Is there scope to do better? Clinical communication with adolescents and young adults with cancer-A scoping review.

INTRODUCTION: How to communicate effectively with adolescent and young adults with cancer (AYACs) is a research priority. In a UK-wide survey of young people with cancer's research priorities, communication was a striking cross-cutting theme. It is increasingly recognised that AYACs have experiences and communication needs that differ significantly from those of younger children and older adults. The purpose of this review is to explore the features of effective clinical communication with AYACs. METHODS: A literature search was undertaken to identify and map the available evidence using a broad scope to get an overview of the pertinent literature, identify knowledge gaps and clarify concepts. The searches yielded 5825 records, generating 4040 unique articles. These were screened and 71 full articles were read by four researchers with disagreements resolved by discussion leaving 29 included articles. Narrative synthesis was undertaken in relation to each of the research questions. RESULTS: Three key themes were identified: being an adolescent/young adult, supporters, and healthcare professionals (HCPs). AYACs need to feel that HCPs understand their unique perspective. They want to be involved, this changes over time and in different contexts. Supporters are a central tenet, are most often parents and undertake several roles which are not always universally supportive. HCPs enable involvement of AYACs, and this needs to be actively promoted. AYACs preference for their level of involvement requires continual assessment. The three themes are interlinked and exist within the wider scope of the triadic encounter and cancer experience. CONCLUSION: Supporters, most often parents were a key feature across the data and were seemingly paradoxical in nature. Triadic communication, the presence of a third person, is a central tenet of communication with AYACs and we propose a conceptual model to represent the nuances, components, and facets of this complex communication.

Determining Domains of Practice for Youth Support Co-Coordinator Work in Teenage/Young Adult Cancer Care in United Kingdom.

Purpose: Youth support coordinators (YSCs) provide youth-focused psychosocial support to teenagers and young adults (TYA) with cancer, within multidisciplinary teams (MDTs) in National Health Service (NHS) specialist cancer environments. This action research project aimed to provide insight into the work of YSCs with TYA with cancer, within MDTs in clinical settings, and to develop a knowledge and skill framework for YSCs. Methods: An action research approach was taken involving two focus groups, with Health Care Professionals (n = 7) and TYA with cancer (n = 7), and a questionnaire with YSCs (n = 23). Data were analyzed using a thematic analysis approach. A research steering group ensured consistency with the participatory methodology. Results: The positive value of YSC contribution to patients and MDT was echoed across the data sets. Four domains of practice were identified for inclusion in a YSC knowledge and skill framework: (1) adolescent development; (2) the TYA with cancer; (3) working with TYA with cancer; and (4) professional practice of YSC work. Conclusion: Findings highlight the interdependence of YSC domains of practice. For example, the impact of cancer and its treatment must be considered alongside biopsychosocial knowledge relating to adolescent development. Similarly, skills for running youth-focused activities need adapting to the professional cultures, rules, and practices of working in health care systems. Further questions and challenges are raised, such as the value and challenge of therapeutic conversations; practice supervision; and the complexities of the "insider/outsider" perspectives YSCs bring. These insights potentially have important transferability to other areas of adolescent health care.

Experiences of early-career nurses working in specialist adolescent/young adult cancer units: A narrative inquiry.

AIM: To explore the experiences of early-career registered nurses working in specialist adolescent/young adult cancer units. DESIGN: Narrative Inquiry. METHODS: A purposive sample of nine early-career registered nurses from six specialist adolescent/young adult cancer units in the United Kingdom participated in online in-depth narrative conversations between October 2020 and January 2021. Data were analysed thematically using Clandinin and Connelly's (2000) metaphorical three-dimensional narrative inquiry approach focussed on commonplaces of temporality, sociality and place. RESULTS: The intensity and complexity of the nursing work associated with young patients and their families, over protracted periods, impacted the nurses personally and professionally. The similarity of age between patients and nurses was shown as having benefits as well as posing risks. The complexity of four types of nursing labour was highlighted: emotional, cognitive, physical and organizational providing justification for the provision of specialist training and support. CONCLUSION: This study presents unique insights into the complex work of early-career nurses in specialist units that reveal challenges in caring for the distinct needs of this cancer patient population. IMPACT STATEMENT: Better understanding of the experience of adolescent/young adult nursing work is revealed. Nurse managers could use these findings to consider the level of expertise on cancer units and ensure a spread of ages and experience. Managers and funders should also consider the clinical supervision and well-being needs of nurses so that they can thrive in these unique environments. Educators could use findings to develop curricula and reinforce messages of self-care, reflection and boundary management. The findings of this study may be transferable to other areas where early-career nurses care for younger age groups. PUBLIC AND PATIENT ENGAGEMENT AND INVOLVEMENT IN RESEARCH STATEMENT: No patient or public contribution was requested or required as this research wanted to examine nurses' experiences and not those of patients or the public.

Exploring Young People's Experience of Ending Active Cancer Treatment: When the "Little Cancer Treatment Bubble" Pops.

BACKGROUND: The end of active cancer treatment is described as a stressful period for adolescents and young adults (AYAs). However, research evidence describing the experience of AYAs as they transition from active treatment into follow-up care is scarce. OBJECTIVE: We aimed to understand AYAs' experiences within the first 12 months of ending active treatment. METHODS: Data were collected using semistructured interviews, which were digitally recorded and transcribed verbatim. Qualitative analysis of transcripts was used to identify key themes/subthemes. RESULTS: Eleven AYAs (8 female participants), diagnosed with cancer aged 17 to 25 years and 19 to 26 years at point of interview, participated. At time of interview, 7 were within 6 months of treatment completion, and in 4 participants, treatment ended 6 to 12 months prior. Three main themes were identified: (1) challenges of social reintegration and self-identity, (2) expectations versus the lived experience of ending treatment, and (3) sudden loss of the safe "bubble" of treatment. CONCLUSIONS: Adolescents and young adults were underprepared for and challenged by the unexpected emotional and physical consequences of ending active cancer treatment. IMPLICATIONS FOR PRACTICE: Young people require information and support to prepare for ending active treatment and reintegration to everyday life. Preparation for the short- and long-term physical, social, and psychological impact of a cancer diagnosis even when treatment ends will assist young people in managing this transition. Further research is required to develop and test interventions to provide timely, structured, and equitable information and support at the end of treatment to better prepare AYAs for the challenges they may face as treatment ends.

The support and information needs of adolescents and young adults with cancer when active treatment ends.

BACKGROUND: The end of active treatment is a period of high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to understand the needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at the end of active treatment. METHODS: This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations. RESULTS: Telephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19-26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people's emotional well-being; and development of more information and resources specific to young people. CONCLUSION: The access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people's needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the 'end of treatment' transition process means.

An analysis of the development of adolescent and young adult cancer care in the United Kingdom: A Foucauldian perspective.

This paper analyses the development of the specialism of adolescent and young adult (AYA) cancer care via a Foucauldian lens to consider how knowledge and awareness have grown since questions were first raised about unmet needs of AYAs with cancer. The AYA specialism has gathered momentum over the last 30 years in the United Kingdom (UK) and is fast gathering pace internationally. Fundamental to this process has been the combined contribution from nursing and other health professionals, researchers, policy-makers and philanthropists. From an initial process of problematisation, through a gradual growth in empirical knowledge and resultant shifts in health policy, a new nexus of expertise has emerged that enabled AYA cancer care to become recognised as distinct from either child or adult oncology. Different stakeholders contributed to the discourses that have underpinned this development-a process likely to continue as it expands further. This paper draws on examples from the growth of the AYA specialism, the emergence of new professional roles and a growth in research. It illustrates how the coalescing of multiple perspectives allowed new discourses and, ultimately, new practices to be established that now have global impact.

Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature.

INTRODUCTION: The end of active treatment is a stressful period for adolescents and young adults (AYA), but little is known about AYA experiences at this time point. The aim was to describe the issues young people experienced and identify interventions to support AYA at the end of treatment. METHODS: We conducted a rapid review of published primary research to identify what is currently known about AYA experiences of the end of treatment, the issues which arise and existing interventions to support AYA at this time. RESULTS: Searches identified 540 papers of which 16 met the inclusion criteria. Five main themes were identified: physical/medical issues; psychological, social and emotional issues; information and support needs; sources of information and support; and difficulties accessing information and support. Within these broader themes, several subthemes were identified and explored further. CONCLUSION: Adolescents and young adults are under prepared for the unpredictable and ongoing nature of the physical, psychological and social issues they face at the end of cancer treatment. Enabling young people's inclusion within their relevant social and educational peer networks should be a priority. Timely, structured and equitable information/support is needed to prepare AYA for treatment ending and subsequent reintegration to "everyday" life.

Evaluation of an online course on the care of teenagers and young adults with cancer.

Teenagers and young adults with cancer face significant challenges throughout their cancer journey. Psychosocial issues are considered to be among the most challenging faced by patients, families and healthcare professionals. Staff from Coventry University met with a group of international experts in Bangkok in 2006 to discuss the specific educational needs of various members of the healthcare team who care for this group of patients. Key concepts discussed there became a reality when this online, interprofessional course was accredited and commenced in February 2007. Evaluation from student, educational, technical and organisational perspectives indicates that the course is meeting the needs of students and has established a model for online provision that can be used in other subject domains.