Understanding the support experiences of families of children with autism and sensory processing difficulties

A qualitative study

Bibliographic Data

ID19506429
AuthorsSarah Milosevic (0000-0003-1973-8286, Centre for Trials Research Cardiff University Cardiff UK, corresponding author), L Brookes-Howell (0000-0002-8263-7130, Centre for Trials Research Cardiff University Cardiff UK), Lucy Brookes‐Howell, Elizabeth Randell (0000-0002-1606-3175, Centre for Trials Research Cardiff University Cardiff UK), Rhys Williams‐Thomas (0000-0002-1779-3460, Centre for Trials Research Cardiff University Cardiff UK), Sue Delport (School of Healthcare Sciences Cardiff University Cardiff UK), Monica Busse (0000-0002-5331-5909, Centre for Trials Research Cardiff University Cardiff UK), David Gillespie (0000-0002-6934-2928, Centre for Trials Research Cardiff University Cardiff UK), Alka S Ahuja (Aneurin Bevan University Health Board Newport UK), Alka Ahuja (0000-0003-2658-2021, Aneurin Bevan University Health Board), Anne Marie McKigney (Aneurin Bevan University Health Board Newport UK), Eleni Glarou (0000-0001-5666-2458, Centre for Trials Research Cardiff University Cardiff UK), Rachel McNamara (0000-0002-7280-1611, Centre for Trials Research Cardiff University Cardiff UK)
Year2022
Volume25
Issue3
Pages1118-1130
Publication date2022-06-01
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.13465
PMID35303380
OpenAlexW4221133904
LanguageEN
Citations received5
References cited40

BACKGROUND: Support, such as information, advice and therapies, can play a vital role in the lives of families of autistic children. However, little is known about the support experiences of UK parents and carers. AIM: To explore experiences of and access to support for families of children with autism and sensory processing difficulties, from the perspective of parents and carers. METHODS: Semi-structured, timeline-assisted interviews were conducted with parents/carers of 30 children aged 5-11, exploring experiences of support. Framework analysis was used to identify themes in the interview data. RESULTS: Support varied widely and was not accessed equitably. Specialist autism support, together with support from other parents and voluntary organizations, was perceived as more useful than statutory and nonspecialist provision. Unmet support needs included an ongoing point of contact for information and advice for parents, and access to direct therapy and specialist mental health provision for children. CONCLUSIONS: Findings emphasize the need for a clear pathway of support following autism diagnosis, autism-specific training for professional service providers and specialist provision tailored to the needs of autistic children. PATIENT OR PUBLIC CONTRIBUTION: An advisory group of four parents of children with autism provided feedback on study procedures and materials, including participant information sheets and timeline completion instructions

Autism · Psychiatry · Qualitative research · Timeline · Autism Spectrum Disorder Research · Disability Rights and Representation · Family and Disability Support Research · Medicine · Nursing · Psychology

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