Informing the design of a Home-based Online Pain-management Support System (HOPSS) for parents and children with cancer-related pain

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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).

Research Group Lead

Ms Betul Bay

Betul BayNursing/Postgraduate Researcher

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About our research

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.

Why is this study needed?

There are no UK on-line digital resources for children experiencing cancer pain and their families.

Research plan and methods

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.  

1. Art and talk sessions with children and young people

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.

2. Interviews with parents 

We would like to talk on-line to parents about their experience of managing their child’s cancer pain at home.

3. Focus group discussions with parents and children and young people

 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.

Participation and recruitment

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.

OR

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:

What happens next?

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.

Co-investigators