Our #ResNetSLT journal club this month will be led by Hazel Roddam @HazelRoddam1 and Amy Hilton @AmySlt together with other members of our team. Join us on February 27th at 7.30 – 8.30pm (UK time).
The open access paper is: The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention – Kathy Leadbitter, Catherine Aldred, Helen McConachie, Ann Le Couteur, Dharmi Kapadia,Tony Charman, Wendy Macdonald, Erica Salomone, Richard Emsley, Jonathan Green, The PACT Consortium (2017).
Our theme of ASD this month has been chosen to link with the CPLOL European Day on 6th March to raise public awareness of communication disorders.
This paper recognises the very considerable impact on quality of life for parents of children who have Autism Spectrum Disorder (ASD). There are potential consequences for their own wellbeing and mental health, as well as potential impact on the siblings of a child with ASD. These highly complex multiple factors all influence parents’ priorities for their child’s interventions.
Although a number of tools and approaches have been used to evaluate these indicators of parental wellbeing in families who have a child with ASD, none of these had been specifically developed for and by parents themselves.
This paper describes how this new tool was developed and validated by the PACT Consortium working together with groups of parents, supported by the National Autistic Society.
Our Tweetchat will include discussions around the use of this tool in clinical services as well as in research studies. We look forward to sharing experiences between practitioners at all stages of your career, educators and researchers. Here are the questions to structure our hour’s chat.
- From your own experience, what do you think are parents’ priorities for key outcomes of an early intervention for their child and family?
- In your service how have you prioritised outcomes for early intervention based on any measures of the child and family experience and QoL?
- What do you think may be the benefits or constraints of using a validated parent-generated measure of family experience, such as the AFEQ?
- Sibling relationships and parent couple relationships were underrepresented in the research paper, how might these be investigated further in the future?
HERE ARE SOME EXTRACTS FROM THE CHAT & FURTHER LINKS TO FOLLOW UP …
Pituch, et al (2011). Parent reported treatment priorities for children with autism spectrum disorders. Research in Autism Spectrum Disorders. 5. 135-143
https://www.tandfonline.com/doi/abs/10.1080/13575279.2014.905453?mobileUi=0&journalCode=cccp20
The SCERTS assessment process report