UNITING DISABILITY BIOETHICS AND PARTICIPATORY RESEARCH TO ETHICALLY ELUCIDATE PSYCHIATRIC CONDITIONS IN PERSONS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Genre
Thesis/DissertationDate
2023Author
Moors, Victoria
Advisor
Jones, NoraDepartment
Urban BioethicsSubject
EthicsCommunity based participatory research
Disability bioethics
Disability rights
Intellectual developmental disabilities
Participatory action research
Urban bioethics
Permanent link to this record
http://hdl.handle.net/20.500.12613/8476Metadata
Show full item recordDOI
http://dx.doi.org/10.34944/dspace/8440Abstract
BACKGROUND/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.ADA compliance
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