We have recently been approached by the Helix Centre, who are looking for family members with lived experience of caring for a child with a life-limiting condition to test two mobile apps designed to support parents, family members and other carers to help other families. The apps have been designed based on opinions shared by family members, other carers and professionals. People who take part in user-testing will be paid at a rate of £25/h for their time.

The first app you’ll be testing is Project Pronoun, which has been developed “in response to unmet needs family members who look after children with life-limiting conditions have shared with us. The app prototype will help parents to access, store and share resources around caring for a child with complex disabilities.”

The second app, Moments, was “designed to help parents and other carers to capture everyday, normal experiences and create, securely store and share a richer picture of children with life-limiting conditions’ lives.”

Below are some screenshots from the Moments app:

Here’s the message from Cat Kilkenny, Patient and Public Involvement Officer at the Helix Centre and Imperial College London:

Since 2018, the Helix Centre has been working with children with life-limiting conditions, carers and families to think of and test products and experiences to improve families’ experiences of children’s hospice and palliative care

We are looking for family members with lived experience of caring for a child with a life-limiting condition to test two mobile apps designed to support parents, family members and other carers to help other families. We designed these apps based on opinions shared with us by family members, other carers and professionals. People who take part in user-testing will be paid at a rate of £25/h for their time.

Testing the apps with the experts – people who are experts by experience – will help us to make sure that the things we are making meet the needs of family members and other carers.

In my experience, understandably everyone feels very differently about getting involved in projects like this. Some people are keen to get involved as a way to make a difference for others, as long as they’re invited to get involved in a way that they feel comfortable with, while others find the idea of getting involved in such projects too painful.

With that in mind, I’m keen to give people the option of getting involved while ensuring that we’re being sensitive about how we go about contacting people.

Below is more information about the programme.

If you have any questions or would like to get involved, please let us know or contact Cat directly at cat@helixcentre.com .

Invitation for paid app testing for family members with lived experience of caring for a child with a life-limiting condition

The Helix Centre are looking for family members with lived experience of caring for a child with a life-limiting condition to test two mobile apps designed to support family members and other carers. We work with children with life-limiting conditions, carers and families to think of and test products and experiences to improve families’ experiences of children’s hospice and palliative care

To make sure that these mobile apps meet the needs of family members and other carers, we need to test these apps with the experts – family members and other carers with lived experience of caring for a child with a life-limiting condition.

You don’t need extensive knowledge about using different mobile apps to take part. In fact, the more we test with people with different levels of experience, the more we can do our best to make the apps work for everyone.

By testing with us you can help to develop something that will have a positive impact on the lives of children with life-limiting conditions and their families.

What would getting involved look like?

Sharing what works well and what doesn’t work so well for you when testing the apps for 40 minutes between the 18th and 22nd May. We can arrange this on a day and at a time that works best for you. You can test the apps at home.

If you’d like to discuss your experiences of testing the app with other testers, we’ll be hosting an optional informal chat on Zoom on the 19th or 20th May for people who are interested in taking part.

Expenses

We will pay you at a rate of £25/hour for testing the apps. We anticipate testing taking around 40 minutes.

What if I’d like to get involved?

If you have any questions about accessibility, or if there is anything we can do differently to help you to get involved, please do get in touch.

If you’d like to get involved, want to hear a bit more about the project, or have questions you’d like to ask before you make a decision, please get in touch with Cat on cat@helixcentre.com