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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.

Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Purpose: This study assessed the extent to which visual impairment impacts on vision-related quality of life in Indonesia, by comparing four groups of people: those with 1) normal vision, 2) corrected visual impairment, 3) uncorrected visual impairment, and 4) blindness.

Method: Purposive sampling was used. There were 162 respondents, between 21 and 86 years of age. Participants with normal vision and blindness were community-dwellers in Yogyakarta, Indonesia. Those with corrected and uncorrected visual impairment were recruited from an eye clinic. This cross- sectional study used NEI VFQ-25 to assess vision-related quality of life. The total scores and 11 NEI VFQ-25 subscales scores of four respondent groups were analysed using ANOVA, followed by post-hoc analyses to reveal between group differences.

Results: There was a significant difference in the NEI VFQ-25 total scores among the four respondent groups. Respondents with normal vision had the highest score and those with blindness had the lowest. There were also significant differences among the four groups for the 11 subscales. Post-hoc analyses revealed no significant difference between respondents with normal vision and corrected visual impairment in the total and 9 NEI VFQ-25 subscales. Respondents with uncorrected visual impairment and blindness had significantly lower vision- related quality of life compared to those with normal vision or corrected visual impairment in the total and 5 NEI VFQ-25 subscales, indicating that visual impairment decreases vision-related quality of life.

Conclusion: Visual impairment has a detrimental impact on a person’s vision- related quality of life. The negative impact of visual impairment can be minimised by correction. Failure to correct visual impairment leads to significantly lowervision-related quality of life.

This report presents the findings from a rapid global survey of persons with disabilities and other stakeholders which took place between April and August 2020. The organisations behind the study seek to “catalyse urgent action in the weeks and months to come,” as transmission rates of COVID-19 continue to rise in many countries and persons with disabilities are again subjected to restrictions which have already had severe consequences.

The report analyses over 2,100 responses to the survey from 134 countries around the world. The vast majority of responses were from individuals with disabilities and their family members. Within the questionnaire responses respondents provided more than 3,000 written testimonies documenting the experiences of persons with disabilities and their family members during the pandemic. The qualitative and quantitative data provide in-depth, comprehensive insights into the experiences of persons with disabilities and the consequences of government actions or inactions on the rights of persons with disabilities.

The report is organised around four themes which emerged during the process of analysing responses received to the survey. These themes are:

1. Inadequate measures to protect persons with disabilities in institutions

2. Significant and fatal breakdown of community supports

3. Disproportionate impact on underrepresented groups of persons with disabilities

4. Denial of access to healthcare

A webinar was held to mark the launch of the report

Purpose

The purpose of this study was to clarify whether the novel lateral transfer assist robot facilitates easier transfers compared with a wheelchair in post-stroke hemiparesis patients.

Methods

This cross-sectional study enrolled 20 post-stroke hemiparesis patients, and the task difficulty of transfers was compared between a wheelchair and lateral transfer assist robot. All participants were asked to transfer from either wheelchair or lateral transfer assist robot to a platform table and back. The primary outcome was the transfer score of the Functional Independence Measure. The secondary outcome was the time required for transfer.

Results

The transfer score of the Functional Independence Measure was significantly higher with lateral transfer assist robot than with wheelchair (p < .001). The transfer times from these devices to a platform table and back showed no significant differences (to device from platform table: 7.8 s, lateral transfer assist robot vs 7.6 s, wheelchair, p > .05: device to platform table: 7.1 s, lateral transfer assist robot vs 8.0 s, wheelchair, p > .05).

Conclusions

Transfer with a lateral transfer assist robot is easier than with wheelchair and facilitates independence in post-stroke hemiparesis patients.

The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Introduction: 

Care robots are machines, operating partly or completely autonomously, that are intended to assist older people and their caregivers. Care robots are seen as one part of the solution to the aging population, allowing fewer professional caregivers to provide the necessary assistance and care. Despite the potential benefits, the dissemination of care robots, and welfare technology in general, is limited in Swedish elder care.

Purpose: 

To explore the challenges of introducing welfare technology, particularly care robots, in elder care.

Materials and methods:

 Twenty-one individual interviews with key actors at the societal level, analysed by thematic analysis.

Results: 

The challenges, from the societal actors’ perspectives, were related to; the beliefs in technology, attitudes, ethics, collaboration, and the need for knowledge and skills regarding care robots (individual and group challenges). Challenges of a national character were: national governance, infrastructure, laws and regulations, economics, and procurement (systemic and societal challenges). In addition, the necessary preconditions for successful introduction were revealed as: the utility of the technology, implementation, evaluation and safety, security, and integrity (preconditional challenges).

Conclusions: 

The introduction of care robots in elder care services seems to be more challenging than that of welfare technology in general, given the context and prevailing attitudes and preconceptions about robotics. Significant challenges need to be managed, at all levels of the society, before care robots can become an integral part of daily care and assist older people and their caregivers in activities and rehabilitation.

In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

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.

Purpose: 

To investigate the bilateral postural adaptations as a result of standing on an increasingly unstable sway-referenced support surface with both the intact and prosthetic limb for transtibial prosthesis users (TPUs).

Method: 

TPUs (n = 14) and matched controls (n = 14) stood quietly in multiple foot placement conditions (intact foot, prosthetic foot and both feet) on a sway-referenced support surface which matched surface rotation to the movement of the centre of pressure (CoP). Force and motion data were collected and used to analyse CoP mean position, displacement integral and force components under intact and prosthetic limbs.

Results: 

Significant differences were found between prosthesis users and controls in CoP mean position in anteroposterior (1.5 (95% CI, 1.2–1.8) cm) and mediolateral directions (3.1 (95% CI, 0.5–5.7) cm. CoP displacement integrals were significantly different greater for prosthesis user group in the anteroposterior direction. Force components differences were found in all planes (anteroposterior: 0.6 (95% CI, 0.4–0.8 N); mediolateral: 0.1 (95% CI, 0.0–0.2 N & 0.3 (95% CI, 0.2–0.4) N, inferosuperior: 2.2 (95% CI, 1.4–3.0) N).

Conclusions: 

TPUs have bilateral static and dynamic postural adaptations when standing on a sway-referenced support surface that is different to controls, and between prosthetic and intact sides. Results further support evidence highlighting importance of the intact limb in maintenance of postural control in prosthesis users. Differences indicate clinical treatment should be directed towards improving outcomes on the intact side.