282 FASD assessment and diagnosis: the parent/carer experience

Le résumé fourni par la source

FASD Assessment and Diagnosis the Parent/Carer Experience Objectives To collate the lived experiences of parents and carers across the UK on seeking a Fetal Alcohol Spectrum Disorder (FASD) assessment and diagnosis for their child. The gathered information was shared with stakeholders across health, social care and UK governments to raise awareness of challenges faced by families caring for children with a history of prenatal alcohol exposure. Methods During FASD Awareness month in September 2021, a UK wide survey was opened to parents and carers seeking their views. This survey was designed by a FASD organisation with a national presence with input from an advisory group of professionals with experience of FASD diagnosis and support using a mix of qualitative and quantitative questions. Topics included knowledge of alcohol exposure during pregnancy, assessment and diagnosis process, post diagnostic support and co-morbidity with other diagnosis. It was promoted via social media and other communications by organisations within the FASD community throughout the month then analysed by an external body and report produced for dissemination. It should be noted that the survey was completed prior to publication of the NICE Quality Standards. Results A total of 451 parents/carers responded to the survey and represented all nations of the UK. Key findings included Two thirds of respondents said at times they felt more informed than professionals about FASD Only 52% of respondents received a written report following diagnosis 79% of respondents agreed or strongly agreed that their child’s FASD diagnosis had the positive impact of enabling them to adapt their parenting style. When asked why families did not seek a FASD diagnosis when it was suspected, 59% of respondents reporting that ‘it was too difficult to access the diagnostic pathway where they lived’, with 39% reporting that ‘they had no prenatal alcohol evidence’. 84% of parent and carers had not been given information to help them understand the assessment process In addition, a range of qualitative data was recorded reflecting the lived experience of those seeking a diagnosis for their child. Conclusion The survey draws attention to the inequalities in access to service, and barriers to assessment and diagnosis faced by families parenting a child or young person with a history of pre-natal alcohol exposure. It demonstrates a significant need for improved access to post-diagnosis support, or where no diagnosis has been given, and brings to the forefront the voice of those with lived experience.

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