The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities

This thesis explores how the expressed health needs of indigenous peoples with disabilities resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The perceptions of indigenous peoples with disabilities are investigated, regarding their access to, and expectations of, health care. Their views are compared to those of health workers, senior bureaucrats and United Nations delegates. A qualitative approach was taken to the research presented in this thesis, framing the research methodology on indigenous enquiry. An exploratory case study approach was taken to compare three jurisdictions: Australia, Mexico and New Zealand. It presents the views of 50 participants including 18 indigenous persons with disabilities, 19 health workers, 10 decision makers and 6 United Nations Delegates. The findings suggest that the health needs of indigenous peoples with disabilities are largely underserved and misunderstood by health departments. Poverty, discrimination and disenfranchisement emerged as being the possible major determinants of the ill health experienced by indigenous peoples with disabilities. This thesis concludes that is necessary to build capacity and rights literacy across indigenous peoples with disabilities, particularly with respect to the CRPD; alongside with a legitimate redistribution of resources and decision-making in response to the expressed health needs of indigenous peoples with disabilities

Assessing the implementation of user-centred design standards on assistive technology for persons with visual impairments : a systematic review

DATA AVAILABILITY STATEMENT : The original contributions presented in the study are included in the article/Supplementary Material, further inquiries can be directed to the corresponding author.Despite scientific and technological advances in the field of assistive technology (AT) for peoplewith visual impairment (VI), technological designs are frequently based on a poor understanding of the physical and social context of use, resulting in devices that are less than optimal for their intended beneficiaries. To resolve this situation, user-centred approaches in the development process of AT have been widely adopted in recent years. However, there is a lack of systematization on the application of this approach. This systematic review registered in PROSPERO (CRD42022307466), assesses the application of the ISO 9241-210 human-centred design principles in allegedly “user-centred designed” AT developments for persons with VI (see Supplementary PROSPERO Protocol). The results point to a wide variation of the depth of understanding of user needs, a poor characterization of the application of the User Centred Design (UCD) approach in the initial design phases or in the early prototyping, and a vague description of user feedback and device iteration. Among the principles set out in ISO 9241-210, the application of 5.6: “the design team includes multidisciplinary skills and perspectives” is the one for which the least evidence is found. The results show there is not enough evidence to fully assess the impact of UCD in (1) promoting innovation regarding AT products and practices, and (2) Judging if AT produced following such standards is leading to better user access, wellbeing outcomes and satisfaction. To address this gap it is necessary to, first, generate better implementation of UCD in AT development and second, to strengthen evidence regarding the implementation and outcomes of using UCD for AT. To better engage with the realities of persons with VI, we propose capacity building across development teams regarding UCD, its principles and components; better planning for UCD implementation; and cross-fertilization across engineering disciplines and social and clinical science.The Ambizione grant funded by the Swiss National Science Foundation and the Fondation Gelbert .https://www.frontiersin.org/journals/rehabilitation-sciencesam2024Centre for Human RightsSDG-03:Good heatlh and well-bein

Concepts and definitions of healthy ageing: a systematic review and synthesis of theoretical models.

BACKGROUND Healthy ageing (HA) has been defined using multiple approaches. We aim to produce a comprehensive overview and analysis of the theoretical models underpinning this concept and its associated normative terms and definitions. METHODS We conducted a systematic review of peer-reviewed HA models in Embase.com, Medline (Ovid), Cochrane CENTRAL, CINAHL, PsycINFO, and Web of Science until August 2022. Original theoretical papers, concept analyses, and reviews that proposed new models were included. Operational models/definitions, development psychology theories and mechanisms of ageing were excluded. We followed an iterative approach to extract the models' characteristics and thematically analyze them based on the approach of Walker and Avant. The protocol was registered in PROSPERO (CRD42021238796). FINDINGS Out of 10,741 records, we included 59 papers comprising 65 models/definitions, published in English (1960-2022) from 16 countries in Europe, Asia, and America. Human ageing was described using 12 normative terms, mainly (models (%)): successful (34 (52%)), healthy (eight (12%)), well (five (8%)), and active (four (6%)). We identified intrinsic/extrinsic factors interacting throughout the life course, adaptive processes as attributes, and outcomes describing ageing patterns across objective and subjective dimensions (number of models/definitions): cognitive (62), psychological (53), physical (49), social (49), environmental (19), spiritual (16), economic (13), cultural (eight), political (six), and demographic (four) dimensions. Three types of models emerged: health-state outcomes (three), adaptations across the life course (31), or a combination of both (31). Two additional sub-classifications emphasized person-environment congruence and health promotion. INTERPRETATION HA conceptualizations highlight its multidimensionality and complexity that renders a monistic model/definition challenging. It has become evident that life long person-environment interactions, adaptations, environments, and health promotion/empowerment are essential for HA. Our model classification provides a basis for harmonizing terms and dimensions that can guide research and comparisons of empirical findings, and inform social and health policies enabling HA for various populations and contexts. FUNDING MM, ZMRD, and OI are supported by the European Union's Horizon 2020 Marie Skłodowska-Curie grant No 801076, and MM is also supported by the Swiss National Foundation grant No 189235

Assessing the implementation of user-centred design standards on assistive technology for persons with visual impairments: a systematic review

Despite scientific and technological advances in the field of assistive technology (AT) for people with visual impairment (VI), technological designs are frequently based on a poor understanding of the physical and social context of use, resulting in devices that are less than optimal for their intended beneficiaries. To resolve this situation, user-centred approaches in the development process of AT have been widely adopted in recent years. However, there is a lack of systematization on the application of this approach. This systematic review registered in PROSPERO (CRD42022307466), assesses the application of the ISO 9241-210 human-centred design principles in allegedly “user-centred designed” AT developments for persons with VI (see Supplementary PROSPERO Protocol). The results point to a wide variation of the depth of understanding of user needs, a poor characterization of the application of the User Centred Design (UCD) approach in the initial design phases or in the early prototyping, and a vague description of user feedback and device iteration. Among the principles set out in ISO 9241-210, the application of 5.6: “the design team includes multidisciplinary skills and perspectives” is the one for which the least evidence is found. The results show there is not enough evidence to fully assess the impact of UCD in (1) promoting innovation regarding AT products and practices, and (2) Judging if AT produced following such standards is leading to better user access, wellbeing outcomes and satisfaction. To address this gap it is necessary to, first, generate better implementation of UCD in AT development and second, to strengthen evidence regarding the implementation and outcomes of using UCD for AT. To better engage with the realities of persons with VI, we propose capacity building across development teams regarding UCD, its principles and components; better planning for UCD implementation; and cross-fertilization across engineering disciplines and social and clinical science.Systematic Review Registrationhttps://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=307466 PROSPERO (CRD42022307466)

Ethics review of big data research: what should stay and what should be reformed?

Background Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. Main text In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. Conclusions We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large

Indigenous Persons with Disabilities: Access to Training and Employment

His paper is intended to contribute to the call originating from the World Conference on Indigenous Peoples (United Nations General Assembly, 2014) outcome document by providing a first overview of the available data regarding access to employment for indigenous women and men with disabilities The paper concentrates on the following objectives: - examining international experiences in the vocational training and employment of indigenous persons with disabilities, - highlighting examples of good practice and successful outcomes, as well as examples of initiatives that have not worked well; - discussing ways in which skills training and preparation for work contribute to the successful employment of indigenous persons with disabilities, looking at training and active labour market programmes targeting indigenous peoples, and whether these are disability-inclusive; - describing and commenting on the policy frameworks that seem most conducive to promoting training and employment opportunities for this group; and, - examining issues relating to land property rights and how these impact on livelihood

The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand

This paper explores how the expressed health needs of Indigenous peoples with disabilities resonate with the mandate of Article 25 ‘Health’ of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The perceptions of indigenous peoples with disabilities are investigated, regarding their access to, and expectations of, health care. Their views are compared to those of health workers, senior bureaucrats and United Nations delegates. An exploratory case study approach was taken to compare three jurisdictions: Australia, Mexico and New Zealand. The data collection techniques used involved semi-structured interviews, focus groups and field notes. The findings suggest that the health needs of indigenous peoples with disabilities are largely underserved and misunderstood by health departments. Specialised and preventive health care for those with disabilities was found to be particularly problematic. Poverty, discrimination and disenfranchisement emerged as being the possible major determinants of the ill health experienced by indigenous peoples with disabilities. The findings and conclusions outlined in this paper advocate the need to build capacity and rights literacy for indigenous peoples with disabilities,particularly with respect to the CRPD, in order to enhance its impact on the health of indigenous people. A legitimate redistribution of resources and decision-making in response to the expressed health needs of indigenous peoples with disabilities is needed if the vision of the CPRD is to be realised in relation to Article 25

Addressing Double Layers of Discrimination as Barriers to Health Care: Indigenous Peoples with Disabilities

Multiple or aggravated forms of discrimination have not been properly dealt with in health systems. This article reports on the findings of three case studies conducted in Australia, Mexico, and New Zealand that look at the experiences of Indigenous persons with disabilities accessing health care. The findings show that health systems in these three countries have not sufficiently addressed barriers to health care arising from aggravated forms of discrimination, such as the intersection between disability and indigeneity. Findings reveal also how both interpersonal and systematic discrimination emerged from protocols and procedures that often had no discriminatory intent but had a disproportionately negative impact on populations such as Indigenous persons with disabilities. The article also offers recommendations on how to improve awareness and cultural competency to tackle discriminatory practices in order to improve health access and effective adherence of Indigenous peoples in health care settings

Indigenous Perspectives of Disability

This article contributes to the discourse on disability from an indigenous perspective, an area which has not been investigated in any detail. It explores the perceptions of disability and lived experiences of 18 indigenous individuals with impairments from Australia, Mexico and New Zealand. The findings from this research suggest that participants from these countries share some common standpoints, particularly in relation to their disassociation from Western disability discourses and their common experiences of social oppression. This paper calls for further reflection about on-going colonisation and an in-depth analysis of the lack of attention given to this issue within the main models of disability