159 topics
- My group loop join our newest member "Faithtown" and get in the loop
It also has polls and testimonials. Resources: relax, taking action, living with cancer, common problems. It has online social software tools: my group loop, discussion boards, find a friend, online support groups. Family resources. A place to connect with other teens while battling unwanted aloneness, loss of control, and a loss of hope.
2bme
http://www.2bme.org/2bMe.html
A site for teens with cancer. Animated with flash in a cartoon style. It has a lot of everyday tips for personal care, hair loss, social life, and healthy diet, relaxation, sports and fitness, how to deal with cancer, relationships, going out. It contains the Link-o-matic with resources.
Young Survival
http://www.youngsurvival.org/
It is a network of woman fighting against breast cancer. Offers login, merchandise, educational programs, research and trials info, news and events.
Based on the analysis of the previous websites I developed the following chart categorizing the content and identifying the gaps of information that would help boost the bio-psychosocial needs of young cancer survivors.
Lance Armstrong Foundation
http://www.livestrong.org
Good general resource guide
Testimonials
Survivorship tools
Livestrong survivorship notebook to record your experience
Brochure series – What’s next? Self-assessment survey to figure out what do you need or what is it that you want to learn more about.
American Cancer Society
http://www.acscsn.org/
General statistical and support network divided by cancer type.
They have a newsletter and login option. It has increased the services by providing space for personal pages (profiles) of patients in different stages, searcheable by age group, gender, and cancer type. They include discussion and chat, resource library, talk shows and stories. This is one of the most complete and robust web sites.
Beyond the Cure
http://www.beyondthecure.org/index.html
Information for survivors of childhood cancer: Build Your Personal Profile, Retrieve Your Personal Information, View Common Late Effects, and Contact Us.
Planet cancer
www.planetcancer.org
Mission: An international network of young adults, ready and willing to help each other through what may well be the most difficult experience of their lives. We know it's a big dream, but we figure that once you face cancer, there's little you can't do.
Registration form age groups: under 18, 18-25, 26-30, 31-35, over 35
Categories: Friend, Family Member, Medical Professional, Patient, and Diagnosis.
The site contains forums on the following topics: general topics, support topics, specific disease. A lot of the postings are of people freaking out in the Testicular Cancer forum, of 20 postings 11 ask for help or diagnosis. The date of the system is off triggering a 1969 date when registering in 2005. They organize retreats. It also contains a chat in the form of a fish tank. They sell cancer related merchandise. One of the most unique features is a section called Cancertainment: At Planet Cancer we often find that our definition of entertainment is just a little off the beaten path. If you ever feel yourself drifting from the mainstream, then this section is for you. Books, movies, music, and humor to inspire, comfort, and keep you in stitches, even if you already are.
Teens Living with Cancer
http://www.teenslivingwithcancer.org/home.asp
Mission: A site for teens with cancer who have lots of living to do! You'll get straight information - we know what it's like. All pics and stories are of "real" teens with cancer.
You can connect with others - like yourself. Your friends will see what you really need. Your family will learn how to get a grip. Cancer facts, I can deal with it, body issues, school issues, etc. Staying healthy. This site includes discussion boards and teen connection, requires registration.
The Ulma Cancer Fund for Young Adults
http://www.ulmanfund.org/index.asp
Connects you with other young adults affected by cancer. No online interaction.
It provides information about support programs, education and resources, to benefit young adults, their families and friends, who are affected by cancer, and to promote awareness and prevention of cancer.
Candlelighters
Childhood Cancer Foundation
http://www.candlelighters.org/
Mission: Candlelighters Childhood Cancer Foundation is committed to our mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them. They include resources for kids, teens and siblings. They sponsor a camp, message board, and treatment information. It is also a resource for families with economic hardships and resources. Under this light is important to mention about a large network of large corporations that offer free flights for cancer patients to fly for treatment to another location – this network includes airlines and companies offering seats in private jets for free.
Fertile Hope
http://www.fertilehope.org/
Fertile Hope is a nonprofit organization dedicated to helping cancer patients faced with infertility. The website includes resources, information, and referrals. Free brochures.
Group Loop
http://www.grouploop.org/default_flash.php
It is a safe place for teens with cancer and their parents to build an online community to find support, education and hope while dealing with a cancer diagnosis.
- Join today! it's free to join, free to share your thoughts and free to get support
- Online support groups talk with other teens affected by cancer
- Discussion boards 470 messages in 159 topics
- My group loop join our newest member "Faithtown" and get in the loop
It also has polls and testimonials. Resources: relax, taking action, living with cancer, common problems. It has online social software tools: my group loop, discussion boards, find a friend, online support groups. Family resources. A place to connect with other teens while battling unwanted aloneness, loss of control, and a loss of hope.
2bme
http://www.2bme.org/2bMe.html
A site for teens with cancer. Animated with flash in a cartoon style. It has a lot of everyday tips for personal care, hair loss, social life, and healthy diet, relaxation, sports and fitness, how to deal with cancer, relationships, going out. It contains the Link-o-matic with resources.
Young Survival
http://www.youngsurvival.org/
It is a network of woman fighting against breast cancer. Offers login, merchandise, educational programs, research and trials info, news and events.
Based on the analysis of the previous websites I developed the following chart categorizing the content and identifying the gaps of information that would help boost the bio-psychosocial needs of young cancer survivors.
Audience
Young adult (18-34 years old) cancer survivors worldwide.
User Scenario
Someone that is dealing with a recent cancer diagnosis, who is past the diagnosis milestone, or is living with or beyond cancer. This system will provide an open or anonymous online community to explore biopsychosocial fears and anxieties that result from a cancer diagnosis.
Implementation
With the previous premises I found that the group of cancer survivors between 18 and 34 years old – being the most active online group in general – does not have an exclusive online community where they can share their experience as cancer patients. One of the main issues might be because, based on interviews, this population prefer to cope the disease by themselves and the immediate family. Most of the current online communities available offer information and opportunities to meet with other cancer survivors. A pure online community for socializing without dating is still missing. Apparently there is the need for privacy but also the need to find resources to cope with the biopsychosocial needs of that period in life: self identification (independence), sexual definition (sexual orientation and performance), mating (dating), and coupling (building a relationship), and career planning.
Of all the previous services two are missing and could be of interest or have been proven to be interesting for the target audience:
- Matching service (for cancer type, interests, or other)
- Blog
From this analysis is easy to isolate topics that relate with bio-psychosocial issues but in this case is only focused for teenagers:
- Going out
- Personal care
- Personal pages (profiles)
- Relationships
- Tips for social life
- Well being and health tips
The most popular mediated activities are:
- Chat
- Find a friend
- Forums
- Support network divided by disease
- Survivorship tools (notebook)
Our new site could contain the following parts:
Bio-psychosocial information:
- Your new ID
- Sexual orientation/performance
- Personal care
- Personal pages (profiles)
- Going out/dating
- Relationships – urban tribe
- Tips for social life including work environment
- Well being and alternative health tips
The main sections could be:
- Cancer types – brief brief description
- Your life – the topics mentioned above as bio-psychosocial topics, mentor access, matching service.
- Chat – online chat with rooms for each cancer type or community, with the possibility to create new rooms or private chat windows.
- Blog – to maintain personal journals and pictures.
- Forum – this section would be moderated – following the open source model
- Loved Ones – information for your family, friends and closest friends.
Membership will be based on the disease stages because it makes more sense to address the anxieties and realities of each stage.
Of all the previous services two are missing and could be of interest or have been proven to be interesting for the target audience:
- Matching service (for cancer type, interests, or other)
- Blog
From this analysis is easy to isolate topics that relate with bio-psychosocial issues but in this case is only focused for teenagers:
- Going out
- Personal care
- Personal pages (profiles)
- Relationships
- Tips for social life
- Well being and health tips
The most popular mediated activities are:
- Chat
- Find a friend
- Forums
- Support network divided by disease
- Survivorship tools (notebook)
Our new site could contain the following parts:
Bio-psychosocial information:
- Your new ID
- Sexual orientation/performance
- Personal care
- Personal pages (profiles)
- Going out/dating
- Relationships – urban tribe
- Tips for social life including work environment
- Well being and alternative health tips
The main sections could be:
- Cancer types – brief brief description
- Your life – the topics mentioned above as bio-psychosocial topics, mentor access, matching service.
- Chat – online chat with rooms for each cancer type or community, with the possibility to create new rooms or private chat windows.
- Blog – to maintain personal journals and pictures.
- Forum – this section would be moderated – following the open source model
- Loved Ones – information for your family, friends and closest friends.
Membership will be based on the disease stages because it makes more sense to address the anxieties and realities of each stage.
Additional Documents
- Face pic - Main Image