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The development and evaluation of a stigma protection intervention for Autism carers: a feasibility study.
Background: Individuals diagnosed with autism spectrum disorder are one of the most highly stigmatised groups and stigma is widely perceived in the lives of families with autism. Stigma has detrimental effects on the psychological health of caregivers and may in turn affect their caregiving abilities. The impact of stigma on the lives of families with autism is notably under-researched and the development of interventions to reduce stigma experienced by caregivers is a new area of research. There are currently no intervention programs available that help parents of autistic children cope with stigma or self-stigmatisation.
Aim: To develop and evaluate the usability, feasibility and preliminary effectiveness of a stigma protection intervention for caregivers of autistic children.
Methods: This study is funded by Autistica UK and will draw upon the first two phases of the Medical Research Council’s framework for the development and evaluation of complex interventions. A theoretical framework for the intervention will be developed based on extensive reviews of evidence-based literature. A mixed methods design will be used to measure the feasibility, acceptability and preliminary effectiveness of the designed intervention. Outcome measures will include psychological well-being, self-esteem, and perceived stigma and will be measured at three time points: baseline, immediately post-intervention and at 6 weeks follow-up. To further test the preliminary effectiveness and feasibility of the intervention, a sample of caregivers from the intervention group will be invited to discuss the intervention. This will enable refinement of the intervention for the next phase; a full pilot study.
Conclusion: This study will substantially contribute to a large gap in the existing stigma and autism literature and will be the first of its kind to help caregivers of autistic children cope with stigma and protect against the harmful effects of self- and public stigma. This will have positive effects on the family unit as a whole.
I am originally from the Netherlands and moved to England to study Psychology. I obtained a first class degree in Psychology from the University of Bedfordshire in 2005 and was awarded the British Psychological Undergraduate Award for my final year’s project that looked at personality and the effects of exercise on mood and cognition.
I then went on to work as a research assistant at the University of Oxford’s Child Psychiatry department looking at parental psychopathology and infant outcomes. I later worked for Imperial College London as a research psychologist on a randomised clinical controlled trial which followed children who were born very prematurely. I carried out behavioural assessments and evaluated the cognitive and neurodevelopmental assessments of the children which I thoroughly enjoyed.
I obtained my Masters in Health Psychology from Sheffield Hallam University in 2011 and my research project examined the effects of marital (dis)satisfaction on infant health outcomes. This project was awarded the Health Psychology Prize.