13th July 2023

Exploring ways to prevent or reduce 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, dads, birthing, non-birthing individuals) during pregnancy and the first year following birth, called the perinatal period. I am hoping to speak to LGBT+ parents to capture a more diverse range of experiences.  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? People who: are mums, dads, birthing or non-birthing individuals who have felt lonely since they were expecting a baby or since baby arrived Are pregnant/expecting, or have a baby under one – or adopted a child less than one year ago Live in Manchester or Sheffield are aged 18+* can speak English able to attend two interviews either in person, via video or on the telephone between July 2023 and January 2024. *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: http://www.solutionsforloneliness.uk What does taking part involve? If you decide to take part, you will be invited to attend two one-to-one interviews with Ruth Naughton-Doe who is a leading the research. The first interview will last no longer than 90 minutes. The second interview will be four months later and last no longer than 60 minutes. You can take breaks during the interview as needed. The interviews will explore your experiences of loneliness in your own words. Ruth will ask you questions about your life before you or your partner became pregnant or had your baby. Ruth will also ask you some basic questions about yourself (for example, age, gender and the support you have), and ask a series of questions about your experiences of loneliness. Ruth will then ask for your opinions on what might help LGBT+ parents to feel less lonely. The interview will be audio-recorded, with your consent, and we will ‘type up’ (transcribe) your interview. 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 interview is transcribed, the recording will be permanently deleted. You can stop the interview, or the recording, at any time. As a thank you for your time the research team will send you a £20 shopping voucher for each completed interview. Where and when will the interviews take place? The interviews will take place at a time that is convenient for you and Ruth. Ruth appreciates that it is hard to arrange schedules with other commitments including childcare and work and can be flexible. Interviews can take place in the evenings or on weekends if that is easier for you. You can also choose where the interviews will take place. You can talk to Ruth over the phone or on Zoom, or you can meet Ruth in person, either in a private room in a public building, or at your own home. Your baby may be present during an interview, and it may be easier for you to take your baby for a walk whilst talking to Ruth. You can also request a walking interview either with Ruth in person or over the phone. 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 an interview, 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 a researcher may cause some anxiety. Arranging an interview 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 interview will take place either over a video call (for example using Microsoft Teams or Zoom), on the phone or in person. A range of ways the interview can happen – either whilst seated or whilst walking. You choose the location, somewhere you feel comfortable and safe. You can take breaks anytime. You can stop the interview anytime or decline to answer a question. You can rearrange the interview if something happens that means you can’t make it and I will understand. You can be interviewed evenings at weekends. Someone can accompany you to interviews. You can request copies of the questions in advance (although they might change a bit in the interview). What will happen with the results? The interview findings will help develop 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 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 interviews 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 does 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 interviews 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 interviews 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 interview 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 are going to do this (if appropriate). 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. Interview 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 interview as a thank you for your time.     Risks: Whilst we hope the interview 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 interviews and discussion). Reflecting on your experiences of could bring up distressing memories or feelings, especially if you found this to be a difficult time. During the interview you can take breaks, or end the interview 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 interview 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 support if required. Ruth will then arrange a time for the interview. Interview One will take place. You will be sent a £20 shopping voucher Three months later, you will be contacted to arrange interview Two (which will take place after four months) The week before interview 2, you will be sent a repeat of the form in 4.) Interview Two will take place. You will be sent a £20 shopping voucher Submit a form.