Young people with cancer, wellbeing and hospital care: ‘We’re all in this together’

YOUNG PEOPLE WITH CANCER, WELLBEING AND HOSPITAL CARE ‘We’re all in this together’ Suzanne Mooney Queen’s University Belfast and Belfast Health & Social Care Trust Background: Teenagers and young adults with cancer are recognised as a vulnerable patient cohort whose wellbeing is compromised by the dual crisis of life-threatening and debilitating illness at a critical life course transition. Cared for in paediatric and adult hospital settings, little is known about young people and their family’s lived experience of illness and healthcare and the constituents of age-appropriate care. Aims and Objectives: This study examines young people and carers’ experiences of cancer and healthcare provision, investigating how hospital care can promote wellbeing throughout the illness trajectory. Methods: This doctoral study explores the perspectives of teenagers and young adults [16-19, 20-24 years], carers and multi-disciplinary professionals. A series of three qualitative interviews were conducted over 12 months with 14 young people receiving treatment in adult healthcare. Interviews utilised visual diagramming (family trees, social network maps and timelines) to support active engagement while exploring identity, illness, relationship and healthcare narratives. Two interviews were also conducted with the identified primary carer(s), all parents, over the same time period. Supplementary single interviews were undertaken with 15 multi-disciplinary hospital professionals. Thematic analysis applied the ‘stress-resource’ Sense of Coherence theoretical framework (SOC). Findings: Supportive relationships and inclusive communication with young people and families are identified as central components of wellbeing-promoting hospital care enabling young people find meaning in their experience, manage uncertainty, access resources, sustain illness and treatment and remain engaged in life. Multi-disciplinary professionals are confirmed as active participants in the young person and family’s evolving illness narratives with the potential to contribute positively to their wellbeing, enhancing strengths and coping resources for inevitable challenges. Conclusions: Increased focus on relationship-building, communication processes and strength-orientated support for young people and their primary carers is recommended as a prerequisite for optimal age-appropriate care which can support the young person’s emerging adulthood while welcoming carer involvement. Suzanne Mooney is a social worker and systemic family psychotherapist with 20 years’ experience working with vulnerable young people and families in a wide range of contexts, including young people with cancer, and child, adolescent and adult mental health settings. Suzanne is currently a lecturer in social work at Queen’s University Belfast where she leads the systemic practice and family therapy programmes. This study is funded by the N. Ireland Research and Development Office, Public Health Agency.