This resource was developed for parents by parents and health and social care providers working together. It is written with BOTH mums and dads in mind. Parents have told us that support and information for when they are at home with their premature baby is important to them. The resource is organised around topics raised by parents during focus groups held by our team and TinyLife Charity with parents of premature babies. The content includes practical advice and lots of short videos of parents and professionals. We hope you will find it helpful!

Tiny Life - Life at Home

Contributors

Tiny Life
Queens University Belfast
University of California San Francisco
Parents & families

About Us

This website was developed through a research grant from TinyLife to a team of researchers linked to the Centre for Evidence and Social Innovation and the School of Nursing and Midwifery at Queen’s University Belfast and the University of California San Francisco. The first stage of the research project involved talking with groups of parents about their needs and experiences after they went home from hospital with their premature baby and doing a systematic web search of websites that are currently available as a resources for parents. This research informed the structure and content of this web resource.

Each section of this web resource provides written and video based information. The advice is based, where available, on current professional guidelines and recommendations. The text was written by a member of the research team and reviewed by at least two health and social care professionals in Northern Ireland. Parents told the research team that often the most helpful advice comes from someone who has ‘been there’ in a similar situation. So, for most sections there are short videos of real parents talking about their day to day experience of being at home with and caring for their premature baby .

We would like to thank all the families who have so willingly shared their experiences to help other parents, as well as the health and social care professionals who took part in the development of this resource.

An advisory group was established to develop a web resource reflecting the first stage of the research project. The advisory group included:

Tiny Life - Life at Home
Professor Fiona Alderdice
Co-Principal Investigator | Queen’s University Belfast
Tiny Life - Life at Home
Professor Linda Franck
Co-Principal Investigator | University of California San Francisco
Tiny Life - Life at Home
Phyl Gargan
Research Midwife | Queen’s University Belfast
Tiny Life - Life at Home
Dr Fiona Lynn
Co-Investigator | Queen’s University Belfast
Tiny Life - Life at Home
Alison McNulty
Chief Executive | Tiny Life
Tiny Life - Life at Home
Dr Elizabeth Rogers
Neonatologist and Developmental Paediatrician | University of California San Francisco
Tiny Life - Life at Home
Dr Jenny McGowan
Neonatal Researcher | Queen’s University Belfast
Tiny Life - Life at Home
Kate Finn
Video Production & Design Oversee | Morrow Communications
Tiny Life - Life at Home
Dr David Sweet
Neonatologist | Belfast Health and Social Care Trust
Tiny Life - Life at Home
Crystal McClean
Parent Representative
Tiny Life - Life at Home
Emma McCall
Researcher, NICORE | Queen’s University Belfast

The second stage of the project will be an evaluation of the web resource to find out parents’ views and experience of the content and style of each section. We look forward to your feedback and to continuing to develop the website to make it even more helpful to parents at home with their premature baby.