Being Me

Information about the Being Me study

Participant Information Sheet (Parents / Carers)

Project title: Photovoice: Being Me

We would like to invite you and your child to take part in our research project. Before you decide whether or not to participate, we would like you to understand why the research is being conducted and what it would involve for you and your child. Talk to others about the study, including your child, if you wish. Please ask us if anything is unclear.

What is the purpose of the project?

The purpose of this project is to understand more about autistic children’s experiences of being themselves, and about times when they might feel the need to change or hide things about themselves. Sometimes this is called masking or camouflaging, however in this study we are not using any particular names as we want to know what your child thinks about it. This study is part of a broader project looking at how to measure factors that impact autistic children’s mental health and wellbeing.

Why have I been invited to participate?

You have been invited to participate because we are recruiting participants from the Bristol area and across the UK. You may have seen an advert from your child’s school or a social group, or you might have heard about the study from someone else.

We would like to recruit 10 autistic young people aged 8-15 years to take part in the study, along with their parents/carers.

Do I have to take part?

It is up to you and your child to decide whether you wish to participate in the project. We will go through this information sheet with you before you participate and answer any questions you might have. We will also talk to your child, if they would like, and answer any of their questions before you both make a decision together.

If you agree for your child to take part, we will ask you to sign a consent form on their behalf. We will also ask your child if they would like to take part before the first part of the study. If they do not agree to take part, even if you have already agreed, then we will not include them in the study. You and your child are free to withdraw at any time, without giving a reason. If you choose to withdraw, you and your child’s answers, and any photos they have shared with us, will be deleted.

If you are happy for your child to take part, but do not want to take part in the group interview yourself, that is ok. Your child can still complete their part of the study. Equally, if your child does not want you or a school staff member to be part of the group interview, we will respect their request and will not include you in the group interview.

What will happen to me and my child if we take part?

This project uses the Photovoice technique to learn more about children’s experiences. We will ask your child to take photos to tell us about times when they feel like they can be themselves, and times they feel like they need to hide or change things about themselves. We then talk to your child individually about their photos to understand more about their experiences, before facilitating a group discussion about the photos between your child, yourself, and a teacher or support worker from their school (if you and your child would like this).

Taking part in the study will follow these steps. You can choose to withdraw from the study at any point.

This will take place in-person (at your house or at the University of Bristol) or online (via Zoom), depending on what your child prefers. It will be a meeting for roughly 1 hour between the researcher, you, and your child, to explain what the project is about and how to take photos for it. You and your child will have the opportunity to ask questions. You will get to keep a copy of the information shared at this meeting, as well as a handout summarising the project to refer back to.

Your child will have three weeks to take between 5 and 10 photos related to ‘Being Me’. They can either use a smartphone or a disposable camera.

If your child wants to use a smartphone to take the photos, they can use their own phone or yours. The photos should be emailed to the researcher, either directly by your child or by you depending on your preference. You can email the photos as they are taken, or all at the end of the three weeks.

If your child wants to use a disposable camera to take the photos, we will post you a disposable camera. We will also arrange another meeting to show your child how to use the camera. Once the three weeks are up, you should post the camera back to us (in a pre-paid envelope that we will provide) and we will print physical copies. We will scan the photos into a computer and send back the physical copies for your child to keep.

After the photos have been sent to the researcher, we will arrange a time to conduct an interview with your child about the photos, for approximately 1 hour. This will be a 1:1 interview, either in-person or online depending on your preference. We will ask your child to identify their 3 favourite photos to discuss in more detail, although we may talk about all the photos they took. The questions will ask about what the photos mean to them, and what they would like other people to know from the photos. We will audio-record the interview so we can make notes later on.

You are welcome to attend the interview as well if your child would prefer this.

After the individual interview with your child, we will arrange a second, group, interview to learn more about how other people (including you) understand your child’s experiences. We will invite you and your child to an interview either online or in-person (at the University of Bristol) where we will share some of the photographs and ask you and your child what you think they might mean. This will take approximately one hour. We will audio record the discussion so that we can take notes from it later on.

If you and your child agree, we will also invite a staff member from your child’s school to participate in this interview. This is to learn more about how your child’s experiences might differ at home and at school, and so we can identify the best ways to support autistic children at school. If you agree to this, we will ask you to identify a staff member who you would like to join the interview. We will give you some information about the study to pass on to them, and ask them to contact us directly to find out more about the study.

You and your child can still take part in this part of the study if you do not wish to invite their teacher/staff member to take part, or if no members of school staff are willing to do so.

Once all the interviews are complete, we will arrange an Art Gallery Exhibition of photos from the study. All participants will be asked to choose a photo to include in the exhibition, which will be held at the University of Bristol. The exhibition will run for one afternoon, and a digital version with copies of the photos will remain on the University of Bristol website for three months. The exhibition is a chance to thank you and your child for taking part in the project, and to share your child’s experiences and creativity with other people. Your child will be able to choose a pseudonym to use instead of their real name, to go next to their photo. We will pay for your travel costs to attend the exhibition, and provide refreshments for everyone.

We will ask you and your child to give permission for us to share their photos with other people before the exhibition. If you do not agree to this, you are still welcome to take part in the study and to attend the exhibition, and we will not share any photos that your child took in the exhibition or online.

What are the possible disadvantages and risks involved in taking part in the project?

Your child will be asked questions about times that they feel they have had to hide parts of themselves, which might make them feel uncomfortable or sad. They will be reminded that they do not have to answer this question if they don’t want to. We do not foresee any other risks or disadvantages involved in taking part in the project for you or your child.

What are the possible benefits of taking part?

By taking part your child will develop and practice their photo-taking skills, and we hope they will enjoy sharing their perspectives with us. You will also be invited to an in-person Art Gallery Exhibition of photos from this study, with refreshments provided and the chance to meet other families who have taken part in the study.

We hope that the results of this project will help us learn more about how to support autistic children to feel comfortable and confident in themselves.

Will my child’s participation in this project be kept confidential?

All information collected about you and your child during the course of this project will be kept strictly confidential. Any information with your name(s) or address(es) on it will be removed, so that you cannot be recognised. All answers you and your child give during the interview will be kept confidential, unless we are concerned that they or someone else may be at risk of harm, in which case we may need to share their information to keep everyone safe.

We may share some photographs that your child took with other people, for instance in academic conferences or research papers, however we will make sure that nothing identifiable is included in these photographs, and we will ask you and your child to agree to the use of each photograph before it is shared.

We will collect your data through research notes and audio-recorded interviews. The data we will collect about you that will be kept confidential will be:

●      Your name and contact details (so we can contact you about the study).

●      Your child’s name, age, gender, ethnicity, what kind of school they go to, and information about their autism diagnosis (so that we know more about the children taking part in the study).

We will record both the individual interview with your child after the photos have been taken, and the group interview with yourself and your child’s teacher. We will create a written transcription of each interview so we can analyse this. All personally identifiable information (such as names or places) will be removed from the transcription, and we will use a pseudonym chosen by your child instead of their real name, as well as pseudonym for yourself that is chosen by you.

Your personal data, including the copies of your child’s photos that are sent to us, will be stored securely on the University of Bristol OneDrive server. They will only be accessible by the researcher. Your data will be stored until December 2024, when it will be deleted, with the exception of the photographs included in the Art Gallery Exhibition. These will be stored on the University of Bristol website until October 2023, and will then be deleted.

What will happen to the results of the research project?

We will share the results with other people by presenting at conferences and writing academic articles. We will share the photos at an Art Gallery Exhibition in Bristol and on the Bristol University Website. We will produce a summary of the research findings for you and your child as well. You and your child will not be identified as a named individual in any report, summary, or output of the study.

Who is organising and funding the research?

The research is being organised by Laura Hull, who is based at the Centre for Academic Mental Health in the Department of Population Health Sciences at the University of Bristol Medical School. Laura has worked with the Masking Research Collective (a group of autistic young people, adults, parents, and people who work with autistic young people) to develop this research project. The research is funded by the Elizabeth Blackwell Institute at the University of Bristol and the Rosetrees Trust.

Who has reviewed the study?

The study has been reviewed by the Faculty of Health Sciences Research Ethics Committee at the University of Bristol.

Further information and contact details

Please discuss the study with your child and see if they are interested in taking part. If you have any questions or would like to discuss the study further, please contact Laura at laura.hull@bristol.ac.uk or by telephone: 0117 455 8631.

If you and your child are interested in taking part, we will arrange a brief telephone call, video call, or email chat to make sure all your questions have been answered, and to go through the consent form together. Please contact Laura to arrange this.

If you have any remaining concerns about your participation in the study you can contact the Faculty of Health Sciences Research Ethics Committee via the Research Governance Team at research-governance@bristol.ac.uk.