Difference between revisions of "Wheelshare"

From Beyond Social
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Design for Child Oncology
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Wheelshare
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Authors: Roos Tigchelaar and Fenne Verhoeven
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Author: Wietske Lutgendorff
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Cancer is the main cause of child mortality in the Netherlands. Though adequate exercise and a varied diet increases chances of survival, for many seriously ill children this is difficult to achieve since they are too exhausted (Brinksma, 2014). Most existing research in oncology focuses on methods of treatment such as chemotherapy and radiotherapy. Few research projects so far have concentrated on supportive cancer care for children. This is why we have conducted a ‘research through design’ project to design, implement and evaluate interventions that stimulate adequate eating and exercising behaviour among children with cancer and their families. Our project is entitled POKO (‘Participatief Ontwerpen voor KinderOncologie’, Participatory Design for Child Oncology). POKO is a three-year funded project (September 2013 – December 2016).  
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There are currently 2.3 million people with disabilities living in the Netherlands. Ten years after the 2006 United Nations convention on the rights of disabled people, little has changed in the Netherlands; we have actually become one of the most inaccessible countries in Europe. This makes it difficult for people with disabilities, including wheelchair users, to lead a life which is as normal as possible. This is because they must deal on a daily basis with inaccessible buildings, toilets, shops, public transportation, stairs and thresholds. The project Wheelshare is based on the fact that wheelchair users feel visible for the wrong reasons, but that they also know better than anyone else which places are the most inaccessible. Wheelshare provides them with a device for attaching their cellphone to their wheelchair in order to film their experiences. It also provides an online platform for collecting, presenting and sharing these experiences. By using the hashtag #Wheelshare, these films and photos are collected automatically on the Wheelshare Facebook page.
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Website: www.wheelshare.nl
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Facebook: www.facebook.com/wheelshareNL
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Why wheelchairs
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It is estimated that one in 8 people in the Netherlands is dealing with a long-term disability (Statistics Netherlands, 2008). Not every restriction is the same; disabilities can be physical, psychological, mental, intellectual or sensory. For example, someone with a disability can be deaf or blind, or suffer from mobility problems. In the Netherlands it is not known exactly how many people with disabilities use a wheelchair. The publication ‘Joining Limitations’ has calculated that there are approximately 225,000 to 250,000 people who need to use a wheelchair in the Netherlands (SCP, 2012). These numbers are likely to increase rapidly in the coming years, partly due to the aging population. I myself also need to use a wheelchair.
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The Netherlands: one of the most inaccessible countries in Europe
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The Netherlands unfortunately is not prepared for this development, and is currently one of the most inaccessible countries in Europe for people with disabilities. Despite a convention drawn up by the United Nations in 2006 for the rights of people with disabilities, little has changed in ten years in the Netherlands. This makes it difficult for people with disabilities, including wheelchair users, to lead a normal life. This is because they have to deal on a daily basis with inaccessible buildings, toilets, shops, public transport, stairs and thresholds. For those who are ‘healthy’ or are simply able to walk, it’s hard to imagine how and where it is so inaccessible in the Netherlands. Also, it’s hard to imagine what should change exactly (often small solutions which can already provide a substantial improvement).
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Claim making power
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I began the project Wheelshare by conducting several interviews with wheelchair users. Wheelshare is an open concept, consisting of a platform and a toolkit, and making it possible to demonstrate the obstacles that impede us from free access and movement. The images may yield new insights and will always be created and shared by the wheelchair user. This not only presents a realistic picture of the daily experiences of the person with a disability, but the images can also be used as educational materials. The pictures can bring us a step closer to an inclusive and accessible society, because together we can identify bottlenecks which were not previously visible.
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Discussion
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The editorial board invites readers to reflect and react on the following questions:
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Documenting and collecting material is one thing; the artistic application of this rough material, and presenting it to a wider public is another matter. How could this important initiative be brought to the next stage? Furthermore: the resource group is now only documenting their problems. What about documenting their creative solutions? Do you know inspiring examples? Please let us know.
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[[Category:Explore]]
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[[Category:Empowerment]]
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[[Category:Democratisation]]
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Wietske Lutgendorff
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Wietske Lutgendorff is an Advertising / Open Design student. She positions herself as a professional problem solver because she continuously has to adapt to her environment by living with a disability.
  
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Website: www.poko.hu.nl
 
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Learning partnership
 
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Since the start of our project in September 2013, five Dutch design agencies, three researchers of the Utrecht University of Applied Sciences, and more than 50 students have been involved (research group Co-Design). The department of Paediatric Oncology of the University Medical Center Groningen in the Netherlands served as our case environment. In addition to the multidisciplinary parties already mentioned, all relevant stakeholders were involved in the design process: children with cancer, their parents and their healthcare providers (dietician, physical therapist, oncologist, nurse, pedagogic expert, food assistant).
 
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‘Double diamond’ approach
 
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We applied the ‘double diamond’ approach in this two-phase project, diverging in the first phase and converging in the second phase. In the first phase we designed 14 interventions aimed at stimulating eating and exercising among children with cancer. We used creative and visual methods such as photo assignments and diary methods, which allowed all stakeholders to communicate on the subject without being impeded by emotions or by barriers related to professional jargon, discipline or age. In the second phase, we selected and evaluated the most promising interventions in daily clinical practice. Interventions were selected according to validated criteria (based on the literature and expert meetings). The most promising interventions were:
 
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1) Food Ahoy! (www.dereisvanvijf.nl): a pirate game for children between four and ten years of age. The aim of the intervention is to create a positive association with food, to reduce stress among parents regarding food intake, and to stimulate a diverse food pattern. In the game, children and their families travel around the world guided by a treasure map. Visiting different continents of the world, participants have to fulfil exciting food-related tasks.
 
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2) Taste Lab: Part of the breakfast and lunch trolley in the hospital was transformed into a ‘food laboratory’ that can be brought to the children so they can experiment with new flavours in a playful way (‘first say what you think it is…’).
 
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3) Blox: A set of coloured foam blocks that children can use to transform their hospital bed into a cabin for instance. This intervention stimulates children’s creativity and gives them an opportunity to influence their environment, the sterile child oncology ward.
 
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4) Racemat: This mat of foam can be used to play a Mario Kart game, which can be controlled by lying on a mat fitted with sensors and leaning from side to side, thus helping to improve the child’s physical condition. The Racemat encourages children who are on a lower energy level to avoid inactivity.
 
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5) Kidkit: This cardboard box contains a large number of assignment cards with suggestions, assignments and games to make physical exercise more fun. Parents, children and professionals of the department can add new content to the box.
 
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Results on three levels
 
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We have delivered results on three levels: knowledge on the phenomenon of food and child oncology, design process, and interventions.
 
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1) Phenomenon/existing knowledge base: Increased insight into the motivations/experiences on the subject of eating and exercising among children with cancer and their stakeholders;
 
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2) Design Process: Designing with so many stakeholders for such a complicated problem is very complex. We gained insight of what to do (and what absolutely not to do) when conducting participatory design for child oncology.
 
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3) Interventions: The most promising interventions are Food Ahoy! and the Racemat. These are currently being further developed in startups, and researchers of the project team are conducting a quasi-experimental study in practice. We also hope to conduct a descriptive study with the Kidkit and Taste Lab.
 
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Results on these three levels will be incorporated into a toolbox that will be launched on December 1, 2016 on www.poko.hu.nl
 
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Acknowledgements
 
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This project was partially funded by a grant stimulating collaboration between creative industries, science and education (Ucreate) and by RAAK Publiek.
 
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The five involved design agencies are Panton, 4Building, Christa van Gessel Research & Strategy, LaSenzo and Kaliber. 
 
  
  

Revision as of 00:04, 8 July 2016

Wheelshare Author: Wietske Lutgendorff There are currently 2.3 million people with disabilities living in the Netherlands. Ten years after the 2006 United Nations convention on the rights of disabled people, little has changed in the Netherlands; we have actually become one of the most inaccessible countries in Europe. This makes it difficult for people with disabilities, including wheelchair users, to lead a life which is as normal as possible. This is because they must deal on a daily basis with inaccessible buildings, toilets, shops, public transportation, stairs and thresholds. The project Wheelshare is based on the fact that wheelchair users feel visible for the wrong reasons, but that they also know better than anyone else which places are the most inaccessible. Wheelshare provides them with a device for attaching their cellphone to their wheelchair in order to film their experiences. It also provides an online platform for collecting, presenting and sharing these experiences. By using the hashtag #Wheelshare, these films and photos are collected automatically on the Wheelshare Facebook page.

Website: www.wheelshare.nl Facebook: www.facebook.com/wheelshareNL

Why wheelchairs It is estimated that one in 8 people in the Netherlands is dealing with a long-term disability (Statistics Netherlands, 2008). Not every restriction is the same; disabilities can be physical, psychological, mental, intellectual or sensory. For example, someone with a disability can be deaf or blind, or suffer from mobility problems. In the Netherlands it is not known exactly how many people with disabilities use a wheelchair. The publication ‘Joining Limitations’ has calculated that there are approximately 225,000 to 250,000 people who need to use a wheelchair in the Netherlands (SCP, 2012). These numbers are likely to increase rapidly in the coming years, partly due to the aging population. I myself also need to use a wheelchair. The Netherlands: one of the most inaccessible countries in Europe The Netherlands unfortunately is not prepared for this development, and is currently one of the most inaccessible countries in Europe for people with disabilities. Despite a convention drawn up by the United Nations in 2006 for the rights of people with disabilities, little has changed in ten years in the Netherlands. This makes it difficult for people with disabilities, including wheelchair users, to lead a normal life. This is because they have to deal on a daily basis with inaccessible buildings, toilets, shops, public transport, stairs and thresholds. For those who are ‘healthy’ or are simply able to walk, it’s hard to imagine how and where it is so inaccessible in the Netherlands. Also, it’s hard to imagine what should change exactly (often small solutions which can already provide a substantial improvement). Claim making power I began the project Wheelshare by conducting several interviews with wheelchair users. Wheelshare is an open concept, consisting of a platform and a toolkit, and making it possible to demonstrate the obstacles that impede us from free access and movement. The images may yield new insights and will always be created and shared by the wheelchair user. This not only presents a realistic picture of the daily experiences of the person with a disability, but the images can also be used as educational materials. The pictures can bring us a step closer to an inclusive and accessible society, because together we can identify bottlenecks which were not previously visible. Discussion The editorial board invites readers to reflect and react on the following questions: Documenting and collecting material is one thing; the artistic application of this rough material, and presenting it to a wider public is another matter. How could this important initiative be brought to the next stage? Furthermore: the resource group is now only documenting their problems. What about documenting their creative solutions? Do you know inspiring examples? Please let us know.

Wietske Lutgendorff Wietske Lutgendorff is an Advertising / Open Design student. She positions herself as a professional problem solver because she continuously has to adapt to her environment by living with a disability.



08 wheelshare 3dprint Lutgendorff.jpg
10 wheelshare clips Lutgendorff.png
09 wheelshare instruction Lutgendorff.jpg
07 wheelshare chair Lutgendorff.JPG
06 wheelshare overview Lutgendorff.JPG