Born In Wales - Information Sheet for Mums

We are researchers at the National Centre for Population Health and Wellbeing Research (NCPHWR) at Swansea University Medical School. We are writing to ask if you would be willing to take part in our study which aims to improve the health and wellbeing of families in Wales. During this time, we believe it is important to understand how health, wellbeing, family life in pregnancy and in the first year of life, can impact on future health and wellbeing of children. This information can help us identify what can be done to support families. We would like to ask if you would be willing to fill out a short questionnaire to tell us about yourself. This work is to look at child development, and so as to not send you many questionnaires, we would like to ask if we can link to the health, education and other routinely collected data held on you and your child. This information is anonymised and we will not be able to identify you or your child but does allow us to look at how health in pregnancy (for example size at birth) impacts on how ready children are for school, and so help inform interventions that can support children entering school. If you would NOT like us to use your anonymised existing records you do not need to read further. However, if you would like to know more, please see the information below.

Information Sheet (Version 3.0, Date 21/06/2021)

Invitation Paragraph: You have been invited to take part in a study that will look at what is needed to support families with young children.

What is the purpose of the study?
The data we collect will help us better understand the current health and wellbeing of families, inform services and support around what is needed to maintain a healthy family and support child health and education.

Why have I been chosen?
We are asking you to take part because you are about to have a baby, are aged 16 or over and are living in Wales. Health in pregnancy is very important for future health of the baby and parents and so pregnancy is the perfect time to start examining what can help families to be healthy. Your partner is encouraged to also take part in the study to hear the experiences of expectant partners. If you need any more information about the study, then please contact any member of the team on the details at the end of the information sheet.

What will happen if I take part?
We will ask you to complete an online questionnaire about your health, wellbeing and lifestyle, which will take about 30 minutes. The questionnaire is completed online so using your phone, tablet or computer. If you require a paper copy, we can provide this for you. We may ask you if you would agree to repeat the questionnaire again within 12-24 months to look at changes in health and wellbeing. We will also ask you for information to use for linking to your health records. This means that your name will be changed into a number and entered into an anonymous database. This is done by a trusted third party: the NHS Wales Informatics Service. Once in the anonymous database, numbers cannot be tracked back to your name. This database can be used to link to other records such as health records (e.g. GP and hospital records). You cannot be identified during this process and all linked data can only be looked at in groups (for example, whether a group who were active had better health compared to the group who were not). The survey will include questions about your employment, your experience of the services you have received, your own health and wellbeing and other background information (e.g. ethnicity).
The reason we ask to link to your health records is so that we can examine the impact conditions like asthma or epilepsy have on families from pregnancy to the early years and beyond. This can help to inform services, such as schools and health care providers as to what support and help is most needed and most beneficial. The data accessed from the Secure Anonymised Information Linkage (SAIL) databank for this study includes health and education records (parental and child health and educational attainment records)

What are the possible disadvantages of taking part?
The questionnaire may ask questions that make you worry. For example, we ask about symptoms of COVID19 as we want to look at the long-term impact of experiencing COVID symptoms in pregnancy. However, this may make you remember and worry about the effects. We have included the contact details of places you can go for help and advice.
Very importantly, this work is for research only. We do not contact your health provider or pass on any information to others. If you do need to see a health professional we do not pass on your details so telling us will NOT result in a referral to specialist services. Our work is anonymised and so we cannot let others know if you personally need help and advice. If you need to speak to a health care worker, we can give the contacts but we do not refer you to any health provider.

What are the possible benefits of taking part?
Taking part in this study can help improve our understanding of what is needed to support families to be healthy. In taking part, you would be helping to improve our understanding of the impact the way we live life today has on our health and happiness and help to improve help and support for families when they need it. A £50 voucher will be randomly allocated to one in every 100 participants in the study as a thank you for taking part.

Do I have to take part?

No, you do not have to take part if you do not want to. Participation in the study is voluntary and participants can withdraw from the study at any point.

How will we use information about you?

We will need to use information from you for this research project. This information will include your [initials/ NHS number/ name/ contact details]. People will use this information to do the research or to check your records to make sure that the research is being done properly.

What are your choices about how your information is used?

You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have. If you choose to stop taking part in the study, we would like to continue collecting information about your health from central NHS records/ your hospital/ your GP. If you do not want this to happen, tell us and we will stop. We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you. If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study and data in the SAIL databank

Where can you find out more about how your information is used?

You can find out more about how we use your information

at www.hra.nhs.uk/information-about-patients/
our leaflet available from https://ncphwr.org.uk/gdpr-for-born-in-wales/
by asking one of the research team
by sending an email to [dataprotection@swansea.ac.uk], or
by ringing us on [602058]

What if I have any questions or want to make a complaint?
If you have any questions about the study please don’t hesitate to contact the chief investigator, Sinead Brophy on s.brophy@swansea.ac.uk, Tel: 602058 or alternatively the project lead, Hope Jones, on h.e.jones@swansea.ac.uk, Tel:07759543431. Complaints can also be made to resgov@swansea.ac.uk. If you have any other queries about a particular aspect of the project or want to make a complaint, please see details below.

Safeguarding issues: If information is entered into the survey which suggests the participant or child’s life is at risk that the researchers will be required to break confidentiality and contact the relevant authorities working underneath the safeguarding framework at Swansea University. For more information about safeguarding visit https://www.swansea.ac.uk/media/P1415-956-Research-Integrity—Policy-Framework-V4-updated-Feb-2021.pdf

Data issues: The data controller for this project is Swansea University. If you are unhappy with the way in which your personal information has been processed you may in the first instance contact the University Data Protection Officer, who provides oversight of university activities involving the processing of personal data. They can be contacted at: dataprotection@swansea.ac.uk. Your personal data will be processed for the purposes outlined in this information sheet. If you remain dissatisfied then you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at:

Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF.

Health Issues

Swansea Bay University Health Board (SBUHB)

Community Health Council, First Floor

Cimla Hospital, Neath SA11 3SU

Tel: 01639 683490

https://swanseabaychc.nhs.wales/

Cwm Taf Morgannwg Health Board (CTMHB)

Ynysmeurig House, Navigation Park

Abercynon, Rhondda Cynon Taff

CF45 4SN

Tel: 01443 744800