A. Schippers
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View article: Family quality of life and associated factors among people with leprosy or podoconiosis/lymphatic filariasis with visible disabilities and their family members in Ethiopia: a baseline study for a randomized controlled trial
Family quality of life and associated factors among people with leprosy or podoconiosis/lymphatic filariasis with visible disabilities and their family members in Ethiopia: a baseline study for a randomized controlled trial Open
Leprosy, podoconiosis and lymphatic filariasis (LF) cause impairment and disability affecting family quality of life (FQoL). The purpose of this study was to assess and compare FQoL and associated factors in people in Ethiopia with disabil…
View article: Quality of Life as a Paradigm With Multiple Applications in the Field of Intellectual and Developmental Disabilities
Quality of Life as a Paradigm With Multiple Applications in the Field of Intellectual and Developmental Disabilities Open
This paper sets out an argument for conceptualizing quality of life as a useful paradigm in the field of intellectual and developmental disabilities. In doing so, it addresses the core elements of a paradigm as it is generally understood i…
View article: Lived Experiences of Public Disability Representations: A Scoping Review
Lived Experiences of Public Disability Representations: A Scoping Review Open
Research has largely focussed on public perceptions of people with disabilities, particularly in the media. However, there is a lack of studies exploring how individuals with disabilities themselves experience public disability representat…
View article: The Definition Dilemma: How Definitions of Disability Shape Statistics on Social Participation
The Definition Dilemma: How Definitions of Disability Shape Statistics on Social Participation Open
To monitor progress in including persons with disabilities, including in interventions which can improve their health and quality of life, it is crucial to collect data on their participation. However, there are many different ways of defi…
View article: Improving Quality of Life of Families Headed by Parents With Intellectual Disabilities and Their Children by Means of Assistive Social Robotics
Improving Quality of Life of Families Headed by Parents With Intellectual Disabilities and Their Children by Means of Assistive Social Robotics Open
Background Families of parents with intellectual disabilities still face discrimination, stigma and inadequate support, placing them in vulnerable positions. Social assistive robotics offers promising support. This study investigates the p…
View article: Performing Plurality: Meet the Alters Vlogs on YouTube as Breeding Grounds for Epistemic Justice
Performing Plurality: Meet the Alters Vlogs on YouTube as Breeding Grounds for Epistemic Justice Open
Social media platforms have provided people with a psychiatric label the opportunity to build communities and share their stories without relying on the mediation of therapists, publishers, or broadcasters. Among them are people who identi…
View article: Uncharted Territory: Delving into Unexplored Knowledge to Curb Ableism in Academia
Uncharted Territory: Delving into Unexplored Knowledge to Curb Ableism in Academia Open
Introduction Language can reflect bias: an ‘intellectual’ disability means for many people that you cannot be an academic knowledge producer; a ‘learning’ disability means that your education will be hampered. Like language definitions, ac…
View article: Understanding Epistemic Justice through Inclusive Research about Intellectual Disability and Sexuality
Understanding Epistemic Justice through Inclusive Research about Intellectual Disability and Sexuality Open
Formal language: This paper discusses inclusive research and epistemic justice by using an example of a published study the authors conducted on intellectual disability and sexuality in supported living environments. Our study addressed ta…
View article: ‘The Ball of Cooperation Rolls on’: Some Personal Reflections on My Experiences as a Researcher
‘The Ball of Cooperation Rolls on’: Some Personal Reflections on My Experiences as a Researcher Open
People with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author…
View article: Examining People’s Experiences of Working in Collaborative Relationships While Conducting Inclusive Research Involving Persons with Intellectual Disabilities
Examining People’s Experiences of Working in Collaborative Relationships While Conducting Inclusive Research Involving Persons with Intellectual Disabilities Open
This study examined the experiences of working in collaborative relationships while conducting inclusive research involving persons with intellectual disabilities. More specifically, the study explored work relationships, social relationsh…
View article: Integration of a Disability Lens as Prerequisite for Inclusive Higher Education
Integration of a Disability Lens as Prerequisite for Inclusive Higher Education Open
PURPOSE. Occidental higher education often approaches disability as a disparate issue, failing to recognize that it is part of human diversity. Such an approach hinders inclusive education because it overlooks how disability is intertwined…
View article: Expanding the quality of life paradigm: Contributions from the field of disability studies
Expanding the quality of life paradigm: Contributions from the field of disability studies Open
This article considers the contributions from the field of Disability Studies to the conceptualization of Quality of Life (QOL) for people labelled with Intellectual Disability (ID). We suggest four elements from the field of Disability St…
View article: Reasons for collaborating in inclusive research projects: The perspectives of researchers with experiential knowledge, academic researchers and principal investigators
Reasons for collaborating in inclusive research projects: The perspectives of researchers with experiential knowledge, academic researchers and principal investigators Open
Inclusive research—in which people with an intellectual disability both collaborate with researchers and work as researchers themselves—has gained increased attention over the last three decades. Although the foundational principles of con…
View article: The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy or podoconiosis in Northwest Ethiopia
The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy or podoconiosis in Northwest Ethiopia Open
Background The Beach Center Family Quality of Life Scale has been developed and validated in different languages in different countries. However, this scale has not been validated in the Ethiopian Amharic language context. Therefore, this …
View article: Who is disabled? On whether the functional definition of disability targets the same individuals as the subjective definition
Who is disabled? On whether the functional definition of disability targets the same individuals as the subjective definition Open
With the increased attention to disability as a vulnerability criterion in the Sustainable Development Goals, international organizations and NGOs within the international development sector have started to pay explicit attention to person…
View article: The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy and podoconiosis in Northwest, Ethiopia
The cross-cultural validation of the Beach Center Family Quality of Life Scale among persons affected by leprosy and podoconiosis in Northwest, Ethiopia Open
Background The Beach Center Family Quality of Life Scale was developed and validated in different languages in different countries. However, this scale is not yet validated in the Ethiopian Amharic language context. Therefore, this study a…
View article: Siblings of children with intellectual and developmental disabilities: Quality of life perceptions from Catalonia
Siblings of children with intellectual and developmental disabilities: Quality of life perceptions from Catalonia Open
Siblings' interactions and shared experiences influence their perceptions of quality of life. Recently, research about siblings of children with intellectual and developmental disabilities has been significantly expanded but data from Sout…
View article: Layers of Disability Terminology Experiences of People with Disabilities and their Relatives: An Analysis of Dutch Newspapers between 1950–2020
Layers of Disability Terminology Experiences of People with Disabilities and their Relatives: An Analysis of Dutch Newspapers between 1950–2020 Open
Despite the current terminology debate, little is known about the terminology experiences of people with disabilities and their relatives. Therefore, their interviews and letters to editors about disability terminology experiences publishe…
View article: Shifting terminology and confusing representations
Shifting terminology and confusing representations Open
In order to gain a better understanding of the debates surrounding language preferences, the shifts in intellectual disability terminology in Dutch newspapers were analysed. Using quantitative and qualitative content analysis, this study e…
View article: Living with a Rare Disease as a Family: A Co-Constructed Autoethnography from a Mother
Living with a Rare Disease as a Family: A Co-Constructed Autoethnography from a Mother Open
Research into family quality of life (FQoL) is becoming increasingly popular. However, studies into the interrelations between family and individual quality of life (QoL) are still scarce. The aim of this article is to illustrate how havin…
View article: Supporting independently living people with intellectual disabilities: A qualitative study into professional remote support practices
Supporting independently living people with intellectual disabilities: A qualitative study into professional remote support practices Open
Background Professional support for people with intellectual disabilities is increasingly delivered remotely. Understanding what support workers do to support people with intellectual disabilities remotely, and how they do this, is therefo…
View article: ‘It really is quite a different ballgame’. A qualitative study into the work experiences of remote support professionals
‘It really is quite a different ballgame’. A qualitative study into the work experiences of remote support professionals Open
Background Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their …
View article: On the Road Together: Issues Observed in the Process of a Research Duo Working Together in a Long-Term and Intense Collaboration in an Inclusive Research Project
On the Road Together: Issues Observed in the Process of a Research Duo Working Together in a Long-Term and Intense Collaboration in an Inclusive Research Project Open
Inclusive research practices can lead to progress towards an inclusive society. With this study, we aimed to gain insight into dilemmas and catalysing processes within the long-term collaboration of an inclusive research duo: one non-acade…
View article: A Closer Look at the Quest for an Inclusive Research Project: ‘I Had No Experience with Scientific Research, and then the Ball of Cooperation Started Rolling’
A Closer Look at the Quest for an Inclusive Research Project: ‘I Had No Experience with Scientific Research, and then the Ball of Cooperation Started Rolling’ Open
The original adage of the movement of people with disabilities ‘Nothing about us without us’ is fortunately more and more adopted in the research world. There is, for example, increasing recognition of the importance and value of actively …
View article: Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities
Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities Open
In this study, we report on a two-year experience of inclusive participative action and social design research consisting of intensive collaboration between social workers, people with intellectual disabilities and researchers. Action rese…
View article: Family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis versus usual care in Ethiopia: study protocol for a cluster-randomised controlled trial
Family-based intervention for prevention and self-management of disabilities due to leprosy, podoconiosis and lymphatic filariasis versus usual care in Ethiopia: study protocol for a cluster-randomised controlled trial Open
Introduction Leprosy, podoconiosis and lymphatic filariasis (LF) are three skin-related neglected tropical diseases. All three conditions can lead to temporary and permanent impairments. These impairments progressively worsen and are major…
View article: Siblings of people with intellectual and developmental disabilities: a systematic review on their quality of life perceptions in the context of a family
Siblings of people with intellectual and developmental disabilities: a systematic review on their quality of life perceptions in the context of a family Open
Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to fin…
View article: ‘<i>When I need them, I call them and they will be there for me</i>’. Experiences of independently living people with intellectual disabilities with 24/7 available online support
‘<i>When I need them, I call them and they will be there for me</i>’. Experiences of independently living people with intellectual disabilities with 24/7 available online support Open
eHealth applications are increasingly being used in services for people with intellectual disabilities (ID). DigiContact is an online support service that uses videoconferencing techniques to enable people with ID to contact a team of spec…