Research

Leave a comment Posted on Patient Talk, Research

Does your child use augmentative and alternative communication? Then please help with a short survey!

Massey University Speech and Language Research

Massey University Speech and Language Research

The Barriers and Facilitators to Parents Using Aided Language Modelling

Researcher Introduction

I am Alicia Posthuma, a fourth year honours student enrolled in the Bachelor of Speech and Language Therapy degree at Massey University. This project is being supervised by Associate Professor Helen Southwood and Dr. Sally Clendon.

Project Description and Invitation

I am conducting a survey to explore parents’ perceptions of the barriers and facilitators to using aided language modelling with their children who use augmentative and alternative communication (AAC).




Children who use AAC are unable to use speech as their primary mode of communication. Instead, they rely on the use of some type of AAC system such as a communication board or an electronic communication device. Aided language modelling refers to a technique in which the communication partner points to symbols/pictures on the child’s communication system while also producing corresponding spoken words during conversations. Research indicates that in order for a child to learn to use his/her AAC system competently, it is important for the child to first see other people model the use of their system frequently throughout the day (aided language modelling).

There is currently little known about parents’ perceptions of using aided language modeling; therefore, your experiences and opinions will be valuable.

I would be very grateful if you would consider participating in the survey for this project.
Participant Identification and Recruitment

I am recruiting parents who:

  • Have children between the ages of 0 and 12 who use AAC.
  • Currently live in New Zealand

I have approached the Talk Link Trust and parent social media networks to request their assistance in distributing information about this project.

Project Procedures

The online survey is expected to take no longer than 10 to 15 minutes and can be completed at a time that is convenient to you. If you think you might be interested in being part of this project, you can complete the survey online by following the link below. The survey is anonymous. There will be no direct benefits or identified risks to you participating. By choosing to complete the survey, it will be assumed that you consent to your responses being used in the research project.

Data Management


Participants’ data will be kept completely confidential and no identifying information will be requested, Participants will not be able to be identified by anyone even the researcher. Data collected will be analyzed and interpreted solely for the purposes of the present study. Data will be stored on a password protected hard drive at Massey University. Data will only be accessed by the researcher and the project supervisor. After 5 years the data will be deleted. Copies of the research report will be available on request.

Participant’s Rights

You are under no obligation to accept this invitation.  If you decide to participate, you have the right to:

  • Ask questions about the study.
  • Decline to answer any particular question in the survey.
  • Please remember that completion of the survey implies that you are consenting to participate.

Project Contacts

Please contact the researcher and/or supervisors if you have any questions about this project.

Ethics

This project has been evaluated by peer review and judged to be low risk.  Consequently, it has not been reviewed by one of the University’s Human Ethics Committees.  The researchers named above are responsible for the ethical conduct of this research.

If you have any concerns about the conduct of this research that you wish to raise with someone other than the researchers, please contact Dr Brian Finch, Director, Research Ethics, telephone 06 356 9099 x 86015, email humanethics@massey.ac.nz.

Thank you for considering this project.

Please click here to complete the survey.

Leave a comment Posted on Disability, Research

Do you feel (have you felt) stigma because of a medical condition?


Sunny Beach - Bulgaria

Sunny Beach – Bulgaria

When our son was diagnosed with autism (just over six years ago) it took me months to tell many of my closest friends. Why? Because I was at the time ashamed of the fact our beautiful (and yes at times difficult) son had such a disability.

I don’t feel that now but if I am truthful I do occasionally feel a pang of regret about things that i thought I would do with him but now never will. Though in fact you don’t need a child with a disability to feel that.

So I was wondering am I alone?

Have others felt shame and stigma because of a medical condition?

If you have it would be great if you would share a bit more about your story in the comments section below.

Also we have set up a poll on the subject below. It would be great if you could take part.

Many thanks.

PS There is a reason for the picture of Bulgaria. But that is for my wife and I!


Leave a comment Posted on Patient Talk, Research

Celebrate International Clinical Trials Day – find out how here!


This year Leicester’s Hospitals are doing something slightly different to promote research. They are

James Lind - the father of clinical trials

James Lind – the father of clinical trials

going out into the community.

International Clinical Trials (ICT) Day is an annual event held on 20 May. The date was chosen in recognition of James Lind, a naval surgeon who conducted the first recorded clinical trial on 20 May 1753. Members of Lind’s crew were suffering from Scurvy, which is a disease that causes swollen, bleeding gums and previously healed wounds to open. Lind created a trial where he divided the sailors into different groups and gave them specific items to eat and drink. The group that had been given oranges and lemons had practically recovered in just five days, leading to his theory that citrus fruit – vitamin C – cured the disease.

ICT day was established to celebrate clinical research across the world and to provide a focal point to promote clinical research to members of the public.

So Leicester’s Hospitals got in touch to tell us what they plan to do. Which include


•Opening our doors to the Clinical Research Facility at Leicester Royal Infirmary. Come in, take a tour and take part in a mock trial to show how a research study works in practice
•Visit our stand in the restaurant to talk about children’s research
•Treat yourself to culinary delights with a bake sale to help raise money for cancer research in the Osborne building
•And visit us in Beaumont Leys!

Would you consider taking part in a clinical trial? Why not take part in our poll on the subject here.

If you know of any events to celebrate

Leave a comment Posted on Autism, Research

What should be the purpose, in your view, of autism research?


Autism research

Autism research

One thing I should have learnt over the years is never to discuss controversial matters on the internet and social media in particular.

To be fair I always do forget and am always surprised and the sewage that gets dropped on my head . Most especially when I have the temerity to ask questions where opinions are strong but there may be no right or wrong answer.

So with that in mind I have decided to enter another difficult area for the autism community.

I’d like to look at the question of what should be the objective or purpose of research into autism spectrum disorder (ASD)?

It strikes me that there are two main schools of thought on this matter (but there could be others of course). First there is the search for a “cure” for autism. The other is that we should focus our energies if developing new and more effective therapies for ASD.

I am very interested in finding out what you think on the matter.

We have set up a poll below and it would be great if you could take part!

Secondly we would love it if you could share your suggestions for new autism research and/or your views on current autism research in the comments section.



Please remember that views on questions like this really do vary. So we ask that you treat other readers and commentators with decency and charity!

Many thanks in advance.

Leave a comment Posted on Autism, Research

Xavier University if looking for female caregivers of children with autism for some online research.


Xavier University Autism Research

Xavier University Autism Research

It seems that these days I am writing an introduction to a blog post like this. As I nearly always explain one of the main objectives of this blog is to promote academic research into autism. Not surprising since I sent 20 years in market research and have a son with ASD.

In this case Emily Schreiber , a doctoral student at Xavier University, is conducting some research with female caregivers of children with ASD. The survey is online and lasts around 30 minutes. If toy do complete the study you will be entered into a prize draw for a $50 Walmart voucher!

Of course giving this information is voluntary. No identifying information will be linked to your responses if you have any concerns.

Schreiber shared  ” Are you a female caregiver of a child with autism? We need to hear about your experience!

We are conducting a study about social support experienced by mothers raising a child with an Autism Spectrum Disorder.

Participation in this study will be anonymous and will be of no risk or benefit to you.”

Please click on the following link ato take part in the sudy

https://www.surveymonkey.com/s/6W2FDCY

If you have any queries Ms Schreiber can be contacted at schreibere@xavier.edu.

Thanks very much for your interest in advance!