Background/Rationale
Adolescents and Young Adults (AYA) are recognised as a priority population group within Australia as they face unique challenges distinct from other age groups, shaped by their developmental stage, psychosocial needs, and interconnected medical, emotional, and social factors that influence their care and wellbeing. Navigating these complexities within both adult and paediatric models of care can provide challenges for staff. We aim to describe the process and learnings from working alongside AYA patients and their families within the Western Sydney Youth Cancer Service (WSYCS).
Methods
Within the WSYCS, care is delivered within an AYA model of care across both adult and paediatric cancer care services. We collected qualitative data exploring communication preferences, approaches to balancing patient autonomy with family involvement, situations requiring parental inclusion, and effective clinical strategies for supporting AYA patients within this framework.
Impact on Practice
Case reviews conducted by the WSYCS revealed several distinct challenges in treating this population. Key issues identified include: (i) managing situations where the AYA discloses information unknown to their parents, (ii) determining when and how to involve caregivers while upholding a patient-centred approach and (iii) addressing instances where caregivers hinder the patient’s autonomy in informed decision-making. Based on clinical experience, we have developed the following approaches: (i) navigating a spectrum of care that includes patient-focused, family-inclusive, and family-centred models; (ii) recognising the critical role of rapport-building with the AYA; (iii) fostering effective teamwork by understanding both our individual clinical roles and collective responsibilities; and (iv) identifying optimal communication strategies with the AYA, caregivers, and multidisciplinary teams.
Discussion
This work demonstrates the complexities of providing care to AYA patients, emphasising the need for flexible, patient-centred approaches that include families. Building rapport and effective teamwork are essential to navigating ethical and communication challenges, ultimately improving outcomes and supporting autonomy within this unique population.