Professor Julia Downing, Chief Executive of the International Children’s Palliative Care Network (ICPCN), explains her organisation’s role in MyPal.
The International Children’s Palliative Care Network (ICPCN) was established in 2005, and is the only global organisation working to improve access to palliative care to the 21 million children worldwide who need it.

As the global umbrella organisation for children’s palliative care, ICPCN’s vision is that all children living with a life-limiting or life-threatening condition and their families will have seamless access to palliative care, in order to alleviate serious health-related suffering and enhance their quality of life.

Sharing and communicating

We became involved with the MyPal project following discussions with Professor Sheila Payne from Lancaster University, UK and Vassilis Koutkias from the Centre for Research & Technology Hellas in Thessalonika, Greece. Sheila and Vassilis shared the idea of MyPal with us and asked whether ICPCN would be interested in being part of the study.

They valued our expertise in children’s palliative care. They also thought our ability to share and disseminate the findings of the study with our members and those involved globally in children’s palliative care would be of great benefit to the potential impact of MyPal.

Young girl and nurse at a palliative care clinic in Malaysia

 “Children’s palliative care in Malaysia” – photo courtesy of Moonshine Movies “Little Stars”

Two different roles

Our role in the study is in two particular areas. Firstly to provide technical assistance with regards to the design of the MyPal Child clinical study, the appropriate patient reported outcome measures to use, and the special considerations of research design within the context of children’s palliative care.

Secondly we are part of the group (known as a “Work Package” in EU terminology) which is responsible for ensuring the widest possible dissemination and exploitation of the results of the MyPal project.

We will do this through the traditional route of scientific journal papers and conferences, but also through blogs, videos, newsletters and social media.

At the end of the project ICPCN will help organise an end of project workshop highlighting the study results and implications for practice.

Benefits of digital health

One of the reasons we were keen to take part in MyPal is that I think that there is enormous potential for utilising digital health apps with children with cancer who are having palliative care.

Children and young people these days are very technologically savvy, and we need to be as well.

We need to try and ensure that not only are we using the most effective chemotherapies and medical treatments for cancer care, but also the most effective and appropriate ways of communicating with young people.

I have seen the advantages that using technology has meant for children who are in hospital, enabling them, through apps like Skype or Facetime, to virtually join their friends in school, or on an outing, or even having dinner together in the evening. Yet whilst there is enormous potential we also need to be aware of the challenges.

The challenges of digital health

  • We need to ensure that systems are appropriate and attractive to children and young people of all ages.
  • We have to ensure that apps are stimulating and will keep the child and young person interested enough that they will use it on repeated occasions. But we also have to balance that with not wanting to encourage them to spend all the time on their device.
  • We also have to take into consideration the different aspects of data protection and privacy, and who has access to the apps, whether it is just the child or the child, their siblings, and their parents.
  • We also need to consider whether the child is actually well enough to use the apps.

ICPCN’s Pain Assessment Tool for Children

ICPCN recently developed our own app to help in the assessment and subsequent management of pain in children.

The ICPCN’s Pain Assessment Tool for Children can be downloaded on both Android and iPhone devices to assist children and parents keep track of their pain levels over a period of time.

It is particularly useful for children who have palliative care needs because pain is most often one of the symptoms of life-limiting illnesses, but it can also can be used by anyone of any age who wishes to keep a recorded history of their chronic pain levels.

With the ICPCN Pain Assessment Tool, three different pain scales are immediately available on your phone. The app can also be used by practitioners who need easy and immediate access to a pain scale for a one-off measurement of a child’s pain. The app has the following features:

  • The app is universally relevant to children of all races and cultures.
  • It provides an intuitive, child friendly and interactive pain scale.
  • The app tracks and measures the child’s pain type and levels over an extended period of time.

More information can be found on the ICPCN website and the International Children’s edition of ehospice.