Page 1: Participant Information Sheet

Participant Information Sheet

 

Research Question:

Exploring Sexuality Knowledge and Experience of Romantic Relationships in Adolescents and Young Adults with Autism Spectrum Disorder, Attention-Deficit/Hyperactivity Disorder, and Autism Spectrum Disorder co-occurring with Attention-Deficit/Hyperactivity Disorder. Perspectives from Caregivers, Educational Professionals and Adolescents and Young Adults

 

I would like to invite you to take part in my research study. Before you decide you need to understand why the research is being done and what it would involve for you. Please take time to read the following information carefully. Feel free to ask questions or contact me if anything you read is not clear or would like more information. Take time to decide whether or not to take part.

 

What is the main purpose of this study?

To investigate your perspectives on:

  • experiences of romantic relationships and dating of your child (13-25 years old) who is neurotypical (has not been diagnosed with any neurodevelopmental conditions) or has the diagnosis of ASD, ADHD or ASD co-occurring with ADHD
  • sexuality knowledge and sexuality understanding of your child (13-25 years old) who is neurotypical (has not been diagnosed with any neurodevelopmental conditions) or has the diagnosis of ASD, ADHD or ASD co-occurring with ADHD
  • sexuality education your child (13-25 years old) who is neurotypical (has not been diagnosed with any neurodevelopmental conditions) or has ASD, ADHD, ASD co-occurring with ADHD receives/has received in their school/college
  • speaking about sexuality, dating and romantic relationships with your child (13-25 years old) who is neurotypical (has not been diagnosed with any neurodevelopmental conditions) or has ASD, ADHD or ASD co-occurring with ADHD
  • support you have received in order to enhance your skills at speaking about sexuality, dating and romantic relationships with your child (13-25 years old) who is (has not been diagnosed with any neurodevelopmental conditions) or has ASD, ADHD, ASD co-occurring with ADHD
  • support you would like to receive in order to enhance your skills at communicating about sexuality, dating and romantic relationships with your child (13-25 years old) who is (has not been diagnosed with any neurodevelopmental conditions) or has ASD, ADHD, ASD co-occurring with ADHD

 

Why have I been invited?

You are a caregiver of an individual between 13-25 years old who is neurotypical (has not been diagnosed with any neurodevelopmental conditions) or has a diagnosis of ASD or ADHD or ASD co-occurring with ADHD.

 

Do I have to take part?

Taking part in this study is completely voluntary hence you can decide whether you would like to participate in it or not. Note, you are free to withdraw from the research within three weeks’ time from the completion of the questionnaire. After three weeks’ time, the data analysis will have begun and no removal from the study will be possible. You may request the withdrawal from the study by notifying the researcher about it via the university email. Any data collected from you, will be destroyed from the researcher’s files.

 

What will happen to me if I take part?

You will be asked to complete a questionnaire, which comprises 39 questions. It may take 15-30 minutes to complete it.

 

What are the disadvantages and risks of taking part?

This project may include highly sensitive questions (note, you may leave questions which you regard too sensitive unanswered), thus there is a risk of experiencing psychological discomfort. You may stop completing the questionnaire at any point if you feel distressed or too uncomfortable to continue. A list of independent support services is given at the bottom of this questionnaire in case you would need professional assistance.

 

What are the possible benefits of taking part?

The researcher cannot promise the study will help you, however, your participation will contribute to the better understanding of the importance of sexuality education for young individuals with ASD, ADHD, and ASD co-occurring with ADHD. This may benefit mental health services, health education and the criminal justice system.

 

What if there is a problem?

Should you have any concerns about the research, please do not hesitate to contact the researcher Magdalena Smusz PhD Candidate (M.P.Smusz@edu.salford.ac.uk) and she will do her best to answer your questions.

Alternatively, you may contact the supervisors: Dr Clare Allely (c.s.allely@salford.ac.uk), Dr Amy Bidgood (a.bidgood@salford.ac.uk) or Dr Mariyana Schoultz (M.Schoultz@salford.ac.uk).   Complaints should be addressed to Professor Andrew Clark, Chair of the Health Research Ethical Approval Panel, Allerton Building, Frederick Road Campus, University of Salford, Salford, M6 6PU. Tel: 0161 295 4109. E: a.clark@salford.ac.uk

 

Will my part in the study will be kept confidential?

It will be ensured that all data and information provided on the questionnaires will be strictly confidential and the privacy of the participants will be respected according to the Data Protection Act 1988*.  However, the questionnaire will be anonymous, therefore you are not asked to provide your name on it. Data will be collected anonymously, and you will receive a receipt code from the online survey. If you would like to remove your data from the study, you will be asked to provide the receipt code. You should notify the researcher about it via their university email address. Hard copies of data will be stored in a locked drawer, within a locked room on university premises. The researcher and the supervisors will be the only persons having access to your data. Any data transported onto computer discs, CD’s, and USB memory sticks, will remain anonymous and will be encrypted to protect against loss. Data will be stored and archived for a minimum of 3 years, after the graduate award has been made, to allow verification of data from external sources if necessary.

All data will be anonymous; therefore, it will not be possible to identify you in any disseminated output.

 

What will happen if I don’t carry on with the study?

You are free to withdraw from the study within three weeks from completing the questionnaire. Your data will be removed and not included in any disseminated output. There will not be any further consequences due to your removal.

 

What will happen to the results of the study?

The results of the study will be used to complete the research question and write in a PhD dissertation. Additionally, results might be shared in conference presentations and journal articles.

 All your data will remain anonymous. The results will be seen by the supervisors. If you wish to see the results, you will be able to do so on the completion of the research. You will need to contact the researcher via their email address and request the copy of the results.

 

Who has reviewed the project?

The research project has been reviewed and approved by the Research, Enterprise and Engagement Ethical Approval Panel.

 

The list of independent organisations in the UK:

 

Young Minds

 

YoungMinds - children and young people's mental health charity

 

Call for free on 0808 802 5544 (9:30am - 4pm, Mon - Fri)

 

Mental Health UK

 

Supporting young people - Mental Health UK (mentalhealth-uk.org)

 

Tel. Nr 0121 522 7007 (10am-4pm Mon-Fri (excluding bank holidays)

 

 

Brook : YOUR FREE & CONFIDENTIAL SEXUAL HEALTH & WELLBEING EXPERTS

 

Brook – Healthy lives for young people

 

Victim Support call 0800 123 6600 / online chat (all-age)

 

 

Relate (the relationship people)

 

Help for Children & Young People – Family & Relationship Help | Relate

 

Contact us | Relate

 

SupportLine is particularly aimed at those who are isolated, at risk, vulnerable and victims of any form of abuse.

 

 

Helpline: 01708 765200 (hours vary so ring for details)
 

Admin: 01708 765222
 

Email: info@supportline.org.uk

 

Manchester City Council: Sexual Health

 

Sexual health | Sexual health | Manchester City Council

 

To report abuse, neglect, or a vulnerable person at risk:


0161 234 5001

 

Fresh4Manchester

 

Home - Fresh4Manchester

 

CALL US NOW ON 0161 701 1555

 

National Autistic Society. Manchester:

 

https://www.autism.org.uk/services/england/manchester.aspx

email: supportercare@nas.org.uk.

tel.nr: 0808 800 4104. or: 0808 800 1050.

 

CABA Helping People with Autism:

https://www.caba.org.uk/help-and-guides/information/support-people-autism

email: enquiries@caba.org.uk

tel.nr:  +44 (0) 1788 556 366

 

UKAP The UK ADHD Partnership:

https://www.ukadhd.com/what-is-ukap.htm

email: addup@addup.co.uk

 

MADDchester:

http://www.maddchester.com/

email: contact@maddchester.com

 

STOP IT NOW; Helping Prevent Child Sexual Abuse:

https://www.stopitnow.org.uk/

Tel.nr: 0808 1000 900

STOP IT NOW is a charity in the UK which offers information and support for individuals who may have experience of illegal online sexual behaviour involving children (e.g., any type of pornography) and who would like to receive support for how to change these behaviours. The charity also provides support for families and friends and of these individuals; additionally, it helps people cope with difficult emotions and the professionals who work with these groups.

 

 

Further information and contact details:

Should you require any further information please contact the primary researcher:

Magdalena Smusz (M.P.Smusz@edu.salford.ac.uk)

Alternatively, you may contact the supervisory team: 

c.s.allely@salford.ac.uk
a.bidgood@salford.ac.uk
M.Schoultz@salford.ac.uk

 

* The UK Data Archive is a national centre of expertise in data archiving in the United Kingdom. It houses the largest collection of digital data in the social sciences and humanities in the UK. It is certified under the Data Seal of Approval as a trusted digital repository (https://www.data-archive.ac.uk/).

 

 

 

 

 

 

Consent Form

 

 

Exploring Sexuality Knowledge and Experience of Romantic Relationships in Adolescents and Young Adults with Neurodevelopmental Disorders. Perspectives from Caregivers, Education Professionals and Adolescents and Young Adults 

 

 

Please tick the appropriate boxes (YES -Y; No-N)

 

 

Taking Part

 

 

I confirm that I have read the information sheet dated.................... (version............) for the above study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily.                             

Y

N

I understand that my participation is voluntary and that I am free to withdraw from the study at the latest three weeks after completing the questionnaire, without giving any reason.  However, after that time, the withdrawal will not be possible any longer due to the researcher will have begun the data analysis. The researcher should be informed about the withdrawal via the provided email address: (M.P.Smusz@edu.salford.ac.uk)

Y

N

I understand that the information collected about me will be used to support other research in the future and may be shared anonymously with other researchers.

Y

N