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Completed Research

For Scotland’s Disabled Children and Children in Scotland Parent Participation Project

fSDC is looking at the impact of welfare reform on families of disabled children in Scotland. If you would like to give your views, complete this survey.

Cerbera and Swansea Metropolitan University research on stress

Cerbera and Swansea Metropolitan University are carrying out research on stress in grandparents and siblings of children with neuro-developmental conditions and disorders. If you are interested in taking part in the interviews or completing the questionnaire please contact vicki.hardy@smu.ac.uk

Alliance Scotland questionnaire

Alliance Scotland is asking for feedback from parents and carers in Scotland about the 'Getting it right for every child' (GIRFEC) approach. If you are interested, please fill in the questionnaire and return it to margaret.barclay@alliance-scotland.org.uk by Fri 31st Jan 2014.

You can find more information about GIRFEC here.

Health Engagement Survey

Mencap, the National Autistic Society, Scope and Sense are looking into experiences of people with a disability using new health organisations like NHS England and Healthwatch. They need your help and to hear about your experiences to write their report. https://www.surveymonkey.com/s/surveyhealth

Consultation on screening

The consultation period has finished.

The UK National Screening Committee is currently running a review to consider whether to offer screening earlier for T13 and T18 (Patau's and Edwards' syndromes) as part of the current 'combined' test for Down's syndrome in the first trimester. 

Do you think women should be offered screening earlier for T13  and T18 (Patau's and Edwards' syndromes) as part of the current 'combined' test for Down's syndrome in the first trimester?

Please respond to Kirsty by 1 June 2014 so a SOFT response can be prepared.

Food in Scottish NHS Hospitals

Action for Sick Children Scotland (ASCS) is seeking the views of Parents and Carers, whose children have had one or more stays in a Scottish NHS hospital during the last 3 years. We want to know about the food provided to the children and about the meal time experience in general.  The information provided will be used to help our work towards getting the best possible nutrition and meal time experience for children and young people in hospital. 

This short survey which can be accessed on the following link

https://www.surveymonkey.com/s/D77SGPL

The survey should only take about ten minutes to complete and is open until 26th June 2014.

T18 dissertation

This research has been completed. 

UCL MSc student Kelly Bluett is looking for UK families and professionals for her study exploring the information needs of parents who have received a diagnosis of Trisomy 18.  This study also seeks to explore the attitudes and views of health care professionals towards Trisomy 18 and its management.  

Parents please click:  https://opinio.ucl.ac.uk/s?s=33077  

Professionals, to take this short survey, please click:https://opinio.ucl.ac.uk/s?s=33152

 This study is open until midnight Dec 11, 2014. The final report will be available mid-March 2015.

For further information contact  rmjlkab@live.ucl.ac.uk  

SOFT UK Siblings Project

This research has been completed.

SOFT UK has commissioned Coventry University to undertake a piece of research on how siblings of a brother or sister with a life-limiting condition can best be supported. The project will include siblings born both before and after the death of their sibling. Interviews will be conducted over the phone. All the people interviewed will be over the age of 16, and will include both siblings and parents.

Parents' experiences following a T18 diagnosis

Meghan Linscott, Trainee Health Psychologist at the University of Derby, is exploring how parents cope psychologically when their child receives a diagnosis of trisomy 18. Meghan is surveying parents who have, or have had, a child born with full, mosaic or partial Edwards Syndrome (Trisomy 18). Link to the survey.

Anaesthetic in Scottish NHS hospitals

Action for Sick Children Scotland (ASCS)  is seeking the views of Parents and Carers, Parents and Carers, whose children have had an anaesthetic in a Scottish NHS hospital. The information provided will be used to work towards getting the best possible experience for children and young people in hospital. 

https://www.surveymonkey.co.uk/r/ZRC99HZ

The survey should only take about ten minutes to complete and is open until Monday 28th March 2016.