UNITING DISABILITY BIOETHICS AND PARTICIPATORY RESEARCH TO ETHICALLY ELUCIDATE PSYCHIATRIC CONDITIONS IN PERSONS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Community based participatory research
Intellectual developmental disabilities
Participatory action research
Permanent link to this recordhttp://hdl.handle.net/20.500.12613/8476
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AbstractBACKGROUND/RATIONALE: Persons with intellectual and developmental disabilities (pIDD) face barriers to quality health care, including psychiatric care, that result in worse health outcomes. While the mental healthcare community is increasing attention towards the psychiatric needs of pIDD, there continues to be a deficit of knowledge regarding psychiatric conditions, including suicidality. Engaging in community-based participatory research (PAR) with pIDD is the ethical way to address these deficits. An academic researcher (AR) must first educate herself on lessons from disability rights activism and disability bioethics. OBJECTIVE: Apply the intertwining history and principles of disability rights movements and disability bioethics to lessons learned from previous PAR with pIDD in order to propose a PAR project that aims to alleviate knowledge deficits regarding suicidality in pIDD. METHODS/APPROACH: Historical research will focus on landmark texts in disability rights movements and disability bioethics. Lessons learned from previous PAR is mostly obtained from reflexive accounts on behalf of the AR and outside of psychiatry. Analyzing these sources will result in a proposal of six principles that can guide the AR when ethically engaging in PAR with pIDD. RESULTS: The AR must understand the history of society valuing non-disabled lives over disabled lives, inclusive of pIDD, and the social model of disability as it relates to the human variation model. When engaging with pIDD, the AR can question the traditional definition of vulnerable populations, challenge the group to progress beyond informed consent, continually support a capacity-building approach to research and power-sharing skills, and embrace empowerment to enact political change. DISCUSSION: ARs, pIDD, and pIDD advocates must not accept the dearth of knowledge regarding psychiatric conditions, including life-threatening suicidality, in pIDD. The medical community should prioritize PAR with persons with pIDD to elucidate psychiatric conditions in pIDD that result in more efficacious and compassionate treatment. This proposal outlines major principles through which the AR can move forward ethically by engaging in PAR with pIDD.
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Illuminating Invisibility: A Qualitative Study of Dancers with Learning Disabilities in Higher Education Dance ProgramsBond, Karen E.; Dodds, Sherril, 1967-; Schifter, Catherine; DiLodovico, Amanda; Bond, Karen E. (Temple University. Libraries, 2020)Enactment of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990 expanded and clarified the rights of students with disabilities in higher education (Connor, 2011; Pena, 2014; Troiano, 2003). In the past three decades, the enrollment rate of students with learning disabilities (LD) in higher education has tripled. However, the magnitude and quality of scholarship addressing the experiences of students with disabilities (including LD) does not reflect this exponential shift. While existing literature addresses dancers with physical and developmental disabilities (Kuppers, 2004; Sandahl & Auslander, 2005; Whatley, 2007, 2008) and children with learning disabilities (Cone & Cone, 2011), research on dancers with learning disabilities in postsecondary settings is nil. Research that includes the voices of identifying dancers with learning disabilities in higher education is necessary in order to discover more effective pathways and approaches to interventions and learning strategies. This qualitative study examines the perceptions of six dance majors and minors with learning disabilities (LD) in higher education dance programs from five universities located in the New York/New Jersey/Eastern Pennsylvania and Midwest regions of the United States. The purpose of the study is to privilege the voices and perspectives of an underrepresented population in dance in order to illuminate challenges, learning strategies, and experienced meanings within creating, learning, and performing dance in higher education. Qualitative sources of data include in-person interviews, non-participant observations, and participant reflective journals. Several rounds of coding and data analysis generated a multifaceted and nuanced portrait of six dancers with LDs’ challenges, strategies, and experienced meanings, both individual and composite, in higher education dance. Several described self-determined approaches through agentic acts of learning individualized to their unique LDs. For all dancers, emotional states undergirded challenges, strategies, and relationality in higher education dance. Further, descriptions of visibility, acceptance, and affirmation by peers and instructors in technique and composition classrooms illuminated the value of relational authenticity for these dancers. Research findings suggest areas in need of reformed practices while also illuminating extant teaching practices that effectively meet the needs of students, including the transparent integration of ameliorative strategies into higher education dance. Findings related to emotional challenges point to the importance of emotional support as a priority in higher education dance programs, a need that I suggest has become increasingly critical for all university dance students during this period of global pandemic. The study offers insight into the ways dance in higher education can be more accessible and inclusive by privileging the authority of the individual student and enabling authentic engagement with self and a broader relationality to different others.
Quantitative examination of the bone health status of older adults with intellectual and developmental disability in Ireland: A cross-sectional nationwide studyBurke, E; Carroll, R; O'Dwyer, M; Walsh, JB; McCallion, P; McCarron, M; Mccallion, Philip|0000-0001-5129-6399 (2019-04-01)© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. Objectives (1) To investigate the prevalence of osteopenia and osteoporosis among adults with intellectual disabilities (IDs) and (2) to examine alternative optimal bone screening techniques. Design Observational cross-sectional study. Setting Wave 2 (2013-2106) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing. Participants A national representative sample of 604 male and female persons with ID aged 43 years and over. In total, 575 participants completed quantitative ultrasound (QUS) measurements for one or both feet. Outcome measures Participants underwent health assessments consisting of eight objective health measures including the standardised QUS of the calcaneus bone using a GE Lunar Achilles. A preinterview questionnaire and face-to-face interview were also completed. Results Objectively QUS identified poorer rates of bone health in people with ID overall with 74% indicating evidence of osteopenia (33.2%) or osteoporosis (41%). Females scored lower than males in the QUS t-scores a '2.208 (±1.77) versus a '1.78(±1.734). Bone status was stratified by gender (p=0.114), age (p=0.003), level of ID (p<0.0001) and living circumstance (p<0.0001). Conclusions This study has shown the prevalence of poor bone health in people with ID is substantial implying an increased risk of fracture due to reduced skeletal integrity. QUS screening has been shown to be useful when combined with clinical risk factors.
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