Experiences of Living with an Autism Spectrum Condition - V1

• Research type

  Research Study

• Full title

  Experiences of Receiving and Living with a Diagnosis of an Autism Spectrum Condition: Listening to Young People and their Families.

• IRAS ID

  158736

• Contact name

  Suzy O'Connor

• Contact email

  Suzy.O'Connor@glasgow.ac.uk

• Research summary

  Background: Autism spectrum conditions (ASCs) or ‘disorders’ are a range of developmental conditions characterised by difficulties in social communication, social interaction and social imagination. In the context of the recent Scottish Autism Strategy (Scottish Government, 2011), a growing emphasis on service user involvement in service improvement and to further our clinical understanding, there is a need for more research into the lived experiences of young people who receive a diagnosis of an ASC and their families. In particular, currently there is limited research exploring the experiences of young people with ASCs. Furthermore, there is no existing peer-reviewed research of young people's experiences of receiving and living with a diagnosis of an ASC alongside the experiences of their parent/carers. This is particularly relevant as research suggests that having a coherent and shared family narrative about stressful events is associated with psychological well-being.

  Aims: To explore young people with ASCs and their parent/carers’ lived experiences of the process of assessment, receiving and living with a diagnosis of an ASC.

  Methods: Three or four dyads of young people and a parent/carer will be recruited through purposive sampling. Their lived experiences will be explored through semi-structured interviews. Interviews will be transcribed and analysed using interpretative phenomenological analysis to explore emerging themes across each dyad and the group as a whole.

  Applications: The findings from this study may enhance our clinical understanding of the experiences of young people with ASCs and their parent/carers. It may also inform service development to improve the process of assessment and diagnosis and the available services and support following diagnosis.

• REC name

  West of Scotland REC 5

• REC reference

  14/WS/1104

• Date of REC Opinion

  21 Oct 2014

• REC opinion

  Favourable Opinion