Family life and the impact of previous and present residential and day care support for children with major cognitive and behavioural challenges: a dilemma for services and policy
Notice bibliographique
Résumé
INTRODUCTION: Since the development of inclusion and integration, parents have increasingly become the major, and sometimes the only, carers of their children with disabilities. Many families speak of stress and frustration with service and community support, and some have turned to residential and specialised day care services to overcome challenges. The need for, and experiences of, such services needs to be examined not just in terms of the child but also in terms of family impact. METHOD: The study involved interviewing parents on a 1:1 basis and in a focus group to examine the perceptions of family life, along with their later experience of full-time day and residential care. The children had multiple diagnoses of intellectual disability plus major challenging behaviour. RESULTS: The results describe the major challenges facing families when the children spent most or all of their time at home. This contrasted starkly with the changes in perceived family life once the children were in residential care and day support. Improvements in behaviour of the children were noted and children began to return home for periods of time. Parent noted increased stability of family life, involvement of siblings in more normal community life and increased opportunities for spouses to function more effectively in one or more life domains. Family members perceived a major improvement in overall quality of life. DISCUSSION: The results are consistent with findings in other family quality of life studies in terms of family experience, and the types of challenges faced when the child was at home, including when excluded from the regular education system. Extensive support in raising children is required by parents and without this there is a deleterious effect on family life. Many families experienced exclusion within their home communities. Full-time day and residential support were provided, allowing the family to function more effectively and later to provide a more natural home environment for the child. The article raises questions of policy concerning family well-being, as well as the needs of the child.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
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 | 0,004 | 0,009 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,007 | 0,006 |
| Communication savante | 0,005 | 0,003 |
| Science ouverte | 0,001 | 0,004 |
| Intégrité de la recherche | 0,002 | 0,003 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 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 ».