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. / Urban Bioethics
| Identifer | oai:union.ndltd.org:TEMPLE/oai:scholarshare.temple.edu:20.500.12613/8476 |
| Date | January 2023 |
| Creators | Moors, Victoria, 0009-0003-1317-4843 |
| Contributors | Jones, Nora L. |
| Publisher | Temple University. Libraries |
| Source Sets | Temple University |
| Language | English |
| Detected Language | English |
| Type | Thesis/Dissertation, Text |
| Rights | IN COPYRIGHT- This Rights Statement can be used for an Item that is in copyright. Using this statement implies that the organization making this Item available has determined that the Item is in copyright and either is the rights-holder, has obtained permission from the rights-holder(s) to make their Work(s) available, or makes the Item available under an exception or limitation to copyright (including Fair Use) that entitles it to make the Item available., http://rightsstatements.org/vocab/InC/1.0/ |
| Relation | http://dx.doi.org/10.34944/dspace/8440, Theses and Dissertations |
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