Information Sheet for Participants

Survey now closed

My name is Natasha Browne and I am currently completing my Master’s Thesis in Psychology. My supervisor on this project is Ian Evans, Professor, Massey University.

My thesis project is aimed at identifying the difference in quality of life for caregivers of children with Autistic Spectrum Disorder and/or an Intellectual Disability when compared to caregivers of children without these conditions. This study hopes to highlight not only areas that need addressing, but also to highlight the positive aspects of the caregiving role. We are not assuming that quality of life is in any way lessened by having a child with a disability to care for—in fact many families report a whole host of positive outcomes. However we are especially interested in your feelings about the kinds of supports and service you receive. Finding out more about how support services might be improved is one of the goals of this research project.

Participation in this study is entirely voluntary.

A brief outline of the study:

Quality of life is an area of research that has spanned many years and continues to remain in focus world wide. Research using New Zealand participants however is limited, and there are no studies that mirror the current project in New Zealand. The research and data will be collected via a questionnaire, either online or paper-based depending on your preference. This questionnaire will take around 30 minutes of your time.

How do I become a participant?

This particular survey has now closed for further submissions. I am now embarking upon analysis of the data collect. Thank you for your interest in this study.

This study is made up of two different groups:

Group One :

is a caregiver of a child aged between 6 – 16 years old with an intellectual disability and/or Autistic Spectrum Disorder

Group Two :

is a friend of the person in Group One who is the caregiver of a child aged between 6 - 16 years old without a disability

As the study is a comparative study I would appreciate your assistance in having a friend participate in the study too. For example: if you are in Group One, are you able to find a friend who can be in Group Two, and vice versa? The reason for this is that a good friend or even an acquaintance is likely to experience some of the general sources of stress as well as enjoyment as you do yourself. Thus we will be able to see how you are affected by the one thing that is very different—having a child with a disability in your home to care for. Unfortunately only pairs can be accepted when compiling the results to ensure that the research questions can be answered.

How will the researcher know who makes up a ‘pair’?

At the start of the questionnaire you will need to decide on a code word for you and your friend to use. This could be the name of a pet, your favorite cartoon character, or any other word you would prefer to use. Both you and your friend will enter the same code word on your individual questionnaires so they can be matched up in the study.

What happens after I finish the questionnaire?

A copy of the study's findings will be available at
http://psych-research.massey.ac.nz/browne/index.htm in February 2011.

The link to these results will be published in various support group websites and newsletters. If you have any questions relating to the study you can contact me via the email or mobile contact details below.

Confidentiality

Any information received will remain in a secure location at Massey University. This information will only be able to be accessed by myself or my supervisor. Data will remain stored for up to 5 years and then be disposed of in a safe manner. The only data that will be published is statistical information gathered in the questionnaire. No names or contact details of participants will be released. Participation will remain anonymous and your name will never be included on the questionnaire.

Please be aware that whilst I am employed at the local Needs Assessment Service Coordination agency your questionnaires will remain anonymous and your service will be in no way affected by this study.

Thank you…

I would greatly appreciate your participation in this study. Thank you for considering this request.

Yours sincerely,
Natasha Browne