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Authors of summary: Sue Bertschy and Teresa Brinkel (Swiss Paraplegic Research)
1. Bertschy S, Geyh S, Pannek J, Meyer T. Perceived needs and experiences with healthcare services of women with spinal cord injury during pregnancy and childbirth – a qualitative content analysis of focus groups and individual interviews. BMC Health Services Research. 2015(15):234. 2. Bertschy S, Bostan C, Meyer T, Pannek J. Medical complications during pregnancy and childbirth in women with spinal cord injury in Switzerland. Spinal Cord. 2016;54(3):183-7.

Mothers with spinal cord injury (SCI) describe how they have experienced medical care during pregnancy and birth. What is different from a medical point of view? Which barriers do occur?

What was the aim of this study?

More and more women with SCI feel that they would like to have a family of their own [references 1-3]. While women after spinal cord injury usually have no menstruation for a short period of time due to the shock they experienced, maturation of the ovum and ovulation are controlled by hormones. Spinal cord injury does not influence their fertility. Therefore every woman with SCI and of reproductive age can become pregnant and give birth to a child.

Until now, however, little is known about how women with SCI experience medical care during pregnancy and birth. The goal of the study was to describe the experiences some women had related to this topic and to indicate where there is need for improvement with respect to medical care.

How did the researchers proceed?

The researcher interviewed women in Switzerland who gave birth after their SCI. The interviews were conducted individually and in focus groups. Afterwards the analysis of the interviews identified the most important topics discussed.

The study included 17 mothers with different lesion levels and types of lesions. On average, the participating women became first-time mothers at the age of 33 years. All of them became pregnant naturally.

17 mothers with SCI participated in the study.
17 mothers with SCI participated in the study.

What did the researchers discover?

The pregnancies of most of the interviewed women went well. Often, however, the future mothers were facing difficulties with structural issues. The most frequently raised issues included the unavailability of information, barriers in the medical facilities, as well as lack of specialized services for women with disabilities.

In Switzerland there is no institution that is specializing in supporting women with SCI who would like to have children. There is a lack of qualified health professionals with treatment experience in both gynecology and paraplegia. Women therefore frequently had to consult several physicians for the same medical issue. One study participant said: "I sometimes whished there had been a gynecologist who had known more about women with SCI, for example also about the bladder, the hormones and the bowel. I sometimes ran desperately from one place to the next... in the hope of finding an answer to my question ... and without having to consult the urologist, the neurologist etc. This may be our fate that we will always have to consult several physicians." (Laura*).

From the view of the women, clinics and hospitals had only limited equipment for wheelchair users: "So at the hospital everything was missing. Therefore my husband practically had to bring me all of my equipment from home." (Emma*).

Some physicians chose treatment methods that were unusual for pregnant women with SCI. For example, one physician prescribed a treatment with antibiotics for recurring bladder infections without previously testing the patient for antibiotic resistances. This would have been necessary since bladder infections are frequent in persons with SCI and, consequently, also the treatment with antibiotics. Statement of a participant: "I had a bladder infection and was always treated with the same medication since, in general, this one was best digestible for women during pregnancy. ... But I was resistant to this medication and then the infection returned again and again ... and, finally, I ended up having an inflammation of the kidney pelvis. ... At the hospital I said 'test me on antibiotic resistances!" But then they administered it to me for another three days intravenously. Later on the physicians were standing in front of me telling me that they were sorry but the medication did not have any effect." (Emma*).

What do these findings mean?

In summary, the study results show that women with SCI have different health care needs during pregnancy and childbirth. There was no specialist to fulfill these special needs. Consequently, the women were often treated and guided by several health professionals. In many cases medical treatments were not sufficiently coordinated and specialized.
One reason for this is that medical staff does not have adequate access to the already limited scientific literature on pregnancy and childbirth with a disability. Not enough research is done in this field which results in a lack of knowledge about this topic.

Pregnant women with SCI often receive medical treatment that is not sufficiently coordinated and specialized.
Pregnant women with SCI often receive medical treatment that is not sufficiently coordinated and specialized.

Pregnant women should express their wishes early on and notify the supervising team about their personal needs. In addition, it would be desirable that patient, midwife, gynecologist, paraplegiologist and urologist actively work together across the disciplines. Further research and dissemination of information is extremely important for a better care in the future.

Who conducted and financed the study?

The study was carried out by the Swiss Paraplegic Foundation and Swiss Paraplegic Research in Nottwil (Switzerland) within the framework of the Swiss Spinal Cord Injury Cohort Study (SwiSCI).


*Name has been changed; quotation is translated from German

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Author of summary: Ursina Arnet (Swiss Paraplegic Research)
Original article: Muzykewicz DA, Arnet U, Lieber RL, Friden J. Intrinsic hand muscle function, part 2: kinematic comparison of 2 reconstructive procedures. The Journal of Hand Surgery (American Volume). 2013;38(11),2100-5.e1.

In order to achieve a natural and functional grasp, in addition to rebuilding the motion of finger flexion through a tendon transfer, functioning of the intrinsic muscles should be restored as well. For this purpose the House surgical procedure is preferable to the Zancolli lasso procedure.

What was the aim of this study?

The wish for regaining their hand function ranks first for most tetraplegics. By performing a tendon transfer, it is possible to restore certain finger functions. The ability to flex the fingers, 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).

A previous study has shown that when restoring the finger flexion also the so-called intrinsic muscles should be included to regain an optimal and functional grasping movement (see article in the Research Corner "Intrinsic hand muscle function, part 1: creating a functional grasp"). The small muscles are located in the palm of the hand and are attached laterally on each of the four fingers (index to little finger). When the intrinsic muscles are active, the distance between fingertip and palm is bigger while doing the grasping movement. Therefore also larger objects can be clasped.

There are two different operation procedures to restore the functioning of these muscles surgically: the Zancolli lasso procedure and the House procedure. The aim of this study was to find out which of the two procedures enables a more functional and natural grasping movement.

How did the researchers proceed?

Twelve hands were examined that were donated by deceased persons. An experienced tetraplegia hand surgeon operated on six of the hands following the Zancolli lasso procedure and on the other six hands following the House procedure.

In order to simulate the grasping movement, the tendons of the finger flexor muscles were then connected to a motor. The motor was set in a way that the stretched fingers of the open hand contracted to form a fist. The scientists recorded a video of the finger movement. From the video the angles of the individual finger joints, the sequence of the joint movement and the distance between fingertip and palm during the movement was calculated. The data from the hands with the two different surgical methods was then compared.

What did the researchers discover?

Both surgical methods showed as a result that the distance between fingertip and palm during the grasping movement was bigger than without a surgery. The reasons for this improvement, however, were different.

With the Zancolli lasso procedure (see figure 1) the tendons of the finger flexor muscles on the surface are shortened so that the fingers are always slightly flexed in the metacarpophalangeal joint (joint that connects the fingers to the palm). This changed the initial position of the grasping movement for the study and therefore the distance between fingertip and palm during the gripping.

Figure 1: Zancolli lasso procedure (shortening of the finger flexor tendons)
Figure 1: Zancolli lasso procedure (shortening of the finger flexor tendons)

The House procedure (see figure 2) uses a tendon graft, i.e. a finger tendon from a paralyzed finger flexor muscle of the same body is implanted. With the tendon graft the index finger joint in the middle is connected to the one of the middle finger. The same is done with a second tendon graft at the proximal interphalangeal joints of the ring and the little finger.

According to the study, through this firm connection the movement pattern changed during the grasping movement: first the fingers were flexing in the metacarpophalangeal joint and only then in the proximal and distal interphalangeal joints. This corresponds with a natural grasping movement and enlarges the distance between fingertip and palm during the grasping movement.

Figure 2: House procedure (implanted tendon graft)
Figure 2: House procedure (implanted tendon graft)

What do these findings mean?

The results of this study show that both surgical procedures do improve the functioning of gripping: by restoring the function of the intrinsic muscles, the distance between fingertip and palm is enlarged during the grasping movement. This allows for bigger objects to be grasped.

Comparing the two surgical procedures shows, however, that only the House procedure can restore the "natural" movement pattern which corresponds to a hand movement with active intrinsic muscles. When restoring the grasping movement surgically, the House procedure is therefore preferable to the Zancolli lasso procedure.

Who conducted and financed the study?

The study was carried out and financed by Swiss Paraplegic Research in Nottwil, Switzerland, and the Muscle Physiology Laboratory of the University of California in San Diego (USA).

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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.

(Source: © fotolia)
(Source: © fotolia)
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
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
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.

People with SCI consume less alcohol but more cannabis than the general population (source: © fotolia)
People with SCI consume less alcohol but more cannabis than the general population (source: © fotolia)

What do the results show?

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 carried out and financed the study?

The study was carried out and financed by Swiss Paraplegic Research in Nottwil, Switzerland.


References:

  1. Statistik Schweiz (2012): Gesundheitsstatistik 2012. Neuchâtel: Bundesamt für Statistik.
  2. 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.
  3. 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.

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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
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.

Distribution

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
Figure 2: distribution of handcycle users

Lesion level

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
Figure 3: lesion level of handcycle users

Income

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
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.

Race cycle
Race cycle

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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.

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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:

  1. Is there a connection between work-related stress and quality of life in persons with SCI?
  2. 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 1: relation between work-related stress and quality of life
Figure 2: relation between work-related stress and satisfaction with one’s own health
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 3: relation between job control and quality of life
Figure 4: relation between job control and satisfaction with one's own health
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.

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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
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?

The 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
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?

Former 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).

Arnet et al_2012_Shoulder load during synchronious handcycling in SCI_J Rehabil med_published paper....

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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)
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)
Communication between doctor and patient (Source: ePharma Summit blog)

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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
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

WHO_NMH_VIP_13.03_eng.pdfWHO-Bericht-Querschnittlähmung-nominiert_D.pdf

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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
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
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 Diego (USA).

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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:

  1. 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.
  2. What percentage of persons with disabilities living in Switzerland is in remunerative employment?
  3. 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.

Die_Wahrnehmung_von_Menschen_im_Rollstuhl_2.mp3

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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
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

Another 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.

A 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
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
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)

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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:

Quantitative research
Qualitative research
Key characteristics
  • 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
  • Semi-structured research
  • Usually a small, non-representative sample of the population of interest
Objectives
  • Identify and measure causal relationships among things (X causes Y)
  • Generalize results from a sample to a given population
  • Compare groups
  • 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?"
Methods usedE.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 Analysis of numerical data by means of statisticsAnalysis of data such as words (audiotapes, transcripts), pictures, or videotapes by means of specific methods (e.g. content analysis and conversation analysis)
Advantages & disadvantagesAdvantages:
  • Can help to establish causal relationships
  • Enables comparisons
  • Quantifiable results


Disadvantages:
  • Difficulty in defining the “right" questions
Advantages:
  • Allows the participants to respond in their own words
  • Enables the researcher to ask follow-up questions to explore the “why" or “how"

Disadvantages:
  • 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

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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.


Common forms of surveys are political surveys or market research surveys. The latter usually aim at finding out the consumers' opinion on certain products or services, e.g. the railway. Surveys are also carried out on a regular basis to collect information about the health of society. One example is the Swiss Health Survey: http://www.bfs.admin.ch/bfs/portal/de/index/infothek/erhebungen__quellen/blank/blank/ess/04.html.


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!

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Author: Fabian Diesner (Swiss Paraplegic Research)
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 problem?


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.

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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 conditions

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
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
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).

References:

  • 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): 57-68.
  • Lidal IB, Huynh TK, Biering-Sørensen F. Return to work following spinal cord injury: a review. Disability and Rehabilitation. 2007;29(17): 1341-75.
  • 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.

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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 prejudices.

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
Figures 1 a/b: wheelchair users are rated more negatively than pedestrians without visible disabilities

What did the researchers discover?

The 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 person.

Figure 2: average rating of wheelchair users and pedestrians
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?

The 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?

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

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Author: Teresa Brinkel (Swiss Paraplegic Research)
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.

Pathway 1

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.

Pathway 2

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

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.

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Authors: Claudia Zanini and Julia Amann (Swiss Paraplegic Research)
Sources: 1) Gibbs A. Focus groups. Social research update. 1997;19. 2) Morgan DL. Focus groups. Annual review of Sociology. 1996;22:129-52. 3) Wong LP. Focus group discussion: a tool for health and medical research. Singapore Medical Journal. 2008;49(3):256-61.
A focus group is a qualitative research method with the purpose of gaining insights from a specific group of people on a certain topic through a moderated discussion.

What are focus groups?
A focus group is “an organized group discussion with a selected group of individuals to gain information about their views and experiences of a topic” (Gibbs 1997).

Focus groups are a qualitative research method. Research based on focus groups uses as data the discussions of the participants. The exchange of experiences in a focus group produces the so-called group effect, namely a mutual stimulation of memories and ideas.

How does a focus group work?
A focus group is composed of about six to ten participants and a trained moderator. The moderator suggests topics for discussion that are in relation to the research question of the study and invite the participants to interact. The discussion lasts from one to two hours.

Benefits and limitations of focus groups as a research method
The main benefit of focus groups is that they allow to gather a big amount of information in a short period of time. Thanks to group interaction and discussion, participants can build on each other’s ideas, and topics and themes emerge that otherwise might not come up in an individual interview, let alone a survey. By bringing out aspects that might not have been anticipated by the researcher, focus groups can therefore lead to the discovery of new phenomena.

As every research method, focus groups have some limitations. Results from studies based on focus groups are rarely generalizable to the population of interest, because of the small number of participants and because the selected participants usually do not accurately represent the views of the population. Moreover, focus groups studies can suffer from an experimenter bias (i.e. the researcher is part of the interaction and could influence it), groupthink (i.e. group members tend to minimize conflict) and social desirability bias (i.e. people tend to give answers that are socially acceptable).

When are focus groups used?
Focus groups are traditionally used in marketing research to investigate the preferences of consumers in the developmental phase of a product (e.g. for packaging, name). In usability engineering, focus groups are used to test the user friendliness of a software, a device or a website.

In health research, focus groups are used at different stages of a research project and for different purposes. For instance, focus groups can be conducted in the preliminary phase of a project to generate hypothesis. When conducted during a study, focus groups can be used to gain understanding of people’s experiences of illness, to explore people’s perception of causes of diseases, or to identify people’s beliefs about health risk behaviors or public attitude toward health services and health providers. At the end of a project, focus groups can be used to get feedback from the participants, help to explain unexpected outcomes or generate further avenues of research.

An example for the application of focus groups in the field of SCI would be the study “The individual experience of functioning and disability in Switzerland – patient perspective and per...which aimed at exploring the aspects of functioning and disability that are relevant to individuals with spinal cord injury by conducting nine focus groups.

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Author of summary: Szilvia Geyh (Swiss Paraplegic Research)
Original article: Geyh S, Nick E, Stirnimann D, Ehrat S, Michel F, Peter C, Lude P. Self-efficacy and self-esteem as predictors of participation in spinal cord injury-an ICF-based study. Spinal Cord. 2012;50(9):699-706. - Geyh S, Nick E, Stirnimann D, Ehrat S, Müller R, Michel F. Biopsychosocial outcomes in individuals with and without spinal cord injury: a Swiss comparative study. Spinal Cord. 2012;50(8):614-22.
Promoting mental health (e.g. self-confidence and self-esteem) as well as preventing mental illnesses (e.g. fear and depression), is a very important aim of rehabilitation. This way, people with spinal cord injury participate more actively in everyday life.


What was the aim of this study?
Participation is a very important aim in the rehabilitation of people with spinal cord injury (SCI): the term refers to the ability of people to complete tasks in various areas of life. Such areas of life are for example mobility (at home and over long distances), self-sufficiency (e.g. washing, getting dressed, cooking, eating), professional life and education, leisure time activities and maintaining relationships within the family or within their circle of friends and acquaintances. The objective of this study was to find out whether, apart from the physical disabilities related to SCI, there are also certain psychological aspects that play an important role with regard to participation in everyday life.

How did the researchers proceed?
Amongst all psychological factors, the researchers mainly focused on two of them. The first one was “self-efficacy” of a person – broadly speaking this refers to the conviction: “I can do it”, i.e. I can handle future challenges. This could also be described as self-confidence. The second aspect was self-esteem, meaning a self-judgment or, more precisely, considering yourself as a valuable person just the way you are (“I am okay”).
The study tried to find out whether there is a link between self-confidence and self-esteem on the one hand and participation on the other hand. Another objective was to find out if there is a difference between people with SCI and people without SCI in this respect. 102 people with SCI from German-speaking Switzerland participated in the study. The comparison group of people without SCI consisted of 73 employees of a rehabilitation centre for paraplegics. The researchers chose people that were comparable with the people with SCI with regard to age, gender and educational background.
All participants had to complete the same questionnaire. The questions referred to personal details, the spinal cord injury, self-confidence, self-esteem and participation, but also to the frequency and severity of health conditions in the last six months, as well as to pain, anxiety and depression, and support provided by the social environment etc.

What did the researchers discover?
The researchers found out that there is a strong link between self-confidence and self-esteem of people with SCI and their participation in everyday life. They also found out that self-confidence and self-esteem are more important with regard to participation than physical or mental stress, such as pain, depression, anxiety or the frequency of health problems. They are also more important than certain external factors, e.g. the number of people who support them. However, there is no correlation between confidence and self-esteem on the one hand and factors, such as age, gender, educational background, paraplegia, tetraplegia and complete or incomplete SCI on the other hand. There is also no link between the degree of participation and the degree of paralysis (paraplegia or tetraplegia, complete or incomplete).
Among people without SCI, anxiety and depression are the factors that have the biggest influence on participation in everyday life. Confidence and self-esteem were only of minor significance for that group.
It also turned out that people with SCI do generally have lower values in terms of self-confidence and self-esteem. However, these results do not allow any conclusions regarding the development of these factors after the spinal cord injury. People with SCI fall ill more frequently, they show higher values in anxiety and depression, suffer from more severe pain, participate less in everyday life and have less support compared with people without SCI.

What do these findings mean?
The results of the study show that rehabilitation should also always strengthen self-confidence and self-esteem in people with SCI, as this might help them to better cope with their life later on. It is also important to promote their mental health, e.g. by reducing anxiety and depression. Further research should focus on the question of how to promote mental health even better.

Who conducted and financed the study?
The study was coordinated and financed by Swiss Paraplegic Research (SPF) in Nottwil. It was carried out in cooperation with the Zurich University of Applied Sciences (ZHAW) and leading rehabilitation centres for people with SCI in German-speaking Switzerland that are: the Balgrist University Hospital, the Centre for Paraplegia in Zurich, REHAB Basel, the Centre for People with SCI and Brain Injuries, the Swiss Paraplegic Centre in Basel and the Swiss Paraplegic Centre (SPZ) in Nottwil. 

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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.


What was the aim of this study?
Goal of this study, that was conducted throughout Switzerland, was to gain an insight into those experiences of people with spinal cord injury (SCI) that play a central role for disability and health from their point of view. Basis for this survey was the comprehensive perspective according to the International Classification of Functioning, Disability and Health (ICF) by the World Health Organiz....

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:
Participant’s statement
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
  • Environmental Factors
  • Personal Factors (e.g. life style, coping with health conditions, life experience)

The following three categories were mentioned most frequently:
Category 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.“
3. Pain„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.