The experiences of parents of children with disabilities receiving healthcare services: Negative emotions and associated situations
Bibliographic record
Abstract
To explore the negative emotions expressed by parents of children with disabilities when describing their experiences with pediatric health care. Quotes mentioning negative emotional experiences and the situations in which these arose were identified in 13 transcribed focus group conversations involving 65 Canadian parents of children with neurodevelopmental disabilities. Data were analyzed using content analysis. There were 106 mentions of negative emotional experiences, including stress, frustration, trauma, upset, anger, emotional exhaustion, and fear. Common situations associated with these experiences included being given unwanted responsibilities, waiting for services/appointments, not being listened to, and being treated disrespectfully. Stress and frustration were associated with unwanted responsibilities, not being listened to, and waiting while at scheduled appointments, whereas trauma, upset, anger, and fear were associated primarily with being treated disrespectfully. Negative emotions were considered to arise from parents’ societally based expectations about how they would be treated in health care. Parents expressed strong negative emotions, indicating a lack of family-centered care in their experiences with pediatric healthcare services. Service providers can reduce the likelihood of negative emotional experiences by gauging the level of involvement desired by parents, listening carefully and sensitively, and acting with respect and understanding. • Parents experienced a range of negative emotions arising from their healthcare experiences, including stress and trauma. • This study highlighted negative emotions, situational triggers, and expectations in experiences of poor family-centered care. • Situations associated with parents’ negative experiences included being given unwanted responsibilities and being treated disrespectfully. • Parents’ negative emotional experiences indicate a lack of family-centered care still permeates pediatric health care.
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 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.004 |
| 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".