88 Information given post diagnosis of Autism: obtaining parent feedback to improve existing practice

Aim To gain feedback from parents of children diagnosed with an Autistic Spectrum Condition regarding information they received following diagnosis, with a view to improve our service. Method Feedback was initially sought using a questionnaire that was distributed to all parents of children with a new diagnosis of autism by consultants at Worthing Child Development Centre (CDC), during a 6 month period. After a very low response rate, a focus group was arranged by inviting 20 parents, randomly selected from all those diagnosed in a 4 month period. Children with dual diagnoses and parents unable to speak English without an interpreter were excluded. There were 3 facilitators and 1 scribe. Results 4 parents attended the focus group. Parents preferred diagnostic information given to them by a Speech and Language Therapist alongside their consultant. They found it difficult to take in the information and would have liked written information to take home. A follow up visit from a specialist health visitor was very useful and was felt best at 3–4 weeks post diagnosis. Parents wanted clinic reports to contain information specific to their child, rather than general implications of diagnosis. Social media support groups were named as more useful than official websites. Conclusion This qualitative study suggests positive aspects of post diagnosis information provided by Worthing CDC, however parents want written information provided sooner. Parents also value social media groups that are not regulated, making their recommendation controversial. Most importantly, although it can be difficult to obtain, parent feedback can provide valuable information to ensure services best meet the needs of their users and therefore must be sought routinely.