Disability Research Research Articles

'I am more than just my label': Rights, fights, validation and negotiation. Exploring theoretical debates on childhood disability with disabled young people.

Through the creation of safe spaces in which to explore and challenge dominant negative views of disabled children and young people, this co-written paper presents unique insight into the meaning and impact upon disabled young people's lives of medical lenses and deficit models of disability. Bodies of work and dominant debates in medical sociology, disability studies and childhood studies have so far largely overlooked the experiences and positioning of disabled children and young people and have rarely involved them in the development or discussion of theory. Drawing on empirical data, and through a series of creative, reflective workshops with a UK-based disabled young researchers' collective (RIP:STARS), this paper discusses areas of theoretical importance identified by the disabled young researcher collective-the validation of their lives, negotiation of their identity and acceptance in society. The implications, and possibilities, of platforming disabled children and young people's voices in theoretical debates are deliberated and are achieved through the yielding of privileged academic voice and the development of a symbiotic, genuine partnership which resonates with disabled young people and recognises them as experts in their own lives.

Resilience in the face of adversity: How people with intellectual disabilities deal with challenging times.

In people with intellectual disabilities research and policy are often still focused on risks or the prevention of risks. Research on the process of resilience is in its infancy in the care for people with intellectual disabilities. In the current study, applying a guided photovoice procedure, people with intellectual disabilities were asked what helped them to deal with adverse events. Additionally, informants from their social network were asked to reflect on this question. The following sources of resilience were identified: acceptance, autonomy, beautiful memories, perseverance, physical wellbeing, positive emotions, social skills, spirituality, activities, a home and the social network. Our findings provide practical guidelines for clinicians to talk about resilience with people with intellectual disabilities. Suggestions for future research are made that will contribute to the process of resilience and inclusion of people with intellectual disabilities.

Inclusive tourism: the experiences and expectations of Indonesian wheelchair tourists in nature tourism

ABSTRACT This study sought to understand the travel experiences and expectations of wheelchair tourists. The increasing demand for wheelchair tourists to visit natural destinations, the barriers while travelling, and the inclusivity of tourism are the main motivations of this study. While previous studies have investigated accessibility in tourism, they have rarely focused on inclusive tourism, especially from wheelchair tourists’ perspective. Driven by social constructivism theory, this research presents the results of the experiences of Indonesian wheelchair tourists in natural destinations by utilising the exclusion-inclusion and critical theory. In this emancipatory disability research, snowball sampling was employed to conduct semi-structured interviews with ten wheelchair users, and the empirical materials were thematically analysed. The findings revealed that participants were excited about travelling, but the barriers made wheelchair tourists more selective in choosing natural destinations. Inclusivity was perceived to be an issue that required the achievement of a cultural shift. While accessibility was deemed necessary, service and concern from tourism providers and other tourists were crucial at the lower experience level during travel. A ‘friend in tourism’ was reported as necessary to push toward inclusivity and equality in the tourism industry to ensure a better future.

Who is “Us” in “Nothing About Us Without US”? Rethinking the Politics of Disability Research.

No abstract available.

Enhancing behavioral health competencies for senior center staff through workforce development and training

ABSTRACT Increases in the numbers of older adults with mental health and substance use concerns compel us to identify best practices in training to address these issues. Senior Centers are an ideal location for behavioral health education programs as they are the go-to place for many older adults. This paper describes an online certificate program in Behavioral Health and Aging offered by the Center for Aging and Disability Education and Research at Boston University School of Social Work in collaboration with the National Council on Aging to increase senior center staff knowledge and skills. A total of 228 senior center staff in Illinois, Florida, and Wisconsin completed the online certificate program. There were statistically significant changes in key competencies for all courses based on pre-post assessment. We held key informant interviews to assess the impact of training and participants stated that their knowledge, skills, and behaviors were influenced by the program.

Technology is Part of My Body: Experiences of Disabled People Using Technology

Technology is Part of My Body: Experiences of Disabled People Using Technology

New Narratives of Madness in Popular US Television

Abstract This article examines a 2010s wave of US primetime television shows centered around the experiences of mad or distressed characters. Drawing upon research in critical disability and mad studies, the article identifies positive trends in US media surrounding mental disability, distress, and medication. Although the portrayals of madness in the shows discussed are complex and not without issue, this article argues that these series make space for alternative narratives of madness in popular culture that do not rely wholly on stereotypes of crime, genius, or violence.

0629 Correlates of sleep quality among individuals with chronic pain after moderate to severe traumatic brain injury

Abstract Introduction Sleep disturbance and chronic pain are very common after moderate to severe traumatic brain injury (msTBI). Despite having a bidirectional and mutually exacerbating relationship, there is a dearth of literature examining factors involved in the sleep-pain relationship following msTBI. Psychiatric symptoms (e.g., post-traumatic stress, depression) are also prevalent following injury and know to be related to sleep, as well as poor adjustment to chronic pain. The purpose of this study was to examine associations between sleep, psychiatric symptoms, and pain-beliefs among msTBI survivors who have comorbid chronic pain. Methods This is a secondary analysis of TBI Model Systems study data of 1,567 individuals reporting chronic pain after msTBI (M=8.5 years, SD=7.1). Participants were 46.8 years old on average (SD=27.9), predominantly male (72.7%) and completed measures of sleep (Pittsburgh Sleep Quality Index; PSQI), post-traumatic stress disorder (PTSD Checklist; PCL-5), depression (Patient Health Questionnaire; PHQ-9), anxiety (General Anxiety Disorder; GAD-7), pain-related catastrophizing (Coping Strategies Questionnaire; CSQ) and self-efficacy (Pain Self-Efficacy Questionnaire; PSEQ-2). Measures were adjusted for overlapping constructs. Relationships between sleep, psychiatric symptoms and pain beliefs were examined through Pearson correlations. Results Average PSQI total score for our sample was 8.78 (SD=4.4), indicating poor sleep quality, with an estimated 6.40 (SD=1.9) hours of sleep on average. Over two-third (68.5%) of our sample attributed some of their sleep disturbance to chronic pain and nearly half (47.4%) met cutoff (>8) for clinically significant poor sleep quality. PSQI scores were positively correlated with PCL (r = .44, p <.0001), PHQ-9 (r = .12, p <.0001), GAD-7 (r = .08, p <.01), CSQ (r = .34, p <.0001) and negatively correlated with PSEQ-2 (r = -0.23, p <.0001). Conclusion Poorer sleep quality in individuals with chronic pain after msTBI is associated with more psychiatric symptoms, increased pain-related catastrophizing, and lower pain self-efficacy. Results highlight sleep quality as an important modifiable target for intervention in this at-risk clinical population and suggest that behavioral treatments to improve psychiatric comorbidities and adjustment to pain may be beneficial. Support (if any) National Institute on Disability, Independent Living, and Rehabilitation Research (NCT03033901).

A Proposition for Cultural Praxis in Critical Disability Studies: A Methodological Design for Inclusive Research

ABSTRACT There have been increasing calls within critical disability studies to move beyond ethnocentric Global North/Western interpretive lenses, especially when doing work in countries that have historically been oppressed by such cultures. These lenses rarely embrace the unique cultural nuances and social structures of different communities such that meaningful social justice is not possible. In this paper, we propose that cultural praxis (based on the work of Paulo Freire) could be a necessary paradigmatic shift toward amplifying disability research beyond ethnocentrism and toward culturally reflexive and relevant study. We show how we developed this methodological process through conceptual representations of our evolved thought, author reflections, and theoretical groundings. We invite dialogue from colleagues invested in socially-just research, and hope this approach begins further conversations and methods for doing meaningful, culturally specific work to achieve cultural praxis in physical education and wider realms of critical disability studies.

Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities

In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though their well-being may be affected by the pervasive support needs they need to manage. In turn, sufficient well-being of the family is necessary to guarantee adequate support and thus well-being for the person with PIMD. The purpose of this study was to examine the well-being of families with a child with PIMD, including possible differences between parents and siblings, and how individual and familial factors are related to FQOL. A total of 82 participants from 44 families with a child with PIMD in the Netherlands participated. Multilevel models were employed to analyze FQOL scores and which factors significantly affected scores. Families scored moderately high on both total score and subscales, scoring lowest on emotional well-being. There were significant differences between parents and siblings and a significant effect of age of the respondent on emotional well-being, material well-being, and disability-related support. Siblings scored higher than parents, and scores decreased with age on these domains. Although families with a child with PIMD scored, on average, satisfactory on their FQOL, they were least satisfied with the support for their emotional well-being, and may therefore require additional support for this aspect of their family life. Results of this study contribute to understanding the lives of families with a child with PIMD and their support needs.

Neonatal Seizures and Neurodevelopmental Outcome

Background: Neonatal period is the most vulnerable time for the occurrence of seizures. There are various etiological factors of neonatal seizures and increasing evidence suggests that neonatal seizures are associated with adverse neurodevelopment outcomes. The aim of the study is to determine of causes of neonatal seizures with outcome during management and long-term post-natal outcome. Methods: This prospective study conducted in Rangpur Mother and Children Hospital from 1st July to 2017 to 30th June 2022. Term newborn babies admitted in NICU with convulsion were the samples. A prepared and pretested “Protocol” containing Part-A and Part-B was used - Part-A in neonatal intensive care unit and Part-B in the attached Disability Research Center. Bangladesh J Medicine 2023; Vol. 34, No. 2(1) Supplement: 200-201

Preliminary data from effects of knowledge translation methods on VR counselors providing pre-ETS to youth with significant disabilities: A brief report

BACKGROUND: Passage of the Workforce Innovation and Opportunity Act (WIOA) of 2014 placed an emphasis on increasing student education and preparation for employment for students as young as 14. When Virginia Commonwealth University (VCU) was awarded a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to establish a Rehabilitation and Research Training Center (RRTC) on employment for transition-age youth with disabilities, one of the studies focused on knowledge translation methods to develop and deliver a toolkit to assist VR counselors (and others) providing pre-employment transition services (Pre-ETS) to students 14 to 16 years of age with significant disabilities. OBJECTIVE: The purpose of this practice brief is to share preliminary findings from Phase 1 and Phase 2 of VCU-RRTC on Employment of Transition-Age Youth with Disabilities’ study, Effects of Knowledge Translation Methods on Vocational Rehabilitation Counselors Providing Pre-ETS to Youth with Significant Disabilities 14–16 years of age. METHOD: To prepare this practice brief, program staff conducted a thematic analysis of interview findings from Phase 1 and reviewed program materials from Phase 2 to identify preliminary observations. Program materials included instructor case notes, student reports, student pre- and post-tests, interviews with families, vocational rehabilitation counselors, and school staff after instruction. RESULTS: From Phase 1, VR counselors, educators, and families desired early exposure to career exploration and felt that interest-driven experiences and education was generally lacking. From Phase 2, it was observed that lesson content needed to be relevant and engaging to younger students, who often had a very abstract understanding of work and limited self-awareness about career interests, personal interests, and strengths. CONCLUSION: Preliminary findings from Phase 1 and Phase 2 of the study underscore the desire and need to increase collaboration between educators, vocational rehabilitation counselors, and families. Observations from Phase 2 demonstrate the value of Pre-ETS instruction to younger students with significant disabilities, and how increased collaboration can prepare students for employment through early career exploration, workplace readiness skills, and community based work experiences.

Adventures in Naming EBD Realities: How Words Matter for Special Education

General labels tend to obscure objective realities upon which disability rights are based and can deny individuals with disabilities their educational and civil rights. Undoubtedly, stigma can come from labels unnecessarily categorizing people into separate groups. However, stigma does not reside primarily in disability categories/terms but in what people think of words’ referents. The replacement of the old disability categories/terms with new ones is a case of what is called the “euphemism treadmill,” showing how concepts and mentally represented realities, not words, are the key issue. However, in the case of disabilities, scientific names are unavoidable for the purposes of research, education, advocacy, and social welfare. Some people try to avoid naming special education and its derivatives just as they do in the case of disability categories. We argue that scientifically validated disability and special education labels are necessary and legitimate classifications required for progress in disability research and practice. They provide the most direct route to legally protecting and serving individuals with educational disabilities.

64 Worse Itch and Fatigue in Racial and Ethnic Minorities: A Burn Model System Cross-sectional Study

Abstract Introduction Racial and ethnic minority patients may experience worse hypertrophic scar after burn injury than Non-Hispanic, White patients. Consequently, they may encounter differences in scar-related recovery domains including itch and fatigue. We examined disparities in post-burn injury itch and fatigue in minority patients to better inform counseling and treatment considerations. Methods From the multicenter National Institute of Disability, Independent Living and Rehabilitation Research Burn Model System Database (2015-2019), we analyzed outcomes at three time-points (discharge from index hospitalization, 6- and 12-months post-injury) using the 5-D Itch and PROMIS-29 Fatigue measures. Multi-level linear mixed effects regression modeling analyzed associations between race/ethnicities and outcomes over time. Results Of 893 total patients, 149 (17%) patients were Hispanic/Latino, 603 (68%) Non-Hispanic, White, and 86 (10%) Black. Minority patients reported higher/worse itch scores at all time points compared to Non-Hispanic, White patients. Itch scores were significantly higher for Black patients at 6 months (β=1.42, p=0.03) and 12 months (β=3.36, p< 0.0001) when compared to Non-Hispanic, White patients. Black patients reported higher fatigue scores than Non-Hispanic, White patients at all time points. Fatigue scores were significantly higher for Hispanic/Latino patients at discharge (β=6.17, p< 0.0001), 6 months (β=4.49, p=0.0003), and 12 months (β=6.27, p< 0.0001) than Non-Hispanic, White patients. Conclusions This study supports investigation of potential factors leading to increased itch and fatigue such as genomic scar differences, relative treatment effects (e.g., medications, cognitive processing therapy), and psychosocial impacts of these symptoms. Applicability of Research to Practice In the short-term, minority patients may benefit from additional counseling and focused treatments addressing itch and fatigue after burn injury.

Behavioural sleep problems in children and adults with intellectual disabilities: An integrative literature review.

People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well-being. An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015. Within intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability. A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep.

Disability research must be a priority for nurses to advance health equity

Disability results from an interplay between health conditions and environmental and personal factors. People with disabilities face substantial and ongoing health inequities; however, research to mitigate these inequalities is lacking. There is an urgent need for a better understanding of the multilevel factors that influence health outcomes in people with visible and invisible disabilities across all the lenses of the National Institute of Nursing Research strategic plan. Disability research must be a priority of nurses and the National Institute of Nursing Research to advance health equity for all.

MiR-19a-3p and miR-19b-3p promote microglia activation associated with neuroinflammation following spinal cord injury

Abstract Spinal cord injury (SCI)-induced neuropathic pain represents a significant clinical challenge that affects 10 to 30% of injured persons. Following SCI, microglia activation promotes neuroinflammation through the production of pro-inflammatory cytokines which has been suggested to play a role in neuropathic pain. MicroRNAs (miRs) can be molecular mediators of neuroinflammation. Our group has shown elevated levels of circulating miR-19a and miR-19b in persons living with chronic pain following SCI. We wanted to determine whether miR-19a and miR-19b are involved in neuroinflammation mediated by activated microglia after SCI. Microglia were incubated with inflammatory stimuli in the presence of miR-19a or miR-19b mimics and analyzed for activation. Microglia activation was enhanced in the presence of miR-19a or miR-19b mimics with increased expression of pro-inflammatory cytokines and decreased expression of suppressor of cytokine signaling, SOCS1 and SOCS3. Further, our results show enhanced signaling via NF-kB and Jak pathways. Overall, our results showed that treatment of microglia with miR-19a or miR-19b inhibited SOCS1 and SOCS3 expression and promoted expression of pro-inflammatory cytokines resulting in enhanced microglia activation. These results suggest that increased expression of miR-19a and miR-19b after SCI may be promoting neuroinflammation through activation of the microglia which contributes to neuropathic pain. These results may be useful in developing therapies targeting miRNAs to control neuroinflammation and neuropathic pain in persons living with SCI. This study was supported by the Department of Defense (W81XWH-10-1-1043), National Institutes of Health (R01AR064793) and The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR, 90SI5015-01-00)

Corrigendum to Child Skills and Teacher Qualifications: Associations with Elementary Classroom Teachers’ Reading Instruction for Struggling Readers

Learning Disabilities Research & PracticeEarly View CORRIGENDUM Corrigendum to Child Skills and Teacher Qualifications: Associations with Elementary Classroom Teachers’ Reading Instruction for Struggling Readers First published: 26 May 2023 https://doi.org/10.1111/ldrp.12309Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL No abstract is available for this article. Early ViewOnline Version of Record before inclusion in an issue RelatedInformation

Corrigendum to Home Literacy Environments and Foundational Literacy Skills for Struggling and Nonstruggling Readers in Rural Early Elementary Schools

Learning Disabilities Research & PracticeEarly View CORRIGENDUM Corrigendum to Home Literacy Environments and Foundational Literacy Skills for Struggling and Nonstruggling Readers in Rural Early Elementary Schools First published: 29 May 2023 https://doi.org/10.1111/ldrp.12310Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL No abstract is available for this article. Early ViewOnline Version of Record before inclusion in an issue RelatedInformation

Issue Information (Aims and Scope, Subscription and copyright info, TOC and Editorial Board)

Learning Disabilities Research & PracticeVolume 38, Issue 2 p. 81-84 Issue InformationFree Access Issue Information (Aims and Scope, Subscription and copyright info, TOC and Editorial Board) First published: 31 May 2023 https://doi.org/10.1111/ldrp.12282AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Volume38, Issue2May 2023Pages 81-84 RelatedInformation