Fulfilling the Vision of Youth-Friendly Cancer Care: A Study Protocol.

PURPOSE: There is growing evidence about the extent that cancer in adolescents and young adults (AYAs) can interrupt normal developmental trajectories, which places the onus on cancer services to buffer these impacts. This article reports the protocol of a four-stage study that aimed to establish how well Australian cancer treatment services are providing youth-friendly cancer care, that is, quality care that best meets young people's needs. The overall goal of this study is to develop an evidence-informed model of cancer care for this age group. METHODS: Eligible patients were 15-25 years old and 6-24 months from a cancer diagnosis, and a nominated carer. Stage 1 consisted of in-depth, semi-structured interviews. Qualitative analysis identified the major domains affected by cancer. Stage 2 was the development of a survey tool for AYA and parents to measure these domains, compiled from validated instruments of: psychological distress; post-traumatic growth; quality of life; social support; quality of services, information, and needs; physical, psychological, and social needs; self-management; and experience of care, as well as questions covering additional domains (e.g., fertility preservation). Stage 3 was a national survey of AYAs and parents. This information will inform the development of a program model, to be refined by stakeholder consultation in Stage 4. CONCLUSION: Analysis of these data will inform how well cancer services meet the needs of AYAs and their parents around clinical services and psychosocial supports, the physical environment, and information, with the ultimate goal of informing a program model of AYA cancer care.

Pediatric oncology survivorship: conveying risks and communicating information at the right time for the individual.

PURPOSE OF REVIEW: To summarize and discuss recent research (2011-2013) examining the communication needs of childhood cancer survivors with respect to long-term health risks and considering the developmental needs of children, adolescents and young adults. RECENT FINDINGS: Survivors' levels of awareness of ongoing health risks are low, indicating that clinical strategies for communicating risks and empowering young people as active partners in their own healthcare are lacking. Research examining the information needs of very young survivors is sparse. Adolescent and young adults may be particularly vulnerable given their lack of health-risk knowledge combined with expected developmental risk-taking behaviors. Strategies to manage individual information preferences of survivors are required, along with strategies to manage the triadic (child, parent, health professional) nature of communications. Internet technologies offer an important mechanism for communication of health risks to survivors, families and primary healthcare providers. SUMMARY: International efforts must continue to articulate systematic yet flexible approaches to communication with children, adolescents and young adults that can be applied across the cancer treatment continuum and into surveillance and long-term survivorship. Information and communication needs of this population are complex and reliance on age as a proxy for capacity to participate in healthcare communication is inadequate.

Visual storytelling: a beneficial but challenging method for health research with young people.

Visual storytelling is a new research approach drawing on established methods of photovoice and photo elicitation. It appears well suited to research with young people. We explored the feasibility of this approach, reflecting on benefits and challenges encountered while using it during a study of chronic disease self-management in adolescents. During in-depth interviews, 68 participants were questioned about the value of visual storytelling. Thematic analysis was applied. Visual storytelling was valued for (a) being a draw card during recruitment and increasing positive feelings about the research; (b) being fun; (c) promoting self-understanding; and (d) promoting expression, communication, and focus during interviews. Deciding what to photograph was difficult. More time and effort was required by researchers than for a standard qualitative interview study. The technique facilitated rich interviews, drawing into focus details of young peoples' lives that otherwise might not have been discussed.

Is my mum going to hear this? Methodological and ethical challenges in qualitative health research with young people.

Ethical issues arise in all research settings. However, qualitative research with young people raises specific dilemmas that warrant special attention. In this paper we describe an ethical dilemma that arose during a qualitative project we carried out exploring self-management of chronic illness in adolescents. A participant disclosed details of poor adherence with medication, which had significant health implications. Prior to this disclosure he had been assured of confidentiality and thus we found ourselves unsure of how to proceed. Here, we analyse the case in detail, highlighting the ethically important moments, the options for action and the implications of these. We do this with the aim of facilitating ethical mindfulness and thus, ultimately, ethical research practice. As a backdrop to this case we consider the broader ethical context. We find that qualitative research is susceptible to ethical dilemmas because: (1) it is not always possible to predict all possible questions and responses; (2) the nature of the relationship between researchers and participants is amenable to sensitive disclosures; (3) the process of qualitative research can make it difficult for participants to voice concerns or withdraw; and (4) participants' identities are generally known to researchers, complicating boundary issues. Research with young people is susceptible to ethical dilemmas because: (1) young people have limited life experience; (2) consent is often required from both young people and parents; (3) issues of competence can complicate assumptions about informed consent; and (4) the power differential between researchers and participants is significant. When combining qualitative research methods and young participants, the scope for ethical risk is thus substantial.