April is Teenage and Young Adult Awareness Month and to mark the occasion, we’re shining a light on a very important research project that we are funding.
Aileen O’Dwyer is undertaking a three-year PhD project at the School of Psychology, Ulster University, entitled ‘Understanding the Psychosocial Needs of Adolescent and Young Adults with a Cancer Diagnosis Across the Island of Ireland: A mixed methods study.’
Aileen has first-hand experience of having a young adult with a cancer diagnosis – her daughter Phoebe was diagnosed with Hodgkin Lymphoma in 2022 at the age of 15 and was treated in the Children’s Cancer Unit. She still attends the clinic for reviews.
Aileen is undertaking this All-Ireland study with a view to improving outcomes for Adolescent and Young Adults (AYA) both during and following cancer diagnosis and treatment. We caught up with her to find out a bit more about the project and what it aims to do.
Aileen, what was your motivation behind embarking on this PhD?
When Phoebe was diagnosed with cancer, she received excellent medical care and support from the team she was receiving treatment from. During this time though, it became apparent that while the physical effects of cancer treatment were difficult, the psychological and social impact that it had on everyday life for a young person was just as, if not more challenging for them. Seeing first-hand what Phoebe was experiencing and then meeting other young people with cancer, I was amazed at how they approached their lives, often joking about difficult things or had a greater appreciation of life, and I felt strongly that the voices of these young people should be listened to and that their experiences should be used to help shape future services for others that will go through it. I am very appreciative of the opportunity CCUC provided, to research such an important aspect of AYA cancer care.
How does cancer affect AYA differently than children or older adults with cancer?
Cancer in this age is incredibly rare thankfully, with approximately 60 AYAs diagnosed with cancer in Northern Ireland (NI) and 194 in the Republic of Ireland (ROI) per year. During the age of 15-24 years, AYAs are going through rapid biological changes and growth while also experiencing formative stages in social, emotional and cognitive developmental as they move from adolescence to adulthood. While there are difficulties experienced by people of all ages who have a cancer diagnosis, there are additional specific issues that impact AYAs such as concerns about their independence, potential infertility, establishing/maintaining intimate relationships, future employment, body image, and identity. In addition, the treatments for cancer they receive are often based on paediatric or older adult treatments, and despite recommendations from International and European organisations such as the World Health Organisation and the European Society for Medical Oncology that age-appropriate services should be available to help support their psychosocial needs, it is up to individual healthcare systems to put these in place, so there are large variances in how AYAs are supported within each country.
What are the findings of your studies so far for AYAs living in NI or ROI?
I have interviewed young people who have had a cancer diagnosis between the ages of 15-24 years old, living and treated in either NI or ROI, that have been treated in a children’s or an adult hospital. Despite the different cancer types, ages and hospital environments, there were common issues that they experienced which included their education or employment being disrupted, feeling isolated from their friends, changes in their physical appearance, concerns about possible infertility, being overwhelmed during diagnosis with medical professionals and information and changes within their family relationships. What they need in terms of support can change throughout their diagnosis, treatment and into survivorship, however, they often felt that the most difficult time began when their treatment finished and they were trying to adjust to life again. Often the expectations of AYAs, families and friends may be that life will return to normal after the treatment finishes, but this is not the case. It’s often regarded as a ‘new normal’ as the young person adapts to life after such a traumatic experience. One thing I found surprising during the interviews, AYAs often commented that they wouldn’t change what happened to them, as they feel they have a new and better perspective on life.
What psychosocial support is available for AYAs in NI and ROI and are they different?
Currently in NI, the majority of AYA psychosocial support is provided through charity and voluntary organisations. Depending on the age of the person diagnosed and the hospital they are primarily treated at, they should be provided a clinical nurse specialist, a social worker and they will be put in touch with relevant support services. Currently the NI Department of Health are developing a more specialised AYA cancer pathway.
In 2022, the ROI, launched the National Model of Care for Psycho-Oncology services for Children, AYAs and their families, which is a dedicated AYA Cancer Service Network and aims to provide further support which includes psycho-oncology support; body image, sexuality and relationships support; fertility preservation and counselling and other treatment provided by a specialised multi-disciplinary team.
Navigating the support services and treatments for young people isn’t always easy, as I know from personal experience. While we were able to access some fantastic organisations and resources, it could be difficult at times to find out what was available. Even now I am still learning about the different pathways for treatment and support available.
Why is providing an AYA service in Northern Ireland so vital?
While medical treatments have improved in recent decades and cancer survival rates have increased with these advancements, there is still much more research needed to develop age-appropriate psychosocial support services for AYAs. There is an increased risk of long-term or late effects of treatment, such as fatigue, mobility issues, psychological distress for AYAs compared with their peers. This can negatively affect their quality of life and have a major impact on AYAs’ developmental milestones, including areas like establishing self-identity, gaining independence from their family and developing both peer and intimate relationships. By providing tailored, supportive interventions and a dedicated service for this specific age group, it goes without saying that AYAs will develop greater coping skills resulting in improved psychological wellbeing and therefore a better quality of life.
What are the main objectives of your PhD project and what is the desired outcome after the three years?
I have just completed the first part of the project, to qualitatively explore the impact of cancer on AYA’s psychosocial development, understand what psychological support and treatments are available and those that are needed to improve quality of life both during and after treatment. Following this, there will be a study beginning in the coming months to capture AYA healthcare and support professionals’ perceptions of their understanding of AYA psychosocial needs, difficulties or challenges they experience in addressing these needs and areas they would like training or education to help improve their knowledge or skills. Finally, the information analysed from the first two studies, will be a basis to co-produce recommendations, along with AYA, Caregivers and Healthcare professionals for an intervention support plan specific to the psychosocial needs of AYAs who have or have had cancer.
What advice would you give other young people and families going through a cancer diagnosis in NI?
I would say simply ask questions, don’t be afraid to ask your doctors, nurses, social workers or anyone involved in your care for support or where you can find support. There are amazing organisations and charities that provide support during this time, and the people that work within them are fantastic. I know they made our journey that much easier, and I am forever grateful to them for helping Phoebe get back on track.
If you would like more information on Aileen’s research or are interested exploring whether you or your family or team could take part, please contact Aileen on [email protected] .
