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Social media and disability advocacy organizations: caught between hopes and realities

GELFGREN, Stefan
INELAND, Jens
COCQ, Coppélie
2021

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This article examines the role of advocacy organizations and their use of social media within the field of disability in Sweden. How do the organizations negotiate digital media, and what are the (intentional or unintentional) consequences related to the use of social media? With focus on the representatives of advocacy organizations, we study how they reflect and act in order to balance various motives, and what challenges and ambiguities that arise. On one hand, there is a perceived need to be online and communicate with members and the surrounding society. On the other hand, digital communication induces a divide between those who have the resources to take part in such communication, and those who do not – in terms of digital competence, economy, age, cognitive abilities, technical equipment and digital connection. The heterogeneity of resources and target groups inevitably challenges both the ideals of inclusion and intentions of advocacy organizations.

The association between tactile, motor and cognitive capacities and braille reading performance: a scoping review of primary evidence to advance research on braille and aging

MARTINIELLO, Natalina
WITTICH, Walter
2020

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PURPOSE

As the prevalence of age-related visual impairment increases, a greater understanding of the physiological and cognitive capacities that are recruited during braille reading and the potential implications of age-related declines is required.

 

METHODS

This scoping review aimed to identify and describe primary studies exploring the relationship between tactile, motor and cognitive capacities and braille reading performance, the instruments used to measure these capacities, and the extent to which age is considered within these investigations. English peer-reviewed articles exploring the relationship between these capacities and braille reading performance were included. Articles were screened by two researchers, and 91% agreement was achieved (kappa = 0.84 [0.81, 0.87], p < 0.01).

 

RESULTS

 2405 articles were considered of which 36 met the inclusion criteria. Fifteen investigated the relationship between tactile capacities and braille reading performance, 25 explored motor capacities, and 5 considered cognitive capacities. Nineteen instruments were used to measure tactile capacity, 4 for motor dexterity, and 7 for cognitive capacity. These studies focus on younger participants and on those who learned braille early in life.

 

CONCLUSIONS

  • Although this overview underscores the importance of tactile perception and bimanual reading, future research is needed to explore the unique needs of older adults who learn braille later in life.
  • The studies in this review underscore the importance of developing both haptic tactile perception and efficient hand reading patterns early in the braille learning process.
  • Practitioners should consider whether specific pre-braille readiness activities can be used to address the unique needs of older adults who may experience tactile, motor or cognitive declines.
  • Most of the studies in this review require replication before they should serve as reliable clinical guidelines; however, braille reading (like print) is a complex process that draws on multiple capacities that should be developed in unison.
  • The studies in this review focus heavily on younger participants and on those who learned braille early in life, and highlight the need for future research on braille and aging.

Product Narrative: Digital Assistive Technology. A market landscape and strategic approach to increasing access to digital assistive technology in low- and middle- income countries

SAVAGE, Margaret
LIAO, Cynthia
CHAUDRON, Matilde
BOYER, Jeffrey
BHATNAGAR, Tigmanshu
LAURENTIUS, Dennis
TORRENS, George
PERRY, Katherine
MORJARIA, Priya
BARAJAS, Felipe Ramos
GOEDDE, Barbara
November 2020

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This document is the final in a series of in-depth analyses that identify key barriers and promising market interventions. The previous four documents focused on wheelchairs, hearings aids, prostheses, and eyeglasses.

The report provides market landscapes of 3 areas of digital AT: mobile phones; screen readers; and augmentative and alternative communication (AAC) devices.

A common set of recommendations focused on improving access emerged from the individual product landscapes:

  • Develop and adopt policies, including legislation, regulations, minimum product standards, and guidelines to support accessibility and uptake of digital AT at the global and country levels.
  • Support governments of low- and middle-income countries (LMICs) to increase awareness of digital AT by including digital assistive products such as smartphones and augmentative and alternative communication (AAC) devices on national assistive product lists.
  • Support innovative financing schemes or negotiate pricing agreements to reduce the cost of digital AT to end users.
  • Increase availability of training programmes for users, suppliers, and service providers on the availability of digital AT and digital literacy skills.

Training for the HandbikeBattle: an explorative analysis of training load and handcycling physical capacity in recreationally active wheelchair users

KOUWIJZER, Ingrid
VALENT, Linda J M
BENNEKOM, Coen A M van
HANDBIKEBATTLE group
POST, Marcel W M
WOUDE, Lucas H V Van Der
GROOT, Sonja de
November 2020

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Purpose: (1) to analyze training characteristics of recreationally active wheelchair users during handcycle training, and (2) to examine the associations between training load and change in physical capacity.

 

Methods: Former rehabilitation patients (N = 60) with health conditions such as spinal cord injury or amputation were included. Participants trained for five months. A handcycling/arm crank graded exercise test was performed before and after the training period. Outcomes: peak power output per kg (POpeak/kg) and peak oxygen uptake per kg (VO2peak/kg). Training load was defined as Training Impulse (TRIMP), which is rating of perceived exertion (sRPE) multiplied by duration of the session, in arbitrary units (AU). Training intensity distribution (TID) was also determined (time in zone 1, RPE ≤4; zone 2, RPE 5–6; zone 3, RPE ≥7).

 

Results: Multilevel regression analyses showed that TRIMPsRPE was not significantly associated with change in physical capacity. Time in zone 2 (RPE 5–6) was significantly associated with ΔVO2peak, %ΔVO2peak, ΔVO2peak/kg and %ΔVO2peak/kg.

 

Conclusion: Training at RPE 5–6 was the only determinant that was significantly associated with improvement in physical capacity. Additional controlled studies are necessary to demonstrate causality and gather more information about its usefulness, and optimal handcycle training regimes for recreationally active wheelchair users.

Work conditions, support, and changing personal priorities are perceived important for return to work and for stay at work after stroke – a qualitative study

LINDGREN, Ingrid
Brogårdh, Christine
PESSAH-RASMUSSEN, Helene
JONASSON, Stina B
GARD, Gunvor
2020

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Purpose: To explore work related and personal facilitators and barriers for return to work (RTW) and stay at work after stroke.

 

Materials and methods: Twenty individuals post-stroke (median age 52 years; seven women) were inter- viewed in focus groups. Data were analyzed by using qualitative content analysis.

 

Results: An overall theme “Work conditions, support and changed personal priorities influenced RTW and stay at work after stroke” emerged and covered three categories: “Adjustments and flexibility at the work place facilitated RTW and a sustainable work situation”, “Psychosocial support and knowledge about stroke consequences facilitated work and reduced stress”, and “Changed view of work and other personal priorities”. Physical adjustments at the work place and flexibility in the work schedule were perceived facilitators. Support from family and colleagues were important, whereas lack of knowledge of stroke dis- abilities at the work place was perceived a barrier. Also changed personal priorities in relation to the work and the current life situation influenced RTW in various ways.

 

Conclusions: The individual’s opportunities to influence the work situation is a key factor for RTW and the ability to stay at work after stroke. Adjustments, flexibility, support, knowledge of stroke, and receptiv- ity to a changed view of work are important for a sustainable work situation.

Inclusion, access, and accessibility of educational resources in higher education institutions: exploring the Ethiopian context

BEYENE, Wondwossen Mulualem
MEKONNEN, Abraham Tulu
GIANNOUMIS, George Anthony
2020

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The right of persons with disabilities for equal access to education and educational resources is enshrined by international and country-specific anti-discrimination laws. Taking the Ethiopian context as an example, this paper sought to identify barriers of access to educational resources and explored ways for removing them. Seventeen students with visual impairments studying at Hawassa University were selected for semi-structured interviews. Moreover, five individuals working at the disability centre and the university library were interviewed. The results of the interviews were analysed thematically using the International Classification of Functioning, Disabilities and Health (ICF) as a framework. Access and accessibility problems that emanate from the learners’ diverse background, lack of educational resources in alternative formats, lack of institutional tools (policy, procedure, guidelines, etc.) to bridge the gap between law and practice, and the digital divide were among the problems identified and discussed. At the end, the paper showed how libraries, revitalised as learning and information commons, could help to ensure the accessibility of educational resources and help learners with disabilities to acquire skills that may help them in their studies and their future undertakings.

Rehabilitation: mobility, exercise & sports; a critical position stand on current and future research perspectives

VAN DER WOUDE, Lucas H V
HOUDIJK, Han J P
JANSSEN, Thomas W J
SEVES, Bregje
SCHELHAAS, Reslin
2020

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Background: Human movement, rehabilitation, and allied sciences have embraced their ambitions within the cycle of “RehabMove” congresses over the past 30 years. This combination of disciplines and collabo- rations in the Netherlands has tried to provide answers to questions in the fields of rehabilitation and adapted sports, while simultaneously generating new questions and challenges. These research questions help us to further deepen our understanding of (impaired) human movement and functioning, with and without supportive technologies, and stress the importance of continued multidisciplinary (inter)national collaboration.

 

Methods: This position stand provides answers that were conceived by the authors in a creative process underlining the preparation of the 6th RehabMove Congress.

 

Results: The take-home message of the RehabMove2018 Congress is a plea for continued multidisciplin- ary research in the fields of rehabilitation and adapted sports. This should be aimed at more individual- ized notions of human functioning, practice, and training, but also of performance, improved supportive technology, and appropriate “human and technology asset management” at both individual and organ- ization levels and over the lifespan.

 

Conclusions: With this, we anticipate to support the development of rehabilitation sciences and technol- ogy and to stimulate the use of rehabilitation notions in general health care. We also hope to help ensure a stronger embodiment of preventive and lifestyle medicine in rehabilitation practice. Indeed, general health care and rehabilitation practice require a healthy and active lifestyle management and research agenda in the context of primary, secondary, and tertiary prevention.

The outcomes of individualized housing for people with disability and complex needs: a scoping review

OLIVER, Stacey
Gosden-Kaye, Emily Z
WINKLER, Dianne
DOUGLAS, Jacinta M
2020

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PURPOSE: Worldwide, disability systems are moving away from congregated living towards individualized models of housing. Individualized housing aims to provide choice regarding living arrangements and the option to live in houses in the community, just like people without disability. The purpose of this scoping review was to determine what is currently known about outcomes associated with individualized housing for adults with disability and complex needs.

 

METHODS: Five databases were systematically searched to find studies that reported on outcomes associated with individualized housing for adults (aged 18–65 years) with disability and complex needs.

 

RESULTS: Individualized housing was positively associated with human rights (i.e., self-determination, choice and autonomy) outcomes. Individualized housing also demonstrated favourable outcomes in regards to domestic tasks, social relationships, challenging behaviour and mood. However, outcomes regarding adaptive behaviour, self-care, scheduled activities and safety showed no difference, or less favourable results, when compared to group homes.

 

CONCLUSIONS: The literature indicates that individualized housing has favourable outcomes for people with disability, particularly for human rights. Quality formal and informal supports were identified as important for positive outcomes in individualized housing. Future research should use clear and consistent terminology and longitudinal research methods to investigate individualized housing outcomes for people with disability.

A preschool for all children? – Swedish preschool teachers’ perspective on inclusion

HAU, Hanna Ginner
SELENIUS, Heidi
ÅKESSON, Eva Björck
2020

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Building on the Salamanca Statement from 1994, the United Nations Sustainability Development Goals 2030 embraces inclusion for children in early childhood education. The European Agency for Special Needs and Inclusive Education in 2015–2017 completed a project on inclusive early childhood education, focusing on structures, processes, and outcomes that ensure a systemic approach to high-quality Inclusive Early Childhood Education (IECE). An ecosystem model of IECE was developed with a self-reflection tool for improving inclusion. This study’s aim was to investigate practitioners’ perspective on the inclusive processes and supportive structures defined in the ecosystem model, to contribute to a deeper understanding of how inclusive practice might be enabled and how barriers for inclusion can be removed. The self-reflection tool was administered in a heterogeneous municipality in Sweden, where inclusive settings are standard. Documentation from approximately 70 teachers on 27 teams was received. The documentation was analysed with qualitative content analysis based on the ecosystem model. The results showed a strong emphasis on group-related processes, whereas data on individual-related processes were scarce. This one-sided focus on the group level might endanger the inclusive processes and outcomes concerning the individual child.

Environmental pre-requisites and social interchange: the participation experience of adolescents with autism spectrum disorder in Zurich

KRIEGER, Beate
PISKUR, Barbara
SCHULZE, Christina
BEURKENS, Anna
MOSER, Albine
May 2020

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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school.

 

Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure.

 

Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported.

 

Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.

Para-cycling race performance in different sport classes

LILJEDAHL, Johanna B
BJERKEFORS, Anna
ARNDT, Anton
NOOIJEN, Carla F J
March 2020

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Purpose: The para-cycling classification system, consisting of five classes (C1–C5) for bicycling (C5 athletes having least impairments), is mostly based on expert-opinion rather than scientific evidence. The aim of this study was to determine the differences in race performance between para-cycling classes. 

 

Methods: From official results of the men’s 1 km time trials for classes C1–C5 of seven Union Cycliste Internationale World Championships and Paralympics, median race speed of the five fastest athletes in each class was calculated (n = 175). Para-cycling results were expressed as a percentage of able-bodied performance using race results from the same years (n = 35). To assess differences between consecutive classes, Kruskal-Wallis tests with Mann-Whitney U post hoc tests were performed, correcting for multiple testing (p < 0.013). 

 

Results: Para-cyclists in C1 reached 75% (median ± interquartile range = 44.8 ± 4.2 km/h) and in C5 90% (53.5 ± 2.9 km/h) of able-bodied race speed (59.4 ± 0.9 km/h). Median race speed between consecutive classes was significantly different (χ2 = 142.6, p < 0.01), except for C4 (52.1 ± 2.8 km/h) and C5 (U = 447.0, p = 0.05). 

 

Conclusion: Current para-cycling classification does not clearly differentiate between classes with least impairments.

Required to be creative. Everyday ways for dealing with inaccessibility

WÄSTERFORS, David
2020

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Today’s society promises that people with disabilities can access anything, but in practice there are numerous obstacles, and the ways in which people deal with them can be easily missed or taken for granted by policy makers. This article draws on a project in which researchers ‘go along’ people with disabilities in Sweden who demonstrate and recount accessibility troubles in urban and digital settings. They display a set of mundane methods for managing inaccessibility: (a) using others, (b) making deals and establishing routines, (c) mimicking or piggybacking conventions, (d) debunking others’ accounts and performing local politics. The employment of these shared but tailored methods shows the difficulties to be accepted that people with disabilities still face, as well as the wide-ranging tension that exists between the grand rhetoric of inclusion and modest results. The tension implies that people with disabilities are required to be creative.

  • Declarations and policies often say that people with disabilities should have access to anything, but in practice this is not the case.
  • This study investigates what people with disabilities actually do when they have trouble accessing various places or resources. The results show their common and practical ways, and these ways are often taken for granted, overlapping, and combined.
  • People with disabilities ask others to support them when they face troubles to access places or resources, they make deals with important actors and they develop routines. They also observe, imitate and follow others’ actions, to pick out precisely those ways that suit their needs.
  • When people with disabilities find their ways in today’s society they also act with words. They argue against other people’s excuses or justifications for not providing access.
  • The study has found a lot of frustration among people with disabilities who get blocked, excluded or delayed. This gives them motives to engage in politics.

Inclusion through folk high school in Sweden – the experience of young adult students with high-functioning autism

HUGO, Martin
HEDEGAARD, Joel
January 2020

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Purpose: The purpose of this study is to provide a description of the learning environment at Folk High School for participants with high-functioning autism and to examine their learning experience at Folk High School.

 

Methods: A qualitative interview study was conducted with 21 participants who were enrolled at Folk High School which had been adapted to suit young adults with high-functioning autism. The interviews were analysed by means of a thematic content analysis which resulted in the identification of 6 themes related to learning experiences at Folk High School.

 

Results: The participants enjoyed themselves and felt secure at Folk High School. They felt that they and their academic endeavours were suitably recognised, acknowledged, and understood. They reported that the teaching was suitably adapted for them and they felt that they could succeed in their studies. A frequent report that they made concerned their experience of clear structures in the teaching process and its predictability. The participants stated that Folk High School has the ability to satisfy each participant’s needs, which entailed lower levels of perceived stress than what they had experienced in their previous schooling. The participants experienced personal development during their time at Folk High School.

 

Conclusions: Folk High School, and its special character, is able to successfully satisfy the needs of participants with high-functioning autism. Many of the participants, for the first time in their lives, experienced a sense of inclusion in an educational system and felt that they could succeed in their studies. However, there exists a risk that they become institutionalised, which entails that the participants function well primarily in Folk High School’s safe and caring environment.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Objective and subjective measures of physical functioning in women with fibromyalgia: what type of measure is associated most clearly with subjective well-being?

MUNGUIA-IZQUIERDO, Diego
PULIDO-MARTOS, Manuel
ACOSTA, Francisco M
ACOSTA-MANZANO, Pedro
GAVILAN-CARRERA, Blanca
RODRIGUEZ-AYLLON, Maria
GEENEN, Rinie
DELGADO-FERNANDEZ, Manuel
ALVAREZ-GALLARDO, Inmaculada C
SEGURA-JIMENEZ, Victor
WALITT, Brian
ESTEVEZ-LOPEZ, Fernando
October 2019

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Purpose: To find modifiable factors that are related to subjective well-being would be valuable for improving interventions in fibromyalgia. Physical activity, sedentary behaviour, and physical fitness may represent potential areas to optimize treatment regimens. In fibromyalgia, there is a discordance between clinical observations and patient-reported outcomes (objective and subjective assessments). Therefore, the present study aims at analyzing the associations of objective and subjective evaluations of physical activity, sedentary behaviour, and physical fitness with subjective well-being and determine if and how objective and subjective associations differ.

 

Methods: In this population-based cross-sectional study participated 375 women with fibromyalgia from the al-Ándalus project (Spain). Physical activity, sedentary behaviour, and physical fitness were objectively (accelerometers and performance testing) and subjectively (questionnaires) measured. Participants self-reported their levels of positive affect, negative affect, and life satisfaction.

 

Results: In the most conservative multivariate analysis, we found independent associations of the objective measures of physical activity with positive affect and life satisfaction and sedentary behaviour with positive affect. No such relationship was seen with subjective measures of the same behaviours. Moreover, we observed that objective and subjective physical fitness evaluations were independent of each other related to subjective well-being.

 

Conclusions: Independent associations of the objective measures (but not the subjective assessments) of physical activity with positive affect and life satisfaction, and of sedentary behaviour with positive affect were observed. However, objective measures and subjective appraisals of physical fitness appear to be independently related to well-being, which should be considered when developing physical exercise interventions for fibromyalgia.

The concept of welfare technology in Swedish municipal eldercare

FRENNERT, Susanne
BAUDIN, Katarina
September 2019

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Purpose: An ageing population presents a challenge for municipal eldercare in Sweden due to difficulties recruiting staff and there being a strained economy. A strategy involving welfare technology is presented as one such solution. An important group to carry out this strategy involves those who work with welfare technology in municipal eldercare. In this paper we describe their perception of welfare technology, and the challenges and opportunities they perceive in utilizing it.

 

Methods: A self-administered online questionnaire was distributed to all Swedish municipalities and answered by 393 respondents. Analyses show that the respondents were representative of the different professions who work with welfare technology within municipal eldercare.

 

Results: Welfare technology was perceived as being more reliable and safer than humans with regards to supervisions and reminders. The respondents acknowledged factors that slowed down the implementation of welfare technology in municipal eldercare organizations, such as resistance to change, lack of finances, lack of supporting evidence, lack of infrastructure, high staff turnover, difficulties with procurement and uncertainties about responsibility and laws.

 

Conclusions: We found that the people who work with and make decisions about welfare technology in municipal eldercare organizations were generally very positive about the deployment and use of such technology, but there appear to be problems within municipal eldercare organizations to realize this vision. The lack of structured implementation processes and coherent evaluation models indicates inequality of the access to welfare technology and, as a result, even though Swedish eldercare is publicly funded, the availability of welfare technologies and their usage differ between municipalities.

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

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Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

United Nations Disability Inclusion strategy

UNITED NATIONS
June 2019

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The United Nations Disability Inclusion Strategy provides the foundation for sustainable and transformative progress on disability inclusion through all pillars of the work of the United Nations: peace and security, human rights, and development.
 
The Strategy enables the UN system to support the implementation of the Convention on the Rights of Persons with Disabilities and other international human rights instruments, as well as the achievement of the Sustainable Development Goals, the Agenda for Humanity and the Sendai Framework for Disaster Risk Reduction.

The Strategy includes a policy and an accountability framework, with benchmarks to assess progress and accelerate change on disability inclusion. The policy establishes a vision and commitment for the United Nations system on the inclusion of persons with disabilities.

 

The strategy is based on three over-arching approaches to achieve disability inclusion: twin track approach; intersectionality; and coordination

There are four core areas of responsibility: leadership, strategic planning and management; inclusiveness; programming; and organisational culture

Activity limitations and participation restrictions in people with multiple sclerosis: a detailed 10-year perspective

CONRADSSON, David
YTTERBERD+G, Charlotte
ENGELKES, Catharina
JOHANSSON, Sverker
GOTTBERG, Kristina
June 2019

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Aim: To conduct a detailed investigation into changes in activity limitations and participation restrictions over 10 years in people with mild, moderate and severe multiple sclerosis.

 

Methods: This study was a 10-year longitudinal study of 264 people with multiple sclerosis living in Stockholm County, Sweden. Ten-year changes in personal and instrumental activities in daily living were assessed using the Katz Activities in Daily Living Index Extended and participation in social/lifestyle activities using the Frenchay Activities Index.

 

Results: While people with moderate multiple sclerosis, compared to baseline, demonstrated significantly higher proportions of dependency in most activities of personal and instrumental activities in daily living at the 10-year follow-up, the mild group primarily increased their dependency in instrumental activities and the severe group in personal activities. Significantly higher proportions of the moderate group showed restricted participation in domestic and outdoor activities whereas the mild group only showed restrictions in a few domains of participation. A majority of people with severe multiple sclerosis showed restricted participation in all social/lifestyle activities at baseline and the 10-year follow-up.

 

Conclusions: Prominent long-term increases in activity limitations and participation restrictions occurred across the spectrum of disease severity but was most pronounced in those more moderately affected.

Self-perceived mobility in immigrants in Sweden living with the late effects of polio

SALANDER, Helena
KJELLGREN, Felicia
SUNNERHAGEN, Katharina S
March 2019

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Purpose: To investigate outdoor mobility of immigrants in Sweden who are living with the late effects of polio.

 

Materials and methods: A total of 145 patients with late effects of polio born outside the Nordic region were identified at an outpatient polio clinic. Of these, 74 completed a questionnaire about their mobility and independence in daily life, self-perceived pain and depression, vocational status, mobility assistive devices/aids, transportation modes and driving. Patient characteristics were based on medical records supplied by physicians.

 

Results: Twice as many patients had lower extremities that were affected by polio than upper extremities. This affected their use of different transport modes and caused mobility and transfer problems. Indeed, 39% needed mobility aids and help from another person to move outdoors. Those who reported dependence for outdoor mobility were more often unemployed and more often depressed.

 

Conclusions: Many respondents reported having difficulties with transport mobility, but a large proportion, 57%, were independent and active drivers. It is important to consider outdoor mobility when planning rehabilitation for patients with late effects of polio and foreign backgrounds. In addition to psychosocial factors, dependence on mobility-related activities can lead to dependency and isolation.

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