99 Impact of COVID-19 pandemic on children with medical complexity: Parental perspective about the role of a Complex Care program
Bibliographic record
Abstract
Abstract Primary Subject area Complex Care Background The COVID-19 pandemic led to major and rapid organizational and structural healthcare changes including a switch from ambulatory services towards telemedicine and decreased access to home services. Children with medical complexity (CMC) require many medical services and are generally prone to infectious complications. Little is known about the impact of the pandemic on families of CMC. Understanding how CMC families experience the COVID-19 pandemic is essential to tailor healthcare services to answer their needs more effectively. Objectives We explored parental experience of CMC during the COVID-19 pandemic, and how the complex care program (CCP) answers their new needs. Design/Methods This qualitative study was conducted between July 2020 and January 2021 in a tertiary care pediatric university hospital centre. Semi-structured interviews were done with parents of CMC, admitted in the CCP at least 1 year prior to the beginning of the pandemic. The interview guide was co-constructed by physicians and nurses from the CCP. Interviews were transcribed verbatim and analyzed using NVivo. Data were organized into codes and categories. Thematic content analysis was performed by grouping categories and highlighting emerging themes. Results Eleven families (14 parents – 4 fathers, including 3 couples) were interviewed. The first wave of the pandemic seemed to have caused important uncertainty and anxiety amongst parents of CMC. Almost all the parents reported cancelling numerous appointments in order to avoid coming to the hospital at all costs. Some parents, worrying specifically about the fragility of their child, stopped working and stayed home to reduce transmission risks. Fear of facing shortages in medications, nutritional supplements and medical equipment for home care was frequently expressed. They did not express worries about the de-confinement periods. The support provided by the CCP’s staff was greatly appreciated, namely active problem-solving via phone calls, videoconferences, emails and pictures, leading to fewer hospital visits and less need to seek emergency care. Some reported that more general communication from the CCP (e.g., a weekly information email), would have helped to interpret the overwhelming amount of information from the media. Parents expressed a strong desire to maintain telemedicine services after the pandemic. Conclusion The COVID-19 pandemic brought additional worries to parents of CMC enrolled in CCPs, including fear of shortages and virus transmission. Direct communication with the CCP and remote problem-solving were greatly appreciated by families. Improvement to follow-up include finding ways to help interpreting data from the media.
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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 | 0.005 | 0.013 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.006 | 0.005 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.004 | 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".