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Balancing care and work: a case study of recognition in a social enterprise
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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.
Between duty and right: disabled schoolchildren and teachers’ ableist manifestations in Sweden
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In this article we discuss ableist manifestations about chronically ill and disabled schoolchildren in Sweden. On claiming their right to schooling, these children risk being excluded due to not conforming with norms while being refused alternative formats that would enable participation. They are then accused of not attending school and construed as problematic. Parents are derided as mollycoddling perpetrators by teachers who perceive themselves as superior knowers of disability and illness, polarising an already infected school debate. Alternative formats for participation are derided, claiming that certain disabilities do not exist or that parents exaggerate their children’s symptoms. We concede that teachers’ poor work environments due to underfunding and unreasonable workloads are problematic, but we are adamant that unfavourable work conditions must not entail unethical professional conduct. We hope this article will contribute to putting the situation of chronically ill and disabled schoolchildren in Sweden on the radar of Critical Disability Studies as well as in relevant fields of practice and that it might stimulate a change in public debate.
‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders
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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
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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
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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.
LEARN2MOVE 0–2 years, a randomized early intervention trial for infants at very high risk of cerebral palsy: family outcome and infant’s functional outcome
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Purpose: To compare family and functional outcome in infants at very high risk of cerebral palsy, after receiving the family centred programme “Coping with and Caring for infants with special needs (COPCA)” or typical infant physiotherapy.
Materials and methods: Forty-three infants at very high risk were included before 9 months corrected age and randomly assigned to one year COPCA (n = 23) or typical infant physiotherapy (n = 20). Family and infant outcome were assessed before and during the intervention. Physiotherapy intervention sessions were analysed quantitatively for process analysis. Outcome was evaluated with non-parametric tests and linear mixed-effect models.
Results: Between-group comparisons revealed no differences in family and infant outcomes. Within-group analysis showed that family’s quality of life improved over time in the COPCA-group. Family empowerment was positively associated with intervention elements, including “caregiver coaching.”
Conclusions: One year of COPCA or typical infant physiotherapy resulted in similar family and functional outcomes. Yet, specific intervention elements, e.g., coaching, may increase empowerment of families of very high risk infants and may influence quality of life, which emphasizes the importance of family centred services.
“With CO-OP I’m the boss” – experiences of the cognitive orientation to daily occupational performance approach as reported by young adults with cerebral palsy or spina bifida
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Purpose: Restrictions to activity and participation in persons with cerebral palsy or spina bifida are often due to both motor and executive dysfunction. Hence methods focusing solely on motor issues are not enough to enhance participation. The Cognitive Orientation to daily Occupational Performance ApproachTM is a performance-based approach offering clients opportunities to create their own strategies to learn skills. The aim of the present study was to explore and describe experiences of the Cognitive Orientation to daily Occupational Performance Approach as reported by young adults with cerebral palsy or spina bifida.
Methods: Qualitative content analysis was used. Semi-structured individual interviews were conducted with the 10 participants aged 16–28, post-intervention and at 6-months follow-up.
Results: The participants described how the Cognitive Orientation to daily Occupational Performance Approach enhanced their self-efficacy. Four categories describing the participants’ experiences emerged: “CO-OP is a different way of learning”, “CO-OP sometimes puts a strain on me”, “CO-OP supports my way of thinking and doing” and “CO-OP boosts me”.
Conclusion: The young adults expressed that the Cognitive Orientation to daily Occupational Performance intervention, although sometimes challenging, was worth the effort because it provided them with an opportunity to master everyday-life problems by using meta-cognitive thinking, which enhanced their self-efficacy.
Return to work predicts perceived participation and autonomy by individuals with stroke
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Purpose: Participation in activities of everyday life is seen as main goal of rehabilitation after a stroke and return to work is an important factor to consider for the substantial number of persons having a stroke at working age. The current study aims to investigate whether returning to work would predict self-perceived participation and autonomy in everyday life after a stroke, from a long-term perspective.
Materials and methods: Persons with first-ever stroke at age 18–63 years in 2009–2010, Gothenburg, were included. As 5-year follow-up, the Impact on Participation and Autonomy questionnaire was sent out, investigating self-perceived participation/autonomy in five levels, and work status was investigated from national sick-absence registers. Prediction of work on participation/autonomy was investigated with logistic regression.
Results: A total of 109 participants (49%) responded to the questionnaire. The majority (69–94%) perceived very good participation/autonomy in all domains and 59% were working 5 years after stroke. Working was a significant predictor of high participation/autonomy in all domains of the questionnaire.
Conclusions: Being able to return to work after a stroke seems to be important for self-perceived participation/autonomy. This emphasizes the importance of work-oriented information and rehabilitation after a stroke at working age.
Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial
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Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.
Materials and methods: Adolescents (15–22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.
Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI –0.30, 0.21, d = 0.1]; social participation composite [95% CI –0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.
Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study
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Purpose: To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP).
Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9–13 years) included 67 young adults with CP (age 21–27 years). The Vineland adaptive behavior scales (VABS) and Life Habits questionnaire were used to assess attendance and difficulty in participation in domestic life and interpersonal relationships. Baseline factors were categorised according to the international classification of functioning, disability, and health. Stepwise multiple linear regression analyses determined significant predictors (p < 0.05).
Results: Lower manual ability, intellectual disability (ID), epilepsy and lower motor capacity predicted decreased future participation in domestic life, and/or interpersonal relationships (explained variance R2 = 67–87%), whereas no association was found with environmental and personal factors. Extending models with baseline fine motor skills, communication, and interpersonal relationships increased R2 to 79–90%.
Conclusions: Childhood factors account for 79–90% of the variation in young adult participation in domestic life and interpersonal relationships of individuals with CP. Children with limited motor capacity, low manual ability, ID, or epilepsy are at risk for restrictions in participation in young adulthood. Addressing fine motor, communication, and social skills in paediatric rehabilitation might promote young adult participation.
The use of information and communication technology in healthcare to improve participation in everyday life: a scoping review
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Background and purpose: The increase in use of everyday information and communication technologies can lead to the need for health professionals to incorporate technology use competencies in practice. Information and communication technologies has the potential to improve participation in daily life among people with disability. The aim was to review and describe evidence of the use of information and communication technology, including mobile technology, for improving participation in everyday life. A secondary aim was to describe how study outcomes were related to participation.
Materials and methods: A scoping review methodology was used to identify studies through databases as MEDLINE, CINAHL, Cochrane Library. Thereafter, the studies were screened and assessed for inclusion.
Results: Eleven studies were included. The most commonly used technology were videoconferencing and the telephone. Ten of the 11 studies reported a change in participation in everyday life. Participation was mainly described as involvement in a life situation or related to activities of daily living.
Conclusion: Delivering an intervention to improve participation through information and communication technology can be a valid option in rehabilitation. There is a need to measure and describe the intervention and its outcomes in relation to a definition of participation in future studies.
Pedagogical Relational Teachership (PeRT) – a multi-relational perspective
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This article presents a theoretical relational perspective of education, Pedagogical Relational Teachership (PeRT), which supports the development of new knowledge about teachers’ relational proficiencies to create opportunities for students to participate in their education and to emerge as unique individuals and speak with their own voices. Within the field of inclusive education, it is a relational approach where teaching is to be understood relationally. The fundamental bases in this inclusive perspective on education are the Convention on the Rights of the Child and the Salamanca Statement. The concept of relational teachership is elaborated on to emphasise the importance of teachers’ relational proficiencies in the classroom. The article also clarifies how PeRT includes a multi-dimensional model to illuminate relational processes and relationships on different levels within the educational system. PeRT is a relational approach for scholars and practitioners, which can be seen as a new beginning and an invitation to a relational pathway that explores participation, accessibility and equity.
Impact of transition to an individualised funding model on allied health support of participation opportunities
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Introduction: The National Disability Insurance Scheme is the new consumer-controlled funding system for people with disability in Australia, and is expected to enhance participation outcomes of people with disability. This research explored participation opportunities for people with disability during the formative period of transition to the scheme, through stakeholder accounts of changes in allied health service contexts.
Materials and methods: Qualitative data were generated during interviews, workshops and meetings with industry, policy, practice and education stakeholders involved in scheme services. Inductive coding explored key themes within the data. The International Classification of Functioning model was then applied as a deductive coding framework to illuminate how the scheme was perceived to be impacting participation opportunities for recipients of scheme funding.
Results and discussion: Using the International Classification of Functioning helped us illuminate whether changes resulting from scheme transition posed participation opportunities or barriers for scheme recipients. Research participants often framed these changes negatively, even when examples suggested that changes had removed participation barriers for scheme recipients. Some participants viewed changes as obstructing equitable and quality professional practice. We explore potential opportunities to resolve tensions that also optimise the participation outcomes of individuals who receive services through individualised funding.
Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination
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Purpose: Stigmatisation can negatively affect opportunities for people with intellectual disabilities to participate in society. Stereotyping, a first step in the process of stigmatisation, has been insufficiently explored for people with intellectual disabilities. This study examined the general public’s set of stereotypes that is saliently attributed to people with intellectual disabilities as well as the relationship of these stereotypes with discriminatory intentions and familiarity.
Materials and methods: A mixed-method cross-sectional survey within a representative sample of the Dutch population (n = 892) was used. Stereotypes were analysed with factor analysis of a trait-rating scale, and qualitative analysis of an open-ended question. The relationship between stereotypes and discrimination as well as familiarity with people with intellectual disabilities was explored through multivariate analyses.
Results and conclusions: Four stereotype-factors appeared: “friendly”, “in need of help”, “unintelligent”, and “nuisance”. Stereotypes in the “nuisance” factor seemed unimportant due to their infrequent report in the open-ended question. “Friendly”, “in need of help”, “unintelligent” were found to be salient stereotypes of people with intellectual disabilities due to their frequent report. The stereotypes did not relate to high levels of explicit discrimination. Yet due to the both positive and negative valence of the stereotypes, subtle forms of discrimination may be expected such as limited opportunities for choice and self-determination. This may affect opportunities for rehabilitation and might be challenged by protest-components within anti-stigma efforts.
Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs
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Purpose: Patients with spinal muscular atrophy (SMA) suffer from slowly progressive weakness of axial, respiratory and proximal muscles, leading to restrictions in activity and participation. This study aims to investigate patients’ level of psychological well-being, using the International Classification of Functioning model and self-determination theory as theoretical frameworks.
Materials and methods: In this cross-sectional study, adults with SMA were invited to complete a questionnaire. Instruments to assess psychological well-being included the Satisfaction with Life Scale, the Rosenberg Self-Esteem Scale and the Positive and Negative Affect Scale. Hierarchical lineal regression analyses were performed to investigate the contribution of participation (International Classification of Functioning model) and satisfaction of the need for autonomy, competence and relatedness (self-determination theory) to well-being.
Results: Ninety-two respondents (67%) returned the questionnaire. Levels of psychological well-being were comparable to that of healthy reference samples. Well-being was unrelated to sociodemographic variables or illness characteristics. By contrast, well-being was closely related to respondents’ satisfaction with participation, and their sense of autonomy, competence and relatedness.
Conclusions: This study illustrates the relevance of psychological needs for understanding well-being of individuals with SMA. Supporting patients in meeting their psychological needs should become an objective of person-centred care for this population.
Employees with hearing impairment. A qualitative study exploring managers’ experiences
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Purpose: Explore managers’ experiences regarding employees with hearing impairments.
Materials and methods: Individual interviews with ten managers having employees with hearing impairment. The interviews were analyzed using Systematic text condensation.
Results: The managers felt great responsibility for their employees’ functioning, but hearing loss issues were easily forgotten. They found access to information as imperative to secure workplace adjustments, and temporary needs, rather than permanent ones, were easily met. Despite their challenging nature, meetings were not accommodated to meet hearing loss needs. Support in accommodation processes at the workplace was not requested since minor adjustments were perceived as sufficient.
Conclusion: The results show that there are barriers towards developing less strenuous working conditions for employees with hearing impairments. The implications of hearing loss should be recognized as risk factors for fatigue and treated accordingly. Appropriate services are necessary to support the stakeholders at the workplace and utilize the room for manoeuver in the accommodation process. Further studies should identify how such services can accommodate both the employees, and managers’ needs.
A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness
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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.
Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.
Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.
Time to update the ICF by including socioemotional qualities of participation? The development of a “patient ladder of participation” based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study)
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Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.
Methods: Fifty-nine patients (age 18–63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the type of situations described and later on, categories based on quality aspects of participation were developed.
Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.
Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It is important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.
Working life trajectories with hearing impairment
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Purpose: The aim was to identify and explore factors, which facilitate or hinder work participation for people with hearing impairment.
Materials and methods: In-depth interviews with 21 hearing impaired individuals of 32–67 years of age with a present or recent vocational affiliation were conducted. The analysis was conducted using a grounded theory approach.
Results: The analysis resulted in a conceptual framework of working life trajectories evolving through three phases of acknowledgement of hearing loss impact: the pre-acknowledgement, acknowledgement, and post-acknowledgement phase. The phases were influenced by the qualities of three contexts: the personal, the workplace, and the service provider. The qualities of the contexts, together with the amount of time spent in a pre-acknowledgement phase, formed the trajectories towards continuation of work participation or towards a disconnection. Accumulated risk factors constituted increased likelihood of disconnecting trajectories, while accumulated facilitating factors supported sustainable trajectories.
Conclusions: The results revealed a need for extended support at the workplaces, which includes the manager, colleagues, and professionals in the aim of preventing exhaustion and facilitate work participation among employees with hearing impairments. Joint action in facilitating communicative participation would share the responsibility for accommodation measures and broaden the room for manoeuver at the workplace.
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