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Identifying the information and mental health service needs of children with cystic fibrosis

2022· preprint· en· W4210971806 on OpenAlexafffund
Hilary A. Power, Amanda Oliver, Shelby Shivak, Heather Switzer, M. Rebecca Genoe, Donald Sharpe, Kristi D. Wright

Bibliographic record

Venuenot available
Typepreprint
Languageen
FieldMedicine
TopicCystic Fibrosis Research Advances
Canadian institutionsSaskatchewan HealthSaskatchewan Health AuthorityUniversity of Regina
FundersSaskatchewan Health Research FoundationUniversity of Regina
KeywordsMental healthThematic analysisCoping (psychology)AnxietyMedicinePsychologyNursingQualitative researchClinical psychologyPsychiatry

Abstract

fetched live from OpenAlex

Objective: Children with cystic fibrosis (CF) may experience elevated symptoms of depression and anxiety, as well as impairments in quality of life. To date, there is no mental health program specifically designed to address the mental health needs of children with CF. In the interest of informing the development of an accessible (i.e., Internet-delivered) mental health program, the present study examined the information and service needs of children with CF from the perspective of children with CF, their parents, and CF health care providers. Methods: A qualitative research design was used. Participants (n = 16) included children with CF (n = 5, Mage = 9.25, SD = 1.29), parents (n = 7, Mage = 36.43, SD = 3.46), and health care providers (n = 4, Mage = 44.00, SD = 10.46) recruited from regional CF clinics. Participants completed a brief demographic questionnaire. Semi-structured individual interviews were conducted with all participants. Results: Thematic content analysis generated four major themes: (1) challenges living with CF, (2) coping, (3) building independence, and (4) bridging gaps in services. Each theme was comprised of several subthemes. Conclusions: The findings highlight many emotional and social challenges experienced by children with CF and their families. Providing effective support for the entire family in managing and coping with CF was emphasized. Information gathered in the present study will be used, in combination with the empirical literature, to inform the development of an Internet-delivered mental health prevention program for children living with CF.

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)0.002
metaresearch head score (Gemma)0.007
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.015
Threshold uncertainty score0.029

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0020.007
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0010.001
Science and technology studies0.0020.001
Scholarly communication0.0010.001
Open science0.0000.002
Research integrity0.0010.001
Insufficient payload (model declined to judge)0.0020.000

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 head0.016
GPT teacher head0.311
Teacher spread0.295 · 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 designQualitative
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".

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Citations0
Published2022
Admission routes2
Has abstractyes

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