Take part in research

Life skills training

A PhD student would like to invite you to take part in a new research study with the title Passport to Life: Investigating the need for life skills training among young people with autism organized by Medway School of Pharmacy, at the University of Kent.        The aim of this study is to investigate the views and experiences of parents/carers in relation to life skills training that is available to young people with Autism Spectrum Disorders (ASDs).        This is an online survey and is aimed at:
Parents/carers of young people with Autism Spectrum Disorders (ASDs) in the age groups 11-18 years who are considered “high functioning”.   They could attend mainstream schools, which is often the case, but could alternatively attend special needs schools that cater for more able students.
Click icon for introduction and survey form.       The survey will take around 15 minutes to complete and is completely anonymous.

Cambridge research

Would you like to register with the Autism Research Centre (ARC) at the University of Cambridge, headed by Professor Simon Baron-Cohen.          They aim  to understand the biomedical causes of autism spectrum conditions, and develop new and validated methods for assessment and intervention.         They are looking for adults and parents of children with an autism diagnosis.          See:  flyer       letter       website
Click twitter icon for updates about taking part.



Healthy ageing

Project title:  Developing a Health Needs Assessment for People living with neurological conditions in Lincolnshire – Carers.          Click icon to view and maybe fill in.

Email from Mr Thomas George tgeorge@lincoln.ac.uk at the University of Lincoln,1st Dec 2017.        We have been asked by the Public Health Division, Lincolnshire County Council to undertake a health needs assessment for people with neurological conditions.       The purpose of a health needs assessment is to understand the current health needs and health inequalities of people with neurological conditions in Lincolnshire; how effective current service provision is in meeting their needs, and to identify gaps and limitations in service provision, as well as examples of effective provision and good practice.

As part of this project, we are seeking the views of key stakeholders and would like to invite you to take part in an on line survey.        The survey will ask you some questions about your role as a carer for someone living with a neurological condition.        Further information about the project is detailed below in the ‘project information sheet’, as well as information about what you should do next if you decide to take part.

Sleep study

The University of York is running a project charting the early sleep patterns of infants at risk of developing Autism Spectrum Disorders.             If you have a baby with an older brother or sister with Autism they would love to hear from you.         This project explores sleep patterns in infant siblings through the use of sleep diaries.             Click icon for poster.            See also official project information.             The university will provide all items and materials as needed.               (Posted Oct 2017)

Child study

Are you a woman with autism?        Are you pregnant?          Click icon for the study poster.       Here is the study summary.        See also the website associated with their email address.

Carer technology

Would you be interested in taking part in a 3 month trial of a technology package to assist in co-ordinating home care?

1.      It provides the person being cared for with greater social interaction with their friends and family as well as reminding them to take their medication.
2.      Gives Carers the peace of mind with information about the person they are caring for such as through movement sensors confirming that they have visiting the toilet, opened the fridge door or medicine cabinet.         This is done by setting up various sensors and equipment, such as blood pressure monitors that can be linked to the technology.

See:   Technology       Letter        Form         Everyone website – emerging from Lincolnshire Carers & Young Carers Partnership (LCYCP)

Non-compliance behaviour

Button - playCould you spare some time for a telephone interview for a research project.            Click button for a video introduction.

Here is a little bit of background information about the project, that could be posted up to accompany the video:

We are researchers at the School of Psychology, Queen’s University Belfast and our project focuses on children’s non-compliance behaviour.
Non-compliance behaviour is when a child:

  • Ignore your requests…
  • Tries to talk their way out of doing things
  • Directly defies you
  • Says “no” a lot

Almost all children show some of these behaviours, but some children with autism seem to struggle especially with these sorts of behaviours.
Surprisingly little research has been carried out on why some children particularly struggle with non-compliance.         We aim to find out more about the factors that can influence the non-compliant behaviour children show so that we can start to develop bespoke helping strategies specifically designed for these behaviours.

We would like to hear from you if you are a caregiver of a child aged 5-11 years old who frequently shows the behaviour described above, and who behaves like this across different settings and where you feel the behaviour may be having a negative impact on the child and/or on the family. 

In this initial study, we would like caregivers to take part in an interview over the phone to talk about the behaviour.       Everyone who takes part will receive a feedback report about what we have found when this initial study is finished and we will update any families who wish with information about our ongoing progress in this project and future participation opportunities.

If you are interested in hearing more about the study and would like more information, please contact:

  • Katherine Grady:          kgrady01@qub.ac.uk                07926 076 790 
  • Luke McCann:               lmccann32@qub.ac.uk
  • Kate Woodcock:            k.woodcock@qub.ac.uk            028 9097 4886

The interviews are due to be completed by the end of June 2016.

Self-Injurious Behaviour

This was an on-line survey.          The project leader said, We have developed two new questionnaires which measure beliefs about suicide and nonsuicidal self-injury.            Dr Andy Siddaway

See also  Support sheet                Dr Andy Siddaway               Stirling University