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“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia

SCHENK, Katie D
TUN, Walter
SHEEHY, Meredith
OKAL, Jerry
KUFFOUR, Emmanuel
MOONO, Grimond
MUTALE, Felix
KYEREMAA, Rita
NGIREABAKUNZI, Edson
AMANYEIWE, Ugochukwu
LECLERC-MADLALA, Suzanne
October 2018

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Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.

 

Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.

 

Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.

 

Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.

 

Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability.

Lost in digitalization? Municipality employment of welfare technologies

FRENNERT, Susanne
2018

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Introduction:

Swedish municipalities face a number of daunting challenges; an aging population, the public’s increased demands and expectations on municipality services, and a strained economy to mention some. Welfare technology, a Scandinavian concept launched to promote digitalization, is seen as one solution to meet these challenges.

 

Objective: 

Despite these promises, few welfare technology applications are offered by local Swedish municipalities and care organizations. Numerous studies have shown that Swedish municipalities have a great interest in welfare technologies.

 

Methods: 

In this article, we draw on empirical research in one Swedish municipality. Through two case studies it is illustrated how technological change and municipality employment of welfare technologies are employed.

 

Results: 

These case studies show how core values of care are being lost in the quest for digitalization due to the lack of organizational skills and knowledge in transforming the relationship of caregiving and care-receiving through the use of digital technology.

 

Conclusions: 

Digitalization and welfare technologies deployed ought to represent and support the core values of caregiving and to receive care. Thus, digital transformation most likely will transform conditions for care receivers and working conditions for care workers. New work processes will evolve, which in turn produce new meanings of home help service work and caregiving.

From individual innovation to global impact: the Global Cooperation on Assistive Technology (GATE) innovation snapshot as a method for sharing and scaling

LAYTON, Natasha
MURPHY, Caitlin
BELL, Diane
2018

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Assistive technology (AT) is an essential facilitator of independence and participation, both for people living with the effects of disability and/or non-communicable disease, as well as people aging with resultant functional decline. The World Health Organization (WHO) recognizes the substantial gap between the need for and provision of AT and is leading change through the Global Cooperation on Assistive Technology (GATE) initiative. Showcasing innovations gathered from 92 global researchers, innovators, users and educators of AT through the WHO GREAT Summit, this article provides an analysis of ideas and actions on a range of dimensions in order to provide a global overview of AT innovation. The accessible method used to capture and showcase this data is presented and critiqued, concluding that “innovation snapshots” are a rapid and concise strategy to capture and showcase AT innovation and to foster global collaboration.

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.

Hard to teach: inclusive pedagogy in social science research methods education

NIND, Melanie
LEWTHWAITE, Sarah
2017

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Amidst major new initiatives in research that are beginning to address the pedagogic dimension of building capacity in social science research methods, this paper makes the first move to apply the lens of inclusive pedagogy to research methods pedagogy. The paper explores the ways in which learning social science research methods is hard and may be anxiety-provoking, which has sometimes led to a deficit discourse in which learners are positioned as ill-prepared and fearful. Learners can then be blamed for being hard to teach when an inclusive pedagogical lens would support a more asset-based discourse. Nonetheless, the authors argue that without traditional deficit-based solutions of the remedial class, special needs label or special teacher within the methods learning environment, methods teachers have developed their own responses. These pedagogic responses, elicited from the authors’ research using methods of expert interviews, focus groups and video-stimulated dialogue, address challenges associated with the learner, the learning material and the teacher’s context. The paper differentiates between practical solution-focused strategies and more holistic approaches. The authors illustrate how methods teachers reach out to diverse learners and they conclude that data and standpoints are used in inclusive teaching to make connections and to support learning.

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.

Educational inclusion and critical neuroscience: friends or foes?

BILLINGTON, Tom
2017

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Momentum is continuing to grow in the circulation of neuroscientific discourse, informing aspects of how we live but affecting too how we think about education and learning. Neurologically informed intrusions into education frequently align with psychology which has until now largely adopted a ‘medical model’, supporting policies and practices which ultimately invoke psychopathology and arguably render individual young people more vulnerable to various forms of social and educational exclusion. This paper urges caution in respect of understandings of educational neuroscience that focus on individual deficits and diagnoses. Rather it holds in mind the broader historical context for neuroscience and its implications for our understandings of what it is to be human in the twenty first century and thereafter for education and learning. Theoretical resources from critical and affective neuroscience but also critical educational psychology are brought together specifically to support the principles of inclusionist policies and practices in education.

Ethical and methodological issues in research with Sami experiencing disability

MELBØE, Line
HANSEN, Ketil Lenert
JOHNSEN, Bjørn-Eirik
FEDREHEIM, Gunn Elin
DINESEN, Tone
Minde, Gunn-Tove
RUSTAD, Marit
2016

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Background. A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature.

 

Objectives. The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these.

 

Methods. The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion. The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability.

 

Conclusion. The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.

Including alternative stories in the mainstream. How transcultural young people in Norway perform creative cultural resistance in and outside of school

DEWILDE, Joke
SKREFSRUD, Thor-André
2016

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The development of an inclusive pedagogy takes on new urgency in Norwegian schools as the student body has become increasingly culturally and linguistically diverse. Traditionally, the Norwegian school has been dominated by homogenising and assimilating discourses, whereas alternative voices have been situated at the margins. In response to this tendency, we present two transcultural students’ autoethnographic stories produced in alternative spaces to the Norwegian mainstream, that is, in a transition class for newly arrived students and on Facebook. Both spaces are perceived as contact zones in the sense that they are culturally and linguistically complex. This article illustrates how the students perform cultural and linguistic resistance towards dominant homogenising discourses as the transition class and Facebook seem to offer opportunities for constructing alternative stories. Moreover, we contend that these alternative stories offer important knowledge for conventional education contexts since they represent stories of competence in contrast to the assumed limitations of these students.

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.

Labeling albinism: language and discourse surrounding people with albinism in Tanzania

BROCCO, Giorgio
2015

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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.

Disability and the League of Nations: the Crippled Child’s Bill of Rights and a call for an International Bureau of Information, 1931

GROCE, Nora
2013

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In Disability Studies the evolution of conceptual models is often portrayed as linear, with a nineteenth-century charity model shifting to the medical model that dominated disability discourse in the twentieth century. This is then assumed to be largely unchallenged until the 1970s, when an emergent Disability Rights Movement re-framed issues into the social model, from which evolved a rights-based model. This paper documents two early efforts to address disability issues submitted to the League of Nations: the Crippled Child’s Bill of Rights in 1931 and a ‘Memorial’ requesting the establishment of an International Bureau of Information on Crippled Children in 1929. Neither submission achieved its stated goals, yet both reflect early attempts to place disability within wider social contexts.

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