
Ms Betul Bay
Postgraduate Researcher
Betul Bay is a PhD candidate in Child Health Nursing for the School of Nursing and Midwifery.
Informing the design of a Home-based Online Pain-management Support System (HOPSS) for parents and children with cancer-related pain
HOPSS is a study looking at how cancer pain can be managed by children in pain and their parents.
The aim is to find out from families what pain management information they would like on an on-line digital resource (for example a website or an application for a smart device).
We know that children with cancer can experience pain. Parents are often required to make decisions about their child’s pain. Finding the right information at the right time can be difficult. Digital resources can provide information to families in their home when needed.
With the support of children with cancer, and their parents we plan to design the content and select the best source of delivery.
There are no UK on-line digital resources for children experiencing cancer pain and their families.
This study has 3 phases. We would like you and your child to take part in all three. However, you can decide to take part in any of them or all of them.
We will ask children and young people to create a piece of art that helps them to show what it is like to have cancer-related pain. The children and young people and their parents will be invited to talk on-line with us and other families about cancer pain.
We would like to talk on-line to parents about their experience of managing their child’s cancer pain at home.
We would like to meet on-line with a group of parents to talk about the digital resource we have co-designed through this research process.
We want to create a digital resource to help support children, young people and their parents to manage cancer related pain at home.
We are inviting children and young people aged 8 to 16 years old and experience/have experienced cancer pain, and their parents, to take part in our study.
Is your child aged between 8 and 16 years old and you experience/have experienced cancer pain?
If the answer is YES further information about the study can be found here:
Information for children and young person (8-11 years old) [PDF, 126kb]
Participant Information Sheet for Young People aged 12-16 Years Old [PDF, 621kb]
Information for parents [PDF, 26kb]
If you or your child would like to take part in this study please email Betul at bxb179@student.bham.ac.uk
Alternatively, you can register your interest here and Betul will then contact you.