“It feels terrible that people are making decisions for me”: Reflections and experiences of individuals with psychiatric disability who have substitute decision makers for treatment.
Bibliographic record
Abstract
OBJECTIVE: In Canada and elsewhere, making treatment decisions for a person with serious mental illness (SMI) who was found incapable for treatment decisions via a substitute decision maker (SDM) is the norm. This practice is often called into question from a rights-based perspective. The literature on the views of affected individuals is limited. We explore the experiences of adults with SMI who have had SDMs to gain more in-depth understanding. METHOD: We conducted semistructured interviews with 11 consumers of psychiatric services who have had experiences with SDM (range 1-12 years) at an urban hospital in Toronto, Canada. RESULTS: Thematic analysis showed five main themes and related subthemes, including: (1) strong dissatisfaction with and rejection of the SDM's role and purpose; (2) pervasive sense of stigma associated with having a SDM; (3) ongoing struggles to gain autonomy; (4) mixed changes in relationship with and views about SDM; and (5) views on how to improve SDM process. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Our study highlights substantial dissatisfaction with the current SDM system and approaches among adults with SMI who have had SDMs. Issues of stigma and struggles to regain autonomy are prevalent. We discuss the personal, clinical, and social-legal contexts in which they occur, particularly in light of the United Nations' Convention on the Rights of Persons with Disabilities that calls for replacing SDMs with supported decision making. Rights-based approaches to care carry substantial practice implications and call for thoughtful change management. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".