Understanding experiences of patients and caregivers with lung disease
Bibliographic record
Abstract
Background: Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease that causes limitations in daily life and decreases quality of life. Excellent COPD care requires an integrated system; this research investigated the health impacts and experiences of persons with COPD and their informal caregivers. Approach: We interviewed persons with COPD (PWC) and their caregivers using an interpretive phenomenological approach. Our interdisciplinary research team includes a clinician (respirologist), and patient partners that represent both PWC and caregiver groups. Our data collection tools were co-created; and all team members supported analysis and knowledge dissemination. These PWC partners help us ensure we are asking the right questions in a way that is comfortable for participants to answer and creating (and sharing) usable knowledge. Our goal for this research was to investigate the impact of age, sex, gender, and socioeconomic status on the physical and mental health of PWC and their informal caregivers with an aim to providing guidance to support integrated care systems that meet patient needs. This research provided insight into the range of needs that are unmet by the current healthcare system and will help us develop recommendations that advocate for more equitable and integrated COPD care. Results: Our preliminary results show that PWC experience several challenges across the health system and throughout their health journey. These challenges include lack of information provided, limited access to pulmonary rehabilitation and other forms of support, and stigma/blame for their disease. An important finding was the need for personalized care where participants felt they played a role in their treatment plan. This is a huge facet of integrated care and will be emphasized in our new research study with PWC and caregivers. Implications: Asking participants about their experiences provides a voice and a space to express needs and wants towards their care. Currently, there is a gap in the literature regarding individuals with COPD and their caregiver's experiences with the disease. This research shines a light on these experiences and what PWC and their caregivers need in terms of care and support. This study lays a foundation for much needed research in this area and supports the development of integrated care solutions. Ultimately, this work informs the development of optimal and equitable care for PWC and their caregivers.
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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 | 0.009 | 0.022 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.008 | 0.008 |
| Scholarly communication | 0.006 | 0.006 |
| Open science | 0.001 | 0.009 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.003 | 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".