Parents Survey for 4th year Occupational Therapy Student, NUIG

For the survey click HERE

Leaflet

An exploration into the quality of life among parents of children with attention deficit hyperactivity disorder (ADHD) in Ireland

You are being invited to take part in a research study to be carried out in 2022 by Laoise Miley, a final year Occupational Therapy student. Thank you for considering participating in this research project. Before you decide whether you wish to take part, you should read the information provided below carefully and, if you wish, discuss it with your family, friends or GP (doctor).

Take time to ask questions – don’t feel rushed and don’t feel under pressure to make a quick decision. You should clearly understand the risks and benefits of taking part in this study, so you can make a decision that is right for you. This process is known as ‘informed consent.’ You don’t have to take part in this study. If you decide not to take part, it won’t affect your future medical care. You can change your mind about taking part in the study any time. Even if the survey has started, you can still opt out. You don’t have to give us a reason. If you do opt out, rest assured it won’t affect the quality of treatment you get in the future.

As part of the study, you are invited to take part in a once off electronic questionnaire, lasting approximately 15 minutes. This questionnaire will be anonymous i.e., no names, email addresses, phone numbers etc will be collected or stored.
What is the purpose of this study?
The purpose of this study is to explore the quality of life of parents to children with a diagnosis of with ADHD, living in Ireland. ADHD is a neurodevelopmental disorder and is one of the most prevalent childhood disorders worldwide, characterised by its core symptoms of inattention, hyperactivity, and impulsivity. We hope that including parents with children of various ages and backgrounds will allow us to investigate the link between raising a child/children with ADHD, and quality of life for parents.

Who is organising/ funding the research?
This study is a project being completed by Laoise Miley and supervised by Manigandan Chockalingam. As an undergraduate final year project, this research is not receiving funding.

Why am I being asked to take part?
You have been asked to take part as you are:
• A parent of a child with a diagnosis of ADHD
• Your child is between the ages of 4 and 18
• You are living in Ireland.
Unfortunately, you cannot take part in this study if:
• Your child has an additional diagnosis e.g., Autism Spectrum Disorder (ASD)

What can I expect if I agree to take part?
• Firstly, we will ask you to read this leaflet carefully.
• You are free to contact us if you feel you need more information.
• Then if you are happy to take part, you will be asked to consent to taking part.
• You will be asked to fill out an online questionnaire anonymously (attached in this email). No names, email addresses, phone numbers etc will be collected or stored.
• The questionnaire should take on average 15 minutes.
• The results will then be analysed anonymously.

What if I do not want to take part?
You are free to decline taking part in this study, by simply not completing the questionnaire.

What are the benefits for me in taking part?
No direct benefits will come to participants; however, participants will have the opportunity to contribute to understanding how raising a child/ children with ADHD impacts quality of life of parents in Ireland.

What are the possible risks of taking part?
There is minimal risk that you may become upset when answering the quality of life questionnaire. We ask you only to share information you are comfortable sharing. There are some supports, and services mentioned at the end of this document, if necessary.

What do I need to know about confidentiality?
Researchers will have no access to medical notes. Names/ phone numbers/ addresses will not be collected or stored. Your information will be anonymous and only accessible by the researcher and research supervisor. Results will be included in a final year project thesis, and potentially published, however again, you will not be identified in the writing up of this research.

What do I need to know about data protection?

It is important that you understand how your personal information will be gathered and used for this study. We are required by law to give you all this information before you make up your mind about whether to take part in this research or not.

1. Why do you need my personal information?

We will collect your personal information anonymously and will be using your information under two legal bases as defined by the General Data Protection Regulations 2016: Because we feel this study is important for scientific research (Article 9(2)(i)) and because we feel the information you provide could be important for the public interest (Article 6(1)(f))

2. Who will have access to my information?
Only the two researchers; Laoise Miley and Manigandan Chockalingam.

3. How long will you keep my information?

Your personal details e.g., name, phone number etc. will not be collected. We will keep some information e.g., your anonymous questionnaires, for a period of 7 years. But again, you will not be identifiable from these.

4. Can I withdraw?
You can withdraw from this study at any time without giving a reason. However, once you complete and submit the questionnaire online, you will be unable to withdraw as the data will have been processed and mixed with that of others. As the questionnaires are anonymous, there is no identifiable information. You can contact the researcher at [email protected] if you have questions about this.

5. What are my rights?
1. You have the right to lodge a complaint with the Data Protection Commissioner if you are dissatisfied.

2. You have the right to restrict or object to processing of your information. But this would make it difficult for us to complete this research.

3. You have the right to have any inaccurate information about you corrected or deleted. For example, you have the right to look over and edit your questionnaire before submitting it anonymously.

4. You have the right to ask for any of your information in a readable format.

 

6. How will you use my information?

1. There will be no automated decision-making or profiling of your personal information in this study. This means that we will not use your personal data to make any predictions about you.

2. Your information will not be processed for any other reason than for this study. And it will not be transferred to any other country or organisation.

3. Your information will be held on a password-protected file storage system. Only the researcher has access to this.

Consent to Future Use
The information you give in this study will be held anonymously for a period of up to seven years as per NUI Galway retention policy. All identifying details will have been deleted from this information. This information will not be used in future studies.

Where can I get further information?
If you have any further questions about the study or if you wish to opt out of the study, there will be no repercussions on you.

If you need any further information now, or at any time in the future, please contact:
[email protected] or [email protected]

 

Supports and services

ADHD Ireland

Address: Carmichael House, North Brunswick Street, Dublin 7

Phone: (01) 874 8349

Email: [email protected]

Irish National Council of ADHD support groups

Website: https://www.incadds.ie/support-groups.html

Address: Galway, Ireland.

Phone: (091) 798266

Email: [email protected]

 

Young Minds

Website: https://www.youngminds.org.uk/parent/a-z-guide/

Children and Adolescent Mental Health Services (CAMHS)

Phone: 1800 700 700 / 00 353 1 240 8787

Website: https://www.hse.ie/eng/services/list/4/mental-health-services/camhs/