Experiences of Living With Primary Progressive Aphasia: A Scoping Review of Qualitative Studies
Bibliographic record
Abstract
INTRODUCTION: Understanding the experiences of people who live with primary progressive aphasia (PPA) can inform the development of appropriate speech-language pathology services for this population. This review aimed to summarize the qualitative research on the experience of living with PPA from the perspective of the individuals with the disorder and their families. METHODS: A scoping review was conducted. RESULTS: Eight studies met the inclusion criteria. Themes in the 3 investigations that focused on the individual's perspective included adapting to overcome language difficulties and dealing with increased dependency. Themes identified in the 5 studies that highlighted the family's perspective included observing and adapting to language, behavioral, and social communication changes; lack of awareness of PPA; control; and the impact of the historical relationship. DISCUSSION: Experiences from the 2 perspectives differed. Further research is needed, particularly in relation to identifying the general experience of PPA from the perspective of individuals with the disorder.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.031 | 0.058 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.002 |
| Bibliometrics | 0.012 | 0.015 |
| Science and technology studies | 0.002 | 0.003 |
| Scholarly communication | 0.004 | 0.005 |
| Open science | 0.002 | 0.004 |
| Research integrity | 0.002 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 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 source (direct Gemma or distilled Codex), 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".