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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

2011· article· en· W2145234326 on OpenAlexaff
Roy I. Brown, Stefan Geider, Alison F. Primrose, Nancy Jokinen

Bibliographic record

VenueJournal of Intellectual Disability Research · 2011
Typearticle
Languageen
FieldPsychology
TopicFamily and Disability Support Research
Canadian institutionsUniversity of Northern British ColumbiaUniversity of Calgary
Fundersnot available
KeywordsPsychologyDilemmaDay careQuality of life (healthcare)Family lifeInterviewPerceptionInclusion (mineral)Family supportService (business)CognitionDevelopmental psychologyGerontologyMedicinePsychiatryNursingSocial psychology

Abstract

fetched live from OpenAlex

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.

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 machine prediction

Teacher imitation

Not 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.

metaresearch head score (Codex)0.004
metaresearch head score (Gemma)0.009
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.031
Threshold uncertainty score0.061

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0040.009
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0010.001
Science and technology studies0.0070.006
Scholarly communication0.0050.003
Open science0.0010.004
Research integrity0.0020.003
Insufficient payload (model declined to judge)0.0050.000

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.

Opus teacher head0.148
GPT teacher head0.426
Teacher spread0.278 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designObservational
Domainnot available
GenreEmpirical

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".

Quick stats

Citations32
Published2011
Admission routes1
Has abstractyes

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