Cargando…

The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups a...

Descripción completa

Detalles Bibliográficos
Autores principales: Leadbitter, Kathy, Aldred, Catherine, McConachie, Helen, Le Couteur, Ann, Kapadia, Dharmi, Charman, Tony, Macdonald, Wendy, Salomone, Erica, Emsley, Richard, Green, Jonathan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5861155/
https://www.ncbi.nlm.nih.gov/pubmed/29150738
http://dx.doi.org/10.1007/s10803-017-3350-7
_version_ 1783308044983074816
author Leadbitter, Kathy
Aldred, Catherine
McConachie, Helen
Le Couteur, Ann
Kapadia, Dharmi
Charman, Tony
Macdonald, Wendy
Salomone, Erica
Emsley, Richard
Green, Jonathan
author_facet Leadbitter, Kathy
Aldred, Catherine
McConachie, Helen
Le Couteur, Ann
Kapadia, Dharmi
Charman, Tony
Macdonald, Wendy
Salomone, Erica
Emsley, Richard
Green, Jonathan
author_sort Leadbitter, Kathy
collection PubMed
description There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article 10.1007/s10803-017-3350-7) contains supplementary material, which is available to authorized users.
format Online
Article
Text
id pubmed-5861155
institution National Center for Biotechnology Information
language English
publishDate 2017
publisher Springer US
record_format MEDLINE/PubMed
spelling pubmed-58611552018-03-22 The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention Leadbitter, Kathy Aldred, Catherine McConachie, Helen Le Couteur, Ann Kapadia, Dharmi Charman, Tony Macdonald, Wendy Salomone, Erica Emsley, Richard Green, Jonathan J Autism Dev Disord S.I. : Parenting Children with ASD There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article 10.1007/s10803-017-3350-7) contains supplementary material, which is available to authorized users. Springer US 2017-11-18 2018 /pmc/articles/PMC5861155/ /pubmed/29150738 http://dx.doi.org/10.1007/s10803-017-3350-7 Text en © The Author(s) 2017 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle S.I. : Parenting Children with ASD
Leadbitter, Kathy
Aldred, Catherine
McConachie, Helen
Le Couteur, Ann
Kapadia, Dharmi
Charman, Tony
Macdonald, Wendy
Salomone, Erica
Emsley, Richard
Green, Jonathan
The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention
title The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention
title_full The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention
title_fullStr The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention
title_full_unstemmed The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention
title_short The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention
title_sort autism family experience questionnaire (afeq): an ecologically-valid, parent-nominated measure of family experience, quality of life and prioritised outcomes for early intervention
topic S.I. : Parenting Children with ASD
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5861155/
https://www.ncbi.nlm.nih.gov/pubmed/29150738
http://dx.doi.org/10.1007/s10803-017-3350-7
work_keys_str_mv AT leadbitterkathy theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT aldredcatherine theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT mcconachiehelen theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT lecouteurann theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT kapadiadharmi theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT charmantony theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT macdonaldwendy theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT salomoneerica theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT emsleyrichard theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT greenjonathan theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT theautismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT leadbitterkathy autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT aldredcatherine autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT mcconachiehelen autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT lecouteurann autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT kapadiadharmi autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT charmantony autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT macdonaldwendy autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT salomoneerica autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT emsleyrichard autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT greenjonathan autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention
AT autismfamilyexperiencequestionnaireafeqanecologicallyvalidparentnominatedmeasureoffamilyexperiencequalityoflifeandprioritisedoutcomesforearlyintervention