Transition From Paediatric To Adult Health Care Services Study

Posted on Oct 13, 2020

Investigating the transition from paediatric to adult services and the management of ongoing care of adults with Osteogenesis Imperfecta.

This study is now closed

Invitation to participate

My name is Chloe Morgan, I am conducting a PhD study at Swansea University which explores the transition of people with Osteogenesis Imperfecta from paediatric to adult health care services and the management of their care as adults. I am interested in this topic as I have Osteogenesis Imperfecta myself.

Update: 17 Jan 2023

Following on from the focus groups and the questionnaire, Chloe has developed a pocket guide for adults with osteogenesis imperfecta.

This booklet can be downloaded via this link: Osteogenesis Imperfecta: The pocket guide for adults living with OI (figshare.com)

Update: 18 May 2021

I am looking for individuals with Osteogenesis Imperfecta to complete an online questionnaire on the transition from paediatric to adult healthcare services and the management of their ongoing care as adults in the UK.  All participants have to be over 21 and have to have been through the transition to adult services themselves.

This research has been approved by the Research Ethics committee, College of Human and Health Sciences, Swansea University.

The questionnaire should take no more than forty-five minutes to complete. Through the questionnaire, I am seeking to capture your experience of, and perspectives on, aspects of the transition to adult services and the management of Osteogenesis imperfecta that you have experienced.

Your participation will be a valuable addition to my project as little is currently known about the experiences of people with Osteogenesis imperfecta in transition to adult services, and I would appreciate your willingness to consider completing the questionnaire. After analysing  the data, the intention is to develop a guide for people with Osteogenesis imperfecta to help navigate the transition from paediatric to adult health care services.

You can complete the questionnaire via this link;

https://swanseachhs.eu.qualtrics.com/jfe/form/SV_2gEfxkeKPGn7NY2

Please take some time to read the ‘Participant Information Sheet’ included at the beginning of the questionnaire prior to completing the questionnaire. The information sheet will offer you some further information about the research.

If you would like some more information about the questionnaire and the purpose of the research, please contact me as per below.

THIS PHASE IS NOW COMPLETE

I am looking for individuals with Osteogenesis Imperfecta to take part in online focus groups to discuss experiences and viewpoints on the transition from paediatric to adult healthcare services and the management of their ongoing care as adults in the UK. This research has been approved by the Research Ethics committee, College of Human and Health Sciences, Swansea University.

The focus group is informal with approximately 6-8 other participants and will be conducted online. I am simply trying to capture your experience of, and perspectives on, any aspects of the transition to adult services and the management of Osteogenesis Imperfecta that you are familiar with or have direct experience of.

Your participation will be a valuable addition to my project, and I would appreciate your willingness to consider taking part in a focus group.
Please take some time to read the ‘Participant Information Sheet’ available here