30th September 2023

Manchester & Sheffield parents only – focus groups November 2nd to help find solutions for perinatal loneliness

Ruth Naughton-Doe

What is the study about? The University of York is carrying out research to develop ways to prevent and/or reduce loneliness experienced by parents (mums and dads) during pregnancy and the first year following birth, called the perinatal period. The project title is ‘Developing a Theory of Change to find solutions for perinatal loneliness in collaboration with people with lived and/or practitioner experience’. Who are we looking to speak to parents who: are mums, dads, birthing or non-birthing parents who have felt lonely since they were expecting a baby or since baby arrived Have used a service or attended an activity that helped reduce loneliness and/or was aimed at reducing loneliness are aged 18+* can speak English able to attend one online focus group on November 2nd 2023 20:00-21:30 *We recognise that parents aged under 18 also feel lonely but this study is aimed at those aged 18 and over This leaflet provides information about taking part in this research. You might think it is a lot to read and take in – and you would be right! But, to it is important to understand why the research is being done, what taking part will involve and what happens with the information you share with us. Please take time to read the following information carefully and discuss it with others if you wish. If you would prefer to talk this information through, you would like more information, or you have any questions, please contact Ruth on the details below. Tel: 07355624309 Email: perinatal-loneliness-project@york.ac.uk For study updates: Twitter: @pn_loneliness Website: solutionsforloneliness.uk What does taking part involve? If you decide to take part, you will be invited to attend a focus group (group discussion) led by Ruth Naughton-Doe who is a leading the research. The focus group will last no more than 90 minutes. You can take breaks during the focus group as needed. The focus group will be a discussion between six other parents. Ruth will ask questions that explore your experiences of loneliness and of finding, accessing and using support to reduce loneliness and what you think might help other parents access support in the future. Before the questions begin, we will agree ground rules with other group members which will include not sharing what we hear from others with anyone outside of the group, not taking photos of the group, (keeping information confidential) and respecting each other. The focus group will be audio-recorded, with your consent, and we will ‘type up’ (transcribe) your contributions. Any personal identifying details, such as your name, will be removed from the transcript, and you can either choose a pseudonym (a code name) or let Ruth choose one. After the focus group is transcribed, the recording will be permanently deleted. As a thank you for your time the research team will send you a £20 shopping voucher. Where and when will the focus groups take place? The focus group will be online at 20:00-21:30 on Thursday 2nd November. Taking part is completely voluntary. If you decide to take part you have the right to withdraw from the study at any point, without having to give a reason and without any consequences. You could also ask for your data to be withdrawn from the study up to 7 days following a focus group , simply by contacting the researcher on the details below. What can you do to support me to take part? For some people, talking about loneliness with others may cause some anxiety. Arranging to attend a focus group around your schedules, especially with a young baby, might be hard. To help with this Ruth is offering: A range of ways to take part. The focus group will take place either over a video call (for example using Microsoft Teams or Zoom) or in person. If the group is in person, babies in arms may come but we ask that you go somewhere quiet if they need attending to so as not to disrupt the group. If the group is online, we appreciate your children may be around, but where possible, we ask that they are occupied or in a different room to minimise disruption. You can take breaks anytime. You can leave the focus group any time or decline to answer a question. You can request copies of the questions in advance (although they might change a bit in the focus group). What will happen with the results? The focus group findings will be help inform a theory about how we might prevent or reduce loneliness. The anonymised results will be shared with people who are interested in this topic. This will include members of the public, people from pregnancy and mental health charities, health workers, researchers and policy makers. The results may be published in project reports, videos, scientific journals, online blogs, social media posts and presented at conferences. You will not be identified in any report, video or publication. You will be asked if you would like to be added to a mailing list to receive information about the study results. Your data may be securely archived after the project because of its possible historical value. It is possible that, in the future, researchers working on related projects might ask to look at the transcripts from the focus groups to help them with their own work. We would like your approval now that we can share the transcripts with them if this happens. If you do not consent to this (on the consent form) this not stop you from participating in the current study. Can I be identified from the study? All reasonable steps will be taken to protect your anonymity. The focus groups will be audio-recorded and transcribed (written out). All data will be securely stored on an encrypted password protected file store on the University of York secure fileserver (see attached GDPR notice). Recordings will be accessed only by Ruth, members of the research team, and professional transcribers, who will sign a confidentiality agreement. We will remove any information from the transcripts which it may be possible to identify you from the transcription. Quotations from the focus groups may be used in the reports, videos, training items or publications from the study, but they will be anonymised. Limits to confidentiality There are some limits to confidentiality. If something you say in the focus group makes the research team think that you, or someone else, is at significant risk of harm, we will have to break confidentiality and speak to an appropriate person about this. We will tell you if we have to do this (if appropriate). Prior to the focus group you will be asked to provide the details we would need to follow up any concerns raised. You will be asked for: your name, date of birth and address; your baby’s name, date of birth and address; the name and number of an emergency contact. This information will only be shared if we think that you, or someone else, is at significant risk of harm. What happens to my data? Study documents containing personal details will be held securely for up to one year after the end of the study, and then destroyed. Focus group data (transcripts) will be made available via the University’s Research Data Repository, under controlled access for up to 10 years. This means that it will be available for reuse by the study research team as well as other researchers, under strictly controlled conditions. check the results. We will keep all information about you safe and secure. What are the benefits and risks of participating? Benefits: It is not expected that there will be any direct benefits to you taking part in this research. Your views will help the research team to understand how we might prevent or reduce perinatal loneliness, so your participation may help others with similar experiences in the future. We will also give you a £20 shopping voucher after each focus group as a thank you for your time.     Risks: Whilst we hope the focus group is a positive experience for you, we know that the topic of loneliness can sometimes be difficult to talk about. You do not have to answer any questions that may be difficult for you. If anything that we talk about leaves you feeling upset or worried, we also encourage you to speak to your healthcare provider. If you agree to take part, it is possible that you will experience some inconvenience (e.g. making time for focus groups and discussion with Ruth). Reflecting on your experiences of could bring up distressing memories or feelings, especially if you found this to be a difficult time. During the focus group you can take breaks, or leave the focus group if you would like. If you require mental health support we suggest you contact your GP, NHS emergency services, or Samaritans. If you disclose suicidal ideation or immediate harm to yourself or others the researcher may contact NHS emergency services. Who is funding the research? The study is funded by the National Institute for Health Research School Three Schools Mental Health Programme which aims to improve the evidence base for adult mental health. Who has given approval to conduct the research?  What if I have a complaint? The research has been approved by the Social Policy and Social Work Departmental Ethics Committee at the University of York. Please direct any concerns to Professor Martin Webber (martin.webber@york.ac.uk) at the University of York in the first instance. If you are still dissatisfied, please contact the University’s Data Protection Officer at dataprotection@york.ac.uk. Please see further details on the GDPR sheet. I want to take part- what happens next? You should only take part if you want to. If you want to take part please contact Ruth on the details provided on the first page. You can also contact Ruth if you have any questions that will help you with your decision. If you decide to take part after talking with Ruth, she will arrange the focus group and take your formal consent to take part. Here are all the steps involved in taking part: Read the information sheet (this one). Contact Ruth to ask questions and talk about taking part. If you want to take part, let Ruth know. Ruth will then send you a form to complete (either through an online link, an email, or in the post). You can also choose to complete this over the phone with Ruth. This will include a consent form, questions about demographic information (age/gender/ethnicity/religion/sexuality), a few questions about loneliness/isolation, and the information needed for follow on referral if needed. Ruth will then arrange a time for the focus group and let you know when and where it is. The focus group will take place. You will be sent a £20 shopping voucher to say thank you.