Family Caregivers' Experiences of Services for Children With Medical Complexity: A Systematic Review and Qualitative Evidence Synthesis
Notice bibliographique
Résumé
BACKGROUND: Many high-income countries are seeking to adapt services to meet the needs of the growing population of children with medical complexity and their families but concerns have been raised about the quality of this care. To understand family caregivers' experiences of services and identify priorities for improvement we need to synthesise research about families' experiences of services for children with medical complexity. OBJECTIVES: To systematically identify and synthesise the qualitative evidence of family caregivers' experiences of health, care and education services for children with medical complexity. METHODS: Systematic searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and ERIC from January 2011 to March 2024. Studies were assessed for methodological quality and data richness and synthesized using thematic synthesis. RESULTS: Seventy-one studies met the eligibility criteria. A purposive sample of 29 studies was taken, selecting good-quality papers with rich data. These studies described the experience of 524 family caregivers and focused mostly on hospital care and care in the home. No studies were identified that focused specifically on family caregivers' experiences of education or social care services. Most studies were from the United States and Canada. The overarching theme was 'concern for child's safety' with three subthemes: 'interactions with professionals', 'caring for the whole family' and 'system organisation'. CONCLUSIONS: Family caregivers' priority is maintaining their child's safety across all settings of care. Fragmented systems and difficulties trusting professionals exacerbate parents' stress and concern for their child's safety. To keep the child safe and well, services need to address the needs of the whole family (e.g., parental sleep and mental health, finances, housing). Future research is needed to address the gap in research on social care services and education. PATIENT AND PUBLIC CONTRIBUTION: Emerging findings of the review were discussed in a 2-h workshop with six parents of children with medical complexity. The parents inputted into the development of the analytical themes and helped to shape the findings of the review.
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Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 tête enseignante, 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 ».