Keynote Address

Keynote address by Seán Thornton, childhood cancer survivor.

Using Your Voice as a Patient Advocate

Aoife Moggan, childhood cancer survivor and advocate

Our own stories are a powerful communication tool, which we can use not only to inspire others but as a driver for change both nationally and at European level.

As an ambassador for the EU Mission on Cancer, I have been lucky enough to collaborate and learn from fellow advocates, parents of survivors and health care professionals. This group has a wealth of knowledge, spanning 18 countries all united in the same goals:

• To highlight existing resources helpful to young cancer patients, survivors and their caregivers.
• To develop new European guidelines.
• Empowering cancer survivors to find their own voice helping them to advocate for their rights and needs.

This project brought together young cancer patients and survivors, using our lived experience in order to improve the experience of those who come after. As a group, we have directly influenced the creation of a European network dedicated to empowering, informing and uniting youth cancer survivors.

Knowledge is power. Find out how you too can become an advocate and use your voice in order to create positive change.

Speaker: Aoife Moggan

Developing a Smart Care app for survivors of childhood, adolescent and young adult cancer.

Jack Latteur, EU Projects Officer at the European Cancer Organisation
Jack will present the EU co-founded smartCARE project, a flagship initiative in Europe’s Beating Cancer Plan, that is designing a digital tool to reduce the communication gap between cancer survivors and health and social-care providers. The presentation will focus on key learnings and latest information on the prototype.

Jack Latteur is an EU Projects Officer at the European Cancer Organisation where is responsible for coordinating the smartCARE Project. Prior to this he worked as a Health Economist where he conducted research on patient-reported outcome measures at the Karolinska Institutet in Sweden.

Speaker: Jack Latteur

Developing Psychosocial Programmes

Childhood Cancer Ireland developed its Psychosocial Service to meet the psychosocial needs of families, supporting children, adolescents, young adults and their families throughout their childhood cancer journey – from diagnosis to treatment, through survivorship and into adulthood.

The recent National Model of Care for Psycho-Oncology Services for children, adolescents and young adults (CAYA) and their families in Ireland (Greally et al., 2023) recognises the importance of community-based support provided by the appropriate level of expertise, offering a continuity of care for families outside of their treating hospital both during and after treatment. These services need to be available to at the appropriate level of support and expertise and in a timely manner.

Childhood Cancer Ireland aims to attend to all levels of support, offering patient-centred and individualised supports to meet the needs of the patient and their family. These targeted supports will complement a family’s own resilience and coping strategies, empowering parents and young people and serving as a preventative or intervention support to reduce long-term psychosocial and psychological effects of childhood, adolescent or young adult cancer.

Speaker: Laura Cullinan

The development of Adolescent and Young Adult Services in University Hospital Galway

Exploring the development of Adolescent and Young Adults (AYA) services in Galway, as part of a national AYA service which continues to grow and evolve. These services address the unique needs of the 16 – 24 age group, which require a different approach to both paediatric and adult services. Trish will outline her role as a Clinical Nurse Specialist working alongside young people to ensure that their voices are heard at all stages of their diagnosis and treatment.

Speaker: Patricia Gleeson, Adolescent and Young Adult Cancer Clinical Nurse Specialist, University Hospital Galway

The National Adolescent and Young Adult Cancer multi-disciplinary meeting- live! A panel discussion

The National Adolescent and Young Adult (AYA) Cancer Multi-Disciplinary Meeting (MDM) is a multiprofessional forum to support young people with cancer, their supporters and clinicians. The purpose of this MDM is to ensure that all AYA cancer patients have equitable access to comprehensive, personalised, developmentally-appropriate care with multidisciplinary input, guided by a health needs assessment.
This LIVE! Version of the MDM will involve young people, their families and healthcare professionals, giving an insight to processes behind young person-centred care.
 

Finding the Right Story to Tell with The Dublin Story Slam

Julien Clancy, The Dublin Story Slam

For adolescents and young adults with cancer or survivors of childhood cancer age 14+

If you’ve got something important to say and you want people to listen to you, your personal true stories are your superpower. When you share the right story, you don’t just make people listen, you help them learn and show them how to change the world for the better. But finding the right story to share is hard.

The Dublin Story Slam has been helping young people find and share powerful, real and impactful stories for the last seven years. In this 90-minute session, we’ll explore how personal storytelling works, what makes a great story and how to find the right one for you.

So, if you’ve got something important to say but struggled with finding the best way to say it, this session is for you. We’ll also share details of an exciting new opportunity, where young people like you will be invited to share your stories as part of advocacy campaigns.

Facilitator: Julien Clancy

Body Image During and After Childhood, Adolescent and Young Adult Cancer

Facilitated by Molly Nee, Youth Development Officer, Bodywhys

This interactive workshop will explore body image during and after childhood, adolescent and young adult cancer. Some of the changes experienced during treatment are temporary and some last longer, but all can have an effect on how we feel about ourselves and our confidence.

Body image is part of our self esteem but it’s only one part. Together, we will discuss other ways to build our self esteem. We’ll also look at the role of body image in relation to mental health and the pressures brought on by social media pressure and other influences.

You will have a chance to share your experiences, if you wish, as we explore these aspects of recovery and how we have or can deal with them.

This session is suitable for young people impacted by childhood, adolescent or young adult cancer age 14+.

Facilitator: Molly Nee

Finding the Right Story to Tell with The Dublin Story Slam

Facilitated by Julien Clancy, The Dublin Story Slam

For siblings of children / adolescents with cancer age 14+

If you’ve got something important to say and you want people to listen to you, your personal true stories are your superpower. When you share the right story, you don’t just make people listen, you help them learn and show them how to change the world for the better. But finding the right story to share is hard.

The Dublin Story Slam has been helping young people find and share powerful, real and impactful stories for the last seven years. In this 90-minute session, we’ll explore how personal storytelling works, what makes a great story and how to find the right one for you.

So if you’ve got something important to say but struggled with finding the best way to say it, this session is for you.

Facilitator: Julien Clancy

Who Am I Now as a Parent?

Facilitated by Dr Mairead Brennan

Receiving a diagnosis of childhood cancer, navigating treatment and recovery is well known to have an impact on parents’ wellbeing, both physically and emotionally. Many roles, responsibilities and relationships are affected or changed and you may not have had time to take care of yourselves while also caring for your child. It can often take months and years to re-establish a sense of ‘normality’ and wellbeing.

Parents often describe a sense of having to shape a new identity that fits with their current values and lives. But you may not have had time to do this and this can be further hampered family and friends who don’t fully understand the experience and can (often unintentionally) invalidate your recovery process.

This 90-minute workshop provides an opportunity to think and talk about your experience with others who have a shared understanding. A focus on ‘who am I now?’ and the impact on your wellbeing and changed values.

We will explore strategies that can help to take gentle steps towards identifying and moving towards these values.

Facilitator: Dr Mairead Brennan

Supporting Families and Young People through Cancer-Related Fatigue

Facilitated by:

• Eilis O’Shea, Senior Occupational Therapist, CHI at Crumlin
• Cliona Godwin, Senior Paediatric Oncology Dietitian, CHI at Crumlin
• Rachael Keating, Senior Physiotherapist, Paediatric Haematology and Oncology, CHI at Crumlin

Cancer-related fatigue is a significant challenge for many children, adolescents and young adults. For healthcare professionals and others working with families and young people, it can be difficult to know how to support families. In this session, we will explore the role of diet, exercise, occupational therapy and psychology, as well as discussing the supports that are available both in hospital and community settings and their referral pathways.