The emerging pattern of disability in Rwanda

Abstract

Purpose: The purpose of this paper is to describe the emerging pattern of disability (activity limitation) in terms of its prevalence, age and gender distribution in Rwanda. Method: A door-to-door survey was conducted in all households in villages from two districts selected through a multi-stage sampling procedure. Identified persons were screened for activity limitations using age-appropriate instruments developed from domains in the ICF. Proportions were computed and disaggregated by age group, gender, district and activity limitation. A multi-disciplinary rehabilitation team including community members participated in the development of instruments, community mobilisation, data collection and collation. Results: Prevalence rates of 8.6% (Bugesera) and 14.7% (Musanze) were obtained. The prevalence of disability was higher in adults than in children in both districts (10.4% versus 6.6% in Bugesera and 19.6% versus 7.7% in Musanze). Visual limitations occurred the most frequently in both adults and children in both districts. Mobility and mental health limitations also notably contributed to the overall disability burden. Conclusion: The prevalence of disability obtained was higher than all previously reported data for Rwanda. Despite the limitations, the findings provide useful information for planning rehabilitation services and to direct future enquiry into the epidemiology of disability in Rwanda.

• Implications for Rehabilitation

• It is important to design specific surveys to measure disability using contemporary methods to gauge the situation accurately and qualitatively.

• Currently, the ICF provides the best framework to describe the epidemiology of disability meaningfully; it enables comparisons within and between countries and regions of the world; and enables the active participation of a wide range of rehabilitation stakeholders including PWDs and lay community members.

• The vast majority of disabilities in Rwanda are limitations in visual, mobility and mental health functions.

     

Development of the MG-DIS: an ICF-based disability assessment instrument for myasthenia gravis

Abstract

Purpose: To develop a preliminary version of a disease-specific, patient-reported disability assessment instrument for myasthenia gravis (MG) based on the International Classification of Functioning, Disability and Health (ICF): the MG-DIS. Methods: Five consecutive steps were taken: literature review and selection of outcome measures; linking of measures’ concepts to ICF categories and selection of those reported by 30% of the instruments; comparison of linking results with a previous selection of MG-relevant ICF categories; patient interview; development of questions based on retained ICF categories. Results: Thirty-one papers containing 21 different outcome measures were found: 13 ICF categories were linked to them. Fifty-five items were retained after the comparison with the list of MG-specific categories, and were used for patient interview. Thirteen interviews were conducted before saturation of data was reached and the final list was composed of 42 categories: based upon them, 44 questions were developed. Conclusions: The preliminary version of the MG-DIS contains more information than each single MG-specific tool, in particular, for the component of environmental factors. Further research is needed to test its psychometric properties.

• Implications for Rehabilitation

• It is important that patient-reported outcome is incorporated in MG patient’s assessment.

• MG features can be evaluated with ICF-based methods.

• An MG-specific patient-reported disability assessment instrument can be used to monitor changes of functioning in patients on MG-specific treatments, and can be used in clinical trials as outcome measure.

     

Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF

Purpose: The purpose of this review was to describe literature relating to transition for young people with an intellectual disability and identify gaps within the current knowledge base. Method: A narrative literature review was undertaken. Searches of databases Medline, CINAHL, PsycINFO, ERIC, ISI Web of Science and ProQuest 500 International provided relevant research articles. The search terms used were intellectual disability, transition, employment, and ICF as well as other terms derived from the ICF. Manual searches of reference lists identified additional studies. Furthermore, government websites were searched for relevant reports and policies. Results: Transition literature was explored by ICF domains; body functions and structures, activity and participation and contextual factors. Studies were identified in some but not all areas and included literature describing self-determination and participation in leisure activities for those with mild intellectual disability. However, significant gaps were found particularly for those with severe intellectual disability. Conclusions: The ICF is a useful tool in framing a review of transition literature for young people with intellectual disability due to the complexity and multi-faceted nature of transition. The important influence of environmental factors including family systems, post-school services and access to transport were highlighted as having considerable impacts on transition outcomes.

Implications for Rehabilitation

• The ICF is a useful tool in framing transition research to identify gaps.

• The current body of literature in transition from school for young adults with intellectual disabilities is too singularly focused and rarely considers those with moderate to severe intellectual disability.

• There has been little research on this topic in low and middle income countries.

• The scale of the impact of environmental factors on young people transitioning from school to post-school is currently under-represented.

• A holistic approach to post-school outcomes needs to be undertaken in future research.

     

Simplified bipartite concepts of functioning and disability recommended for interdisciplinary use of the ICF

Abstract

Purpose: To argue for and propose bipartite concepts of functioning and disability, to tally with the structure of the ICF classification list, concepts of social models and clinical needs. Method: The ICF concepts are discussed in relation to the history of ideas regarding disability concepts and the needs for such concepts in interdisciplinary rehabilitation. Results: Bipartite concepts are presented; they refer to actual functioning, simply body functions/structures and participation, including functioning in standardized environments. Participation refers to actually performed “activities”, with “activities” simply denoting things that people may do. Bipartite concepts are congruent with the ICF classification and the structure of social models of disability, suitable for clinical and interdisciplinary use and easy to understand. The issue of standardized environments represents a methodological issue rather than the conceptual issue of defining functioning and disability. An individual perspective on activity and activity limitations, i.e. the middle part of the tripartite ICF concept, is somewhat similar to concepts of traditional language that were regarded as too generalizing already in 1912, when the interactional concept of “disability in a social sense” was introduced in rehabilitation practices. Conclusion: Bipartite concepts of functioning and disability are recommended for interdisciplinary use of the ICF.

• Implications for Rehabilitation

• The ICF classification is useful, but the ICF concept of activities in an individual perspective is confusing.

• We suggest a use of the term “activities” simply to denote things that people may do and “participation” to denote actually performed activities.

• Estimations of ability should be explicit about how they are related to environmental factors.

     

Self-rated disability,fear-avoidance beliefs,nonorganic pain behaviors are important mediators of ranges of active motion in chronic whiplash patients

Abstract

Purpose: The influence of self-rated disability and fear-avoidance beliefs on whiplash sufferers in their performance of active ranges of motion has not been studied well. We undertook a cross-sectional study to determine this. Methods: Chronic whiplash subjects completed a standard clinical examination. They completed the Neck Disability Index (NDI), the Tampa Scale for Kinesiophobia (TSK) and pain visual analog scale (VAS). Active ranges of motion (goniometer) and cervical nonorganic simulation signs (C-NOSS) were obtained by the examiner. Univariate and multivariable analyses were conducted on these scores. Results: Sixty-four subjects (37 female) with a mean age of 41.4 (SD 16.1) years completed all scores. NDI, pain VAS and C-NOSS correlated significantly with ROM. In a multivariable model, only the NDI score contributed significantly to the variance of the ROM scores (14%). Conclusion: As chronic whiplash sufferers perform ROM in a clinical examination, these ranges are importantly influenced by their self-perceived disability. Cervical nonorganic simulation signs can be helpful in distinguishing high from very high levels of disability and motion restriction. The lack of correlation with the TSK may present a challenge to the Fear Avoidance Model in whiplash.

• Implications for Rehabilitation

• Self-ratings of disability in chronic whiplash sufferers are influenced by their fear-avoidance beliefs.

• While self-ratings of disability are known to predict chronicity of whiplash, there is less known about how these ratings affect impairment assessment during recovery.

• This study shows that self-ratings of disability influence the presentation of impairment by chronic whiplash sufferers with respect to their ranges of neck motion.

• Signs of nonorganic behavior also influence ranges of motion and self-ratings of disability.

• These findings should be incorporated into the interpretation of impairment findings in chronic whiplash sufferers in order to improve management.

     

The extremity function index (EFI), a disability severity measure for neuromuscular diseases: psychometric evaluation

Objective: To adapt and to combine the self-report Upper Extremity Functional Index and Lower Extremity Function Scale, for the assessment of disability severity in patients with a neuromuscular disease and to examine its psychometric properties in order to make it suitable for indicating disease severity in neuromuscular diseases.

Design: A cross-sectional postal survey study was performed among patients diagnosed with a neuromuscular disease.

Methods: Patients completed both adapted extremity function scales, questionnaires for psychometric evaluation, and disease-specific questions. Confirmatory factor analysis was performed, and reliability and validity were examined.

Results: Response rate was 70% (n?=?702). The Extremity Function Index model with a two-factor structure – for upper and lower extremities – showed an acceptable fit. The Extremity Function Index scales showed good internal consistency (alphas: 0.97–0.98). The known-groups validity test confirmed that Extremity Function Index scales discriminate between categories of “Extent of limitations” and “Quality of Life.” Convergent and divergent validity tests confirmed that Extremity Function Index scales measure the physical impact of neuromuscular diseases. Relative validity tests showed that the Extremity Function Index scales performed well in discriminating between subgroups of patients with increasing “Extent of limitations” compared to concurrent measurement instruments.

Conclusion: The Extremity Function Index proved to be a sound and easy to apply self-report disability severity measurement instrument in neuromuscular diseases.

• Implications for rehabilitation

• The Extremity Function Index reflects the functioning of all muscles in the upper and lower extremities involved in activities of daily living.

• The Extremity Function Index is an easy to administer and patient-friendly disability severity measurement instrument that has the ability to evaluate differences in disability severity between relevant neuromuscular disease subgroups.

• The Extremity Function Index is a valid and reliable disability severity measurement instrument for neuromuscular diseases.

     

Disability prevalence among adults: estimates for 54 countries and progress toward a global estimate

Abstract

Objectives: We estimated disability prevalence among adults at global, regional and country levels using internationally comparable disability data and measure. Methods: We conducted a retrospective analysis of data from the World Health Survey (WHS) (2002–2004) for nationally representative samples of civilian, non-institutionalized populations in 54 countries. A disability was measured as having at least one severe or extreme difficulty with bodily functions (seeing, concentrating) and activities (moving around, self-care) based on an individual’s self-reports. Results: In the 54 countries under study, severe or extreme functional or activity difficulties are highly prevalent. For all countries, disability prevalence is estimated at 14% for all adults. Low and middle income countries have higher disability prevalence compared to high income countries. Among subgroups, disability prevalence stands at 12% among working age adults and 39% among the elderly. Women have higher prevalence than men. Conclusions: Disability is found to be highly prevalent among adults, with an estimated global prevalence at 14%. Disability deserves enhanced policy attention and resources in public health and international development.

• Implications for Rehabilitation

• Global disability prevalence is found to stand at 14% among adults.

• Disability prevalence is estimated to be higher in developing countries, among women and the elderly population.

• Rehabilitation needs worldwide are large and assessments are required to assess unmet needs globally.

     

Measurement of activity limitations and participation restrictions: examination of ICF-linked content and scale properties of the FIM and PC-PART instruments

Purpose: To explore the operationalization of activity and participation-related measurement constructs through comparison of item phrasing, item response categories and scoring (scale properties) for two separate instruments targeting activities of daily living.

Method: Personal Care Participation Assessment and Resource Tool (PC-PART) item content was linked to ICF categories using established linking rules. Previously reported ICF-linked FIM content categories and ICF-linked PC-PART content categories were compared to identify common ICF categories between the instruments. Scale properties of both instruments were compared using a patient scenario to explore the instruments’ separate measurement constructs.

Results: The PC-PART and FIM shared 15 of the 53 level two ICF-linked categories identified across both instruments. Examination of the instruments’ scale properties for items with overlapping ICF content, and exploration through a patient scenario, provided supportive evidence that the instruments measure different constructs.

Conclusions: While the PC-PART and FIM share common ICF-linked content, they measure separate constructs. Measurement construct was influenced by the instruments’ scale properties. The FIM was observed to measure activity limitations and the PC-PART measured participation restrictions. Scrutiny of instruments’ scale properties in addition to item content is critical in the operationalization of activity and participation-related measurement constructs.

• Implications for Rehabilitation

• When selecting outcome measures for use in rehabilitation it is necessary to examine both the content of the instruments’ items and item phrasing, response categories and scoring, to clarify the construct being measured.

• Measurement of activity limitations as well as participation restrictions in activities of daily living required for community life provides a more comprehensive measurement of rehabilitation outcomes than measurement of either construct alone.

• To measure the effects of interventions used in rehabilitation, it is necessary to select measures with relevant content and scale properties that enable evaluation of change in the constructs that are expected to change, as a result of the rehabilitation intervention.

     

Development of the international classification of functioning,disability and health core sets for hand conditions – results of the world health organization international consensus process

Purpose: A formal decision-making and consensus process was applied to develop the first version of the International Classification on Functioning, Disability and Health (ICF) Core Sets for Hand Conditions. Method: To convene an international panel to develop the ICF Core Sets for Hand Conditions (HC), preparatory studies were conducted, which included an expert survey, a systematic literature review, a qualitative study and an empirical data collection process involving persons with hand conditions. A consensus conference was convened in Switzerland in May 2009 that was attended by 23 healthcare professionals, who treat hand conditions, representing 22 countries. Results: The preparatory studies identified a set of 743 ICF categories at the second, third or fourth hierarchical level. Altogether, 117 chapter-, second-, or third-level categories were included in the comprehensive ICF Core Set for HC. The brief ICF Core Set for HC included a total of 23 chapter- and second-level categories. Conclusions: A formal consensus process integrating evidence and expert opinion based on the ICF led to the formal adoption of the ICF Core Sets for Hand Conditions. The next phase of this ICF project is to conduct a formal validation process to establish its applicability in clinical settings.

Implications for Rehabilitation

• The ICF offers a unified language of human functioning, disability and health substantial to describe comprehensively the experience of patients suffering from a determined disease.

• The ICF Core Sets for Hand Conditions provide the basic international standard of what should be measured and reported to describe functioning and disability of patients with hand conditions.

• The ICF Core Sets for Hand Conditions serve as a useful tool to guide clinicians in the assessment of a patient’s functioning in clinical studies, clinical encounters, and multi-professional evaluation.

     

Work disabilities and unmet needs for health care and rehabilitation among jobseekers: a community-level investigation using multidimensional work ability assessments

Objective: Comprehensive understanding of the prevalence and quality of work disabilities and unmet needs for health care and rehabilitation to support return to work (RTW) among jobseekers.

Design: Community-level, cross-sectional analysis with multidimensional clinical work ability assessments.

Setting: Paltamo, Finland.

Participants: Unemployed citizens either participating in the Full-Employment Project or long-term unemployed (n?=?230, 81%).

Main outcome measures: Based on data from theme interviews, patient records, supervisors’ observations of work performance and clinical examinations, a physician concluded the individual’s work ability, categorised into four groups: good work ability, good work ability expected after RTW support, able to transitional work only or unable to work. These groups were cross tabulated with primary diagnoses, types of plans to support RTW, as well as categories of social functioning and motivation, for which sensitivity and specificity scores in detecting work disability were calculated.

Results: Only about half of the jobseekers had good work ability, 27% were found unable to work in the open labour market and 15% even eligible for a disability pension. For 20%, care or rehabilitation was seen necessary to enable RTW. Poor supervisor- and self-rated performance at work or poor social functioning appeared as sensitive measures in detecting work disability.

Conclusions: Work disabilities and unmet needs for health care and rehabilitation are highly prevalent among jobseekers, as depicted using a multidimensional work ability assessment procedure inspired by the International Classification of Functioning (ICF). Further development of work ability assessment practices is clearly needed.

• KEY POINTS

• Although the association of unemployment with poor health is well known, evidence on the work ability of the unemployed remains scarce.

• Work disabilities are common among the unemployed.

• Multidimensional work ability assessment among the unemployed reveals unmet needs for care and rehabilitation to support return to work.

• Context sensitivity may add to the accuracy of the doctor’s conclusions on work ability.

     

Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer

Purpose: Third-party disability pertains to the consequences of a person’s impairment which impacts on the functioning and ability of their family members or significant others. With the emergence of research demonstrating the pervasive effects of dysphagia following head and neck cancer (HNC) on the carer, the aim of this study was to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe the third-party disability of carers of people with dysphagia following HNC. Method: Twelve carers of people with dysphagia following HNC participated in individual semi-structured, in-depth interviews. Categories and sub-categories identified from the qualitative analysis were mapped to the ICF using the established linking rules. Results: The majority of the categories and sub-categories from the qualitative analysis were successfully linked to the ICF with most linking to the Activities and Participation component. A number of contextual factors were also identified as impacting on the functioning of carers. Conclusions: The ICF can be successfully used to describe the third-party disability in carers of people with dysphagia following HNC management. This information could be used by clinicians, researchers and policy makers to help establish evidence-based guidelines that include carers in the assessment and management of dysphagia associated with HNC.

• Implications for Rehabilitation

• Clinical levels of distress and reduced quality of life have been associated with caring for a person with dysphagia following head and neck cancer.

• The flow-on effects of dysphagia experienced by a carer or close family member can be understood as a third-party disability, which impacts on their functioning, activities and participation in the context of the environment and personal factors.

• Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the assessment and support of this population, and advocate for the inclusion of the concerns of the carer in dysphagia management.

     

Assessing work disability for social security benefits: international models for the direct assessment of work capacity

Abstract

Purpose: It has been argued that social security disability assessments should directly assess claimants’ work capacity, rather than relying on proxies such as on functioning. However, there is little academic discussion of how such assessments could be conducted.

Method: The article presents an account of different models of direct disability assessments based on case studies of the Netherlands, Germany, Denmark, Norway, the United States of America, Canada, Australia, and New Zealand, utilising over 150 documents and 40 expert interviews.

Results: Three models of direct work disability assessments can be observed: (i) structured assessment, which measures the functional demands of jobs across the national economy and compares these to claimants’ functional capacities; (ii) demonstrated assessment, which looks at claimants’ actual experiences in the labour market and infers a lack of work capacity from the failure of a concerned rehabilitation attempt; and (iii) expert assessment, based on the judgement of skilled professionals.

Conclusions: Direct disability assessment within social security is not just theoretically desirable, but can be implemented in practice. We have shown that there are three distinct ways that this can be done, each with different strengths and weaknesses. Further research is needed to clarify the costs, validity/legitimacy, and consequences of these different models.

• Implications for rehabilitation

• It has recently been argued that social security disability assessments should directly assess work capacity rather than simply assessing functioning – but we have no understanding about how this can be done in practice.

• Based on case studies of nine countries, we show that direct disability assessment can be implemented, and argue that there are three different ways of doing it.

• These are “demonstrated assessment” (using claimants’ experiences in the labour market), “structured assessment” (matching functional requirements to workplace demands), and “expert assessment” (the judgement of skilled professionals).

• While it is possible to implement a direct assessment of work capacity for social security benefits, further research is necessary to understand how best to maximise validity, legitimacy, and cost-effectiveness.

     

Patients’ view on health-related aspects of functioning and disability of joint contractures: a qualitative interview study based on the International Classification of Functioning,Disability and Health (ICF)

Abstract

Purpose: The aim of this study was to identify health-relevant aspects of functioning and disability of persons aged 65 years or older with joint contractures, to link the findings to corresponding ICF categories and to describe the patients’ perspective. Methods: We conducted 43 qualitative, semi-structured, face-to-face interviews with affected persons in two different locations (Witten, Munich) and in three different settings. Data were analyzed using the “meaning condensation procedure” and then linked to ICF categories. Results: From all interviews a total of 2499 single meaning-concepts were extracted which were linked to 324 different ICF categories. The participants in all settings mainly reported problems related to “Mobility of a single joint (b710)”, “Sensation of pain (b280)” and problems related to “Walking (d450)”. Almost all participants reported “Products and technology for personal indoor and outdoor mobility and transportation (e120)” as a relevant environmental factor. Conclusions: From the patients’ perspective, joint contractures have an impact on multifaceted aspects of functioning and disability, mainly body functions, environmental factors and activities and participation. The results of this study will contribute to the development of a standard instrument for measuring functioning, disability and health-relevant aspects for patients with joint contractures.

• Implications for Rehabilitation

• Joint contractures are a major cause for the development of disability in older people.

• Patients’ perspectives and their personal experiences have to be considered when assessing the impact of joint contractures.

• The International Classification of Functioning, Disability and Health (ICF) is an appropriate framework for describing the patients’ multifaceted experience of joint contractures.

     

Addressing the barriers to accessing therapy services in rural and remote areas

Abstract

Purpose: Throughout the world, people with a disability who live in rural and remote areas experience difficulty accessing a range of community-based services including speech-, physio- and occupational therapy. This paper draws on information gathered from carers and adults with a disability living in a rural area in New South Wales (NSW), Australia to determine the extent to which people living in rural areas may receive a person-centred therapy service. Methods: As part of a larger study in rural NSW into the delivery of therapy services, focus groups and individual interviews were conducted with 78 carers and 10 adults with a disability. Data were analysed using constant comparison and thematic analysis. Results: Three related themes emerged: (i) travelling to access therapy; (ii) waiting a long time to get therapy; and (iii) limited access to therapy past early childhood. The themes overlaid the problems of recruiting and retaining sufficient therapists to work in rural areas. Conclusions: Community-based rehabilitation principles offer possibilities for increasing person-centred therapy services. We propose a person-centred and place-based approach that builds on existing service delivery models in the region and involves four inter-related strategies aimed at reducing travel and waiting times and with applicability across the life course.

• Implications for Rehabilitation

• Therapy service delivery in rural and remote areas requires:

• Place-based and person centred strategies to build local capacity in communities.

• Responsive outreach programs working with individuals and local communities.

• Recognition of the need to support families who must travel to access remotely located specialist services.

• Innovative use of technology to supplement and enhance service delivery.

     

Developing an ICF core set for post-stroke disability assessment and verification in Taiwan: a preliminary study

Purpose: The purpose of this study was to develop an ICF core set for post-stroke disability assessment and verification of bio-psycho-social problems. Method: Using the Delphi method, a consensus process was conducted. In total, 24 multidisciplinary experts from different institutions completed the consensus process. The questionnaire for the study comprised 144 ICF second-level, stroke-relevant categories. A 5-point Likert-type scale was used by participants to weight the impact of each category on activities of daily life after a stroke. Consensus of ratings was assessed with Spearman’s rho and semi-interquartile range indices. The core set for post-stroke disability assessment and verification was developed from those categories with a mean score ≥4.0 found in the third round of the Delphi exercise. Results: The core set for post-stroke disability assessment and verification contained 51 categories. Of these, 18 categories were from the component body functions, one from body structures, 22 from activities and participation, and 10 from environmental factors. The mean (standard deviation) Spearman’s rho was 0.72 (0.14), and Cronbach’s α was 0.98. Conclusions: The preliminary core set for post-stroke disability assessment and verification can offer comprehensive information on the performance of daily-life activities of chronic stroke survivors. Further validation is required.

Implications for Rehabilitation

• To identify stroke patients with permanent difficulties in Taiwan, the ICF core set for post-stroke disability assessment and verification (PSDV) focused on chronic stroke survivors in the community.

• The PSDV core set which is closely linked to the Barthel Index and Functional Independence Measure can offer comprehensive information on activities of daily living in stroke patients in Taiwan.

• With the PSDV core set, stroke patients with hemineglect or dysphagia can be assessed.

     

Reconsideration of the scheme of the international classification of functioning,disability and health: incentives from the Netherlands for a global debate

Purpose: The ICF (International Classification of Functioning, Disability and Health) framework (used worldwide to describe ‘functioning’ and ‘disability’), including the ICF scheme (visualization of functioning as result of interaction with health condition and contextual factors), needs reconsideration. The purpose of this article is to discuss alternative ICF schemes.

Method: Reconsideration of ICF via literature review and discussions with 23 Dutch ICF experts. Twenty-six experts were invited to rank the three resulting alternative schemes.

Results:The literature review provided five themes: 1) societal developments; 2) health and research influences; 3) conceptualization of health; 4) models/frameworks of health and disability; and 5) ICF-criticism (e.g. position of ‘health condition’ at the top and role of ‘contextual factors’). Experts concluded that the ICF scheme gives the impression that the medical perspective is dominant instead of the biopsychosocial perspective. Three alternative ICF schemes were ranked by 16 (62%) experts, resulting in one preferred scheme.

Conclusions: There is a need for a new ICF scheme, better reflecting the ICF framework, for further (inter)national consideration. These Dutch schemes should be reviewed on a global scale, to develop a scheme that is more consistent with current and foreseen developments and changing ideas on health.

• Implications for Rehabilitation

• We propose policy makers on community, regional and (inter)national level to consider the use of the alternative schemes of the International Classification of Functioning, Disability and Health within their plans to promote functioning and health of their citizens and researchers and teachers to incorporate the alternative schemes into their research and education to emphasize the biopsychosocial paradigm.

• We propose to set up an international Delphi procedure involving citizens (including patients), experts in healthcare, occupational care, research, education and policy, and planning to get consensus on an alternative scheme of the International Classification of Functioning, Disability and Health.

• We recommend to discuss the alternatives for the present scheme of the International Classification of Functioning, Disability and Health in the present update and revision process within the World Health Organization as a part of the discussion on the future of the International Classification of Functioning, Disability and Health framework (including ontology, title and relation with the International Classification of Diseases).

• We recommend to revise the definition of personal factors and to draft a list of personal factors that can be used in policy making, clinical practice, research, and education and to put effort in the revision of the present list of environmental factors to make it more useful in, e.g., occupational health care.

     

Assessing the impact of upper limb disability following stroke: a qualitative enquiry using internet-based personal accounts of stroke survivors

Purpose: Upper limb disability following stroke may have multiple effects on the individual. Existing assessment instruments tend to focus on impairment and function and may miss other changes that are personally important. This study aimed to identify personally significant impacts of upper limb disability following stroke. Methods: Accounts by stroke survivors, in the form of web-based diaries (blogs) and stories, were sought using a blog search engine and in stroke-related web-sites. Thematic analysis using the World Health Organisation’s International Classification of Functioning Disability and Health (ICF) was used to identify personal impacts of upper limb disability following stroke. Results: Ninety-nine sources from at least four countries were analysed. Many impacts were classifiable using the ICF, but a number of additional themes emerged, including emotional, cognitive and behavioural changes. Blogs and other web-based accounts were easily accessible and rich sources of data, although using them raised several methodological issues, including potential sample bias. Conclusions: A range of impacts was identified, some of which (such as use of information technology and alienation from the upper limb) are not addressed in current assessment instruments. They should be considered in post-stroke assessments. Blogs may help in the development of more comprehensive assessments.

• Implications for Rehabilitation

• A comprehensive assessment of the upper limb following stroke should include the impact of upper limb problems on social participation, as well as associated emotional, cognitive and behavioural changes.

• Using personalised assessment instruments alongside standardised measures may help ensure that these broader domains are considered in discussions between clinicians and patients.

• Rehabilitation researchers should investigate whether and how these domains could be addressed and operationalised in standard upper limb assessment instruments.

     

Web accessibility standards and disability: developing critical perspectives on accessibility

Abstract

Purpose: Currently, dominant web accessibility standards do not respect disability as a complex and culturally contingent interaction; recognizing that disability is a variable, contrary and political power relation, rather than a biological limit. Against this background there is clear scope to broaden the ways in which accessibility standards are understood, developed and applied. Methods: Commentary. Results: The values that shape and are shaped by legislation promote universal, statistical and automated approaches to web accessibility. This results in web accessibility standards conveying powerful norms fixing the relationship between technology and disability, irrespective of geographical, social, technological or cultural diversity. Conclusions: Web accessibility standards are designed to enact universal principles; however, they express partial and biopolitical understandings of the relation between disability and technology. These values can be limiting, and potentially counter-productive, for example, for the majority of disabled people in the “Global South” where different contexts constitute different disabilities and different experiences of web access. To create more robust, accessible outcomes for disabled people, research and standards practice should diversify to embrace more interactional accounts of disability in different settings.

• Implications for Rehabilitation

• Creating accessible experiences is an essential aspect of rehabilitation.

• Web standards promote universal accessibility as a property of an online resource or service. This undervalues the importance of the user’s intentions, expertize, their context, and the complex social and cultural nature of disability.

• Standardized, universal approaches to web accessibility may lead to counterproductive outcomes for disabled people whose impairments and circumstances do not meet Western disability and accessibility norms.

• Accessible experiences for rehabilitation can be enhanced through an additional focus on holistic approaches to accessibility blending digital and physical solutions, the use of BS 8878 and mixed-method approaches to accessibility benchmarking.

• Web standards and accessibility conformance should be considered together with user input and the recognition and development of local accessibility and rehabilitation expertize.

     

Assessment of activity limitations and participation restrictions with persons with chronic fatigue syndrome: a systematic review

Abstract

Purpose: To summarize measurement instruments used to evaluate activity limitations and participation restrictions in patients with chronic fatigue syndrome (CFS) and review the psychometric properties of these instruments. Method: General information of all included measurement instruments was extracted. The methodological quality was evaluated using the COSMIN checklist. Results of the measurement properties were rated based on the quality criteria of Terwee et?al. Finally, overall quality was defined per psychometric property and measurement instrument by use of the quality criteria by Schellingerhout et?al. Results: A total of 68 articles were identified of which eight evaluated the psychometric properties of a measurement instrument assessing activity limitations and participation restrictions. One disease-specific and 37 generic measurement instruments were found. Limited evidence was found for the psychometric properties and clinical usability of these instruments. However, the CFS-activities and participation questionnaire (APQ) is a disease-specific instrument with moderate content and construct validity. Conclusion: The psychometric properties of the reviewed measurement instruments to evaluate activity limitations and participation restrictions are not sufficiently evaluated. Future research is needed to evaluate the psychometric properties of the measurement instruments, including the other properties of the CFS-APQ. If it is necessary to use a measurement instrument, the CFS-APQ is recommended.

• Implications for Rehabilitation

• Chronic fatigue syndrome (CFS).

• Chronic fatigue syndrome causes activity limitations and participation restrictions in one or more areas of life.

• Standardized, reliable and valid measurement instruments are necessary to identify these limitations and restrictions.

• Currently, no measurement instrument is sufficiently evaluated with persons with CFS.

• If a measurement instrument is needed to identify activity limitations and participation restrictions with persons with CFS, it is recommended to use the CFS-APQ in clinical practice and scientific research.

     

Cultural models of child disability: perspectives of parents in Malaysia

Abstract

Background: This study examined parents’ developmental concerns for their children within the context of systems of care in Malaysia.

Methods: Focus groups and interviews were conducted in peninsular Malaysia and Borneo.

Results: Parents’ perceptions of developmental delay stemmed from three sources: the cultural, resource, and the social environments.

Conclusion: There is a need to develop a medical support system in Malaysia that considers a life-course perspective, including prenatal care, screening/diagnosis, and services. This system should embrace a family-centered approach to diagnosis, referral, intervention, and support with sensitivity to cultural beliefs, family preferences, and barriers to care.

• Implications for Rehabilitation

• Parental perceptions of disability affect the strategies they use to cope.

• This research found that cultural conceptions of disability, available resources, and social support affect parental perceptions of disability.

• The resource environment in Malaysia significantly restricts parents’ ability to cope with their child's disability.

• This research recommended that the medical system of Malaysia develops a life-course perspective to disability to provide a range of care for children with disabilities including prenatal care, screening and rehabilitation or coping services.