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Disabilities, Volume 1, Issue 2 (June 2021) – 4 articles

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16 pages, 532 KiB  
Article
Co-Design of Social Impact Domains with the Huntington’s Disease Community
by Natasha Layton, Natasha Brusco, Tammy Gardner and Libby Callaway
Disabilities 2021, 1(2), 116-131; https://doi.org/10.3390/disabilities1020010 - 17 May 2021
Viewed by 2824
Abstract
Background: For people living with or affected by Huntington’s Disease (HD) to experience a good quality of life, tailored support is required to meet physical, cognitive-behavioral, psychological, and social support needs. Substantial service and knowledge gaps regarding HD exist across support providers and [...] Read more.
Background: For people living with or affected by Huntington’s Disease (HD) to experience a good quality of life, tailored support is required to meet physical, cognitive-behavioral, psychological, and social support needs. Substantial service and knowledge gaps regarding HD exist across support providers and service systems. Measuring unmet needs and what quality of life looks like is a fundamental step required to determine the social impact of service investment and provision. The objectives of this study were to validate and map a draft set of HD Social Impact Domains (HD-SID) against existing national and international outcome frameworks; and evaluate and finalize the HD-SID set using a co-design approach with people with lived experience of, and expertise in, HD. Methods: This research used a qualitative co-design process, with 39 participants across four stakeholder groups (people who were HD gene-positive, gene-negative family members, academics, peak organizations, and service providers) to: (i) map and verify the social life areas impacted by HD; (ii) undertake a rigorous three-phased, qualitative process to critically evaluate the draft HD-SID; and (iii) seek feedback on and endorsement of the HD-SID through this co-design process, with a final set of HD-SID identified. Results: Endorsed HD-SID comprised risks and safety (including housing stability, and economic sustainability) and social inclusion (including health and symptom management, physical wellbeing, emotional wellbeing, and building resilient relationships). Conclusions: Effective measurement of the impacts and outcomes for people with HD is informed by both extant measures and an understanding of the specific population needs. This qualitative co-design research demonstrates that HD-SID resonate with the HD community. Full article
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18 pages, 5961 KiB  
Article
Estimated Effects of Web-Based Course from Adult Vocational Students’ Perspective—A PFA Course in Scandinavian Intellectual Disability Practice
by Sylvia Olsson and Christine Gustafsson
Disabilities 2021, 1(2), 98-115; https://0-doi-org.brum.beds.ac.uk/10.3390/disabilities1020009 - 23 Apr 2021
Cited by 1 | Viewed by 2112
Abstract
In Scandinavia, the field of intellectual disability (ID) practice lacks specific course, professional training, theoretical foundation, guidelines, and practice consensus. However, Pedagogiskt Förhållnings-och Arbetsätt (PFA model) has the potential to offer a pedagogical attitude and a way of working within ID practice. PFA [...] Read more.
In Scandinavia, the field of intellectual disability (ID) practice lacks specific course, professional training, theoretical foundation, guidelines, and practice consensus. However, Pedagogiskt Förhållnings-och Arbetsätt (PFA model) has the potential to offer a pedagogical attitude and a way of working within ID practice. PFA was developed in the context of Swedish ID practice and has attracted national and European interest. Most staff working in ID practice in Scandinavia are educated to upper secondary school (adolescent students) level or vocational course (adult students) level. In the present pilot study, we examined the effects of providing a web-based PFA course as a complement to the Swedish national curriculum. The aim of this pilot study was to assess the effects of self-assessed knowledge and learning using a web-based PFA course intervention on an adult vocational course. The study involved a quantitative intervention approach involving two equivalent groups in an experimental design: an experimental group (n = 12) and a comparison group (n = 46). These groups were administered a pre-test and a post-test questionnaire that estimated their knowledge of the course through self-reporting tests. The findings provide empirical evidence of the informed and sustained use of knowledge building through complementary web-based PFA courses. Full article
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9 pages, 229 KiB  
Article
A National Survey of the Social and Emotional Differences Reported by Adults with Disability in Ireland Compared to the General Population
by Roy McConkey
Disabilities 2021, 1(2), 89-97; https://0-doi-org.brum.beds.ac.uk/10.3390/disabilities1020008 - 07 Apr 2021
Cited by 1 | Viewed by 2409
Abstract
The disadvantages experienced by adult persons with disabilities are well documented. However, limited evidence is available on the extent of differences in comparison with the non-disabled population. In this study, selected indicators of social status and mental wellbeing derived from past research, were [...] Read more.
The disadvantages experienced by adult persons with disabilities are well documented. However, limited evidence is available on the extent of differences in comparison with the non-disabled population. In this study, selected indicators of social status and mental wellbeing derived from past research, were used with national samples of adult persons in Ireland with a disability (n = 440) and without a disability (n = 880) recruited through household quota sampling. In addition, comparisons were drawn with equivalent data derived from a contemporaneous national census. Although many of the differences were statistically significant, the effect sizes were mostly medium to low. Moreover, when the inter-relationships among the various indicators was taken into account using Discriminant Analysis, persons with disabilities were less likely to be employed; they reported lower levels of social engagement and had poorer emotional wellbeing. They were also older, more likely to be single and have no children. The study illustrates the potential of using comparative data to monitor the impact of national actions taken to reduce the inequalities experienced by persons with disability as well as highlighting the arenas into which professional supports need to be focused. Full article
18 pages, 301 KiB  
Article
Hard of Hearing Adults’ Interpersonal Interactions and Relationships in Daily Life
by Sylvia Olsson, Munir Dag and Christian Kullberg
Disabilities 2021, 1(2), 71-88; https://0-doi-org.brum.beds.ac.uk/10.3390/disabilities1020007 - 04 Apr 2021
Cited by 3 | Viewed by 3455
Abstract
Globally, there is limited research on how deaf and hard of hearing adults experience higher education and work. The purpose of the present study is to examine hard of hearing (HH) adults’ experiences of social interactions and social relationships in higher education, the [...] Read more.
Globally, there is limited research on how deaf and hard of hearing adults experience higher education and work. The purpose of the present study is to examine hard of hearing (HH) adults’ experiences of social interactions and social relationships in higher education, the workplace and leisure time. Data were obtained from semistructured interviews with 16 individuals (aged 24–31 years) from diverse cultural backgrounds (10 males and 6 females) with severe-to-profound hearing loss. Participants were selected based on previous expressed interest in participating in further studies after having been involved in an earlier study. The interviews were subjected to a qualitative thematic data analysis. According to the results, people with a hearing loss experience communication barrier in higher education, at work and in leisure time. These communication barriers lead to difficulties achieving social inclusion, and in some circumstances to social exclusion. Assistive technology (AT) and information and communication technologies (ICT) were important facilitators of moving from social exclusion towards social inclusion. Full article
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