No abstract

Lower levels of distress and unmet psychological needs were related to the few participants (17%) in this study who were pre-treatment, when distress was most likely. However, physical needs and information needs, which are almost inevitable throughout treatment and beyond, were more important predictors of distress. Further exploration must consider the psychosocial difficulties underlying this association and the needs of AYA at transitions between critical periods in their cancer journey (i.e., upon diagnosis, during treatment, etc.).

Awareness about the specific needs of Adolescents and Young Adults (AYA) aged 15-25 with a diagnosis of cancer has grown rapidly over the past 10 years. To improve outcomes for these patients it is essential that services are developed within youth friendly models. This requires awareness by healthcare professionals of unique biological, genetic, epidemiological, psychological, social, and cultural factors that affect the AYA population. This study sought to explore oncology professionals understanding of the healthcare preferences of AYAs with cancer receiving treatment at a specialist cancer centre. Participants comprised 60 professionals in allied health (n = 15); nursing (n = 32); oncology (n = 6) and those from the Victorian AYA Cancer Service (n = 7). A questionnaire, developed from pilot work, collected demographic information, investigated professionals' top five perceived issues for AYAs, and examined perceptions in the areas of communication; information provision; environment; services; education, employment and social life, fertility and sexuality; support and survivorship. Results illustrate that, with a strong focus on survival and physical wellbeing, professionals significantly underestimate the breadth of AYA psychosocial concerns. The findings further indicate: that young people report different healthcare preferences compared to those reported by professionals; there are varying levels of professional skill, experience and confidence; there are significant workforce development and support needs for professionals; and AYA models of care require rigorous evaluation to ensure the improvement of outcomes for young people living with cancer.

People with cancer have to contend with a variety of physical, emotional and social difficulties. Young people with cancer are often faced with the additional burden of isolation from their peers and social network. This paper outlines early results from a collaborative project seeking to use emerging technologies to develop and evaluate a peer-based social support system to support social connectivity amongst young people with cancer. We introduce an integrated service named MyTrac, which combines online social network applications and mobile broadband telephony. Seven young people (18-25yo) participated in the three month study. The study encompassed in-depth interview data, questionnaire data and an analysis of system audit logs, which documents participants' use and experience of the system. In this paper we highlight specific communications mediated by MyTrac, showing how they are a reflection of both the individual personalities of participants and a reflection of their cancer journey. We illustrate how these individual identities construct a collaborative identity for MyTrac, one which both encompasses and excludes particular types of interaction. We conclude by articulating some design considerations for social connectivity systems which seek to support young people with cancer.