PERIScope: An exploration of identity in individuals born pre-term. by Rachel C

RachelC80 — 2022-08-19 08:25:07 UTC

Welcome to our community space for the PERIScope project. This page will evolve as the project does and it's where we can give you the latest updates and information. As we go along, we really welcome your thoughts, ideas and comments, so please do post on anything you'd like, as honestly as you'd like! We could not run this project without working in partnership with people who were born pre-term so we really value you being involved! Thank you.

Our project

RachelC80 — 2022-08-19 08:54:35 UTC

We have called our project PERIScope because it's about 'scoping' (Or exploring) the PERInatal side of prematurity, long past the early years (So it has a wide 'scope' too!). The purpose of our project is to explore what 'identity' looks like in people who were born pre-term (Before 37 weeks). We are interested in exploring this in children from around 10 years of age up to adults.

We think this is really important because very little research has looked at older people born pre-term-There's lots of work looking at how we can support parents with a baby on the neonatal unit, and plenty looking at medical or developmental follow-ups until primary school, but very little about social aspects in older children and adults.

We think there's a need to look at this for several reasons:

- To raise awareness of how individual and varied the effects of being born pre-term can be.

- To highlight the strengths and achievements of people born pre-term, and break down some of the stereotypes about what prematurity is.

-To identify any areas for support that would be helpful to people born pre-term.

- To make recommendations to professionals (Health, education, social, etc.) around how they can identify and support some of the difficulties potentially associated with prematurity.

Our plan is to use mixed methods so that we can better understand what it means to people to have been born pre-term, and how that shapes their identity and daily life. We hope to interview or have focus groups with people where we can talk to them in more detail about these things. We would also like to invite people to use creative methods to represent what 'identity' means to them. This will be using photos, collage, drawings, poems, sculpture, or whatever medium people fancy! At the end of the project we would love to put on an art exhibition of this work to really showcase what prematurity 'looks like' for individuals.

August 2022

RachelC80 — 2022-08-19 09:03:50 UTC

This month we've been working with some children and adults who were born pre-term to get their initial thoughts on our project. This has been unbelievably valuable and we wish we'd had many more hours to spend talking to them! The children have had a go at some of the creative methods and have found those much more accessible than just talking. We've also found that they've been a way to provide a more comfortable space so they feel happier chatting, so we'll definitely be considering this in the final project design. We will be collating all of the comments and feedback in September and will share the main points here.

Your Initial Thoughts

RachelC80 — 2022-08-19 09:08:28 UTC

At this early stage of developing our project, we really need to hear from you, people who were born pre-term, to shape what's important and what this project should look like. As the project develops we'll be inviting you to more 'formal' workshops and events where we can really design the project together. For now we would love to read your views on some of the below and anything else that springs to mind!

Do you like the name of our project? What other names would you give it?

What aspects of 'identity' would you like the project to explore?

What would you like to see the project achieve?

Are there any areas or topics you think we should avoid looking at?

What methods would you like to see?

Who should be involved and in charge?

Meet the team...

RachelC80 — 2022-08-19 09:30:36 UTC

Ailie (Top left): Ailie is a qualified neonatal and paediatric Occupational Therapist (OT) and currently works as a Care Coordinator for the Northern Neonatal Network. She will be using her OT skills to help us develop the creative methods on this project, and her role in the network means we will be able to share our ideas where they can have an impact.

Sophie (Top right): Sophie is a neonatal nurse so has invaluable experience in supporting families on the neonatal unit. She was also born pre-term, so will be providing us with her perspective as someone with lived experience.

Lisa (Bottom left): Lisa specialises in youth mental health and has her own company, Youth Whispering, which provides support to young people and their families, helping them to navigate through the difficult teenage years. Lisa was also born pre-term and will be providing her input from that perspective as well as her expertise in supporting young people.

Rachel (Bottom right): Rachel is mum to a little boy born pre-term, so can offer the parent perspective on what it's like to have a stay on the neonatal unit. She is a researcher on various projects in the neonatal sector and is very actively involved in advocacy and parent groups aimed at embedding family integrated care into neonatal units.

RachelC80 — 2022-08-19 09:42:01 UTC

Please feel free to post any sections here on anything relevant to the project. It might be your ideas, resources, links, etc.

RachelC80 — 2022-08-30 11:14:34 UTC

If you have any thoughts or comments you want to share without posting them here, or have any questions about the project or want to register your interest to get involved, please contact us:
rachel.collum@sunderland.ac.uk

Register your Interest

RachelC80 — 2022-09-23 09:52:04 UTC

If you would like to know more about our project or get involved, please complete this short form. We will only use your details to contact you in the way you give consent for.

https://sunduni.eu.qualtrics.com/jfe/form/SV_389TcDEE4RsZsHA

We have funding!

RachelC80 — 2022-11-15 10:42:59 UTC

So delighted to let everyone know that we have secured almost £5k of funds to move onto phase 2 of our project! In this phase we will be putting together a team of people born pre-term who would like to co-design the methods and be involved in writing up what we've found so far for publication. We're hoping this work will be a strong basis for applying for further funding so that we can then move on to doing the research! If you would like to be involved in any way, please get in touch: rachel.collum@sunderland.ac.uk.

Project Progress-April 2024

RachelC80 — 2024-04-05 08:59:38 UTC

Sorry it's been so long since an update-I went off and completed the small project of having another baby, now 13 months!

Our project has been moving fantastically-Last spring our team conducted 6 interviews with other adults born pre-term and we are just beginning to analyse these. We'll be using the Framework Analysis method, as it's really important everyone on our group has an opportunity to look at the data from their perspectives.

We've been busy sharing our experiences of co-producing the project too-We (virtually) presented some of our initial themes and ideas at the International FICare conference in November last year and we've recently recorded a podcast with the Canadian Premature Babies Foundation.

Next steps will be to continue our analysis and put together a 'creative team' so we can raise our visibility and shout about our work a bit more! So watch this space...