About Down's Syndrome : How parents & primary carers experience the adjustment to the dual diagnosis of Down Syndrome & Autism Spectrum Disorders

Are you a parent or primary care giver of a child with Down Syndrome who has received an additional confirmed diagnosis of Autism Spectrum Disorder?

Are you interested in being involved in a new research study exploring what it is like to be a parent or carer of a child who receives the secondary diagnosis of Autism Spectrum Disorder?

If so, please read the following information about this study and how to take part.

Background

To date research undertaken on the dual diagnosis of Down Syndrome and Autism Spectrum Disorder has largely focused on exploring the behaviour and features of those with the dual diagnosis and how these characteristics are distinct from what one might expect from a child with Down Syndrome without ASD. Research relating to the experience of parents and primary care givers of children with Down Syndrome who later receive a secondary diagnosis of Autism Spectrum Disorder is limited. Currently insights tend to be gained from reports received from parents/carers of children who have a diagnosis of either Down Syndrome or Autism Spectrum Disorder, but not both. While generalisations and speculations can be made there is no specific evidence about the experience of parents/carers of children with Down Syndrome who later gain a second diagnosis of Autism Spectrum Disorder.

New Study

This study aims to explore the experience of parents/carers of children with Down Syndrome who have also received a diagnosis of ASD, paying particular attention to how parents/carers respond and adjust to the additional diagnosis and the impact such experiences have on their identity and meaning of being a parent/carer. The study will involve interviews with either mothers, fathers or primary care givers of children (below the age of eighteen) with Down Syndrome and a confirmed diagnosis of ASD.

This research is being undertaken as part of the lead researcher’s Clinical Psychology Doctorate. It is hoped that the study will help to increase awareness of the dual-diagnosis of Down Syndrome and ASD and the implications it can have for parents/carers, in addition to providing better understanding and support for families.

How to Take Part

If you are interested in taking part in the study or you would like some more information, please contact me, Katie Lambert via e-mail: k.lambert@surrey.ac.uk. Alternatively, if you would prefer a telephone conversation, I would be happy to arrange a suitable time to talk.

One interview will be undertaken with each participant. The interviews will be conducted in a setting which is most convenient and feels most comfortable for you. This may include your home or a local resource centre. The interview is likely to take 60 to 90 minutes and will be audio-recorded. Given that each interview is going to be quite extensive, requiring detailed analysis, only a small number of interviews will be necessary. Therefore, it is possible that not everyone who expresses an interest will be able to participate in the project. I will inform those to whom this applies via e-mail and will offer the opportunity to receive updates about the progression of the study including a summary of the key findings at the conclusion of the project.

Thank you.

 

If you have any questions, please contact:
Katie Lambert (Trainee Clinical Psychologist).
E-mail: k.lambert@surrey.ac.uk
School of Psychology. University of Surrey. Guildford. Surrey. GU2 7XH.

 

Research Project Principle Supervisors:
Dr. Emma Williams.
E-mail: e.i.williams@surrey.ac.uk
School of Psychology. University of Surrey. Guildford. Surrey. GU2 7XH.

Dr. Kate Gleeson.
E-mail: k.gleeson@surrey.ac.uk
School of Psychology. University of Surrey. Guildford. Surrey. GU2 7XH

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