100 Just how long does it take? Using parental surveys documenting time required to provide care at home to children with medical complexity as a tool for advocacy
Notice bibliographique
Résumé
Abstract Background Children with medical complexity (CMC) constitute a growing population here and everywhere. CMC are fragile, complex, and dependent on technology. Sustainable, safe and effective care at home requires a high level of parental dedication, in knowledge, skills and time. While children thrive in the home setting, the demands on caregivers are substantial. As part of a larger advocacy project, a collaboration between healthcare professionals looking after CMC in Quebec was formed with a primary goal to create evidence-based standardized guidelines for homecare practices. During this process, wide disparities in actual care support received were noted as was the paucity of publication quantifying the time it takes to care for CMC at home. This innovative survey was planned to better describe families’ experiences and to further advocacy efforts with the development of data-driven care support recommendations. Objectives The objectives of this prospective survey were: a) to quantify daily parental expenditure of time to provide care at home to their child requiring i) parenteral nutrition (TPN), ii) peritoneal dialysis (PD), iii) noninvasive ventilation (BIPAP) or iv) tracheostomy care (TC) and b) to qualitatively explore the perceptions of parents regarding existing and desired homecare supports. Design/Methods Quebec CMC were identified through collaboration of multidisciplinary experts from each pediatric university hospital center and the provincial home ventilation program. The daily care required for CMC was described step-by-step with input from CMC’s parents with either TPN, PD, BIPAP or TC. A survey was developed to estimate time required by parents for care completion related to technology, medication, enteral feeding, maintenance of equipment and care organization. Open ended questions on parental perceptions of existing and desired homecare supports were included. The surveys were sent to all eligible families by their primary pediatrician or nurse. Data were entered into a database. For each care intervention, descriptive analyses were performed to determine the median (interquartile range) time required. Thematic analyses were used to evaluate open ended responses. Summary data was used by the expert collaboration to draft data-driven homecare support recommendations for CMC in Quebec and create request template to translate the recommendations into a practical tool for advocacy. Results A total of 87 parents of CMC were surveyed and 78 with complete quantitative data were available for analysis. For TPN, 14 surveys were available. The median (interquartile range) of total daily time dedicated to medical care was 259 (180) minutes a day, with care distributed through TPN administration and preparation (62 (49) minutes/day), enteral nutrition when indicated (42 (34) minutes/day), medication (48 (70) minutes/day) and meal (135(98) minutes/day). For PD, 12 surveys were available. Total daily time dedicated to medical care was 160 (111) minutes/day, with care distributed through dialysis administration and preparation (58 (19) minutes/day), enteral nutrition when indicated (35 (25) minutes/day), medication (35 (28) minutes/day) and other medical care (46 (24) minutes/day). For BIPAP, 39 surveys were available. Total daily time dedicated to care directly associated with BIPAP use was 18 (15) minutes/day. Total daily time dedicated to medical care was 55 (77) minutes/day when well, and 83 (180) minutes/day when sick. Respiratory care was 31 (42) minutes/day when well, and 48 (125) minutes/day when sick. Medication administration was 20 (22) minutes/day when well and 28 (60) minutes/day when sick. Personnel and equipment management was reported to take a median of 55 (interquartile range 119) minutes/week. For TC, 13 surveys were available. Total daily time dedicated to medical care was 109 (239) minutes/day, with 87 (111) minutes/days of direct tracheostomy care. Parents of CMC asked for further support in those categories: financial help, help with home task, respite, nighttime help and specialized support. Conclusion Parents provide substantial care at home for CMC. This study provides a first look at the actual time required to perform care. Although widely distributed, those time data give a first and unique overview of the task for parents taking care of CMC. Data driven recommendations for care support at home were created, along with standardized care request templates which are now in regular use in Quebec, demonstrating a powerful tool for advocacy.
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Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,010 | 0,028 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,001 |
| Bibliométrie | 0,002 | 0,002 |
| Études des sciences et des technologies | 0,001 | 0,001 |
| Communication savante | 0,002 | 0,001 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».