Information and advice for children and young people affected by aplastic anaemia

Welcome to MarrowKidz from The Aplastic Anaemia Trust. Here you can find resources for children and young people affected by aplastic anaemia - and for their families, friends and support networks. Select your age range above to browse information relevant to you.

A big thank you to the National Lottery Community Fund - we couldn't have done this without you!

When we launched MarrowKidz in November 2020, The Aplastic Anaemia Trust asked our community to complete a survey. We were so pleased that 32 of you answered our call and filled in the survey - giving us a sturdy evidence base for the impact of the programme, and providing some very interesting reading. Around 20% of those responding to the survey were clinicians, the rest were aplastic anaemia patients and parents of patients.

We wanted to share some of our discoveries from the survey, and how this will inform our work going forward. 

Our community love the new resources

Our team were so happy to find that 100% of respondents felt that the MarrowKidz website at least met their expectations, with 84% saying that it exceeded them! 100% of respondents said they would recommend the website to others. 

It is so important that the information we produce is trusted by patients. 100% of respondents to the survey told us they trust the information on our website, with 82% saying they trust it a great deal. They also all described the resources as either "very clear" or "extremely clear". 

In particular, people said that they liked the positive and reassuring tone of the resources, and the bright and colourful designs. We also received positive feedback about our age-appropriate approach - which was a clear priority from the initial consultation on the project. 

In the survey, and in emails we've received, many patients and families highlighted the difference the resources would have made for them have they had them at the time of their diagnosis:

I so wish I had an info pack and booklets like this when I was first going through everything!

We asked people to describe the new MarrowKidz resources in three words. This graphic shows the words they chose!

Reporting back

In many cases, the people responding to our survey had been through their treatment journey. This put them in a unique position of being able to truly understand the difference these resources will make - as they know how little information was available before.

This means we will be able to demonstrate this to our funders, and apply for money to expand the project in the future. We're using all your survey responses and the feedback you've emailed to us to write up a report of the programme's impact so far for the National Lottery Community fund - who have funded the programme.

Setting priorities

We Asked respondents to the survey to prioritise which of these new resources they would like to see us prioritise next:

  • A guide for siblings affected by aplastic anaemia
  • A guide for parents of babies, toddlers and pre-schoolers diagnosed with aplastic anaemia
  • A guide for school staff on supporting the needs of young people with aplastic anaemia

All three of these ideas were popular, and the scores were very even - a good indication that we've correctly prioritised these for the next stage of the project!

I think all three of the above resources are equally important to create.

The most popular was our upcoming guide for siblings - and we have had several comments to say that it would be great to have this resource to support siblings. We are already gathering information for this new advice sheet and look forward to publishing this very soon!

We also asked what topics people would like to see covered by future animation videos and resources. Your answers were rich with fantastic suggestions for future topics, some examples were:

  • A video explaining treatment options, making them less intimidating
  • Information about what activities can be done by children as they recover - to give parents more confidence.
  • A video that normalises isolation 
  • More information on practical support available: such as local carers centres, help with benefits, and advice on the impact of young people when university, school or work is suspended
  • Information on psychological support available to patients and some more mindfulness and wellbeing advice 
  • Warning / alert cards

An animation normalising isolation? So actively showing friends and family wearing full PPE or being behind a glass door. For the transplant part too - people always ask "How does the Bonemarrow know where to go?" and this [could be] addressed in the animation.

One person requested a plushie of the MarrowKidz blood drop logo - we would love that! 

For fundraising - how about a 'plushie' of the blood drop logo? We would buy it!

Comment below if you would buy one too!

Thank you so much to everyone who supported us by providing your feedback! We're progressing apace with the new resources you've suggested, and we look forward to sharing them with you very soon. If you have further comments, or would like to help with developing new resources for patients, drop Leena an email at [email protected] - she would love to hear from you.