Dave Lupton, better known as Crippen or Sox, is a very famous disabled cartoonist in the UK.
As a matter of fact, he has been commissioned by many television companies such as the BBC, and Channel 4, but also by numerous mainstream newspapers such as the Guardian and the Yorkshire Evening Post.
Since Crippen is on a wheelchair for many years now, he is very much attached to disability and disability-related issues. Currently, in his blog one can find 26 different topics addressing different aspects of disability.
As mentioned in his webpage, Crippen's main goal is to work on disability issues and rights by identifying the barriers within the society. He addresses them by using humor and by showing the absurdity of many situations.
In this short post, the Crippen wants to make non-disabled individuals realize that in certain situations they behave in a very contradictory manner. For example, in the image below Crippen portrayed a "Grand Gala Evening For the Disabled" in which he shows the non-disable people standing on a pedestal well separated from the disabled. Nevertheless, they state it is good to be close one another... Isn't this contradictory?
The main point here is that disabled people have been marginalized for years, making them "invisible". That's what Operation Invisible is for: to give voice to those who usually don't have one.
As previously stated, Dave Lupton's work aims to promote disabled individuals' rights.
Dave was commissioned by Toyah Wordsworth – a disabled woman active in the Disability Equality Training – to develop some cartoons for a board game she designed: 'Removing Barriers'. The game main goal was to raise awareness on the multiple barriers and challenges that individuals with disabilities have to cope with every day. In total, one can find 15 boxes on the board, and each of them covers a different topic – as, for example, the accessibility of a public structure (like a public transportation, a school or a restaurant) or having a positive attitude towards one's disability by saying: "Think Positive – we are Disabled and proud and we are capable of achieving anything!".
'Removing Barriers' is easy to play, educational and also a great deal of fun. Toyah hopes that it will be available soon to all people involved in providing disability equality training throughout the UK.
This cartoon is kind of special: despite he comes from England, Dave is not a football fan, so it was difficult for him to work on this topic. He had no idea of the real difficulties of a disabled football fan – especially those in a wheelchair.
In the images below you can see what he found out:
As you can see, the difficulties Crippen discovered for disabled football fans are numerous, as getting "dumped" behind standing photographers, being close to the opposite team's disabled fans, or even receiving the ball right on the head because you're sitting right behind the goal.
The Social Model identifies that disabled individuals are disabled by the many barriers that exist within society. These barriers prevent disabled people from participating fully in mainstream activities. These barriers are classified into four groups:
Attitudinal: the negative beliefs and attitudes of non-disabled individuals who do not believe in disabled's abilities.
Physical Environment: no or little accessibility to the environment.
Institutional and Organisational: institutions and organisations are many times unwilling to be flexible regarding the provision of services and employment of disabled people.
Information and Communication: the lack of availability of information in alternative formats, as for example in Braille format or the provision of sign language interpretation.
Below you can find the drawing Crippen made for this Topic:
The Invictus Games were launched by Prince Harry and are sort of Paralympics championship involving injured members of the armed forces. The first event took place in 2014 in London. The idea behind the Invictus Games is that sport can positively impact the lives of wounded, injured and sick soldiers.
"The competition would recognise the sacrifice made by those who fought for their country" – Prince Harry
Well, Dave does not share the view of the Prince; in fact he writes:
"Now, having already been down this road many times, disabled people will tell you that the only thing you actually achieve by encouraging competition in this way is to highlight the difference between those who can and those who can't. Yes, sport, activity and personal challenge can be positive and motivating for many of us, but turning it all into a media spectacle often puts negative pressure on those who "Can't". They end up being given an even bigger rod with which public opinion can beat them with.
However, in the shadows are those of us who make up the highest proportion of our disabled community, but are unable to participate in competitive sports and games. Those of us with severe impairment issues, those with hidden impairments, with mental health conditions, with HIV and Aids etc. Compared to the Paralympians, we represent the failed side of disability, the unglamorous, darker side, not photogenic or sexy or even coming close to participating in our celebrity obsessed society.
The armed forces have their own dark side too. [...] How, in the words of Prince Harry, are these people going to be able to 'celebrate their fighting spirit through an inclusive sporting competition that recognises the sacrifice they have made ... by serving their nations so bravely'?"
What's your opinion about sports events like the Invictus Games and the Paralympics?
Generally, I found Dave's works very interesting, as for example I've never thought about the controversial aspect of Paralympics or similar sport competitions for disabled. I am starting now realizing how many difficulties and barriers disabled individuals must be facing.
What do you think about all these cartoons? Do you know one of the described situations or do you think that he exaggerates? I would be interested to hear about your experiences.
Travelling can be a better experience for wheelchair users with the support of a mobile phone app that displays where and what the accessible locations are. The following list provides a description of websites and mobile phone apps which display and categorize accessible spots around the world.
Momentarily, the website and app AXS map is available in English only. Nevertheless, compared with other maps it is probably the most detailed one. The main website has a video tutorial that explains how to use and contribute to the service.
In the map there is the possibility to narrow the research using a filter on 15 different categories. The categories are: everything, restaurants, nightlife, shopping, beauty and spas, arts and entertainment, hotels and travel, health and medical, public service, education, fitness, financial services, mass media, religious organization, and museums.
Users can contribute to the evaluation of the spots assigning stars (from one to five) to them and providing information in relation to location's bathroom, number of steps, parking, inside space, guide dog acceptance, and so on.
If a location receives many positive feedbacks it will be signed on the map with a green color. The other colors are orange, which means "poor", red means "not accessible" and grey means "evaluation unknown".
The creator of the map is Jason DaSilva who is a wheelchair user himself. His goal is to provide a service that covers the entire world even if at the moment it is spread mostly in the U.S. For this reason, he proposed the concept of mapathon, a funny way to incentivize people to test the accessibility of public spaces and bring feedback.
At the moment, wheelmap is the most famous and widespread service in regard to wheelchair accessibility information worldwide. The website and app is translated in 22 languages. It permits to identify the accessibility of POI classified in twelve categories: accommodation, bank/post office, education, food, government, health, leisure, miscellaneous, public transport, shopping, sport, and tourism.
Again, users can contribute to the description of the places with photos and comments. In addition, people can rate the toilet status of each location they visited.
Also wheelmap differentiates the accessibility of the places using three different colors (green, orange and red). The grey spots are the ones where no evaluation has been provided yet.
In contrast to the two previous maps, wheelmate focuses on the accessibility of toilets and parking places only. Users can add their contributions through pictures and comments. The accessibility of the places is not signalized with different colors but people can rate them with the option "like". A video tutorial explains very clearly how to use the service.
The website and the app are available in seven languages.
As for the other maps, the goal of the app turismo accesible is to improve the travel experience of people with reduced mobility. Since the apphas been created in Spain it covers this country in a very detailed manner. Other countries included by the map are: Germany, Andorra, The Netherlands, Italy, France, Belgium and Argentina.
The service, which unfortunately is available only in Spanish, reviews the accessibility of hotels, museums, restaurants, public transports and tourist attractions. Each registered location is followed by a description of its accessibility and some general information.
Paramap is a website and app designed appositely for Switzerland. It provides information regarding eurokey toilets, parking, accommodations and bankomats of the entire country. People can contribute to the improvement of the map adding places which have not been included yet. An evaluation of the places by the users, however, is not possible.
Further information about travelling with spinal cord injury you can find here.
Humans of New York is a project born in 2010 by the photographer Brandon Stanton. His main purpose is to tell stories – snapshots of individuals' lives – no matter their characteristics: there are stories of women, men, elderly people, kids, foreign or locals, disabled or abled-bodied individuals, heterosexual or homosexual, etc. etc. Probably this is a way to highlight that every story is important, unique and of interest and that normality involves everyone – or, conversely, it does not concern anyone.
Prerequisite for being interviewed? None, except from living in NY, or at least this was true when the project started. Now there are also stories collected over the years during the author's travels around the world (e.g. Iran, Iraq and Pakistan)
There are long stories, sad stories, funny stories and sometimes very short stories – usually these latter include solely a few sentences. In some rare cases, the photograph is not followed by any sentence, usually this happens when words are superfluous and the image speaks for itself. The author emphasized that the core strength of his project is its simplicity. The images capture the attention of who is watching, but what it really makes the difference are the photos' descriptions. The success of HONY (Humans of New York) is attributed to the talent of Brandon Stanton and the empathy his photos arouse.
Why do I want to share these stories with you? First, because I personally love them, I very often found myself lost in reading them. Second, because I think you might find interesting some portraits of the interviewed individuals with SCI. For example, the one of this girl who has well clear in mind where she wants to go and what she wants to do. Her intervention made me think about the word "inspiration". In fact she states: "I don't want people to pity me. I don't want to be another 'poor her.' I don't want to inspire peop...
Actually, before reading this, I've never thought the word "inspiration" could assume this connotation. Now, since I do believe disabled people are inspiring, I don't know what word to use instead or if it is the case to use this word again when talking with an individual with SCI… What do you think about this?
In a country of 45 million people, it is estimated that 3.5 million people in Tanzania live with a disability. People with disabilities are often among the poorest and most marginalized in society. Disability can have a significant impact upon the quality of a child's education. The WHO estimates that, in 51 countries, only 51% of boys and 42% of girls with disabilities will complete their primary school education. This seriously limits the development of these children, as they lose access to information, are unable to socialize with their peers and are unable to develop the skills they require to seek employment and contribute to their family and the wider economy. The illiteracy rate among Tanzanians with a disability is 48%, compared to 25% among people without disabilities.
The existing laws in Tanzania categorically emphasize on the equal rights to education, health services, employment, information and communication, cooperation in economy, respect, ability to reach all areas and good standard of life. However such rights are not fully given to the people who are physically challenged. People with disability are still facing challenges in various issues concerning their welfare, especially education. There is insufficient equipment to facilitate the people with disability to study. This makes people with disability not enjoying the right to information and communication as they lack the equipment and translators to assist them. They also face challenge in accessing health services as they usually get humiliated by health providers, while health centers' infrastructure pose obstacles for them to reach the areas.
To give you an insight to the situation of people with disabilities in my home country Tanzania I want to share with you the stories of two persons, Eliezey and Seretti, which I found on the website of Neema Crafts (https://www.neemacrafts.com/). Neema Crafts is a project of the Anglican Diocese of Ruaha and it trains people with disabilities to become skilled artisans from carpenters, to tailors, ceramicists to paper-makers, great chefs, or entrepreneurs starting up their own enterprises. By this, people with disabilities get an opportunity to support their families, send their children to school and get integrated to society, while also changing the attitudes toward disability in Tanzania.
"I've had polio in my legs since birth, which means I've always had to crawl around. We had very little money, so my parents couldn't buy me a wheelchair. I desperately wanted to go to school, but my parents told me I couldn't because I couldn't walk. 'You can't go, don't keep asking!' they'd say, so I tried to keep quiet. I was very sad because I was too afraid to tell them how I really felt, just in case they sent me away. I didn't want to make them angry.
There was nothing to do at home and I got very bored. All my friends were at school and I felt low almost every day. I used to try to get around to see other disabled people, just so I could feel I wasn't alone. I felt a bit better when I did this and made some good friends."
Eliezey also experienced challenges in finding employment, which would enhance his personality and his level of understanding as well as improve his financial situation. However Neema Craft, by offering skills and creating an employment opportunity, has been of great support to him.
"'She should be killed, she can't work, she can't help out at home, she can't go to school, get a medicine to kill her.' That's what they told my father. I was two weeks old when it happened. A witch doctor came to my house at night, took me from my bed and put me into a blazing fire in the room next door. I was only saved by my uncle, who smelt the burning and came to find out what was happening. My legs had been burnt off past the knee and I was so badly injured that the doctors had to amputate them at the hip. After eight months in hospital I was well enough to return home.
'No I will not kill her, she is my child' was my father's reply to the people around him. People saw how disabled I was and though I would only be a burden on my family. I learnt to move around in a bucket, as I didn't have a wheelchair and at the age of ten went to primary school after finding support with the church. I passed my exams and then decided to go to a secondary school in Iringa."
Due to the financial situation of her family, Seretti had difficulties with continuing her education and finding work until she got a chance of employment at Neema Craft, which helped her to be independent and to manage her daily life needs.
I would like to share with you an article from the Russian forum invatravel.ru devoted to a trip to Salzburg, Gosau, Hallstatt, Bad Ischl, Vorderstoder, and Linz (Austria). This article was translated from Russian to English with the permission of the author and traveller Svetlana Nigmatullina.
Perhaps every traveler has his/her own Austria. For some, Austria is "woven" from palaces and gardens, churches and extensive museum collections. Others admire the restaurants and shops. The third kind is crazy about ski resorts and mountains. The fourth, the fifth, the sixth... Every traveler has his/her own Austria.
Upon arrival in Salzburg, I was immediately struck by the smooth asphalt roads and sidewalks. Public transportation is stress-free and very punctual. All buses are adapted for the wheelchair.
Unfortunately there was almost always and everywhere a problem with access to historical buildings, though it wasn't a problem for us as we didn't have a "museum mood"and most of our tours were just sightseeing and hiking.
Surprisingly the weather was sunny but with cool wind during the day and chilly wind at night. The infrastructure of the city is modern and amenities are quite comfortable. Houses, churches and even the masters who create under the watchful eye of curious tourists — all is real!
Perhaps each of us spending time in places far from home pay our attention to not very interesting things or to something that we do not have time to notice because of our daily routine, work or something else. But on vacation, especially abroad, when you have time to walk slowly through the streets and look around, in addition to architectural masterpieces, in the field of view necessarily fall showcases, monuments and flower beds. And it is not because "they" have better and we have worse. It is a moot point and the views are always subjective. They are just different, and every country has its own unique features.
It is not necessary to write about all sights of Salzburg. About this beautiful city, full of history, souvenirs and "Mozart" chocolates were told more than once.
Speaking of "Mozart" chocolates — the popular brand turned out to be the worst chocolate I have ever tried. It is not a chocolate, rather a soybean.
Briefly about four sights we have visited in Salzburg:
Mirabell Palace and gardens are part of the Historic Centre of the City of Salzburg – a UNESCO World Heritage Site. The Palace of Mirabell offers beautiful views of the old town and Hohensalzburg Fortress—the largest, fully-preserved fortress in central Europe.
Mirabell Palace and views of Hohensalzburg Fortress.
Despite the large number of tourists, the Mirabell Garden struck me at first sight by its splendor, brightness, abundance of floral scrolls on lawns, fountains and sculptures depicting scenes from Greek mythology, romance and a truly royal luxury. Any superlative adjectives can be attributed to this wonderful garden!
The Mirabell Garden.
The Mirabell Garden is not just a regular garden. It is one of the finest examples of landscape art.
The Mirabell Garden.
2) Trick fountains — the world-famous fountains hidden in the shade of bushes and trees at Salzburg's Hellbrunn Palace. The trick fountains have inspired visitors for about 400 years. The name of the fountains justifies their purpose because they can switch on at any moment and drench you with cold water from head to toes. The pressure of the water, which flows down from the Alps, causes the watery surprise.
Trick fountains at Salzburg's Hellbrunn Palace.
Trick fountains at Salzburg's Hellbrunn Palace.
Hellbrunn is the former summer residence of the Salzburg Prince-Archbishop Markus Sittikus. It was related to the Medici family and was built between 1612 and 1619 based on the model of Roman villas in Italian style for hunting, recreation and entertainment.
The trick fountains at Salzburg's Hellbrunn Palace like 400 years ago is the popular spot, and their visit, for some reasons, entails a tour, whether you want it or not. Therefore, we bought the tickets for 9.5 euros per adult and for 6.5 euros for a person with a disability, and we joined the mixed multilingual group of tourists. The tour was in English and since my English skills are poor, I did not understand a lot. Though, in general, I could guess and I could gather some information from other sources. It is a beautiful place with noble fishes in the ponds, and it was my sacred duty to make photos.
The noble fish.
The Salzburg Prince-Archbishop, walking with his guests, did not only talk about the precariousness of human destiny and the ephemeral world but also showed outlandish mechanisms in his park. For example, the Mechanical Theater, built in 1750, whose imposing size and accurately detailed construction could hardly be suspected in the park, is the most recent element in the mechanical, water-operated and music-playing treasures at Hellbrunn. The water puts the figures of 256 people of different social classes and occupations in motion.
The Mechanical Theater at Hellbrunn.
There were a lot of pensioners among the visitors, and many of them took the wheelchairs to stroll through the park. The wheelchairs are provided at the ticket window for free.
The elderly tourists.
3) The Mozartplatz Square— a small patch in the heart of the old town of Salzburg, which is always very touristy but still worth visiting. The Square stands a bronze statue dedicated to the great composer Wolfgang Amadeus Mozart (1756 –1791). It was cast and raised in 1842.
Many people come here to listen to the world-famous Salzburg's peal, daily ringing music of Haydn and Mozart from the bell tower.
The Mozartplatz Square.
4) One of the most popular places in Salzburg is the Residenzplatz, which is the main, stately square in the heart of the historic center. In the middle of the square sits a grand baroque fountain, which is made of marble and is considered the largest baroque fountain of central Europe. On the other side of the square is the New Residence decorated with a bell tower. Three times a day: at 7:00, 11:00 and 18:00, the bells of the New Residence perform their famous sound of chimes.
The baroque fountain.
Knowing myself and my desire to look into the most secret corners of the country, I tried to see as much as possible. So, suddenly I ended up in Gosau.
Gosau is a little town near Austrian Alps. The town is without streets and houses flourish randomly in the fields. There we stayed in a small apartment hotel.
Gosau — a little town near Austrian Alps.
In the courtyard of the hotel we met the most Russian landlady Luba. Although she was a woman of a few words, she asked me how and why I ended up in a place like this. According to her, she has met Russian tourists only once in this hotel. It's not exactly easy to get here and she has never seen travelers on wheelchair around these areas, so she was very surprised as well as the local bus drivers who never operated the lift for a wheelchair before. You could see that they did not know what button to press although any transport is completely adapted for people with limited mobility.
Upon entering the hotel is a ramp. On the first floor is a two-room apartment decorated in a traditional style but without a balcony. Everything was nice but not as convenient as promised while booking. I had no complaints to the kitchen and the living room. However, the bedroom was very small with a very soft bed, so I slept on the hard couch in the living room. The toilet and the shower were in separate rooms, in which it was impossible to turn around on a wheelchair. But everything was trivial once I saw the view the next morning!
Near the apartment hotel in Gosau.
The view from the apartment hotel.
The freezing water channel is in silver color and limpid. Ecology!
The view made the greatest impression in my life. It has left me open-mouthed and I lost the power of speech. I was sitting and kept pinching myself because I could not believe in these beautiful views around me.
The Austrian Alps.
We were lucky with the weather and we decided to go to the small photogenic lake Gosausee, which is of spectacular beauty. The Russian landlady offered us a ride and it took us 13 minutes to get there. The parking place for people with limited mobility and a bus stop —they're all right!
In the background of the lake Gosausee is the Mountain Mass —Dachstein. Around the lake illuminated an equal path 1.5 meters wide. It is an ideal place for a walk on a wheelchair, though it takes more than an hour to walk on this quiet side-street.
The lake Gosausee and the view on the Mountain Mass — Dachstein.
We decided to have a snack at the restaurant by the lake. Thereafter, despite the fact that we made such a long trip, we took a chance to walk back to the hotel and we never regret it.
A walk back to the hotel from the Gosausee.
There were almost no cars and no people on the road. We have become used to the deserted places.
On the way to the hotel we stumbled on to another lake and the museum of the local history. The summer season started in two weeks and the museum was closed. However, we have managed to look into the territory of the museum.
The unknown lake, just as beautiful as the lake Gosausee!
Next day, the Russian landlady of the hotel gave us a coupon, which granted us the right to ride the bus free of charge and get discounts in the local coffee shops. The local bus stop is in front of the hotel and the bus, as always, arrived in time. With one change, we arrived at the UNESCO World Heritage village of Hallstatt within 30 minutes.
I do not remember when the first time I saw the Hallstatt's picture. But I remember my reaction very well. "It cannot be that this place exists in reality!", and the ideas about how I leisurely stroll through the fairy-tale village streets went through my head. Hallstatt is the door to the fairy-tale world.
The fairy village Hallstatt.
Many tourists, whom the travel companies offer the tour to Hallstatt, do not hide their astonishment, "what is there so interesting to see in the village whose population does not exceed a thousand people?"However, having come back home, you'd ponder for a little where to start your talk…to more accurately portray the exciting atmosphere of this beautiful historic place.
The uniqueness of the Hallstatt telling is the fact that the Chinese built a clone of this picturesque village. So great was their admiration! Interesting is the fact that the number of Chinese tourists in Austrian Hallstatt has not decreased but instead, increased. Seeing the clone of the Austrian's village, the majority has a burning desire to see the original.
Most of all, Hallstatt struck me with the feeling of the unprecedented isolation from civilization and contentment exists in this place.
Indeed, Hallstatt, surrounded by mountains on all sides, with its nestled color as if toy houses on a hillside and the blue lake with swimming swans, imparts home coziness, heavenly peace and a sense of unusual security from world's tribulations.
The lake in Hallstatt.
The lake in Hallstatt.
Against the background of the lake and Hallstatt.
In fact, the village itself has only two streets and local people can pass through by car only on one of them!
The coastline is so narrow that the highways are withdrawn in tunnels which are laid in the rocks above the village. The train station is nowhere to be seen. It is located on the opposite side of the lake. Passengers have to get to Hallstatt by boat.
Over there, on the opposite side of the lake, there is a cable railway by which I easily got to the observation deck and once again enjoyed the beauty of the region. The ticket price for the cable railway was 11 euros but pretending to be the local, I bought the ticket for 6 euros.
Speaking of disability benefits, when purchasing the transport or sightseeing tickets, the Russian certificate is invalid almost everywhere. In addition, you are not allowed to use the special parking space. In my opinion, it is one of the international stupidities.
The accessible cable railway.
Bird's-eye view of Hallstatt.
On the observation deck.
On the way deep into upper Austria, we visited Bad Ischl —the town of retro style. Over there, after a bite of more chocolates in the famous confectionery "Zauner" founded in 1832, we went to Kaiservilla, the Summer Palace of Emperor Franz Joseph in Bad Ischl. But, unfortunately, we were only able to see the first floor of the villa, with nothing there ahead of us but a gift shop. We were also unable to walk in the park. There were stairs and repairs everywhere. We did not understand for what we paid the money for and why we were not warned about the inaccessibility.
Our final refuge was a rented house of Marianne, a music and English teacher in the municipality of Vorderstoder. The mountains there are lower but the meadows are wider and the milk is sweeter. In Vorderstoder, we essentially walked on the paths, roads and even meadows, breathed crystal clear air, ate, slept, read, stared out of the window through the rain at the Alps and drank milk! How delicious Austrian milk is! Every morning, the hostess brought us the milk from the farm and the taste of the milk in Austria makes me want to cry. It is thick and sweet!
The Marianne's house in the municipality of Vorderstoder.
What do you need more for being happy?
A white donkey got a portion of croutons.
There were a lot of Austrians wearing national costumes. At first we thought that they dressed up for special holidays but it turned out that in Austria, people still wear traditional costumes in their daily lives. Marianne has more than 40 traditional costumes.
As if time had frozen.
Marianne showed us all the neighborhoods and the most beautiful views.
Abbey church, also known as cathedral at the Pyhrn.
Inside the church.
Marianne also agreed to give us a ride to Linz.
Linz is the third-largest city of Austria and Hitler's favorite city. Hitler described Linz as his "home town". He lived at Humboldtstrasse 31 in the heart of Linz when he was 16 years old.
Having arrived in Linz, suddenly it started to rain, and to prevent wasting time, we decided to ride the steamship "Linzerin"along the Danube. It was a good idea and the idea of sailing up the second largest river in Europe brought even more pleasant feelings. Without someone's assistance, I was able to climb inside the steamship. We ordered tea and "Linz"— a traditional cake of the city and looking around, hearing the story of the area and country.
Sailing on the steamship along the Danube.
Next day, with the bags full of gingerbread, chocolates and pumpkin oil, we went home.
Austria is one of the countries I am in love with and where I had easily "walked". I know, I will be coming back to the realm of candies and gingerbread houses, and of course to the Alps.
Authors of summary: Teresa Brinkel and Christine Fekete (Swiss Paraplegic Research)
Original article: Fekete C, Weyers S, Siegrist J, Michel G, Gemperli A. Poor nutrition and substance use in a Swiss cohort of adults with spinal cord injury. Journal of Public Health. 2015;23(1):25-35.
In comparison with the general population, people with spinal cord injury (SCI) consume less alcohol but more cannabis. There is hardly any difference with respect to their dietary and smoking habits. It is mostly age and gender that are influencing their health behavior.
What was the aim of this study?
A healthy diet, a moderate consumption of alcohol and not smoking are the key elements for being healthy and living long. Numerous advice on the "right" and healthy diet are circulating in the media every day. Hardly one day goes by without the promotion of a new diet which promises health, well-being and a higher performance. Whether Stone-Age, food-combining, vegetarian, low-carb, high-protein diet or losing weight while sleeping – these are only a few examples from the jumble of diets and nutrition recommendations with many different opinions.
From a scientific point of view, not only the question "what is an optimized diet?" but also the social context is of high interest. The form of diet, the consumption of alcohol and smoking are strongly connected to socio-demographic factors, predispositions and the social environment. Age, gender, social relationships and support as well as the financial situations are influencing health behaviors. The diet and use of addictive substances are therefore not isolated characteristics but are often connected to the individual lifestyle of a person.
These correlations were examined in a study with data from the SwiSCI survey. The main goal of this study was to examine the health behavior of people with SCI, especially the daily fluid intake, the consumption of fruit, vegetables and meat as well as the use of addictive substances. The second goal was to compare the determined health behavior of people with SCI to the general Swiss population. Lastly, the authors of the study wanted to answer the question of how age, gender, education and income are influencing the health behavior of people with SCI.
How did the researchers proceed?
Within the SwiSCI survey, 511 people with SCI living in Switzerland were questioned about their health behaviors. The researchers evaluated the data and were able to identify, for example, how many portions of fruit and vegetables participants were eating on average and how many participants had taken cannabis within the past month. Then the researchers compared the data with those of the Swiss Health Survey of 2012 in which around 22,600 people had given information about their health behaviors. As third step, the scientists used a statistical analysis procedure to discover conspicuous connections between health behaviors and socio-demographic factors, for example, "Is there a difference of behavior between older and younger people?" and "Do people with a high income live healthier than people with a lower income?".
What did researchers discover?
Dietary habits of people with SCI
About 12% of people with SCI indicated that they were drinking less than one liter per day while about 38% indicated more than two liters. About one third of the survey participants reported that they were eating at most two portions of fruit and vegetables per day and only every fifth person achieved to eat the recommended amount of five portions per day. With respect to the consumption of meat it showed that 2% of the survey participants were not eating any meat at all and about 56% at least four times per week (see table 1).
Table 1: nutritional status of the SwiSCI participants
Comparison with the general population of Switzerland
In comparison with the Swiss Health Survey of 2012, the following minimal differences were identified: the fluid intake of people with SCI was higher and they were consuming meat slightly less frequently than the general population. Related to these indicators, people with SCI therefore followed a slightly healthier diet. In fact, the recommended daily fluid intake in persons with SCI is normally 2-3 liters, which is slightly higher than in those without an SCI in order to prevent constipation and urinary tract infections. With respect to smoking, no differences could be identified: the numbers of smokers were nearly identical. There were significant differences in the consumption of alcohol and cannabis: a significantly higher consumption of alcohol among the general population was shown while the consumption of cannabis by people with SCI was significantly more frequent (see table 2).
Table 2: nutrition, smoking, alcohol and cannabis consumption
Factors influencing the health behavior
From decades of research it is known that age, gender, education and income are influencing health behaviors [references 1-3]. Surprisingly, however, the researchers were unable to find a connection between education, income and health behaviors of people with SCI. As expected, they were able to identify behavioral differences related to age and gender: It shows that, overall, men eat less healthy and drink more alcohol than women. Older people smoke less frequently and consume less cannabis but drink more alcohol than younger ones.
Remarkably, certain behaviors do often coincide. People with a healthier diet indicated that, on average, they were drinking less alcohol than people who ate less healthy. Furthermore there were strong connections between smoking, drinking alcohol and consuming cannabis: smokers were generally drinking more alcohol and indicated that they were consuming cannabis more frequently than non-smokers.
According to the study, there are hardly any differences in diet and smoking behaviors between people with SCI and the general population while people with SCI in comparison drink less alcohol and consume more cannabis. Furthermore, the study shows that health behaviors of people with SCI from Switzerland depend on gender and age. It is therefore recommended to design programs for the promotion of health of people with SCI targeting their gender and age. For example, in order to reduce poor or malnutrition, health programs can focus more on men. Campaigns promoting to tobacco and cannabis cessation need to be specifically developed for younger people whereas the consequences of alcohol abuse should be the topic in prevention programs for older people.
Who conducted and financed the study?
The study was carried out and financed by Swiss Paraplegic Research in Nottwil, Switzerland.
Statistik Schweiz (2012): Gesundheitsstatistik 2012. Neuchâtel: Bundesamt für Statistik.
Huisman M, Kunst AE, Mackenbach JP. Inequalities in the prevalence of smoking in the European Union: comparing education and income. Prev Med. 2005;40(6):756-64.
Lantz PM, House JS, Lepkowski JM, Williams DR, Mero RP, Chen J. Socioeconomic factors, health behaviors, and mortality: results from a nationally representative prospective study of US adults. JAMA. 1998;279(21):1703-8.
I would like to share with you an article written by a wheelchair traveler sharing his travel experience to
Port Aventura Park, Aquatic Park and Tarragona. This article was originally published on the Russian forum invatravel.ru and is translated from Russian to English with the permission of the author.
Port Aventura is the 6th largest theme park in Europe. It attracts around 4 million visitors per year making it the most visited theme park in Spain.
We bought the two-day tickets for the Port Aventura Park directly at the Port Aventura Hotel. Retirees, children and people with disabilities are provided with a substantial discount. Since there are always long queues for the rides in the Park (around 40 minutes or more), it is recommended to buy a so-called «Express Pass» which gives you the right to wait in a separate queue. Having an «Express Pass» doesn't always guarantee a shorter queue. However, in our case, it was easier because the entrance to the ride for people with disabilities is at the exit door of the ride! Thus, you don't have to wait your turn for 40 minutes. You only wait until the next round and your accompanying family members or friends would enjoy this privilege too. This allows you to catch a ride of almost all attractions, and even more than once.
Every time I finished a ride and rejoiced the fact that I could go on a ride twice without waiting in a long queue, I caught myself wishing I were healthy and could stand along with other people in the queue. It is a complicated feeling and I always tried to pull myself out of this surge of mixed emotions. ;-)
How to get there: On a regular taxi for 8 euros from the hotel and for 10 euros back. I must say that to walk uphill from the hotel to the park for 2 km is difficult and unrealistic.
Attention: attractions require guests to transfer from their wheelchairs to the ride by themselves. The employees are unlikely to offer to help. Thus, you must have strong arms or count on the assistance from your accompanying family members or friends.
There are accessible restrooms in every themed area:
Mediterrania, Polynesia, SesamoAventura, China, Mexico and Far West. The restrooms are perfectly clean, despite the huge number of visitors.
The Tutuki Splash Ride is a great attraction and is suitable for people of all ages. It is quite easy to transfer from a wheelchair to the ride.
My nephew and I were totally soaked after
the Tutuki Splash Ride.
The Kon-Tiki Wave Ride is the only attraction that I don't advise you to go. The hour after the ride I felt heavily sick. This, obviously, spoiled my mood and I didn't want to go on other rides anymore.
Being exhausted to walk in the heat, we decided to take a ride on an old locomotive, which runs through all the themed areas. I climbed inside and for some reasons, I decided to leave my wheelchair on the platform. The locomotive was traveling so slowly and made lengthy stops, so our journey took about 40 minutes to return to the same platform. Otherwise, we could get off elsewhere. I must admit that it is not a convenient form of transport. It is easier to walk to your destination than to ride the locomotive.
Besides the old locomotive, there also runs a boat, which is not designed for wheelchair users. However, with some help, I was able to climb inside and take my wheelchair with me on the boat. The boat trip takes around half an hour. However, there is nothing beautiful to see except the vegetation. Thus, it could be also a waste of time.
The view on the themed area "China" from the old locomotive.
The two steepest roller coasters:
Dragon Khan - the smaller one, and Shambala - the steepest and the highest roller coaster in the Port Aventura Park. The Shambala is for the elite troops - the craziest and most desperate tourists. The official website states that these rides are accessible for disabled guests. I do not know which people with a disability they have in mind, but I have decided not to go, because it is not clear to me how they secure my paralyzed legs for the ride.
The Huracane Condor Ride slowly lifts you to the top of the tower and stops completely at 100 meters high and when you least expect it, the sharp fall starts. This is the steepest ride I dared to go.
At the very moment when the fall begins from the highest point and you have already reached just two meters away from the ground BUT your spirit is still hovering in the sky, the camera makes a shot. If you like, you can buy the photo with your skewed face of fear at the ride exit. ;-)
I was frightened when it began to fall. But I became even more frightened when I noticed that my legs strongly lifted up due to the acceleration of a free fall. Firstly, I was thinking how to prevent my legs from dislocation and secondly, how to prevent my shoe from falling on somebody's head. I did not want to overshadow someone's holiday with a shoe fell from the sky. While I was overcoming these fears — we've landed. Undaunted by the rapid descent, I simply rushed to the exit. It is amazing how many thoughts can shoot in your head just in a few seconds of falling, and while in a normal state, thinking about these takes much more time.
The evening show while waiting for the fireworks.
The parade of all artists and representatives of different themed areas begins at around 23:15, and at 23:45 begin the fireworks.
On the first day, we arrived at the park quite early in the morning and we were already very tired at 16:00, so we returned to the hotel. On the second day, we decided to go there by 16:00. The weather at this time was not so infernally hot and the park had only a few visitors. Perhaps, most people were as tired as we were on the first day, and have returned to their hotels. Therefore, I advise visitors to arrive at the park in the afternoon, not earlier than 15:00, in order to have the energy to watch the fireworks at late night.
The water show and the fireworks.
After the fireworks, we took a taxi back to the hotel without any problems.
Conclusion: Even if you are not a fan of rides, or you do not have strength to transfer from a wheelchair yourself, the park is still worth a visit for various shows and musical performances in every thematic area. Shows are held several times a day and last about half an hour each.
The Aquatic Park belongs to the Port Aventura Park and is located close to it. The Aquatic Park is quite small although I think this is a plus, because you do not have to run around the acres of parkland from one attraction to another. You can still leisurely get around, and thereafter relax tanning on the loungers.
The entrance to the Aquatic Park is located near the entrance to the Port Aventura Park.
The toilet with a shower is accessible for guests with limited mobility.
"Throne" for the entry into the swimming pool. I must say that it is not a very comfortable chair.
With the help of lifeguards, you can go to the pool, transfer to the rubber ring and swim on the "river" El Rio Loco, which goes around the aqua park.
Kids Corner -
La Laguna Woody.
I really liked the Aquatic Park primarily because of its small size and the number of visitors, most of whom perhaps were in the Port Aventura Park, sightseeing or sunbathing on the excellent beaches of Salou.
How to get there: From the Port Aventura Hotel you can take a taxi for about 30 euros each way or a city bus 'Bus Plana'. We decided to take a bus with a pass for 10 trips for 12 euros. All buses are fully accessible for wheelchairs, including the electric wheelchairs. They have a folding ramp and a special area in the middle of the cabin. In fact, it is the only available transport for those who are in electric wheelchairs and who cannot use the services of a conventional taxi. I must say that I have not seen a special accessible taxi during the trip. From Salou to Tarragona takes about 40 minutes and buses run every half hour.
The bus arrives at the bus station, located at the center of Tarragona. In a circular area of Imperial Tarraco, there are 8 streets which lead you to different attractions. The important thing is to get on the pedestrian boulevard, called the Rambla Nova. It leads to the pearl of the city - the "Balcony of the Mediterranean".
On the Rambla Nova street is a monument of Castels - a human pyramid, and Casteleros - people who form the pyramid.
The Roman Amphitheatre built in the second century AD, with a capacity of 12,000 spectators.
I am against the background of the Roman Amphitheatre.
The elevator to descend to the Amphitheatre.
The park and the alley. The public executions were once carried out here, including the first public execution of Christians.
Moreover, walking along the Rambla Nova, we saw an information kiosk. There we decided to take a city map and find out more about the accessibility for wheelchairs around the city. It was very nice to meet an employee who spoke good Russian with such a great pleasure, and particularly without an accent. He told us that the so-called "Old Town" is not accessible for wheelchairs. However, I did not believe that and decided to check it out... Well, the employee was right - the Old Town is not accessible for wheelchairs and we just wasted time.
After an unsuccessful assault of the Old Town, we decided to take a small locomotive that runs around Tarragona.
The locomotive is not accessible for wheelchairs, so I had to climb on board with extra help and put the wheelchair next to me. The ride is accompanied by an audio guide on 7 languages and it costs 7 euros per person. It runs along the beach, through the port into a modern city, passes through the Old Town and returns to the point of origin - to the Roman circus and Amphitheatre.
The streets of the Old Town.
Placa de la Font - the central square of the Old Town.
Ajuntament de Tarragona - City Hall.
I fell in love with this amazing and beautiful city!
Summing up, I must say that I was quite upset with the poorly adapted bathroom in the hotel, the accessible beach that had no changing rooms for people with a disability, and the lack of shower for rinsing after swimming in the sea. However, I really liked the mild climate in Salou, the wheelchair accessible Port Aventura Park, and I fell in love with the beautiful city - Tarragona, its ancient streets and the view of the emerald sea from the "Balcony of the Mediterranean".
Who hasn’t dreamed of a fairytale wedding and seeing the world on their honeymoon? Maybe not many men do but certainly many girls do and Fang Ling, a girl from Taiwan who became paraplegic since she accidentally fell from the staircase during a business trip in 2010, did not only dream about her honeymoon but recently realized her dream with Yang Yun-hao, the man of her life who also suffers from spinal cord injury (SCI) due to a serious car accident happened three years ago.
It was love at first sight for both Ling and Yun-hao when they first met about two-year ago at the Development Center for the Spinal Cord Injured (財團法人桃園市私立脊髓損傷潛能發展中心). They fell in love and last year, they decided to get married on September 12th – turning the memorial day of Ling’s injury to the happy wedding anniversary for the loving couple. The couple did not have a fairytale wedding ceremony. Instead, they took off on March 9th this year with two other abled friends of the Development Center to fulfil Ling’s honeymoon dream – touring and taking wedding photos around Taiwan, their home country, with wheelchairs and bikes.
Gear up! – the day before Yun-hao (second left), Ling (second right) and their friends went on their 25-day trip around Taiwan.
Recently I had the pleasure to talk with Ling and Yun-hao on phone and learnt more about their extraordinary honeymoon adventure.
SCI couple touring around Taiwan: difficult but not impossible
Taiwan, an island nation with 22 administrative divisions famous for its nature, simplicity and hospitality, is a popular tourist destination. It has also become the recent favorite destination of wedding photoshoots for Asian couples. Naming themselves “Love Ring Taiwan 輪子出走”, Ling, Yun-hao and their two friends finished their round-the-island trip in 25 days setting foot in every single administrative division in Taiwan. Recalling their journey, Yun-hao said, “we trained ourselves for more than an hour each day before the whole trip – pushing the wheelchair, rolling up the slope. Originally we’ve planned for more attractions but eventually we were still travelling slower than we thought. That’s why we changed our plan to visit only one attraction for each division.” During the 25 days, they travelled with their scooter-wheelchair, handcycle and bikes on their own with only one or two exceptions that people drove them to their destinations. Most of the time they booked their accommodation on their arrival day. They mentioned that not every hotel or hostel offers wheelchair-friendly facilities but they were able to overcome the difficulties with the help of their friends and the friendly people met during the trip. “There is never a place which is totally obstacle-free and we have learnt to express our needs and that is very important. In most situations, people are willing to help as we ask politely,” Yun-hao said.
Out-of-battery: Yun-hao and Ling chatting with the villagers while charging the wheelchair at a temple in Ruifang District.
Culture and venture: patron goddess wedding ceremony, diving, paragliding and more
The 25-day journey is the first proper trip the couple had together since their injuries. They shared with us their many exciting first experiences during the trip. “We had our first paragliding experience. Suit up, wear our helmet and just like that, we went paragliding in our wedding dresses! We felt really hyper,” Yun-hao and Ling said. “Yeah! We did it!” : Ling cheered for her first skydiving experience…and in her WEDDING DRESS!!
Diving was also the couple’s first experience. With the help of three coaches, they dived 10-meter deep into the water at Kenting - the first national park of Taiwan and a popular destination for water sports and activities. Yun-hao learnt how to swim before the injury but expressed his insecure feeling to swim after the injury; Ling has never learnt swimming before. Nonetheless, they both enjoyed the exciting experience of diving. First experience: Ling and Yun-hao dived 10-meter deep into the water at Kenting.
Another highlight of the trip would be the couple participating in the patron goddess wedding ceremony (known by locals “Ta Chia Jenn Lann Gong Wedding”) at the Chenlan Temple in Taichung. The ceremony was considered one of the biggest annual cultural events in Taiwan. During the ceremony, 99 pairs of couples get married under the witness of Mazu - the Chinese patron goddess who is said to protect fishermen and sailors. With their unique love and adventure stories, Yu-hao and Ling did steal the spotlight at the ceremony. The couple said this massive traditional wedding ceremony has been one of the most precious and unforgettable memories from their trip.
Married “once again”: Ling and Yun-hao joined the patron goddess wedding ceremony with 98 pairs of couples at Chenlan Temple in Taichung. The 99 blessed couples: could you find Ling and Yun-hao?
From impossible to “I’m possible”
While I was thinking a 25-day honeymoon round a country must have cost a fortune, Yun-hao shared with me the heartwarming truth, which is really impressive. “We did several street performances during our trip,” he said, “sometimes when there were children around, I made a variety of balloons for them, and Ling would sing and play her guitar. It was more for having fun than making money. The crowds were so supportive that we eventually received enough donations for our performances to cover the spending of the whole trip!” When asked if they could complete the trip with just the two of them, both Ling and Yun-hao had no hesitation and answered, “yes! Certainly! It could take more time but it is not impossible.” They are both thankful for their accomplishment. Music says it all: Ling wrote and performed a song about herself with Yun-hao and their fellows on the street in Kaohsiung. Support, Care, Infinity: Ling and Yun-hao at one of the street performances during their 25-day trip, making balloons for children.
With the help of friends and their persistence, Ling and Yun-hao transform from not knowing where to visit and take wedding portraits to making wonders and administering their “Love Ring Taiwan” facebook page with more than 7500 likes. They showed us impossible is nothing, “we met other SCI patients on our trip. They all refuse to bow to fate. They play snooker better than normal people; they bake very delicious cakes; the websites they create are nicer than many others; they never give in because of their physical disabilities and even work at farms early in the morning with their families.” Yun-hao finally added, “people tend to be afraid of the roads ahead – what could happen – and think why things never seem to work out for me? But you gotta try, face the problem and solve it. This is how we learn and move forward!” A dream comes true: unlimited by their physical inabilities, Ling and Yun-hao completed their 25-day journey with love and pleasure.
The “Love Ring Taiwan” journey ended but this is certainly not the end of Ling and Yun Hao’s story. You may revisit their extraordinary honeymoon journey and find their updates on their facebook page here (in Chinese only).
Authors of summary: Ursina Arnet and Timo Hinrichs (Swiss Paraplegic Research)
Original article: Arnet U, Hinrichs T, Lay V, Bertschy S, Frei H, Brinkhof MW; SwiSCI study group. Determinants of handbike use in persons with spinal cord injury: results of a community survey in Switzerland. Disability and Rehabilitation. 2015 Mar 18:1-6. [Epub ahead of print]
For the first time data on the use of handcycles by paraplegics were published in Switzerland: the study showed that almost 25% used a handcycle. These were mostly men between 31 and 45 years with a medium to high household income, German speaking and with a complete paraplegia. The most prominent reasons for not using a handcycle were lack of interest, lack of knowledge about handcycles and the high purchase price.
Summer is the perfect season for pleasant rides outdoors or for athletic challenges. For many paraplegics riding a handcycle is a good opportunity to get some exercise and to support their own health. It can be integrated easily into everyday life and is a lot of fun.
Riding a handcycle promotes health
Various studies have confirmed that riding a handcycle has many positive effects on the body (see figure 1): the power transmission is efficient and the shoulder load is much less compared to the use of a regular wheelchair. This decreases the risk of developing shoulder pain. In general regular exercising helps to improve stamina and decreases the risk for cardiovascular diseases and diabetes. Therefore riding a handcycle regularly can help to stay active into old age. Furthermore it enhances social integration: groups of handcycle users and cyclists, skaters and runners can, depending on fitness and speed, go on a tour or practice together. It is therefore no surprise that there are more and more handcycle users. Within many wheelchair sports clubs there is a specific section for handcycle users, and in 2015 also the UCI Para-cycling world championship took place in Switzerland.
Figure 1: advantages of the handcycle
What did the researchers discover?
The researchers analyzed the published data from the SwiSCI study which showed the use of handcycles by paraplegics in Switzerland for the first time. The study examined who are the typical handcycle users and for which reasons some persons do not use it.
According to the study, almost 25% of the population with paraplegia in Switzerland was using the handcycle as means of transportation, in more detail: of 1,549 study participants 350 were using a handcycle (22.6%) (see figure 2). This is approximately in line with other European countries such as Denmark or the Netherlands.
More men than women were using a handcycle (78%). The biggest group of users was between 31 and 45 years old. The higher the age, the smaller the user group and there were hardly any persons 62 years of age or older who were using a handcycle; researchers assumed the reason therefore to be the declining muscle strength that comes with ageing.
Figure 2: distribution of handcycle users
The majority of the handcycle users (58%) had a complete paraplegia (see figure 3). For this form of paraplegia the handcycle is especially suitable since the persons concerned are dependent on a wheelchair but – unlike many persons with a complete paraplegia – they are able to use their arm-, shoulder- and partially their torso strength.
In case of an incomplete lesion a remainder of motor skills and/or sensitivity is still present. Persons with this kind of lesion are the smallest group of handcycle users since they can still partially walk or are not completely dependent on a wheelchair.
Figure 3: lesion level of handcycle users
The handcycle users in comparison with the non-users tended to have a higher household income: 63% of the handcycle users indicated a medium (CHF 3,500 or more) or a high (CHF 4,643 or more) income, unlike the non-users with only 49% indicating a medium or high income.
Distribution according to language regions
The study data showed that the highest portion of handcycle users lived in German-speaking Switzerland: of all German-speaking study participants, 27% were using a handcycle. In French-speaking Switzerland they were only 13% (see figure 4).
Figure 4: distribution of handcycles according to language regions in Switzerland
Reasons for not using a handcycle
Within the group of non-users, 26% indicated that they were not interested in handcycles, 19% did not know it existed and for 14% the purchase price was too high.
Various handcycle categories
Handcycles can be divided into various categories: all-round cycles for everyday use can be attached to the own wheelchair using various systems. Persons who want to get around faster in their own wheelchair may want to use a sports cycle. Like an all-round cycle, it is attached to the wheelchair but by means of geometry, components and selection of materials used it allows for a speedy ride. Finally there are race cycles that are solely intended for sports activities and cannot be attached to the wheelchair (Deutscher Rollstuhlsportverband e.V.: Ein Sport für alle. URL: http://www.myhandicap.ch/sport-behinderung/sportarten/handbike-nicht-nur-fuer-menschen-im-rollstuhl/ (in German), accessed on August 11, 2015). Persons with limited arm strength may even equip their handcycle with a supporting electric motor.
To begin with, I am native Russian and I have a big interest to share with you an article recently posted on the Russian forum and devoted to the visit of the Moscow Kremlin by a group of people with disabilities. This article was translated from Russian to English with permission from the author.
How could you visit the capital of Russia without visiting the Moscow Kremlin?
One may absolutely say that even for locals of Moscow a visit to the Kremlin is an intriguing and memorable event. Yet, in combination with an interesting and informative tour, one may have a story to tell friends and acquaintances afterwards.
The author of the article himself has checked the site of Moscow Kremlin for accessibility and inclusion.
The construction of the Kremlin was started under Ivan Kalita on Borovitsky Hill on the left bank of Moscow River in the early 14th century. Today, the Kremlin serves as the largest ancient fortress in Russia and Europe.
The overall length of the existing Kremlin walls is 2'235 m, which forms an irregular triangle. Along the walls there are 20 towers, the highest one of which is Troitskaya tower that has a height of 80 m including the star on top.
The Kremlin walls were originally made from white stones and even when the walls were replaced by red bricks, they were painted white for nearly four centuries. The reasons behind the white Kremlin were not only the fashion and the tradition to paint walls white for important events, but also the security of the bricks and camouflage during the Great Patriotic War (1941-1945).
During the tour you can also see the Tsar cannon - the mortar of the biggest calibre of 890 mm is included in the Guinness Book of Records.
You can also see the Tsar Bell with height and diameter of more than 6 meters cast in 1735.
These and many other interesting sights and historical facts you learn from the tour of the Moscow Kremlin.
Today all temples and other buildings that are in the territory of the Kremlin are conditionally available for visitors with limited mobility.
Physically challenged visitors are able to get inside with the help of friends or volunteers that can be found at the website http://invatravel.ru/ .
Doubtless, you will have an unforgettable few hours of walking to the Kremlin and the Alexander Garden.
The duration of the tour is around 2 hours. And, the tour for the stronger ones can continue with a walk around the Red Square.
Author of summary: Rachel Park (Swiss Paraplegic Research)
Original article: Mattar AA, Hitzig SL, McGillivray CF. A qualitative study on the use of personal information technology by persons with spinal cord injury. Disability and Rehabilitation. 2014 Sep 26:1-10. [Epub ahead of print]
Daily use of digital devices/technology for people with a spinal cord injury (SCI) can contribute to better health and well-being. Technology can provide people with an SCI with access to SCI-related health information and opportunities for social integration and participation, hence increasing their quality of life.
What was the aim of this study?
Previous research has proven that the use of technology and digital devices (e.g. computers, tablets, cellphones) can benefit the health and well-being of individuals with chronic health conditions. One SCI study found that owning a cellphone was associated with better social integration. With the help of modifications, many people with SCI can use these devices regularly.
Up until now, however, the details about device use among the SCI population had not been studied. This study allowed researchers to learn details of how people with an SCI integrated technology into their day-to-day lives.
How did the researchers proceed?
Ten people with SCI were recruited into the study. All identified themselves as regular users of technology and who had been living in the community for at least twelve months following their initial in-patient rehabilitation. Data was collected and analyzed from both questionnaires and semi-structured interviews.
What did the researchers discover?
The researchers identified the types of modifications needed to improve the accessibility and usability of devices for people with SCI (e.g. to attach them to the wheelchair with a clip, to use a trackball instead of a mouse) and gathered considerations for further technology development.
Moreover, the researchers found three main themes associated with daily use of digital devices/technology which can help contribute to better general health and both physical (e.g. sports/fitness, activities) and mental (e.g. forums, long-distance friendships) well-being:
accessing health information: looking up information on prescriptions, bladder and bowel issues, nutrition, physician reviews
social interaction: using social media to make contact with post SCI friends or old friends and family, employment opportunities, support groups and forums
current events: travel opportunities, physical activities, SCI groups, venue accessibility
Finally, the researchers found that, along with the vast amount of available on-line information, participants showed some skepticism on the quality of the information. They tended to question exactly how reliable the information online was, and if it was applicable to their specific situation. Many times it was unknown who was posting the information or what their qualifications were to be writing about a complex condition such as SCI. Some participants also had difficulties finding detailed information or information that matched what they had been taught at their rehab centers.
What do these findings mean?
The study provided some important insights on how persons with SCI incorporate digital devices in their day-to-day lives. The use of these devices seems to benefit this population by increasing their knowledge on their condition, increasing their access to social contacts and employment/school opportunities, and making them feel that they are participating and active in the community. Due to the many benefits of frequent use, technology could be integrated into more rehabilitation programs.
However, the use of digital devices and information technology also poses some challenges. First, in terms of usability: new devices become lighter and sleeker and it often makes them more difficult to use for people with SCI. Future developments should be made also with their perspective in mind.
Second, in terms of evaluation of online information: while the amount of SCI-related information on the internet can be a bit overwhelming for both patients and health professionals, an aim could be to help new patients uncover how reliable the information is. To keep up with the times and to shape the future of health online, it is important that trained health and information technology professionals work together with SCI consumers.
Who conducted and financed the study?
The study was conducted by the University of Toronto. Funding and support were provided by the Toronto Rehabilitation Institute and the Ministry of Health in Ontario.
For more information about participation and quality of life in SCI, please visit the website of the original authors: www.parqol.com.
My name is Bryce John Rafferty. I am a 26 year old American man currently living in Colorado, where I went to college. I grew up in New England around Boston and New York, but much like the Swiss people, I love the mountains and the healing energy of life and beauty they provide. I had a diving accident in Prangins on 30/8/09 that broke my neck and left me as a C5-6 tetra. I was the third young man in 20 years to break their neck diving at that beach off of a long pier, and subsequently the canton decided to remove it. Sadly, I was injured just one day after I moved in with my host family, and one day before classes started for the study abroad program I was a part of in Geneva. I was studying International Relations and French. I was saved from drowning by a boy Damien who is part of the host family from Prangins who graciously let me stay with them. A helicopter flew me to SPZ where I spent 45 days in ICU. While in ICU I contracted pneumonia and lost all function in my left arm because of a cyst in my spinal cord that was partially fixed here in the USA. All told I was at SPZ for 5 months before flying to Craig Hospital here in Denver for further rehabilitation.
Almost exactly a year post-injury, I returned to college, and graduated with a degree in International Political Economy in 2012. Since then, I have lived in Denver and been taking steps further and further towards living as independently and happily as possible. I now have a car and am able to drive, worked 3 part-time jobs, and am composing music again but now on the computer. I will be working again hopefully by mid summer, and plan to go to graduate school in the coming years. Below are 2 links to videos my father put together about my early recovery.
I will be forever grateful for SPZ, it's employees, and the wonderful people I met there. I will be back to Switzerland soon I hope. In the meantime feel free to contact me here on paraforum if you have any questions/comments or just want to talk.
All the best to all my Swiss brothers and sisters in wheelchairs and to SPZ. Ciao!
Authors of summary: Teresa Brinkel and Christine Fekete (Swiss Paraplegic Research)
Original article: Fekete C, Wahrendorf M, Reinhardt JD, Post MW, Siegrist J. Work stress and quality of life in persons with disabilities from four European countries: the case of spinal cord injury. Quality of Life Research. 2014;23(5):1661-71.
Chronic work-related stress and little influence on the working process also minimize the quality of life in persons with spinal cord injury (SCI). According to this study, the severity of the impact of work-related stress does not depend on education or the financial situation of an employee with SCI.
What was the aim of this study?
Continuing pressure from deadlines, excessive demands or mobbing at the workplace can trigger stress and lead to extensive mental and physical limitations. Depression, tenseness, sleep disorders and high blood pressure are examples for possible reactions of the body due to continuing stress. Numerous studies confirm that stress-causing working conditions can contribute to decreasing the quality of life and health.
It has also been scientifically proven that stress decreases the quality of life especially in persons who are socially and financially less well established. Socioeconomic factors such as education, profession or income therefore play an important role with respect to the impacts of stress on the individual.
While there is evidence in this context for the general population, there are hardly any comparable studies about persons with disabilities. This study therefore focused on the following two questions:
Is there a connection between work-related stress and quality of life in persons with SCI?
Does work-related stress in persons with SCI have a higher impact on the quality of life in socioeconomically disadvantaged populations than in privileged populations?
How did the researchers proceed?
The data used came from the SwiSCI survey as well as from ILIAS, an international research project on the labor market integration of persons with spinal cord injury (https://www.ilias-survey.eu/de/index.php). The researchers evaluated data that was collected from 386 employees with SCI from Switzerland, the Netherlands, Norway, and Denmark. These persons were working at least 18 hours per week when the study was performed.
In order to be able to assess "work-related stress", the "quality of life" and the "socioeconomic status" of the persons with SCI, the researchers matched each of these three abstract terms with concrete indicators which could be measured on the basis of the collected data:
Work-related stress was therefore measured using the imbalance between commitment (e.g. work performed, experienced time pressure, high expectations) and reward (e.g. appreciation, adequate compensation). A discrepancy between these factors can lead to work-related stress reactions. The participants were also asked how much influence they had as employees on the working processes since it is known that less control on the job can also contribute to the perception of stress.
In order to assess the quality of life of the participants they were required to indicate how satisfied they were with their health, their social relations, the performance of daily activities and their housing situation.
The socioeconomic status of the participants was determined according to their education and financial situation.
What did the researchers discover?
The data analysis showed that the quality of life of employees with SCI varies, namely with respect to dependence on the degree of work-related stress. Persons who experienced an imbalance between their work commitment and their compensation underlie an increased risk for a lower quality of life (see figure 1): They are less satisfied with their health (see figure 2), with their social relations, with their daily activities and their housing situation.
Figure 1: relation between work-related stress and quality of life
Figure 2: relation between work-related stress and satisfaction with one’s own health
The researchers were able to also detect similar connections in persons with little influence on the work organization, the pace of work or work-related decisions. These persons generally reported a lower quality of life than persons with more abilities to exert influence (see figures 3 and 4).
Figure 3: relation between job control and quality of life
Figure 4: relation between job control and satisfaction with one's own health
What this study did not confirm is a decrease of quality of life due to stress-causing work especially in socioeconomically disadvantaged populations. The data did not show that persons with SCI with basic vocational training and financial problems suffer more from the consequences of burdensome working conditions than more privileged persons.
What do these findings mean?
In contrast to the general population this study about persons with SCI did not find a connection between socioeconomic factors and the impact of burdensome working conditions. One possible reason is that the survey was conducted in countries that have a well-established social and health system. The scientists assume that the favorable social framework in these countries (e.g. social insurances, measures of occupational safety or financial support) absorb the negative effects of work-related stress on the quality of life in less privileged populations. It would therefore be interesting to conduct such a study in countries with a less well developed social system.
Who conducted and financed the study?
The SwiSCI-survey, on the data of which the current study is based, is conducted by various collaboration partners within Switzerland (see article on the SwiSCI study design). The ILIAS-project is financed by Swiss Paraplegic Research in Nottwil (Switzerland), the Revalidatiefonds in Odijk and the Dwarslaesiefonds in Amsterdam (both in the Netherlands) as well as the Central Norwegian Regional Health Authority in Stjørdal (Norway). The evaluation of the data for this study on work-related stress was carried out at Swiss Paraplegic Research.
Reasons to go to see an opera, ballet, play or symphony:
To experience something different. No matter what year it was written, most storylines are relatable, whether the story be about revenge, love, loss, betrayal, joy or triumph. Even if it is not your first time, ballet and opera stories are all different.
To listen to something unlike what you hear every other day of the year. While the opera may not be in your mother tongue, there are subtitles above the screen to help provide deeper insight of what is being sung about. The power that an opera singer has to produce such clear sound for the auditorium (without a microphone to boot!) is really incredible.
To watch someone do something that they absolutely love doing. It sounds simple, right? But so much of the news and other bits that we hear and see everyday are negative. I don’t know about everyone else, but sometimes it really affects me and my happiness. I think for the most part, when you watch the dancers, singers or musicians, you can see that it comes directly from their heart. And even if there are no words spoken in a ballet, you understand them all the same.
To try something new. Although some attendees will be well versed in ballet or opera, there is nothing to be ashamed of if you have never been before. If you are nervous, look up the storyline ahead of time and make sure you get there with enough time to get yourself situated.
To dress up for an evening, or not! Do not worry about what to wear. I will also admit that while getting ready for my first opera, I searched on Google for “opera attire” and wow, the amount of fur coats and ball gowns was nearly enough to scare me away, but do not feel intimidated! There will be people dressed a number of different ways. The Zurich Opera says on their website that there is no dress code, to come as you feel comfortable.
To prove yourself wrong. If you think that you would find these performances boring, the Geneva Opera says that it only takes one evening in the opera to realize how wrong you are, and what a fan you have become. I will admit that it is not everyone’s cup of tea. You are bound to have an opinion, just as you would on a new film or album, but at least give it a chance. After all, how do we know if we like something or not if we do not try?
Because they are accessible! All of the mentioned theaters are wheelchair accessible, I have provided as much detail as I could. Remember that sometimes the staff need to rearrange some seats in order to accommodate you, so when you make the reservation always let them know that the ticket is for a wheelchair user and companion if that also applies. They will be happy to help you and reduce your ticket cost as well, which I have specified below. Sometimes attending a show can be quite expensive, however, all of these theaters provide a discount to help with the costs and when you compare it to the price of a meal at a restaurant, it is very reasonable!
So go with your mom, partner, best friend, whomever and have fun while opening your eyes to the delightful world of performing arts!
The Zurich Opera house as we know it today, has been around since 1984, however, the site has a long history of theater dating back to 1834. The Zurich Opera is one of the best in the world, and in 2014 it was awarded the Best Opera Company of the Year at the International Opera Awards. The opera house also hosts Switzerland’s largest professional ballet company, who are known to be one of Europe’s leading ballet ensembles. The building has four available spots for wheelchair users. They are separate from one another, however next to each spot is a seat reserved for a companion, if that applies to you. There are lifts and wheelchair accessible restrooms. Also the ticket office is accessible for wheelchairs and they provide a discount for those with disabilities as well as their companions. For wheelchair users opera tickets cost 95 CHF and ballet tickets 56 CHF. The companion discount is between 115-160 CHF for opera and 85 CHF for ballet. The Parkhaus Opéra has three designated wheelchair accessible parking spots on each floor. You can reach the Zurich Opera also by public transportation. It is located a few hundred meters from Bahnhof Stadelhofen and only a couple minutes from the tram and bus stop “Bellevue”. There is a tram stop directly next to the opera house, called “Opernhaus”, which can be reached by trams number 2 & 4.
At the Theater St. Gallen, the curtain rises around 400 times each year. They offer a variety of theater, opera, symphony and dance in the current building designed by Swiss architect, Claude Paillard. St. Gallen also hosts the St. Galler Festspiele every Summer during June and July. It is held outside and truly something one should not miss if they are in the area! The theater provides six wheelchair places for every performance. The places are together in groups of two, making it a perfect opportunity when two wheelchair users would like to attend and sit together. The ticket office is wheelchair accessible, as well as the restrooms. The price per ticket varies a little bit, because with an IV you are entitled to a 25 % reduction on performances from Monday to Friday, and a 40 % on Sundays. Wheelchair users and their companions also receive a 50 % reduction at all times. Although they have only one parking spot for wheelchair users, there are dozens of transportation opportunities with buses and the stop is “St. Gallen, Theater”.
The Bern City Theater offers about 300 performances every year, in opera, symphony, dance, and musical theater. Established in 1903, they are in need of a renovation and will leave their main building in March to hold their performances in other buildings across the city. The auditorium has five wheelchair places, three are together and the other two are also together. There are companion spots as well. The ticket office and restrooms are wheelchair accessible. They provide a 50 % price reduction for tickets of wheelchair users, as well as for a companion. The theater is accessible with public transportation: tram numbers 6, 7, 8 & 9 from the train station with the stop “Zytglogge”. There are also three wheelchair parking spots in the Parkhaus on Waisenhausplatz.
The Grand Théâtre de Genève opened in 1879 and houses the country’s largest stage for opera and ballet. They have since renovated the auditorium into a typical German shape, which allows the 1,488 seats all to have a clear view of the stage and French & English subtitles. Half an hour before each show, they offer an expert to explain to you the key aspects of the piece. There are four wheelchair places per show which are situated together in pairs. Also companion seats are available. The ticket office and restrooms are wheelchair accessible. A free seating category upgrade for wheelchair users and companions is provided. The theater has many park houses around that are handicap accessible and it can be reached with public transportation as well: bus numbers 3, 5 & 36 and trams 12 & 18 with stop named “Pl. de Neuve”, buses 2, 19 & 23, stop “Bus Stop Théâtre”, as well as buses 1, 2, 19 & 23 and tram 15 at stop “Cirque”.
The Lausanne Opera was built in 1871 and its latest rennovation, including the modern looking attachment, cost over 30 million Swiss Francs. It hosts about 40,000 visitors every year in its 1,000 seat auditorium. Four wheelchair places are available, in sets of two together, although without a companion spot. The price varies a bit per show, costing 65-95 CHF. The ticket office is wheelchair accessible as well as the restrooms. You can reach the opera by public transportation with bus numbers 1, 2, 4, 8, 9 & 17, stop “Georgette”. Parking is available at park house Bellefontaine.
The Theater Basel has a rich history (including being destroyed by fire) dating back to 1834, and it has made many changes in structure and what it offers. The choir was awarded Best Choir of the Year in 2013. They have also added English speaking plays, nice for visitors and expats! They ensure that all of their facilities are barrier-free and fully accesible for wheelchair users. There are four wheelchair places available. All tickets are reduced by 50 % for wheelchair users and a companion. You can park in park houses Theater and Elisabethen or use public transportation: trams number 2, 8 & 11 with stop “Bankverein” and tram 10 to “Theater”.
The Luzern Theater has been around since the 1800s and is the only theater in Central Switzerland that offers such a variety of perfomances, including around 200 performances of plays, dance and opera every year. Although Luzern is a popular tourist attraction, around two thirds of the performance attendees are residents from the Canton of Luzern, The Luzern Theater has an incredible eight places available for wheelchair users! They are grouped together in pairs on either the right or left side of the theater, and with one pair in front of the other. There is not a distinguished companion seat, however you can request to buy a ticket for a seat next to the wheelchair place. Wheelchair users receive a 50 % discount on all tickets. There is public transportation options with buses, however the theater is less than 300 meters from the train station, along the Reuss river and with a view of the famous Kapellbrücke.
Author of summary: Ursina Arnet (Swiss Paraplegic Research)
Original article: Arnet U, van Drongelen S, Scheel-Sailer A, van der Woude LH, Veeger DH. Shoulder load during synchronous handcycling and handrim wheelchair propulsion in persons with paraplegia. Journal of Rehabilitation Medicine. 2012;44(3):222-8.
When using a handcycle, the load on the shoulder is less than when using
a wheelchair. Therefore handcycling should be preferred to using the
wheelchair for longer distances outside or when training.
What was the aim of this study?
On average, half of all people with spinal cord injury (SCI) are suffering from shoulder pain. Often it is unclear what exactly the reason is for the shoulder pain since it is influenced by various factors. The repetitive wheelchair propulsion movement is often named as one of the most frequent reasons for shoulder pain. Researchers therefore want to find out whether alternative forms of transport such as the handbike are more suitable to overcome longer distances. Since the study concentrated on situations of everyday life, the clip-on handbike was tested. This means of transportation consists of the person’s own wheelchair that is connected to an additional unit in front of the wheelchair to move around outside.
How did the researchers proceed?
Eight wheelchair users with paraplegia were invited to the movement laboratory of Swiss Paraplegic Research. On a treadmill they were using the wheelchair and the handbike on four performance levels reaching from easy everyday performance (25 watts) to a performance simulating an inclination of 4% (55 watts). During the tests, the mode of propelling of the subjects was analysed:
The applied forces were measured with sensors inside the handles of the handbike and the handrim of the wheelchair. This shows clearly which means of transport requires more power.
The movement of arms, hands and upper body were recorded using reflective markers and then depicted three-dimensionally.
Figure 1: test setup
The results were combined in a mathematic model of the shoulder. This allowed calculating which force impacts the shoulder joint, i.e. with
how much strength the humerus is pressing on the socket of the shoulder
joint. Furthermore, it was analysed when which shoulder muscle is active
and how much. Both these results reflect the load on the shoulder
joint. This made it possible to compare the shoulder load when using a
handbike compared to the shoulder load when using a wheelchair.
What did the researchers discover?
results show that the shoulder load is higher when a wheelchair is
used. The maximum joint force is twice as high when using a wheelchair
compared with the handbike (see figure 2). The highest forces were
measured in the middle of the propulsion phase when using the
wheelchair, whereas the strongest forces when using the handbike were
measured when lifting the crank. Also the average values of the forces
measured throughout a complete cycle (one crank rotation on the
handbike; propulsion and return phase on the wheelchair) are lower when
using a handbike.
Figure 2: force on shoulder joint at a power of 55 watt
In addition to the joint forces, also the muscle forces are higher on the wheelchair. The biggest differences were
determined for both the supraspinatus and infraspinatus muscles. These
are both muscles of the rotator cuffs that are stabilizing the shoulder
joint and thus protecting from injuries.
What do these findings mean?
studies have shown that strong and frequent forces on the shoulder
joint can lead to injuries. Due to the short propulsion phase, the
maximum forces when using a wheelchair are very high. Since the shoulder
joint forces during the complete cycle are also higher than when using a
handbike, there is a higher risk of shoulder injuries when using a
wheelchair. When using a wheelchair, the muscles of the rotator
cuffs, which stabilize the shoulder joint, are more heavily used than
when using the handbike. If the wheelchair is propelled for longer
periods, the risk of overfatigue of these muscles is higher which may
lower their ability to protect the shoulder joint optimally and make it
prone to injury and pain. The results of the study have shown that
the handbike is not only more efficient but also that there is a smaller
shoulder load. Therefore the handbike should be the preferred means of
transportation for the outside and for training.
Who conducted and financed the study?
The study was carried out and financed by Swiss Paraplegic Research (Switzerland).
Fresh winter air in your face, that feeling as if you were flying, people all around you laughing and having a good time, Christmas-time music in your ears… All that on a sparkling winter day, on a smooth ice surface and wearing ice-skates on your feet… or a wheelchair ice glider under your wheels.
Years ago in my hometown Ulbroka, Latvia, where a frozen lake and frost covered reeds around is phenomena, that occurs every Winter, I once saw a boy from my school skating together with his girlfriend. Nothing unusual about this unless the fact, that his girlfriend was being rolled over the ice in a wheelchair. Fifteen years ago, skating in a wheelchair was not possible for her, but today it is, and in quite an amazing way.
In January 2014 at a skating rink in Weyermannshaus, Switzerland, an ice glider was introduced to its potential users. The ice glider consists of a steel frame and a pair of blades attached to it. The wheels of most wheelchairs can be fixed on the one metre long frame. To get onto the frame, one needs to use a special ramp that is available together with the ice glider.
Getting on the ice glider. Source: www.cerebral.ch
Visiting a skating rink is a great fun if you do it together with your friends. However, the ice glider gives you an opportunity to skate on your own as well, namely, using a pair of sticks with an ice pick attached. This makes the skater truly independent. Some people say, one can even get a positive addiction to the crunching sound of blades cutting into the ice…
Moving around on the ice with the help of sticks. Source: http://www.rinnrutschen.de/Sportgeraete/Eisgleiter
Whom else would one expect behind this luge-alike tool if not a past luge sport legend? Hans Rinn, former German athlete, two time Olympic Gold medallist in doubles and Bronze medallist in singles, is now working as a luging judge and building different gliding and sliding tools. Apart from the luge-alike wheelchair glider, he is also building sliding pipes for swimming pools. He produced the ice glider together with his colleagues Karin Schorbach and Gerhard Kirchner.
Starting from this skating season, ice gliders are ready for use in skating rinks in Zürich, Bern, Gstaad, Davos… More Swiss skating rinks in other cities are expected to have ice gliders during the season 2014/2015. The author of this initiative is the Foundation Cerebral. Their goal is to hand out ice gliders for free use in around 20 skating rinks all over Switzerland, to open a brand new activity window for wheelchair users together with their families. Rather high costs of 2’000 CHF (approximately 1’600 EUR) apiece are covered by donations.
Now, there is a pair of steel wings given to the wheelchair users to make them able to fly over the ice. Let us hope, that soon more and more countries will provide free flight access to their citizens. And who knows, maybe soon there will be masses standing behind the boards of a skating rink and admiring pirouettes of wheelchair users as their (ice glider using) techniques advance?
Author of summary: Claudia Zanini (Swiss Paraplegic Research)
Original article: Maino P, Zanini C. Il dolore tra medico e paziente, come comunicarlo, come comprenderlo. Rivista per le Medical Humanities. 2013;24(7):16-23.
When it comes to chronic pain, communication plays a crucial role, because to establish the diagnosis and propose a treatment, the doctor needs a patients' assessment, and because patients attribute importance to doctors' communication skills. It is therefore essential to improve communication and tools that help facilitate it to finally bring together doctors and patients with chronic pain.
What was the aim of this study?
Chronic pain is an increasing problem in today's society. In Europe alone, an estimated one in every five people suffers from it. There are existing guidelines for the treatment of pain and tools for its measurement, however, many studies show that patients with chronic pain are often treated improperly. Nevertheless, finding an appropriate therapy is important, because the consequences associated with chronic pain, such as decreased physical performance, depression, anxiety and insomnia, have an impact not only on the quality of life of the persons, but also on their productivity. In fact, physical disability can cause an economic loss, and an overuse of healthcare services.
In the article, the researchers present reflections on the reasons for inadequate management of patients with pain, and propose ideas to improve the situation.
How did the researchers proceed?
The researchers based their study on data from the scientific literature.
What did the researchers discover?
Main reasons for an inadequate management of patients with pain
Cultural reason: in our society there is an idea that pain is just another part of life. Patients do make an effort to be “good” patients, they try to be stoic and tough it out, until perhaps, the pain has become unbearable, causing them to finally visit a doctor. Furthermore, many religions have attributed pain to be a spiritual dimension that almost makes it desirable, as the means to get closer to the transcendent. In contrast, within the last decade, several international associations and organizations have stated that pain relief is a part of every person's rights and that doctors have to pursue this goal.
Institutional reason: health policies that aim to regulate the use of drugs often reflect societal prejudices and do not seem to distinguish addiction from therapeutic use. In addition, some studies suggest that the training of health professionals often does not reflect the latest scientific knowledge about pain therapy.
Practical reason: doctors and patients have difficulty in communicating and measuring pain. These difficulties are due to the unfeasibility of replacing the evaluation of the patient with the observation of physiological parameters (e.g., a thermometer to measure pain does not exist). Relying on patients' words can be challenging for physicians, who are used to assessing the severity of a health condition from the observation of objective parameters.
Tips for a better management of chronic pain patients
Systematic use of the instruments for the measurement of pain: there are several tools to quantify patients' pain. One of these is the verbal numeric scale of pain, in which patients indicate their pain level by choosing a number (from 0 = no pain to 10 = worst possible pain) that best corresponds to their feelings. Some studies have shown that in Europe only a few doctors actually use these tools. In most cases, the assessment of pain is done through a patient's self-assessment or through a physician's assessment based on the observation of physiological parameters.
Verbal numeric scale of pain (Source: www.vicburns.org.au, The Victorian Adult Burns Service, Alfred Health, Melbourne/AUS)
Ask patients to describe their pain: taking into account that pain assessment is done mostly based off the perception of the patient, it is important that health professionals encourage patients to express themselves freely, by explaining that their assessment is useful to select the most appropriate treatment for them.
Revise some health policies: current health policies hinder the implementation of the World Health Organization's recommendations, which advise the administration of opioids for the treatment of moderate to severe chronic pain. These policies could be revised to allow the medical use of opioids.
What do these findings mean?
When it comes to chronic pain, communication plays a crucial role for two main reasons. The first is related to the fact that communication is an essential instrument in measuring pain: to establish the diagnosis and propose a treatment, the doctor needs a patients' assessment. The second reason is linked to the importance that patients attribute to doctors' communication skills. It is essential that these are systematically developed during medical education programs in order to create a welcoming and comfortable atmosphere for patients and their pain. Communication and tools that help facilitate it could be what it takes to finally bring together doctors and patients with chronic pain.
Communication between doctor and patient (Source: ePharma Summit blog)
Author: Per von Groote (Swiss Paraplegic Research)
Swiss Paraplegic Research in collaboration with the World Health Organization (WHO) has developed a unique report with the title “International perspectives on spinal cord injury” (IPSCI). The report has already been published in English and now recently also in German, French and Spanish. It can be downloaded in the various languages at http://www.who.int/disabilities/policies/spinal_cord_injury/report/en/. The summary of the report in English is attached to this article as PDF.
For the first time WHO has devoted a whole report to the concerns of people with spinal cord injury. On more than 200 pages, the report presents information on spinal cord injury with a focus on epidemiology, services, interventions and important policies, as well as on the lived experience of people with spinal cord injury across the life course and throughout the world. Each chapter is introduced with statements of people with spinal cord injury which form a concrete and realistic connection between the topics following thereafter. The end of each chapter gives recommendations for measures that are based on scientific evidence and that are aligned with the goals integration and participation of the UN Convention on the Rights of Persons with Disabilities (CRPD).
Front page of the first WHO report on spinal cord injury
Recently the British Medical Association elected the IPSCI report as one of the most recommended books in the category “public health” for 2014 – see the attached media release (in German).
“This report has potential to change lives and open doors. I urge the world's policy-makers to pay attention to its findings.” Dr. Margaret Chan, WHO Director General
Author of summary: Ursina Arnet (Swiss Paraplegic Research)
Original article: Arnet U, Muzykewicz DA, Friden J, Lieber RL. Intrinsic Hand Muscle Function, Part 1: Creating a Functional Grasp. The Journal of Hand Surgery (American Volume). 2013;38(11):2093-99.
To obtain an optimal and functional grasping movement, the intrinsic muscles should be integrated when performing a tendon transfer with the
goal to recover the flexing function of the finger.
What was the aim of the study?
People with a tetraplegia often report that regaining hand function would be most important when it comes to body functions that were lost due to the paralysis. For many people it is possible to regain certain finger functions with the help of a tendon transfer. The finger flexion for example can be recovered through a transfer of the tendon of the extensor carpi radialis longus (muscle that stretches the wrist) to the tendon of the flexor digitorum profundus (muscle that flexes index to little finger). However, if only the flexion of the finger is recovered, the finger can only curl up. This means that the distance between the fingertips and the palm is very small during the grasping movement and therefore it is impossible to grasp larger objects. Therefore, it is important to increase the distance between the fingertip and the palm to obtain an optimal functional grasping movement. If the hand function is intact, the intrinsic hand muscles execute the fine coordination of the finger movements. These small muscles are situated in the palm of the hand and are attached to the sides of the four fingers (index to little finger). It was the goal of this study to find out, which role the intrinsic hand muscles play with regard to a functional grasping movement.
How did the researchers proceed?
Five hands were examined that were provided by deceased people. The tendons of the finger flexors were attached to a motor to simulate the grasping movement. The motor was adjusted so that the fingers of the open hand (stretched fingers) curled up into a fist. To simulate the different activity levels of the intrinsic hand muscles, five weights were attached to the intrinsic muscles (0 g = passive muscles, 125 g, 250 g, 375 g, and 500 g = maximal weight with which the fingers remain extended at the start of the movement).
The finger movement was video-taped. With that, the angles of each of the finger joints, the sequence of the joint movement and the distance between fingertip and palm were calculated. Then these measured values were compared between the activity levels of the intrinsic muscles.
What did the researchers discover?
In case of passive intrinsic muscles the fingers curled up (see figure 1): The fingers first flexed at the distal interphalangeal joints (exterior joints of the finger) and at the proximal interphalangeal joints (middle joints). Only in the second half of the movement the fingers also flexed in the metacarpophalangeal joints (joints that connect the fingers with the palm).
Figure 1: finger movement at three different activity levels of the intrinsic hand muscles
The movement pattern changed with strong activation of the intrinsic muscles: the fingers first flexed at the metacarpophalangeal joints and
only after that they curled in (see figure 1). Through this movement
pattern the distance between fingertip and palm was larger during the
movement (see figure 2): Compared to the passive intrinsic muscles it
increased by 2 cm with active intrinsic muscles.
Figure 2: position of the fingertip of the middle finger during the grasping movement
What do these findings mean?
The results of this study showed that the distance between the
fingertips and the palm increases through the additional activation of
the intrinsic finger muscles. The difference of two centimetres is quite
big with regard to the grasping movement and this can be a decisive
factor, if a person can grasp an object by himself or needs additional
help. With active intrinsic muscles it is possible to grasp e.g. a
standard soft drink can, whereas with passive muscles it is not
possible. Consequently, the grasping movement was more functional with
the additional intrinsic muscles. This means, with regard to tendon transfers, that it is recommended to
include also the intrinsic muscles when recovering the finger flexion to
achieve an optimal functional grasping movement.
Who conducted and financed the study?
The study was funded and conducted by Swiss Paraplegic Research and the
Muscle Physiology Laboratory of the University of California in San
Authors of summary: Jan D. Reinhardt (Swiss Paraplegic Research)
Original article: Reinhardt JD, Pennycott A, Fellinghauer BA. Impact of a film portrayal of a police officer with spinal cord injury on attitudes towards disability: a media effects experiment. Disability and Rehabilitation. 2014;36(4):289-94.
Media portrayals of people with disabilities play an important role in forming attitudes of the general public. This study showed that a
positive depiction of a person with paraplegia in an active role as a
police detective improved peoples' ideas about the suitability of
persons with paraplegia for employment.
What was the aim of this study?
Some recent studies show that media consumption can cultivate beliefs about reality, and this may be particularly true for those generations which have grown up with the television and online media culture. In addition, personal contacts and experiences with disabled persons are rather rare in the general population, so that the utilisation of unconscious media knowledge in the assessment of persons with disabilities and their roles in society is very likely. Disability is a common theme of many media productions, ranging from texts like Homer's "Ilias" and the Bible, modern novels such as "Moby Dick" and "Heidi" to films such as "Unbreakable", "Rain Man" and TV-series such as "House" and "Monk". In the past, media fiction has been criticised for depicting people with disabilities in a stereotypical and negative way, for instance as dependent on others, sexually abnormal, or evil. Positive media representations of persons with disabilities in common media roles such as doctors or police officers are rare.
This study examined whether a positive portrayal of a man with paraplegia as a police officer in an action scene would improve attitudes of people with and without disability regarding the suitability of persons with paraplegia for employment.
How did the researchers proceed?
480 study participants with and without disability were recruited on two occasions: In 2010, 376 subjects participated in an online assessment using the networks of the Swiss Paraplegics Association and the Centre for Independent Living Zurich as well as the private networks of the researchers. In addition, 104 additional participants were recruited at the 20th Anniversary Exposition of the Swiss Paraplegic Centre in 2011. All participants viewed a film scene featuring lead actor Sven Martinek in the TV-series "SOKO Rhein-Main" that was broadcasted in Germany in 2006/2007. In this action scene Martinek plays a police officer with paraplegia and arrests a man who robbed a taxi driver. Martinek actively uses his wheelchair to overpower the robber. The following questions were posed to the participants immediately before and after they watched the film scene:
Please tell us in percentage terms (100% is the eligibility of a person without a disability) how eligible a person with paraplegia is for the following jobs: roofer, police officer, carpenter, teacher, physician, and clerk.
What percentage of persons with disabilities living in Switzerland is in remunerative employment?
What is, in percentage terms, the productivity of a 40-year-old man with paraplegia (corresponding to the featured detective) in comparison with a 40-year-old man without disability?
What did the researchers discover?
After having watched the film scene study participants without disabilities stated that a person with paraplegia was more suitable for employment than before the screening. Moreover, the estimates of the employment rate of persons with disabilities were significantly enhanced in non-disabled study participants after watching the film scene. Study participants with a disability, however, did not change their assessment. The productivity of a 40-year-old man with paraplegia was estimated to be slightly higher after the film and nearly up to 100% in both groups of study participants.
What do these findings mean?
In this study, it was demonstrated that portraying persons with paraplegia in positively connoted and active roles can improve the general public's attitudes regarding employment of persons with a physical disability. In conclusion, it is desirable that the mass media more often feature persons with disabilities in positive and active roles. This may support their empowerment in real life. The above described film scene may serve as a positive example.
Who conducted and financed the study?
This study was funded by Swiss Paraplegic Research and conducted by researchers from Swiss Paraplegic Research, ETH Zurich, and students from the University of Lucerne.
Author of summary: Sue Bertschy (Swiss Paraplegic Research)
Original article: Bertschy S, Reinhardt JD. Disability Sport in the Swiss Media. In: Schantz OJ, Gilbert K, eds. Heroes or Zeros? The Media's Perceptions of Paralympic Sport. Common Ground Publishing; 2012.
Disability Sports are not only underrepresented in the media, but also
the way of media coverage differs from able bodied sports events. A
summary of a study, that was published 2012 in the magazine
“Paracontact”, addressed the differences regarding media coverage of the
2008 Olympic and Paralympic Games in Beijing. On the occasion of the
Paralympic Winter games that are held in spring 2014 in Sotchi, we
present the article here in the Research Corner.
Research in the area of sports journalism has gained in importance during the last three decades. The majority of the studies criticised sports reporting for using metaphorical language, underrepresenting women, lacking background information, but also for the high focus on the individual person (personalisation) as well as on only a few disciplines. Marginalized sports, and sports for disabled people in particular, are underrepresented in the media and compared to popular sports they are only rarely associated with high-performance sports.
The media should not be underestimated when it comes to sources of information about the life and capacities of people with disabilities, and sometimes they are indeed the only source. Media sports also have a “social function” because they facilitate the identification with athletes as well as emotional relationships which are also called “parasocial relationships”. Especially personalisation in the coverage about sports serves as an important basis for the reader's identification process. The reader can then relate to the positive portrayal of the athletes’ characteristics.
The initial point for a research study conducted at Swiss Paraplegic Research was the presumption that there are significant differences with regard to the media coverage about athletes with and without disabilities. On the basis of different theories, researchers analysed all sports articles on the Paralympic and Olympic Games in Beijing 2008 which were published over a period of eight months in the German-speaking Swiss daily and weekly newspapers.
Media coverage of the Swiss press about the Paralympic Games in Beijing 2008
The results showed that the media conveyed a rather biased image of the Games. The number of articles in German-speaking Swiss newspapers about the Olympics was three times higher than about the Paralympics. Differences within the genre could be found with regard to content, form and layout of the sports coverage. Newsflashes and short news articles characterized the media coverage about the Paralympics. In the case of the Olympics, however, the spectrum of various formats such as reports and ironical comments was substantially larger.
Every fifth report on the Olympic Games mentioned also athletes from other countries and the successes and records of high flyers Usain Bolt and Michael Phelps were particularly popular. The media coverage of the Paralympics was mainly in light of a national context, since the press exclusively reported about Swiss achievements but ignored the successes and competitors from other countries in the news. In addition, brilliant results were needed for being featured by the media. Compared to the Olympics, an “Olympic diploma” (forth – eighth place) was not good enough. At both Games the focus regarding images and texts was on sports performed by male athletes – only every fifth image featured a woman.
“I’m your fan”
The reasons for lacking attention of the media coverage of the Paralympics might have been missing factors like “popularity” and “attractiveness of the athletes” (prominence). In the study the researchers therefore also focused on the factors of personalisation within media coverage.
They found out that individual “fate” and “coping in everyday life” were included in the reports about the Paralympics only (see chart 1). Based on the examples of the two race-bikers Heinz Frei (Paralympics) and Fabian Cancellara (Olympics) these preferences could be well observed. The personalisation of Heinz Frei was mainly constructed through disability-typical categories like “fate” and “coping in everyday life”, whereas in relation to Cancellara, topics like character, family etc. were cited.
Chart 1: indicators of personalisation
For athletes with a disability, the grade of prominence and personalisation should be increased, so that their sport can gain wider
public recognition and, moreover, that important marketing-relevant
parasocial relationships can be facilitated. Stories of fate and drama
should not constantly be employed to generate media exposure or
advertising revenues, as is the case in the five-times gold medal
swimming champion Natalie du Toit: “It’s not the medals of the
Paralympics that bring in sponsors and attention. I know that it’s my
character and my story, that are fascinating.”
Representation of athletic performances and of success in the media
fundamental aspect of media sports coverage is the analysis of the
athletic performance. The study clearly showed that the performance
aspects were less discussed in the articles about the Paralympic Games.
The researchers tested the appearance of terms and topics which are
often used in relation to high-performance sports, like “performance
goals”, “professional”, “training units”, “coach” etc. At the
Paralympics, these were mentioned 1.02 times per article on average
which was considerably less than at the Olympics with 1.66 times.
similar approach could be seen in the concrete in-depth analysis of the
respective athletic performances (see chart 2). Frequently mentioned
success criteria in terms of Olympic media coverage were the preparation
for a competition, the conditions on the competition day, and the other
starting competitors. The articles about the Paralympics, however,
reported such success criteria substantially less often.
Chart 2: success criteria
Through the medially induced appreciation of the athletic performance – and not
of the person's fate – athletes with a disability are rewarded for the
efforts to achieve their goals. Heinz Frei formulated this very
accurately: “I don't have to defer myself behind a super league soccer
player. My efforts are just as intensive and professional, possibly even
more substantial. I cannot afford escapades. My body is my capital and
therefore I have to manage daily life with discipline and responsibly”
(Heinz Frei, 2009).
Heinz Frei, 15 times gold medal winner at the Paralympics
Athletes with a disability deserve the same attention by the media as able-bodied athletes do. It is important to
talk about oneself and to share insights of daily life – however, also
athletic performances, successes and the competitive situation should be
mentioned by the media.
This study was about the Games in
Beijing in the year 2008. Unfortunately, no more updated scientific
analysis is available, but there are indications that the presence of
the Paralympics in the media has improved since then.
from Paracontact 2/2012, Swiss Paraplegics Association (updated)
Authors: Claudia Zanini and Julia Amann (Swiss Paraplegic Research)
Quantitative and qualitative research methods are two different
traditions, whereby quantitative research is about measuring things and
qualitative research is more explorative, aiming to understand the
'insider' perspective of a phenomenon.
Quantitative and qualitative research are two different traditions, linked to different disciplines: quantitative research is traditionally linked to hard sciences (e.g. biology) and qualitative research to social sciences (e.g. sociology). Simply put, quantitative research is about numbers and aims to count and measure things, whereas qualitative research is about words and aims to understand the “insider" perspective of a phenomenon. You find below a table with the major distinctive characteristics of qualitative and quantitative research:
Seeks to test assumptions (hypotheses) about phenomena (e.g. spinal cord injury)
Highly structured research
Usually a large number of participants, who are representative of the
population of interest (e.g. persons with spinal cord injury)
Seeks to explore phenomena; often used in areas of research where only little is known about the subject of study
Usually a small, non-representative sample of the population of interest
Identify and measure causal relationships among things (X causes Y)
Generalize results from a sample to a given population
Numerically describe characteristics of a population
Describe and gain understanding of individual experiences and group norms (e.g. underlying reasons and motivations)
Explore phenomena from the insider perspective
Example of a research question
“What is the relationship between online information and self-management of spinal cord injury?"
“How do persons with spinal cord injury use online information to improve their self-management skills?"
E.g. surveys, questionnaires => Closed-ended questions (e.g. “Do you think that online information is useful – yes or no?")
E.g. interviews, focus groups, observation => Open-ended questions (e.g. “What do you think about online information?")
Analysis of numerical data by means of statistics
Analysis of data such as words (audiotapes, transcripts), pictures, or
videotapes by means of specific methods (e.g. content analysis and
Advantages & disadvantages
Can help to establish causal relationships
Difficulty in defining the “right" questions
Allows the participants to respond in their own words
Enables the researcher to ask follow-up questions to explore the “why" or “how"
Does not allow generalizability of results
Experimenter bias: the researcher is part of the interaction and could
influence it by his presence or by the questions he raises
Author: Andrea Glässel (Swiss Paraplegic Research)
Sources: 1) Fink A. The Survey Handbook. 2nd ed. Thousand Oaks, CA: SAGE Publications; 2002. 2) Carter R, Lubinsky J, Domholdt E. Rehabilitation Research: Principles and Applications. 4th ed. St. Louis, MO: Elsevier Saunders; 2010.
A survey is a special type of questionnaire carried out to find answers
to research questions. For this purpose, the researchers ask a defined
target group for their opinion, facts, behaviour patterns and other
things, using different means, e.g. the telephone, online-surveys or
questionnaires in paper form.
This article focuses on the survey as research method and form of questionnaire. Many results in the field of spinal cord injury (SCI) have been collected through surveys, some of which can also be found as short article here on “Research Corner".
What is a survey or a research survey? A survey is a wide-spread research method used to obtain revealing information from certain people or a certain group of people that are of interest to the researchers (the so called target group). This includes their opinion, practical knowledge, facts, behaviour patterns or other information. Survey research is based on the information provided by the respondents themselves (the research subjects) and is collected e.g. by telephone, online-surveys, or questionnaires in paper form. The survey takes place at a given time (so called reference date) and can be repeated after a defined period of time to check the evolution of the analysed aspects (so called longitudinal study).
A survey also aims at collecting sociodemographic details such as age, gender, marital status and occupation. There are two reasons for this. On the one hand, this makes it possible to specify the group of participants (so called sample) and on the other hand the data can hence be evaluated in relation to the answers collected in the survey. For example: in which manner were the questionnaires answered by men or women, young or elderly people and is there an explanation for that? A survey requires some reflection on the group of participants in advance. Who should participate and how can these people be identified? For a survey it is essential to find as many participants as possible to achieve the most precise results possible. The participants have to be willing to answer the questions in a comprehensive, unbiased and honest manner.
How is a survey carried out? The process usually starts with a research interest in a phenomenon which can be studied by means of a survey, whereby the exact formulation of the question is very important. There are two types of questions: closed questions where the participants can choose between given response options and open questions where the participants have to answer using their own words. One example for an open question taken from a Swiss survey on SCI is the following: “What are your biggest problems in everyday life with SCI?" (The results can be found soon in another article in the Research Corner).
Surveys can be carried out in different ways. Common forms are telephone interviews, sending out questionnaires in paper form, online-surveys (the questionnaire is completed online), and also personal interviews with the participants (e.g. surveys on the street or in the supermarket). All of the forms mentioned have both advantages and disadvantages that have to be taken into consideration when choosing one of them. The various forms may also be combined.
Surveys on paraforum You can also participate in various surveys on SCI here in the Research Corner and thus support research in this field. Therefore we kindly ask you to share your practical experience regarding SCI with us by participating in these surveys. Your answers may help to detect research gaps. We are looking forward to your participation!
Author of summary: Albert Marti (Swiss Paraplegic Research)
Original article: Marti A, Reinhardt JD, Graf S, Escorpizo R, Post MWM. To work or not to work: labour market participation of people with spinal cord injury living in Switzerland. Spinal Cord. 2012;50(7):521-6.
In Switzerland more people with spinal cord injury are employed (63.8%) than in other
countries. This study shows that the reasons why paraplegics are working
are of social nature. The reasons for unemployment are often health
What was the aim of this study?
Work is an important part of social life. Research shows that work does not only ensure to make a living but also has a positive impact on health, well-being and social integration. This is especially true when it comes to people with disabilities. Unfortunately, they are far too often excluded from professional life. In Europe and the U.S., the average percentage of people with spinal cord injury (SCI) in paid work is approx. 35%. The figures for Switzerland were unknown so far. Therefore the study aimed at collecting data with regard to the employment of people with SCI and to analyse the reasons for and consequences of their employment.
How did the researchers proceed?
In 2008, members of the Swiss Paraplegics Association that have been suffering from SCI for at least one year were asked to answer questions concerning their employment. 495 people participated in the study (for the socio-demographic characteristics of the participants see figure 1).
Figure 1: socio-demographic characteristics of the study participants
What did the researchers discover?
63.8% of the participants were employed – a quite high percentage
compared to other countries. Quite astonishing was the fact that the
percentage of employed tetraplegics was almost the same as that of
employed paraplegics (63.4% vs. 64.7%). There were only major
differences between the two groups with regard to the amount of
employment (47.5% vs. 58.3%). The importance of the work was mentioned as the factor with the
strongest influence on employment. Therefore the importance of work was
compared with the importance of other areas of life, such as sports,
family/partner, friends and other leisure time activities. In general,
it could be seen that the importance of work decreased after the SCI,
whereas family became more and more important. Just like in other
studies, the educational background was also an important factor in this
study: With each year of education, the employment chances of people
increased by 12%. Age also played an important role. With 82%, the group
of people between 40 and 44 showed the highest employment rate – this
was almost the rate of the general population which is at 91%. However,
only 35% of the 60 to 64-year-olds were employed (see figure 2).
Figure 2: proportion of persons employed according to age category
When asked why they work, the following three reasons were the ones mentioned the most: “work satisfies me” (85%), “work provides social
contacts” (71%) and “I need the money” (70%). Unemployed participants
mentioned the following reasons for not working: “my health problems
are too serious” (57%), “the pain is too severe” (50%) and “I haven’t
been able to find a suitable job (37%)”. Surprisingly huge is the gap
between employed and unemployed people with regard to income. According
to this study, the income of people that were working was on average 40%
higher than that of non-working people.
What do these findings mean?
The study suggests that in Switzerland the reintegration of people with
SCI into the labour market seems to work quite well. Possible reasons
for this might be the overall positive situation at the Swiss labour
market (low unemployment rate), as well as the structure of the labour
market (many jobs in the office-, service- and computer sector that can
be done by wheelchair users). Furthermore, most workplaces are
accessible (accessibility and transport) and there is a comprehensive
vocational rehabilitation offer. The high percentage of employed
tetraplegics amongst other things might be due to the mostly good
technical and financial possibilities (customized computer and
workplace, converting of the car to get to work etc.) Due to these
possibilities, even people with the most severe disabilities are able to
participate in professional life. People with SCI go to work for social reasons. The findings of this
study confirm other research results and show that work plays a decisive
role with regard to social integration. In most cases, the reasons why
people do not work were related to health problems. This shows that,
unlike in other countries, in Switzerland it is not the lack of
infrastructure or transportation problems that lead to unemployment, but
mainly the health problems caused by the spinal cord injury. One of the consequences of employment is the significantly higher total
income (wages and pension) of employed people. The legislator wants
work to pay off. However, it is quite surprising that the financial
situation of people who cannot work and have to live on pension payments
(people with serious health problems and those with the most severe
disabilities) is so much worse. To summarise: According to this study, younger, well-trained and
motivated people with only moderate health problems are the ones that
are most likely to find employment – therefore, their financial
situation is significantly better.
Who conducted and financed the study?
The study was carried out and financed by Swiss Paraplegic Research in Nottwil (Switzerland).
Anderson D, Dumont S, Azzaria L, Le Bourdais M, Noreau L.
Determinants of return to work among spinal cord injury patients: a
literature review. Journal of Vocational Rehabilitation. 2007;27(1):
Lidal IB, Huynh TK, Biering-Sørensen F. Return to work
following spinal cord injury: a review. Disability and Rehabilitation.
Ottomanelli L, Lind L. Review of critical
factors related to employment after spinal cord injury: implications
for research and vocational services. The Journal of Spinal Cord
Medicine. 2009;32(5): 503-31.
Source: World Health Organization (WHO). International Classification of Functioning, Disability and Health (ICF). Geneva: 2001.
We live in a society that, without doubt, is obsessed with health and
quality of life, and quite often we have the urge to try to achieve
optimal “functioning”. But what does it actually mean, to be healthy?
Surely everybody experiences some sort of disease, sickness or
disability in their life – be it temporary or as a lifelong health
To get clear about what it means to be healthy, the World Health Organization (WHO) developed first a framework and then a unified and standardized language for the description of health, health-related states and in the year 2001: the International Classification of Functioning, Disability and Health (ICF). Since the ICF has become a very important player in the game of rehabilitation, research, health services and policies, we want to shed some light on the red book that has helped us to make sense of health and disability.
One brand – two products First of all, it is very important to highlight that the ICF has two sides: one is the philosophical and conceptual model and framework of health and functioning, and the other is the application-oriented classification with its unique coding system. Let’s start with the basic model that is our point of departure. Before the ICF was developed, other conceptual frameworks tried to capture the full scope of health conditions and their consequences. But the ICF brought a new concept to the field -- “functioning”. This term summarizes all body functions, activities and participations in relation to a person’s life situation. The opposite to functioning is disability, which signifies impairments, activity limitations or participation restrictions. Both concepts describe things that only exist in coexistence with our environment as well as with the personal background that constitute every one of us. Therefore, the ICF not only disentangled the dichotomy between “healthy and unhealthy” but also shifted the paradigm towards the human lived experience. The comprehensive model depicted below shows the interconnectedness and dependency of our health related constituents. In addition, the illustration shows nicely that the ICF framework consists of five domains that all have an equal influence on our health condition and the lived experience: body functions and structures, activities, participation, environmental and personal factors. Since this model serves more like a basic philosophy of health, the WHO developed the ICF classification based on this framework to provide health care stakeholders with a standardized and universal language of functioning for the clinical setting as well as for service providers’ and policymaking processes. An example might help to highlight the benefit of using the ICF categories for the communication between health and health-related professionals. Let’s say we have three people with a tetraplegia, all of them with the diagnosis of C5 complete. This assessment does not say anything about each person’s individual level of functioning or their capacities. The ICF categories, however, can help to describe any physical, environmental, participatory or activity related factor that allows us to make a detailed description of the person’s individual level of functioning. Whereas one person might have moderate problems with limited hand function, another might be able to compensate this performance problem by sheer willpower, physical skill or other individual strategies. Since the ICF categories represent each individual’s capacity and performance, for example rehabilitation staff but also service providers of an insurance gain invaluable insight of the person’s health condition which then allows for specific and individual interventions and service provision. The classification integrates the five domains depicted in the illustration above and organizes them according to categories that describe basic physical functions up to very complex functions like having and keeping a job. By structuring and universalizing human functioning in relation to external environmental factors, it is now possible not only to design a comprehensive profile of a person’s health condition, it is also possible for that profile to be used across health related professions.
Aims and application of the ICF The aims of the ICF classification are to improve the communication between different users in the health care sector, but also between researchers, policy makers and the wider public, including people with disabilities. Furthermore, the unified coding system allows to compare data across countries (providing an international context), health care disciplines and time. The holistic character of the ICF framework and classification make its application areas manifold. It can be used as a statistical tool to collect and record data (surveys, studies, population studies), it can serve as a research tool to measure outcomes, quality of life, and environmental factors. When it comes to need assessments matching treatments with specific conditions, vocational assessment, rehabilitation and outcome evaluation, the classification can be a very valuable clinical tool which also holds true as a social policy tool for security planning, compensation systems, and policy design in the field of health. Last but not least, the ICF classification can serve as an educational tool with regard to curriculum design, for raising awareness or to undertake social action. One could say that the ICF is a new organizational system for health-related information and that it has the potential to negotiate via a standardized, universal language between health professionals, funding agencies and policymakers to increase the quality of life, chances and fair opportunities of people with a health condition.
SwiSCI, the most comprehensive study on spinal cord injury in
Switzerland is a so called cohort study. This means that people
concerned are surveyed over a long period of time in order to examine
the development of their health and quality of life. Potential problems,
e.g., in the Swiss supply system, can thus be detected.
What is the aim of this article?
The aim of this article is to present the methodical structure of the SwiSCI study. The term “study design” refers to all approaches adopted within the course of a study. SwiSCI is a cohort study – as such it aims at collecting data of people with spinal cord injury (SCI) in Switzerland over the course of a life span. The objective is to learn more about the life situation, functioning, health and quality of life of the people concerned. The study captures elements such as health-related behaviour, health care, social participation, labour market integration and measures to support healthy ageing. Thus, problems and needs of people with SCI can be identified systematically.
How is the study designed?
The SwiSCI study consists of three studies, the so-called “pathways”. Taken together, they form a continuous cohort study. The people surveyed were paraplegics or tetraplegics in Switzerland who are older than 16 years. These people are contacted by SwiSCI-collaboration partners (see below), and in case they agree to participate, they will be questioned every five years.
Pathway 1 is a study based on medical records, Pathway 2 is a population survey among people with spinal cord injury and Pathway 3 includes people in rehabilitation clinics that have just started first rehabilitation right after SCI.
The aim of this part of the study is to collect personal details of people whose SCI occurred before the launch of Pathway 3 in 2013. The relevant data is extracted from the medical records and includes information such as
socio-demographic data as well as information with regard to the cause of the SCI, co-morbid injuries and diseases, surgery methods and medication, the neurological status and the living conditions and therapeutic treatment after leaving the hospital. The retrospective study is based on the existing files and does not include any surveys or tests.
The second part of the study includes a survey carried out among people with SCI. The collected data provides information on the current situation of people with SCI in Switzerland with regard to their life circumstances, job and health care. This includes information about the medical condition, health-related behaviour, everyday life, professional life, but also about the personal environment and general satisfaction.
The participants receive questionnaires on various topics that they can answer by mail, online or via telephone. This survey was carried out for the first time between September 2011 and March 2013 and is going to be repeated every five years.
Pathway 3 includes people with acute spinal cord injuries who are treated in one of the four collaborating rehabilitation centres for people with SCI. In the hospital, data is collected with regard to the medical condition, pain, family and financial situation and health-related behaviour but also concerning the progress made during rehabilitation and with respect to functioning. This is done by means of questionnaires and clinical tests on functioning. Most of the tests are part of the clinical routine examinations.
This data collection helps to analyse the effectiveness of assistive devices so that their use can be adapted. The study results enable optimization of rehabilitation as well as the provision and care situation at home. People with SCI can thus be supported in a more targeted way after first rehabilitation, in order to ensure the highest possible level of autonomy and quality of life.
From a scientific point of view, this
prospective study is especially important as all new cases of SCI in Switzerland can be recorded in the future. The data quality is very high because the same collection method is used for all participants. For the first time, well-founded conclusions with regard to the basic data of SCI, such as the number of new cases per year, the share of paraplegics/tetraplegics or the cause of the spinal cord injury. This data collection then can contribute to carrying out scientific more efficiently in the future; preventive measures will be more target-oriented and costs in the health care sector can be better planned.
What is the meaning of this study for people affected?
The information collected in the course of the three studies provide scientific findings on the life provision and care situation of people with SCI. Thus the most urging problems and needs can be identified. Currently scientists do not know yet whether the most challenging problems that people with SCI are facing can be solved by means of the existing health care and social programs. Due to the collected data, the SwiSCI study will help to identify opportunities for improvements in the Swiss supply system, in order to minimise the negative effects of disability and increase the quality of life.
The study design of SwiSCI includes a new survey every five years. The long-term character of the study makes it possible to take developments into account later on and also enables forecasts. For example, scientists can monitor the development of the medical and therapeutic treatment over a certain period of time and thus get information about the long-term influence on functioning and the quality of life of the people concerned. Therefore, the study helps to improve the health care situation and social framework conditions to ensure the highest possible level of autonomy, a comprehensive integration as well as a healthy ageing process.
Who conducts and finances the study?
The SwiSCI study is carried out by Swiss Paraplegic Research (SPF) in Nottwil, Switzerland, in collaboration with leading rehabilitation centres for people with SCI in Switzerland: The Swiss Paraplegic Centre REHAB in Basel, the Paraplegic Centre at the Balgrist University Hospital in Zurich, the Swiss Paraplegic Centre (SPZ) in Nottwil and the “Clinique Romande de Réadaptation” in Sion. Other important collaboration partners of SwiSCI are the Swiss Paraplegic Foundation, the Swiss Paraplegics Association, ParaHelp – an outpatient nursing advisory service - and the SUVA insurance services.
Authors of summary: Carolina Ballert, Sibylle Graf, Felix Gradinger, Alexander Lötscher, Christine Muff, and Jan D. Reinhardt (Swiss Paraplegic Research)
Original article: Reinhardt JD, Ballert CS, Fellinghauer B, Lötscher A, Gradinger F, Hilfiker R, Graf S, Stucki G. Visual perception and appraisal of persons with impairments: A randomized controlled field experiment using photo elicitation. Disability and Rehabilitation. 2011;33(5):441-52.
People in the wheelchair are clearly rated more negatively than
pedestrians, even with respect to attributes such as intelligence or
diligence. Personal contact with people with disabilities and raising
awareness about this topic may, however, contribute to the reduction of
What was the aim of this study?
In order to guarantee equal opportunities for wheelchair users, the perception of disability in our society needs to be understood and potential prejudices need to be recognized. How are people with visible disabilities such as wheelchair users actually perceived? How are they rated as people and which role do the visually obvious characteristics of their disability play? Researcher have picked up on these questions and carried out a field study which is presented in this article.
How did the researchers proceed?
In order to examine the visual perception of wheelchair users, the research group asked a total of 100 people from the general Swiss population. The survey participants were shown twelve photos in total. Four of them showed people in a wheelchair, four of them showed people with visible mental disabilities and four showed pedestrians without visible disabilities (see figures 1a/b). The participants were asked to rate all twelve people on the photos regarding various personal characteristics.
Figures 1 a/b: wheelchair users are rated more negatively than pedestrians without visible disabilities
What did the researchers discover?
result of the survey was that mentally disabled people were rated most
negatively. But also the people in a wheelchair were rated more
negatively in all characteristics than the pedestrians. The biggest
difference was with respect to attractiveness and intelligence. Figure 2 reflects the results. It illustrates at one
glance that wheelchair users, simply due to the visibility of their
wheelchair, receive a more negative rating; even though a wheelchair
does not allow any conclusions about, e.g., the intelligence of the
Figure 2: average rating of wheelchair users and pedestrians
Another result of the study was that having personal contacts with people with disabilities apparently contributed to the
reduction of prejudices. Those study participants that were in close
personal contact with people with disabilities (e.g. because they were
friends with a person with disabilities), hardly made any differences in
the rating of wheelchair users and pedestrians without visible
disabilities. A similar effect, like being in personal contact with people with
disabilities, was achieved when the participants were intentionally
informed beforehand about the topic of disability. This was done through
informing half of the survey participants that the study was about the
perception of people with disabilities and, furthermore, Swiss
Paraplegic Research (SPF) was named as sponsor of the study. The other
half of the participants received the neutral information that the study
was an examination of the visual perception in general conducted by the
University of Lucerne. Comparing these two groups shows that wheelchair
users received a better assessment if the participants were previously
informed about the topic disability and that the originator of this
study was SPF. This shows especially that awareness building of the
topic disability may avoid premature judgment.
What do these findings mean?
results of the described field study suggest that the visually
noticeable wheelchair users tend to be more exposed to negative ratings
of their social environment compared to the pedestrians without visible
disabilities. This applies also and especially for non-visible
attributes such as “intelligence” or “diligence” in people with visible
disabilities who, if assessed, would certainly not show worse results
than people without disabilities.
As sobering as this study result
may be, it also shows possibilities how prejudices can be reduced.
People who are in personal contact with people with disabilities will
perceive the latter as people and not as “disabled people”. Negative
attitudes are thus reduced. A promising approach is the initiative
Paradidact of the Swiss Paraplegics Association (SPV), which provides
educational material regarding spinal cord injury, educates teachers and
arranges for wheelchair users to visit school classes to illustrate the
experiences to the students that life in wheelchair involve. Also
revealing and making aware of prejudices against wheelchair users
constitutes an efficient strategy to reduce negative attitudes. Mass
media campaigns may definitely be suitable measures to reduce prejudices
against people with disabilities, to open up the topic equal
opportunities for public discussion, and to raise awareness that
equality is a necessity.
Who conducted and financed the study?
was carried out and financed by Swiss Paraplegic Research in Nottwil
(Switzerland) in collaboration with the University of Lucerne.
from Paracontact 3/2010, Swiss Paraplegics Association
Author of summary: Andrea Glässel (Swiss Paraplegic Research)
Original article: Lüthi H, Geyh S, Baumberger ME, Dokladal P, Scheuringer M, Mäder M, Cieza A. The individual experience of functioning and disability in Switzerland – patient perspective and person-centeredness in spinal cord injury. Spinal Cord. 2011;49(12):1173-81.
People with spinal cord injury in Switzerland are reporting in group discussions about their individual experiences.
How did the researchers proceed? 49 people with SCI participated in nine group surveys in so called focus groups. 21 participants had suffered from SCI only recently while 28 people had been living with SCI for many years. All participants attended the group survey on a voluntary basis. People with a high level of SCI that were dependent on respiratory aids or that were suffering from a psychiatric condition such as depression, were excluded from the study.
Within the groups, the participants were discussing the following five questions with respect to their individual lived experiences with SCI:
If you are thinking of your body and mind, what does not work the way it should?
If you are thinking of your body, in which areas do you experience problems?
If you are thinking of everyday life, which problems do you experience?
If you are thinking of your environment (surrounding) and your life conditions:
- What do you find supportive and helpful? - Which barriers do you experience or do you need to overcome?
If you are thinking of yourself, what is important for you and the way you are dealing with your SCI?
The statements of the participants within the group discussions were transcribed word-for word, partitioned into meaningful units and eventually linked to the categories of the above mentioned Classification of Functioning, Disability and Health (ICF).
The following example shows the procedure when analysing the statements from the group discussions:
Text analysis step 1: Meaningful units
Analysis step 2: Linking with ICF categories
„My wife is always there for me, she helps me with my daily routine, as
for example with putting on clothes and taking off clothes.”
1) My wife is always there for me 2) Help with daily routine when putting on clothes or taking off clothes
Support from wife (e310*)
Putting on clothes (d5400*) Taking off clothes (d5401*)
*These codes of a combination of letters and numbers are characteristic for the ICF. They have a supportive function when describing topics about disability and health.
What did the researchers discover? Within the groups, the 49 participants were discussing with each other for more than 14 hours and were exchanging their experiences with SCI. This was transformed into 1,582 meaningful units that could be linked to a total of 2,235 categories of the ICF. The participants’ average age was 45.1 years; three quarters thereof were male. The 2,235 categories can be summarized under four large areas:
Body (functions and structures)
Activities and Participation
Personal Factors (e.g. life style, coping with health conditions, life experience)
The following three categories were mentioned most frequently:
Example of a participant’s statement on this
1. Muscle tone (muscle tension)
„Sitting for a long period makes me feel stiff and tense, it pulls in my legs.”
2. Muscle strength
„I can move my arms only with a lot of effort, my hands are completely paralyzed.“
„This back pain, it never stops”.
Differences regarding the discussion contents were found within the above mentioned groups. Within the group of those who had suffered from spinal cord injury only recently, the topics “movement of the joints” and “social life” were mentioned more often. The topic “helping others”, on the other side, was more important in the group of people who had suffered SCI a longer time ago. Of central meaning for the participants were, besides body related topics, especially barriers in the environment, support through aids and the social environment as well as the influence of SCI on all areas of life, e.g. leisure time and work.
How are the results applied?
The study was providing the “Swiss perspective” for a large project which examined the individual experiences of people with SCI in several countries worldwide. This project, together with three other studies, was the basis for the development of the ICF Core Sets for Spinal Cord Injury. Thus the results directly influenced the development of an instrument with which the various health care professions can control the treatment of spinal cord injuries in the future.
Who conducted and financed the study?
The studies were financed by Swiss Paraplegic Research in Nottwil, Switzerland. The survey took place in three of the Swiss centres for SCI, the Swiss paraplegic centre REHAB Basel, the Swiss Paraplegic Centre in Nottwil and the Paraplegic Centre of the Balgrist University Hospital in Zurich.