Parents' Expressions of Concerns and Hopes for the Future and Their Concomitant Assessments of Disability in Their Children

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Abstract

Aim: To assess parents' ability to express their concerns and hopes for the future in their children with disability and assess their children's disability as well as to analyse these data for consistency.

Method: Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, or disability following brain tumours were asked to freely express their concerns and hopes for the future and to assess disability in their own children by employing a set of 26 International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY) body function (b) codes and activity and participation (d) codes. A grounded theory approach was employed to systematize parents' expressions of concerns and hopes; then, parents scored qualifiers on a 5-step qualitative Likert scale. Parents assessed their children's disability in the same way using the ICF-CY 5-step qualifier scale.

Results: Altogether, 119 parents freely expressed their concerns and hopes, and 101 of them also assessed their children's disability using the 26 ICF-CY codes. A total of 475 expressions of concern and hopes (issues) were expressed and categorized into 34 areas of concern and hopes (subsections). The most frequently mentioned issues were education; understanding, goodwill, and communication between parents; and community support. Qualitative data on both 5-step qualifier scales showed good reliability. Rasch analysis maps on concerns and hopes for children as well as on the ICF-CY assessment demonstrated good alignment and a clinically relevant progression from the least to the most disabled children.

Conclusion: Parents can express valid and reliable data on their concerns and hopes for the future and can reliably assess disability in their own children.

Original languageEnglish
JournalClinical Medicine Insights: Pediatrics
Volume12
Pages (from-to)1-13
ISSN1179-5565
DOIs
Publication statusPublished - 2018

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Parents
Disabled Children
Spinal Dysraphism
Cerebral Palsy
Communication
Education

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@article{4e2ae82053354a409379b7bbec1ee63b,
title = "Parents' Expressions of Concerns and Hopes for the Future and Their Concomitant Assessments of Disability in Their Children",
abstract = "Aim: To assess parents' ability to express their concerns and hopes for the future in their children with disability and assess their children's disability as well as to analyse these data for consistency.Method: Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, or disability following brain tumours were asked to freely express their concerns and hopes for the future and to assess disability in their own children by employing a set of 26 International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY) body function (b) codes and activity and participation (d) codes. A grounded theory approach was employed to systematize parents' expressions of concerns and hopes; then, parents scored qualifiers on a 5-step qualitative Likert scale. Parents assessed their children's disability in the same way using the ICF-CY 5-step qualifier scale.Results: Altogether, 119 parents freely expressed their concerns and hopes, and 101 of them also assessed their children's disability using the 26 ICF-CY codes. A total of 475 expressions of concern and hopes (issues) were expressed and categorized into 34 areas of concern and hopes (subsections). The most frequently mentioned issues were education; understanding, goodwill, and communication between parents; and community support. Qualitative data on both 5-step qualifier scales showed good reliability. Rasch analysis maps on concerns and hopes for children as well as on the ICF-CY assessment demonstrated good alignment and a clinically relevant progression from the least to the most disabled children.Conclusion: Parents can express valid and reliable data on their concerns and hopes for the future and can reliably assess disability in their own children.",
author = "Illum, {Niels Ove} and Mette Bonderup and Gradel, {Kim Oren}",
year = "2018",
doi = "10.1177/1179556518784948",
language = "English",
volume = "12",
pages = "1--13",
journal = "Clinical Medicine Insights: Pediatrics",
issn = "1179-5565",
publisher = "Libertas Academica Ltd.",

}

Parents' Expressions of Concerns and Hopes for the Future and Their Concomitant Assessments of Disability in Their Children. / Illum, Niels Ove; Bonderup, Mette; Gradel, Kim Oren.

In: Clinical Medicine Insights: Pediatrics, Vol. 12, 2018, p. 1-13.

Research output: Contribution to journalJournal articleResearchpeer-review

TY - JOUR

T1 - Parents' Expressions of Concerns and Hopes for the Future and Their Concomitant Assessments of Disability in Their Children

AU - Illum, Niels Ove

AU - Bonderup, Mette

AU - Gradel, Kim Oren

PY - 2018

Y1 - 2018

N2 - Aim: To assess parents' ability to express their concerns and hopes for the future in their children with disability and assess their children's disability as well as to analyse these data for consistency.Method: Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, or disability following brain tumours were asked to freely express their concerns and hopes for the future and to assess disability in their own children by employing a set of 26 International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY) body function (b) codes and activity and participation (d) codes. A grounded theory approach was employed to systematize parents' expressions of concerns and hopes; then, parents scored qualifiers on a 5-step qualitative Likert scale. Parents assessed their children's disability in the same way using the ICF-CY 5-step qualifier scale.Results: Altogether, 119 parents freely expressed their concerns and hopes, and 101 of them also assessed their children's disability using the 26 ICF-CY codes. A total of 475 expressions of concern and hopes (issues) were expressed and categorized into 34 areas of concern and hopes (subsections). The most frequently mentioned issues were education; understanding, goodwill, and communication between parents; and community support. Qualitative data on both 5-step qualifier scales showed good reliability. Rasch analysis maps on concerns and hopes for children as well as on the ICF-CY assessment demonstrated good alignment and a clinically relevant progression from the least to the most disabled children.Conclusion: Parents can express valid and reliable data on their concerns and hopes for the future and can reliably assess disability in their own children.

AB - Aim: To assess parents' ability to express their concerns and hopes for the future in their children with disability and assess their children's disability as well as to analyse these data for consistency.Method: Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, or disability following brain tumours were asked to freely express their concerns and hopes for the future and to assess disability in their own children by employing a set of 26 International Classification of Functioning, Disability and Health, Children and Youth Version (ICF-CY) body function (b) codes and activity and participation (d) codes. A grounded theory approach was employed to systematize parents' expressions of concerns and hopes; then, parents scored qualifiers on a 5-step qualitative Likert scale. Parents assessed their children's disability in the same way using the ICF-CY 5-step qualifier scale.Results: Altogether, 119 parents freely expressed their concerns and hopes, and 101 of them also assessed their children's disability using the 26 ICF-CY codes. A total of 475 expressions of concern and hopes (issues) were expressed and categorized into 34 areas of concern and hopes (subsections). The most frequently mentioned issues were education; understanding, goodwill, and communication between parents; and community support. Qualitative data on both 5-step qualifier scales showed good reliability. Rasch analysis maps on concerns and hopes for children as well as on the ICF-CY assessment demonstrated good alignment and a clinically relevant progression from the least to the most disabled children.Conclusion: Parents can express valid and reliable data on their concerns and hopes for the future and can reliably assess disability in their own children.

U2 - 10.1177/1179556518784948

DO - 10.1177/1179556518784948

M3 - Journal article

VL - 12

SP - 1

EP - 13

JO - Clinical Medicine Insights: Pediatrics

JF - Clinical Medicine Insights: Pediatrics

SN - 1179-5565

ER -