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Participant Information Sheet/Information about the research

Title of Study: Parental compassion in intellectual disability; An exploration of the flows of compassion as a regulator of distress in response to challenging parenting events

We are inviting you to take part in a research study. Before you decide, it is important that you know why we are doing the study and what is involved. Please read the following information carefully.

What is the purpose of the study?
Parenting a child with an intellectual disability may increase parental stress. This study aims to explore how parents may respond and cope with stressful parenting events by asking them to recall a time they found parenting challenging. A coping task will be completed after recall of this event to further understand the mechanisms that are involved in parental coping. The study will be completed online via Qualtrics software.

Am I eligible to take part?
1)   If you are a parent to a child with a diagnosed intellectual disability
An intellectual disability is defined as;
The National Institute of Health and Care Excellence (NICE) criteria for intellectual disability states three core criteria of a learning disability a) the presence of “lower intellectual ability” (usually an IQ score of under 70), b) a significant impairment of social or adaptive functioning*, and c) an onset in childhood.

*Difficulties interacting with others and completing day to day tasks relative to other children their age. 

A diagnosis is usually provided by a Psychologist, Paediatrician, or a Psychiatrist. To be eligible for the study your child must have a diagnosis of an Intellectual disability.  

2)   You perceive the behaviour of your child as challenging, this may be referred to as “challenging behaviour”

Please consider the following definition of challenging behaviour;
“Behaviour can be described as challenging when it is of such an intensity, frequency, or duration as to threaten the quality of life and/or the physical safety of the individual or others and it is likely to lead to responses that are restrictive, aversive or result in exclusion.”

3)   As a result of 1 & 2 you feel there is an impact on your stress levels or psychological wellbeing.


Do I have to take part?
Participation is completely voluntary. You should only take part if you want to and choosing not to take part will not disadvantage you in anyway.

What will I be asked to do?
The following study will ask you to complete a set of baseline measures which consists of two questionnaires and you will be asked to provide some demographic information. This will not entail identifiable information. There will be a recall task of a recent parenting event and a coping task following this. Once completed you will be provided a written debrief. You will be asked to rate your emotions at several points in the study. The study should take no longer than 45 minutes.
Please be aware that the study may involve recall of a distressing parenting event, however information will be given on minimising potential distress. On the next page you will be asked to give informed consent.

Will I be paid expenses for taking part?
You will be entered into a draw to win one of four £25 pound Amazon vouchers. You will be asked to provide your email at the end of the study should you wish to be entered into this draw.

What are the possible benefits / risks of taking part?
As the study involves exploration of coping there may be an opportunity to reflect on the task and use the task in your everyday life. It cannot be guaranteed however this task is helpful to your wellbeing. You would be contributing to the research understanding in this area and this could be used for interventions to support parents who may have similar parenting challenges. As there is a recall event of a challenging parenting event this may be emotionally difficult for some parents as such this should be considered in deciding whether to partake.

Will anyone know I have taken part?
The information we collect will be handled in confidence. No one will know you have taken part due to the online anonymous nature of the study. Findings from the study will be disseminated as part of the research agenda however you will not be identified in this process.

Where will my data be stored?
The data obtained from the study will be stored securely on the university OneDrive in password protected files. Only the researcher/researchers will have access to it.

What will happen if I don’t want to carry on with the study?
As you have completed the study anonymously it will not be possible to remove the data provided, as I/we will not be able to identify you in any way. There will be an option throughout the study to withdraw by clicking a button at the bottom of the screen. Data up until that point will not be able to be removed due to the aforementioned reason.

What will happen to the results of the research study?
The project will form partial fulfilments of the requirements for the Trent Doctorate in Clinical Psychology (DclinPsy). Findings will be submitted to a peer-reviewed journal.

Who is organising and funding the research?
This research is being organised by Adam Whalley (Trainee Clinical Psychologist), Dr Mark Hudson (Assistant Professor in Clinical Psychology), and Dr Michael Baliousis (Research Clinical Psychologist).

Who has reviewed the study?
All research conducted by the University of Lincoln is looked at by an independent group of people, called a Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by a University of Lincoln Research Ethics Committee [UOL2024_16228].

What if there is a problem?
It is unlikely that this study would cause you any harm. If you have a concern or a complaint about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions.  The researchers contact details are given at the end of this information sheet.
If you remain unhappy and wish to complain formally, you can make a formal complaint through the University complaints procedure or by contacting ethics@lincoln.ac.uk.

Further information and contact details
Contact details
In the first instance: Adam Whalley- 10238752@students.lincoln.ac.uk
Dr Mark Hudson- mark.hudson@nottingham.ac.uk
Dr Michael Baliousis- mbaliousis@lincoln.ac.uk
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