Version 3.0: 14–10-24

Title of Study: Family Wellbeing, Social Support and Caregiving for Autistic Children: Insights from Ethnic Minorities, and Other British Families in the UK

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.

The research, which constitutes of a PhD project, aims to investigate the experiences of caregivers, and to explore how social support (formal/informal) can enhance their caregiving experiences and improve overall family well-being. As a primary caregiver of an autistic child, we kindly request your participation. A Primary Caregiver is a family member (e.g., parents, grandparents), relative (e.g., siblings, cousins), friend, neighbour who provide unpaid care. The study will be conducted online via a survey, where you will respond to a set of questions using a Likert scale. If you're interested, you can sign up for the qualitative interview later.

You are being invited to participate because you are the primary caregiver (parent, siblings, grandparents, cousins, aunt/uncle, neighbour, friend) of an autistic child aged between 3-13 years, your insights are valuable. Other caregivers who are part of this study are approached through various online social media platforms.

Participation in this study is entirely voluntary. You should only take part if you want to and choosing not to take part will not disadvantage you in anyway.

If you agree to take part in the study, please indicate your agreement by ticking the consent statement in the eConsent form. This signifies your willingness to be part of the study. The survey questionnaire will take 20 minutes to complete and can be done in multiple sittings. Data collection will focus on some demographics and your experiences of caring for your child. You are entitled to withhold any information that deem personal, or you prefer not to disclose. Additionally, there will be questionnaires on caregiving experiences, social support, coping, and family quality of life.

Content warning: As the study will talk about mental health issues, if it causes you distress, it is advised that you do not participate.

At the end of the survey, you will be asked if you are interested to be part of the interview study. The primary objective of the qualitative study is to gather data regarding caregivers’ quality of life and facilitators and barriers in accessing support services (impact on psychological health, physical health and financial implications, impact on family life, formal/informal social support, coping strategies use, educational support, role of culture and religion, and future concerns of caring). The interview will be conducted online/in-person, and your responses will be recorded for transcription. The interview will take approximately 45 minutes and will be done in one sitting.  

As a token of appreciation for your time, participants who complete the interview will receive a 10 pound Amazon voucher.

As this is an exploratory study so the researcher is unaware of the study’s outcome. The study poses minimum risks to participants and doesn’t aim to cause harm. The potential benefit lies in contributing to our understanding of caregivers' experiences and exploring how social support can enhance the caregiving experience and improve overall family well-being. However, if you feel distressed by questions pertaining to caregiving, you are advised not to participate in the study and may freely withdraw from the survey at any time. For the interview part, it might be upsetting or distressing to discuss caregiving experience and support networks so if you become upset, you may skip any questions you wish or even end the interview.

The University of Lincoln (UoL) based in the United Kingdom, sponsors this study. As the data controller, UoL will utilize information from you to conduct this study while ensuring proper handling of your data.

The research team will keep your personal information confidential and secure. Certain individuals from UoL may review your research records to verify the accuracy of the research study. The people who analyse the information will not be able to identify you or access your contact details.

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

The questionnaires will remain anonymous, with no identifiable details retained. Consequently, the complete data set, including ethnicity and health information, will be kept collectively for a minimum period of five years before being permanently deleted. For interviews, contact details will be collected and they will be stored separately from the transcripts and this information will be deleted upon completion of the interview.

You are free to withdraw from the survey at any point by exiting the browser, without having to give any reason, in this way your responses will be deleted. However, if you have completed the survey anonymously it will not be possible to remove the data provided, as we will not be able to identify you in any way.

If during the interview you become upset, then you may skip any questions you wish or even end the interview. If you choose to withdraw from the study, the information you have given us up to this point will be deleted/destroyed. However, once the anonymised data set has been created it will not be possible to remove your anonymised data from the analysis, up to 2 weeks after the interview is acceptable.

The study is part of a PhD dissertation. Participants interested in obtaining a summary of the findings can contact the researcher via email after December 2026, and the summary of published results will be shared with you.

This research is being organised by Anum Farooq at the University of Lincoln and is part of PhD dissertation.

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 rights, dignity, and wellbeing. This study has been reviewed and given favourable opinion by a University of Lincoln Research Ethics Committee [Ethics reference number: 17776].

It is very 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.

Niko Kargas – Nkargas@lincoln.ac.uk

Valentina Sclafani – VSclafani@lincoln.ac.uk

Rachael Mason – Rmason@lincoln.ac.uk

 

If you are in emotional distress or struggling to copen call Samaritans at 116 123

If you’re struggling and need to talk to someone, call Campaign Against Living Miserably (CALM) at 0800 58 58 58

If you prefer not to talk but need mental health support - text SHOUT to 85258. Shout offers 24/7 text service.

If you’re dealing with a mental health issue or supporting someone else, you can reach out to SANEline at 0300 304 7000.

The University of Lincoln is the lead organisation for this study and will be the data controller for this study. This means that we are responsible for looking after your information and using it properly.

The university’s Research Participant Privacy Notice (https://ethics.lincoln.ac.uk/research-privacy-notice/) explains how we will be using information from you in order to undertake this study.

If you feel that we have let you down in relation to your information rights then please contact the Information Compliance Team by email on compliance@lincoln.ac.uk or by post at Information Compliance, Secretariat, University of Lincoln, Brayford Pool, Lincoln, LN6 7TS.

You can also make complaints directly to the Information Commissioner’s Office (ICO). The ICO is the independent authority upholding information rights for the UK. Their website is ico.org.uk and their telephone helpline number is 0303 123 1113.