Teenagers and young adults with cancer, parents and age-appropriate care: ‘It didn’t only happen to me, it happened to everybody else too’

Background/rationale or Objectives/purpose: The wellbeing of young people with cancer is compromised by serious illness at a critical life course transition. Young people's care falls between paediatric, adult and specialist settings, leaving age-related care needs not well understood. Previous research highlights diverse preferences with no universal agreement on optimal age-appropriate care.

Methodology or Methods: This doctoral study explored the experiences of fourteen young people diagnosed in their teenage and young adult years (16–24 years), receiving treatment in adult settings. A series of three interviews were conducted over 12–18 months using participatory mapping to explore identity, illness, relationship and care narratives. Two interviews were undertaken with young people's identified caregivers (all parents), and single interviews with fifteen multidisciplinary professionals. The life-course paradigm and holistic wellbeing construct ‘Sense of Coherence’ were applied to analyse how young people might live well with illness and sustain their developmental trajectory.

Impact on practice or Results: Young people's experience of cancer is confirmed as an evolving process with common transitions and unique turning points. Dominant cancer discourses, healthcare system hierarchies and normative models of independent ‘adulthood’ and youth development are identified as constraining influences on their capacity to maintain wellbeing. Supportive relationships with parent/caregivers, family, peers and professionals are identified as vital resources with evidence of sustained and accelerated age-related development.

Discussion or Conclusions: Relationship-based care: An increased focus on relationship-building, communication and resource-orientated support for young people and their parent/caregiver(s) is recommended to help young people engage with their illness experiences as valued, if unwelcome, opportunities for wellbeing promotion across the life course. 

Biography: Suzanne is a social worker and systemic family psychotherapist. She joined the Social Work lecturer team at Queen’s University Belfast in 2014, where she leads the postgraduate multidisciplinary systemic practice and family therapy programmes. She has over twenty years’ clinical practice experience with children, young people and their families in a range of cross-sector contexts including physical health and disability, mental health, and children’s services. Suzanne worked in statutory social work with teenagers and young adults with cancer (TYA) where she contributed to shaping the future of TYA services in N. Ireland with the Children and Young People’s Group of the N. Ireland Cancer Network. In 2009 she was awarded a Research and Development Fellowship by the N. Ireland Research and Development Office, Public Health Agency to undertake a doctoral study to explore the wellbeing of teenagers and young adults with cancer and optimal healthcare. This study was sponsored by the Belfast Health and Social Care Trust and Queen’s University Belfast. Her research interests include the mental health of vulnerable children and young people, and the role of social work, family therapy and/or systemic interventions, enhancing the wellbeing and resilience of children, young people and families experiencing a range of adverse life experiences.