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Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

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Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

What do Dutch general education teachers do to facilitate the social participation of students with SEBD?

DE LEEUW, Renske Ria
DE BOER, Anke
MINNAERT, Alexander
2018

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Few studies have addressed the daily practice of applied teacher strategies aimed at facilitating the social participation of students with social-emotional problems or behavioural difficulties (SEBD). In this paper, we present two interlinked studies that address this topic. The main study reports on the development of the Teacher Strategy Questionnaire on Social Participation in the Classroom (TSQ-SPC). We tested the questionnaire’s construct validity by performing a second-order confirmatory factor analysis. The follow-up study presents the results of a survey of 163 Dutch general primary education teachers of inclusive classes using a modified version of the TSQ-SPC. It provides insights on the strategies that teachers apply in their daily practice to facilitate positive social participation of students with SEBD. The findings of both studies suggest that general primary education teachers apply a limited repertoire of strategies. Accordingly, there is an urgent need for further research focusing on the development of interventions and revisions of the pre- and in-service teacher development curricula aimed at adequately supporting and preparing general education teachers.

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

Key factors for the bicycle use of visually impaired people: a Delphi study

JELIJS, Bart
HEUTINK, Joost
DE WAARD, Dick
BROOKHUIS, Karel A
MELIS-DANKERS, Bart J M
June 2018

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Purpose: This study aims to identify the most important factors that influence the independent bicycle use of visually impaired people in the Netherlands.

 

Materials and methods: Both visually impaired people and professionals participated in a two-round online Delphi study (n = 42). In Round 1 the participants identified the factors which they ranked by relevance in Round 2.

 

Results: The participants prioritised environmental factors related to the traffic situation, the characteristics of the infrastructure, and weather and light conditions (Kendall’s W = 0.66). They indicated that the most influencing personal factors are related to personality, traffic experience, and personal background (W = 0.58). Glaucoma was ranked as the most relevant ophthalmic condition (W = 0.74), while glare was regarded as the most important factor with respect to the visual functions (W = 0.78).

 

Conclusions: The factors provided by this study can be used to optimise the independent cycling mobility of visually impaired people. More research is needed to investigate, both, how and to what extent the mentioned factors influence the cycling behaviour.

Target population’s requirements on a community-based intervention for stimulating physical activity in hard-to-reach physically disabled people: an interview study

KROPS, Leonie A
FOLKERTSMA, Nienke
HOLS, Doortje H J
GEERTZEN, Jan H B
DIJKSTRA, Pieter U
DEKKER, Rienk
May 2018

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Purpose: To explore ideas of the target population about a community-based intervention to stimulate physical activity in hard-to-reach physically disabled people.

 

Materials and methods: Semi-structured interviews were performed with 21 physically disabled people, and analyzed using thematic analyses. Findings were interpreted using the integrated Physical Activity for People with a Disability and Intervention Mapping model.

 

Results: The intervention should aim to stimulate intrinsic motivation and raise awareness for the health effects of physical activity. It should provide diverse activities, increase visibility of these activities, and improve image of physical activity for physically disabled people. Participants suggested to provide individual coaching sessions, increase marketing, present role models, and assign buddies. Potential users should be approached personally through intermediate organizations, or via social media and word of mouth promotion. Participants suggested that users, government, sponsors, and health insurers should finance the intervention. Self-responsibility for being physically active was strongly emphasized by participants.

 

Conclusions: An intervention to stimulate physical activity in hard-to-reach physically disabled people should be individualized, include personal support, and should include marketing to improve image of physical activity of physically disabled people. The intervention that fulfills these requirements should be developed and tested for effects in future research.

Recognizing difference: in/visibility in the everyday life of individuals with facial limb absence

YARON, Gili
MEERSHOEK, Agnes
WIDDERSHOVEN, Guy
SLATMAN, Jenny
2018

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People who lack part(s) of their face have a visibly different appearance both due to their facial difference itself and the medical aids that they use to cover it (e.g. prostheses, bandages). In this article, we draw on interviews with affected individuals in order to investigate how visible difference features in their everyday experience. The visibility of their facial difference, we show, comes into play as they interact with various others in the contexts of their daily life. However, respondents’ visibility manifests in different ways, depending on whether they cover or uncover their facial difference. These different modes of visibility make for distinct ‘visibility experiences’, as participants meet others who notice – or fail to notice – their atypical appearance. By exploring these experiences, our article provides insights into the role of visibility in interviewees’ everyday life, and demonstrates how they actively negotiate their social recognition within encounters with various others.

Cognitive Constraints on the Simple View of Reading: A Longitudinal Study in Children With Intellectual Disabilities

VAN WINGERDEN, Evelien
SEGERS, Eliane
VAN BALKOM, Hans
VERHOEVEN, Ludo
2018

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The present article aimed to explore how the development of reading comprehension is affected when its cognitive basis is compromised. The simple view of reading was adopted as the theoretical framework. The study followed 76 children with mild intellectual disabilities (average IQ = 60.38, age 121 months) across a period of 3 years. The children were assessed for level of reading comprehension (outcome variable) and its precursors decoding and listening comprehension, in addition to linguistic skills (foundational literacy skills, rapid naming, phonological short-term memory, verbal working memory, vocabulary, and grammar) and non- linguistic skills (nonverbal reasoning and temporal processing). Reading comprehension was predicted by decoding and listening comprehension but also by foundational literacy skills and nonverbal reasoning. It is con- cluded that intellectual disabilities can affect the development of reading comprehension indirectly via linguistic skills but also directly via nonlinguis- tic nonverbal reasoning ability.

Association between social factors and performance during Functional Capacity Evaluations: a systematic review

ANSUATEGUI ECHEITA, Jone
VAN HOLLAND, Berry J
GROSS, Douglas P
KOOL, Jan
OESCH, Peter
TRIPPOLINI, Maurizio
RENEMAN, Michiel F
March 2018

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Purpose: Determine the association of different social factors with Functional Capacity Evaluation (FCE) performance in adults.

 

Materials and methods: A systematic literature search was performed in MEDLINE, CINAHL, and PsycINFO electronic databases. Studies were eligible if they studied social factor’s association with the performance of adults undergoing FCE. Studies were assessed on methodological quality and quality of evidence. The review was performed using best-evidence synthesis methods.

 

Results: Thirteen studies were eligible and 11 social factors were studied. Considerable heterogeneity regarding measurements, populations, and methods existed among the studies. High quality of evidence was found for the association of FCE performance with the country of FCE and examiner’s fear behavior; moderate quality of evidence with previous job salary; and low or very low quality of evidence with compensation status, litigation status, type of instruction, time of day (workday), primary or mother language, and ethnicity. Other social factors were not studied.

 

Conclusions: Evidence for associations of various social factors with FCE performance was found, but robust conclusions about the strength of the associations cannot be made. Quality of evidence ranged from high to very low. Further research on social factors, also within a biopsychosocial context, is necessary to provide a better understanding of FCE performance.

National approaches to promote sports and physical activity in adults with disabilities: examples from the Netherlands and Canada

HOEKSTRA, Femke
ROBERTS, Lynn
VAN LINDERT, Caroline
MARTIN GINIS, Kathleen A
VAN DER WOUDE, Lucas H V
MCCOLL, Mary Ann
January 2018

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Purpose: This study described how the Dutch and Canadian governments promote high performance sports, recreational sports, and physical activity (PA) among adults with disabilities on a national level.

 

Methods: An internet-based study was conducted to identify and select relevant documents and websites containing information about the national approach to promote disability sports and physical activities in the Netherlands and Canada.

 

Results: Both governments promote high performance sports in similar ways, but use different strategies to promote recreational sports and physical activities. The Dutch approach is characterized by using time-limited programs focusing on enhancement of sports infrastructure and inter-sector collaboration in which municipalities have key roles. The Canadian government promotes recreational sports in disabled populations by supporting programs via bilateral agreements with provinces and territories. Furthermore, the level of integration of disability sports into mainstream sports differs between countries.

 

Conclusions: The findings of this study may inspire policy makers from different countries to learn from one another’s policies in order to optimize national approaches to promote disability sports and PA on all levels.

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

The patient perspective on the use of information and communication technologies and e-health in rehabilitation

WENTINK, M M
PRIETO, E
DE KLOET, A J
VLIELAND, T P M Vliet
MEESTERS, J J L
2017

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Introduction: Success of e-health relies on the extent to which the related technology, such as the electronic device, is accepted by its users. However, there has been limited research on the patients’ perspective on use of e-health-related technology in rehabilitation care.

 

Objective: To explore the usage of common electronic devices among rehabilitation patients with access to email and investigate their preferences regarding their usage in rehabilitation.

 

Methods: Adult patients who were admitted for inpatient and/or outpatient rehabilitation and were registered with an email address were invited to complete an electronic questionnaire regarding current and preferred use of information and communication technologies in rehabilitation care.

 

Results: 190 out of 714 invited patients completed the questionnaire, 94 (49%) female, mean age 49 years (SD 16). 149 patients (78%) used one or more devices every day, with the most frequently used devices were: PC/laptop (93%), smartphone (57%) and tablet (47%). Patients mostly preferred to use technology for contact with health professionals (mean 3.15, SD 0.79), followed by access to their personal record (mean 3.09, SD 0.78) and scheduling appointments with health professionals (mean 3.07, SD 0.85).

 

Conclusion: Most patients in rehabilitation used one or more devices almost every day and wish to use these devices in rehabilitation.

How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study

LUYTEN, Tom
BRAUN, Susy
JAMIN, Gaston
VAN HOOREN, Susan
DE WITTE, Luc
2017

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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.

Being a refugee in Turkey and western Europe: how it affects mental health and psychosocial wellbeing

JOURNAL OF MENTAL AND PSYCHOSOCIAL SUPPORT IN CONFLICT AFFECTED AREAS
September 2016

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"In this personal reflection, the author is a Syrian refugee who describes his experiences as a psychosocial worker in Syria and with refugees in Turkey and Greece. He highlights how women and children lack safety in the camps. The second section discusses how he became a refugee himself. Due to his experiences in Syria, he now finds himself in a difficult situation in the Netherlands, the county where he applied for asylum and has received a permit, but his ‘cry for help’ remains unheard and unrecognised by the (health) workers in the asylum centre."

Improving a web-based employability intervention for work-disabled employees: results of a pilot economic evaluation

NOBEN, Cindy
EVERS, Silvia
VAN GENABEEK, Joost
NIJHUIS, Frans
DE RIJK, Angelique
2016

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Purpose 

The purpose of this study is to improve web-based employability interventions for employees with work-related health problems for both intervention content and study design by means of a pilot economic evaluation. 

 

Methods 

Uptake rate analysis for the intervention elements, cost effectiveness, cost utility and subgroup analyses were conducted to identify potential content-related intervention improvements. Differences in work ability and quality-adjusted life years and overall contribution of resource items to the total costs were assessed. These were used to guide study design improvements. 

 

Results 

Sixty-three participants were a-select allocated to either the intervention (n = 29) or the control (n = 34) group. Uptake regarding the intervention elements ranged between 3% and 70%. Cost-effectiveness and cost-utility analyses resulted in negative effects although higher total costs. Incremental effects were marginal (work ability −0.51; QALY −0.01).

 

Conclusions 

The web-based tool to enhance employability among work disabled employees requires improvements regarding targeting and intensity; outcome measures selected and collection of cost data. With respect to the studies of disability and rehabilitation, the findings and methods presented in this pilot economic evaluation could guide the assessment of future assistive “e-health” technologies.

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Social participation of diabetes and ex-leprosy patients in the Netherlands and patient preference for combined self-care groups

DE VRIES, Henry JC
DE GROOT, Roos
VAN BRAKEL, Wim H
August 2014

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This study compared the social constraints of diabetic patients and ex-leprosy patients and investigated combined self-care groups for ex-leprosy patients and diabetic patients. The physical complications and social problems in ex-leprosy and diabetic patients with neuropathy are similar. Despite the fact that diabetic patients preferred disease-specific, homogeneous self-care groups, the authors believe that the option of combined groups is a promising strategy. Therefore, further research is warranted into the acceptance and impact of self-care groups as a strategy to reduce social constraints by diseases causing neuropathy 

Frontiers in Medicine, Vol 1

Children’s rights for all!|Implementation of the United Nations Convention on the Rights of the Child for children with intellectual disabilities

SISKA, Jan
LATIMIER, Camille
October 2011

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This publication provides an overview of the situation of children with intellectual disabilities in twenty two European countries, with a particular focus on five areas: protection against abuse, family support and (de-)institutionalisation, health, education, and participation of children. It recommends steps to be taken to remove barriers to their inclusion. The publication is based on a series of country reports that were prepared by national experts

A review of income transfers to disabled and long term sick people in seven case study countries and implications for South Africa

WHITWORTH, Adam
WRIGHT, Gemma
NOBLE, Michael
April 2006

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This resource examines seven international case studies of state income maintenance policies for individuals who are disabled or long-term sick in order to analyze the current debates in South Africa surrounding the Disability Grant. The countries are: India, Mexico, USA, UK, Sweden, Netherlands, and Canada. The purpose is to provide an overview of the various benefits and the nature of social security coverage for disabled people and chronically sick individuals in each country. This work would be useful for anyone with an interest in social protection, public policy and disability

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