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Participation in Practice: Examples of inclusive action for a “Participation Revolution”

March 2020

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Humanitarian organizations and donors have committed to change the way humanitarian action is carried out and create a “Participation Revolution.” In this webinar issues addressed included:

  • inclusion of the people and communities affected by humanitarian crises in practice;
  • how organizations are ensuring that the voices of the most vulnerable groups considering gender, age, ethnicity, language, and special needs are heard and acted upon;
  • how program activities and budgets are designed to support the changes that affected people demand


In this webinar, organized on 26 March 2020 by PHAP and the Steering Committee for Humanitarian Response, we took stock of the progress to date on workstream six of the Grand Bargain and heard success stories from the field that can help agencies achieve a sustained change in how they design and deliver their programs.

 

A full transcript is available. Webinar registrants were asked to provide what they thought, in their context, was the most important factor enabling participation in practice and what they thought was the most important factor preventing participation in practice. Answers are provided in an Annex.

Persons with disabilities in humanitarian response: New guidelines for more inclusive humanitarian action

March 2020

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The IASC recently endorsed guidelines for the inclusion of persons with disabilities in humanitarian action. How can these guidelines help make humanitarian action more inclusive? On 26 February 2020, ICVA and PHAP organized a webinar together with the Inter-Agency Standing Committee (IASC) secretariat and the Reference Group on Inclusion of Persons with Disabilities in Humanitarian Action, which introduced the guidelines and discuss how they can be implemented in practice

Catering for ‘very different kids’: distance education teachers’ understandings of and strategies for student engagement

HARRIS, Lois
DARGUSCH, Joanne
AMES, Kate
BLOOMFIELD, Corey
2020

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Compulsory distance education has always sought to be inclusive, providing educational opportunities for K-12 students unable to attend mainstream, face-to-face schools for medical, geographical, or personal reasons. However, how to effectively engage these diverse learners has remained a perpetual challenge, with a need for further investigation into the nature of student engagement with compulsory school distance contexts and how teachers can best support it. This qualitative study used focus groups (n=2 groups, n=16 participants) to examine teacher definitions and student engagement strategies within eKindy-12 distance education in Queensland, Australia. Categorical analysis was conducted using a priori codes for definitions, focusing on four previously established engagement types (i.e. behavioural, emotional, cognitive, and agentic engagement), and in vivo codes for strategies. Teacher definitions focused strongly on behavioural engagement, but most also contained elements of emotional and cognitive engagement; agentic engagement was only occasionally evidenced via practice descriptions. Teachers described engaging students by: building relationships, creating a safe classroom environment through differentiation, using inclusive technological tools to facilitate interaction and monitor progress, making learning fun and relevant, drawing on school-wide pedagogical frameworks and teaching strategies, and encourage self-regulation. Findings suggest distance education teachers face unique challenges around evidencing engagement and supporting student agency.

“You have to argue the right way”: user involvement in the service delivery process for assistive activity technology

PEDERSEN, Heidi
KERMIT, Patrick S
SÖDERSTRÖM, Sylvia
2020

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Purpose: 

This article critically examines user-involvement in the service delivery process for assistive activity technology.

 

Methodology:

Data were collected in semi-structured interviews with 44 end users of assistive activity technology and in focus group interviews with 11 professionals at Norway’s Assistive Technology Centre. Data was analysed according to a stepwise deductive–inductive approach.

 

Findings: 

Flawed organisational principles like division of responsibility, unclear regulations, and a lack of competence with assistive activity technology among service professionals have hindered user involvement in the service delivery process.

 

Conclusion:

 A missing knowledge of assistive activity technology among professionals and the current organisation of services creates barriers for a positive collaboration with users in the service delivery process of assistive activity technology.

Development of the MobQoL patient reported outcome measure for mobility-related quality of life

BRAY, Nathan
HAF SPENCER, Llinos
TUERSLEY, Lorna
TUDOR EDWARDS, Rhiannon
March 2020

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Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure.

 

Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions.

 

Results: Forty-six interviews were conducted with 37 participants (aged 20–94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed.

 

Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.

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.

Arranging play activities with missing items to increase object-substitution symbolic play in children with autism spectrum disorder

LEE, Gabrielle T
QU, Kezheng
HU, Xiaoyi
JIN, Ning
HUANG, Jingiing
March 2020

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Purpose: Many children with autism spectrum disorder do not have symbolic play skills. The purpose of this study was to evaluate the effects of a training procedure on the acquisition, maintenance, and generalization of object-substitution symbolic play in children with autism spectrum disorder.

 

Methods: A single-case experimental design (multiple-probe across four behaviors) was used. One girl (5 years) and two boys (4–5 years) participated in this study. The training procedure involved withdrawing necessary items in play activities, supplying multiple substitutes, and providing hierarchical assistive prompts. Each child’s symbolic play responses across baseline, intervention, and follow-up conditions were recorded and graphed. Data analysis involved visual inspection of graphs.

 

Results: The results indicated that the procedure effectively increased and maintained object-substitution symbolic play. Generalization to untaught play activities occurred in all children, and symbolic play increased in the free play setting for one child.

 

Conclusions: Arranging play activities with missing items increased opportunities for children to engage in symbolic play. The training procedure can be used in clinical and educational settings as an initial step to establish and improve complex play behavior in children with autism spectrum disorder who lack such skills.

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.

Marriages among people with disabilities in 19th-century Sweden: marital age and spouse’s characteristics

VIKSTRÖM, Lotta
HAAGE, Helena
HÄGGSTRÖM LUNDEVALLER, Erling
2020

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While marrying was an expected event in 19th-century Western society and has been subject to much historical research, there are few studies on how disabilities influenced people’s marriage patterns and spouse selection. The aim of this analysis is to contribute clarification on this issue by examining with whom disabled men and women married and the marital age and socio-demographic characteristics of them and their spouses. In total, 188 disabled individuals born in the first half of the 19th century and who married in the Sundsvall region, Sweden, are studied. The results reveal that disabled men and women did not marry each other, and they entered into marriage at a slightly higher age than the average, although there was usually no marked age gap between them and their spouse. Endogamous patterns were primarily found regarding the socio-spatial background of the two spouses. This analysis is one of the few studies identifying the mar- riages among a comparatively large number of disabled people using demographic data. Their participation in the partner pool highlight their agency historically and emphasize that disability did not lead to distance from social life in past society.

 

 

Work ethics and societal norms influence sick leave and return to work: tales of transformation

MOLDVIK, Isa
STAHL, Christian
MUSSENER, Ulrika
February 2020

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Purpose: This study’s purpose was to explore how people on sick leave manage societal norms and values related to work, and how these influence their perspectives of themselves throughout the rehabilitation process.

 

Materials and methods: This was a longitudinal interview study with a narrative approach, comprising 38 interviews with 11 individuals on long-term sick leave. Data collection was conducted in two phases and analysed iteratively through content analysis.

 

Results: The results suggest that work ethics and societal norms influence individuals’ views of themselves and the sick leave and rehabilitation process. Conforming one’s personal values to the work norm can create internal conflicts and cause feelings of shame for not being able to live up to the established norm. The strong work norm may create unrealistic expectations, which in some cases may result in constraining the return to work process.

 

Conclusion: To transform a sick leave narrative into a positive one, societal norms and their influence on identity needs to be recognised. Stakeholders involved in the process can contribute to a positive transformation by not only supporting return to work, but also to acknowledge and help people manage their self-image as having a disability that limits their ability to work.

Prevalence of trachoma in Pakistan: Results of 42 population-based prevalence surveys from the Global Trachoma Mapping Project

KHAN, A A
et al
January 2020

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Previous phases of trachoma mapping in Pakistan completed baseline surveys in 38 districts. To help guide national trachoma elimination planning, this work was carried out to estimate trachoma prevalence in 43 suspected-endemic evaluation units (EUs) of 15 further districts. A population-based trachoma prevalence survey was planned for each EU. Two-stage cluster sampling was employed, using the systems and approaches of the Global Trachoma Mapping Project.

 

Ophthalmic Epidemiol. 2020 Apr;27(2):155-164

doi: 10.1080/09286586.2019.1708120

Teachers’ strategies for enhancing shy children's engagement in oral activities: necessary, but insufficient?

NYBORG, Geir
MJELVE, Liv Heidi
EDWARDS, Anne
CROZIER, W R
2020

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Shy children can present challenges for teachers aiming at inclusive classrooms. Their educational attainments can be lower than their peers, they may have difficulties in adjustment to school and they can be at risk of meeting clinical criteria for social anxiety disorder. One recurrent finding is that they are often quiet across a range of school situations. The study reported here focused on teachers’ strategies to engage shy students in frequently occurring oral activities, such as group work, in elementary school classrooms. Data were gathered through post-observation stimulated-recall interviews with eight teachers who had experience of success with shy students and three focus groups with 11 similarly experienced teachers. The analysis examined teachers’ actions with these children to enhance their visible engagement in activities that require oral participation. The findings suggest that although teachers attended to the psychosocial aspects of student engagement, there was little emphasis on the pedagogic purposes of oral activities with these children. We conclude that more attention should be paid to the academic aspects of oral activities when aiming at inclusion for shy children.

Experiences of teaching sexual and reproductive health to students with intellectual disabilities

NELSON, Becky
PETTERSSON, Karen Odberg
EMMELIN, Maria
2020

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There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers’ experience is described through their efforts to ‘accept the challenge to coach special-needs students into adulthood’. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students’ shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students’ particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health.

Feasibility and short-term effects of Activity Coach+: a physical activity intervention in hard-to-reach people with a physical disability

KROPS, L A
GEERTZEN, J H B
HOREMAN, L D
BUSSMAN, J B J
DIJKSTRA, P U
DEKKER, R
January 2020

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Purpose: Existing physical activity interventions do not reach a considerable proportion of physically disabled people. This study assessed feasibility and short-term effects of Activity Coach+, a community-based intervention especially targeting this hard-to-reach population.

 

Methods: Feasibility was determined by reach, dropouts, and compliance with the protocol. Physical activity was measured with the Activ8 accelerometer and the adapted SQUASH questionnaire. Health outcomes were assessed by body composition, blood pressure, hand grip force, 10-metre walk test, 6-minute walk test, and the Berg Balance Scale. The RAND-36, Exercise Self-Efficacy Scale, Fatigue Severity Scale, and IMPACT-S were administered. Measurements were performed at baseline and after 2 and 4 months. Changes over time were analysed by Friedman tests.

 

Results: Twenty-nine participants enrolled during the first 4 months, of whom two dropped out. Intervention components were employed in 86–100% of the participants. Physical activity did not change after the implementation of Activity Coach+. Body mass index (p = 0.006), diastolic blood pressure (p = 0.032), walking ability (p = 0.002), exercise capacity (p = 0.013), balance (p = 0.014), and vitality (p = 0.049) changed over time.

 

Conclusions: Activity Coach + is feasible in a community setting. Indications for effectivity of Activity Coach + in hard-to-reach people with a physical disability were found.

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.

Assessing significant others’ cognitions and behavioral responses in occupational health care for workers with a chronic disease

SNIPPEN, Nicole C
DE VRIES, Haitze J
DE WIT, Mariska
VAN DER BURG-VERMEULEN, Sylvia J
BROUWER, Sandra
HAGEDOORN, Mariet
January 2020

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Purpose: To examine current practices of occupational health professionals in assessing significant others’ cognitions and behavioral responses that may influence work outcomes of workers with a chronic disease.

 

Methods: A survey study among occupational health professionals, focusing on the assessment of illness perceptions, work-related beliefs and expectations, and behavioral responses of significant others of workers with a chronic disease. We performed linear regression analyses to investigate which factors are related to occupational health professionals’ assessment practices. We used thematic analysis to analyze qualitative data on occupational health professionals’ reasons to assess or overlook significant others’ cognitions and behavioral responses.

 

Results: Our study sample included 192 occupational health professionals. Most seldom asked about significant others’ cognitions and behavioral responses. Organizational norms and occupational health professionals’ self-efficacy were related to reported assessment practices. Reasons to assess significant others’ cognitions and behavioral responses included recognizing their influence on work participation, and occurrence of stagnation. However, occupational health professionals indicated some doubt whether such assessment would always contribute to better care.

 

Conclusions: It is not common practice for occupational health professionals to assess significant others’ cognitions and behavioral responses, although they recognize the influence of these factors on work outcomes. More research is needed as to how occupational health professionals can best address the role of significant others, and apply these new insights in their daily practice.

A preliminary study to understand how mainstream accessibility and digital Assistive Technologies reaches people in Lower- and Middle-Income countries

JAHAN, Nusrat
BARBARESCHI, Giulia
ARANDA JAN, Clara
MUTUKU, Charles Musungu
RAHMAN, Naemur
AUSTIN, Victoria
HOLLOWAY, Catherine
2020

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There is little that we know about how mainstream accessibility and Digital AT in practice reaches people in lower and middle-income countries (LMICs). In this study, eight experts were interviewed who are established in the domain of training people with disabilities, advising on policy and facilitating access and Digital AT, and shared their diverse experiences. The insights we assimilate from these conversations should help developers of accessibility and Digital AT solutions to more effectively deliver products and services to those in need. The same insights should also provide a better understanding of the market to business strategists to deliver pathways to accessibility and Digital AT.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

Instating settings of emergency education in Vienna: temporary schooling of pupils with forced migration backgrounds

PROYER, Michelle
BIEWER, Gottfried
KREUTER, Linda
WEIß, Jekaterina
2019

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In the year 2015, Austria was one of the main European destinations of displaced persons. According to education authoritiesaround 15,000 children with a forced migration background of school age who arrived in Austria over the course of a few months from late2015 to the beginning of 2016 called for immediate and partly temporary solutions. Due to Austrian legislation and unlike other countries,every child living in Austria between the ages of six to fifteen (or for nine years of schooling) is entitled to receive compulsory education. Though the school administration of Vienna generally promotes an inclusive approach to education in regular schools, schools inneighbourhoods with a large refugee population were reportedly unable to provide appropriate and adequate education for all children. Inresponse, the local school authority in Vienna decided to establish temporary classrooms in refugee accommodations. This article describesand analyses the emergence of new educational structures from the point of view of university students and lecturers who took part in theone and a half years of its implementation. The article thereby aims to document specific perspectives on educational emergency measuresat a certain point of time. In both the primary and secondary sectors, the emergence of a new temporary field of specialised and exceptional education were observed and recorded in a thick description of dynamic processes of trans-institutional, trans-organisational, transprofessional, communal, and individual development. Thus, the article presents a multifaceted picture of problems in refugee education under exceptional circumstances. The findings illustrate how insufficient educational opportunities for those falling outside the age of compulsory schooling – in particular, preschool children as well as youth older than fifteen – diminish possibilities for the inclusion of these children within and beyond education.

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