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Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Recommendations for studies on dynamic arm support devices in people with neuromuscular disorders: a scoping review with expert-based discussion

ESSERS, J M N
MURGIA, A
PETERS, A A
JANSSEN, M M H P
MEIJER, K
2020

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Purpose

Neuromuscular disorders are characterised by muscle weakness that limits upper extremity mobility, but can be alleviated with dynamic arm support devices. Current research highlights the importance and difficulties of evidence-based recommendations for device development. We aim to provide research recommendations primarily concerning upper extremity body functions, and secondarily activity and participation, environmental and personal factors.

 

Methods

Evidence was synthesised from literature, ongoing studies, and expert opinions and tabulated within a framework based on a combination of the International Classification of Functioning, Disability and Health (ICF) model and contextual constructs.

 

Results

Current literature mostly investigated the motor capacity of muscle function, joint mobility, and upper body functionality, and a few studies also addressed the impact on activity and participation. In addition, experts considered knowledge on device utilisation in the daily environment and characterising the beneficiaries better as important. Knowledge gaps showed that ICF model components and contextual constructs should be better integrated and more actively included in future research.

 

Conclusions

It is recommended to, first, integrate multiple ICF model components and contextual constructs within one study design. Second, include the influence of environmental and personal factors when developing and deploying a device. Third, include short-term and long-term measurements to monitor adaptations over time. Finally, include user satisfaction as guidance to evaluate the device effectiveness.

Measure It Super Simple (MISS) activity tracker: (re)design of a user-friendly interface and evaluation of experiences in daily life

UMMELS, Darcy
BRAUN, Susy
STEVENS, An
BEEKMAN, Emmylou
BEURSKENS, Anna
2020

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Purpose

The purposes of this study were, first, to (re)design the user-interface of the activity tracker known as the MOX with the help of input from elderly individuals living independently and, second, to assess the use of and experiences with the adapted Measure It Super Simple (MISS) activity tracker in daily life.

 

Methods

The double diamond method, which was used to (re)design the user-interface, consists of four phases: discover, define, develop, and deliver. As a departure point, this study used a list of general design requirements that facilitate the development of technology for the elderly. Usage and experiences were assessed through interviews after elderly individuals had used the activity tracker for 2 weeks.

 

Results

In co-creation with thirty-five elderly individuals (65 to 89-years-old) the design, feedback system, and application were further developed into a user-friendly interface: the Measure It Super Simple (MISS) activity. Twenty-eight elderly individuals (65 to 78-years-old) reported that they found the MISS activity easy to use, needed limited help when setting the tracker up, and required limited assistance when using it during their daily lives.

 

Conclusions

This study offers a generic structured methodology and a list of design requirements to adapt the interface of an existing activity tracker consistent with the skills and needs of the elderly. The MISS activity seemed to be successfully (re)designed, like the elderly who participated in this pilot study reported that anyone should be able to use it.

Aesthetics and the perceived stigma of assistive technology for visual impairment

DOS SANTOS, Aline Darc Piculo
FERRARI, Ana Lya Moya
MEDOLA, Fausto Orsi
SANDNES, Frode Eika
2020

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Purpose: 

The aim of this study was to identify factors that influence the perceived stigma of two assistive devices for visual impairment, namely the white cane and smart glasses.

 

Method: 

Face-to-face semi-structured interviews with eight European students were conducted to probe their experiences and knowledge related to disability, assistive technology, visual impairment, as well as handheld and wearable devices.

 

Results: 

Close relationships with disabled people seems to have a positive influence on participants perceptions about stigma, disability, and assistive technology. Academic background seems to not have any influence. The aesthetics of assistive devices was observed as an important factor that influences the adoption or abandonment of the device.

 

Conclusion: 

Device without negative symbolism but with modern aesthetics (smart glasses) were positively accepted by the participants than the device with traditional aesthetics and symbolisms of visual impairment (white cane). Designers should, therefore, consider aesthetics in addition to functionality in order to avoid the perceived stigma, thereby reducing the chances of device abandonment.

What is digital accessibility and why is it so important?

Nomensa
May 2020

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This webinar outlines digital accessibility and where to start. It is based on a benchmark report carried out in the Netherlands. It discusses the rational of how easy it for someone with an access needs to use a particular online product. 

Further, looks at the requirements of WCAG 2.1 at level AA. And discusses what does digital accessibility actually mean and how do you know which guidelines you should meet.

 

Alastair Campbell the Director of Accessibility at Nomensa who was jointly responsible for writing the International Accessibility Guidelines (WCAG) guidelines.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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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.

Design of the user interface for “Stappy”, a sensor-feedback system to facilitate walking in people after stroke: a user-centred approach

JIE, Li-Juan
JAMIN, Gaston
SMIT, Kate
BEURSKENS, Anna
BRAUN, Susy
2019

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Introduction: 

Sensor-feedback systems can be used to support people after stroke during independent practice of gait. The main aim of the study was to describe the user-centred approach to (re)design the user interface of the sensor feedback system “Stappy” for people after stroke, and share the deliverables and key observations from this process.

 

Methods: 

The user-centred approach was structured around four phases (the discovery, definition, development and delivery phase) which were fundamental to the design process. Fifteen participants with cognitive and/or physical limitations participated (10 women, 2/3 older than 65). Prototypes were evaluated in multiple test rounds, consisting of 2–7 individual test sessions.

 

Results: 

Seven deliverables were created: a list of design requirements, a personae, a user flow, a low-, medium- and high-fidelity prototype and the character “Stappy”. The first six deliverables were necessary tools to design the user interface, whereas the character was a solution resulting from this design process. Key observations related to “readability and contrast of visual information”, “understanding and remembering information”, “physical limitations” were confirmed by and “empathy” was additionally derived from the design process.

 

Conclusions: 

The study offers a structured methodology resulting in deliverables and key observations, which can be used to (re)design meaningful user interfaces for people after stroke. Additionally, the study provides a technique that may promote “empathy” through the creation of the character Stappy. The description may provide guidance for health care professionals, researchers or designers in future user interface design projects in which existing products are redesigned for people after stroke.

Cultural competence in lifelong care and support for individuals with intellectual disabilities

VAN HERWAARDEN, Aniek
ROMMES, Els W M
PETERS-SCHEFFER, Nienke C
2019

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Objectives: Although an extensive amount of research has been devoted to models defining cultural competence of healthcare professionals in short-term care, there is unclarity about the cultural competencies that professionals providing lifelong care and support should have. The current study aimed to explore which cultural competencies are used by these healthcare professionals, and whether these competencies enabled them to make cultural adaptations to their regular care practices.

 

Design: To investigate cultural competencies and cultural adaptations, semi-structured in-depth interviews were conducted with eight professionals who provide lifelong care and support to individuals with intellectual disabilities. Five cultural competencies were explored: awareness, knowledge, skills, motivation, and encounters.

 

Results: A thematic analysis of the interviews revealed that professionals providing lifelong care and support used all cultural competencies in their care practices. Moreover, our analysis suggested that these competencies could be categorized as either practical or analytical cultural competencies. Although these competencies were conditional in order to make cultural adaptations to care practices, the presence of cultural competencies did not automatically lead to these cultural adaptations. Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

 

Conclusions: All five cultural competencies were used by professionals in lifelong care and support. Our analysis revealed that both practical and analytical cultural competencies were essential in providing culturally sensitive lifelong care and support. We additionally suggest that the cultural competence of professionals is necessary, but not sufficient, for making cultural adaptations to lifelong care and support for individuals with intellectual disabilities. In many cases, other factors also played a role in a professional’s final decision to adapt their care practices.

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.

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.

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)

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

IDRM : regional report of Europe

CENTER FOR INTERNATIONAL REHABILITATION
2007

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This international disability rights monitor takes a snapshot of the situation of disabled people in Europe and the extent to which they are included in society. The report examines education, employment, legislation and other areas. It gives non-governmental organisations, policy makers and individuals an opportunity to research the living conditions of disabled people in this part of the world

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