The Emotional Impact of a Cancer Diagnosis: A Qualitative Study of Adolescent and Young Adult Experience.

The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.

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.

Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review.

OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death was achieved. METHODS: Clinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology-oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups. RESULTS: 74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95% CI 1.04 to 9.80, p value=0.04). CONCLUSION: Where hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision.

Health Professionals' Views on Lifestyle Advice Delivery to Teenage and Young Adult Cancer Patients: A Qualitative Study.

BACKGROUND: Many health professionals working with teenage and young adult cancer patients (TYA-HPs) do not provide advice on physical activity, dietary intake, smoking cessation, and alcohol consumption as part of routine cancer care. OBJECTIVE: The aim of this study was to understand TYA-HPs' perspectives on the provision of health behavior advice and preferences on an intervention to help develop their health promotion skills. METHODS: In-depth, semistructured interviews were conducted with 26 TYA-HPs (12 nurses, 8 clinicians, and 6 allied health professionals) whose average time working with teenage and young adult (TYA) cancer patients was 8 years. Each interview followed the same semistructured guide, which was based upon constructs of the COM-B model of behavior change (capability, physical opportunity, social opportunity, reflective motivation, and automatic motivation), transcribed verbatim, and analyzed using the Framework analysis. RESULTS: Overall, TYA-HPs recognized the value and importance of promoting health behaviors but felt that their capability to provide health behavior advice was limited by the availability of, and access to, good-quality evidence linking health behavior to cancer outcomes. The TYA-HPs expressed confusion over professional responsibility to provide choices. CONCLUSIONS: The TYA-HPs recognize health behavior promotion to be a core part of TYA cancer care but feel ill-equipped to provide such advice to patients. IMPLICATIONS FOR PRACTICE: Mapped to constructs of the COM-B model of behavior, these findings suggest that TYA-HPs would benefit from cross-multidisciplinary team support for improved access to TYA-specific resources covering key health behaviors and skills-based training on delivering lifestyle advice.

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.

Role of the Advanced Nurse Practitioner Within Teenage and Young Adult Oncology. What is the Impact on Patient and Staff Experience of a New Nurse Practitioner Role to a Teenage and Young Adult Service?

Background: Advanced Practice is recognized by the Royal College of Nursing as a distinctive level of practice encompassing direct care provision, education, research, and management. Advanced Nurse Practitioners (ANP) are educated to MSc level and assessed as competent in their field. A teenage and young adult advanced nurse practitioner (TYA ANP) was introduced in 2015, one of few within the United Kingdom. This service evaluation assesses the impact of the new role on patient and staff experience. Aims/Objectives: To evaluate the impact of TYA ANP role on the experience of TYA oncology patients and the multidisciplinary team (MDT) and to assess perception of quality, safety, and efficiency of this role. Methodology: Retrospective data collection using Australia Nurse Practitioner Study Questionnaire to MDT and patients treated within the TYA unit since the ANP role was introduced. Descriptive statistics were used to analyze outcomes of the data collected. Results: Eighty-six percent of patients and 90% of staff felt they understood the ANP role. While 100% of patients felt the TYA ANP service was a success, met their needs, prescribed correctly, offered holistic and safe care, and had a positive impact on care. Furthermore, 86% of patients felt the TYA ANP service was easy to use and 90% of staff felt the TYA ANP service met the needs of the patients. Discussion/Conclusion: Overall patients and staff reported a positive experience particularly on correct diagnosis, safe prescribing, and having a positive impact on care. Areas for improvement include wider understanding of the role.

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.

Sexuality and cancer: The experience of adolescents and young adults.

There are many components affecting the experience of sexuality for adolescents and young adults living with and beyond cancer. For patients, the interruption to normal socialization creates gaps in information and experience that potentially hinder development. In clinical practice, conversations relating to sexual consequences of illness or treatment are rare, as are age-appropriate assessment and intervention. In service design, the collaborative approach of oncofertility has yet to be replicated for sexuality. This paper considers how these obstacles can be overcome through local service development to address unmet need and promote sexual well-being for this group of patients.

Sex, Body Image, and Relationships: A BRIGHTLIGHT Workshop on Information and Support Needs of Adolescents and Young Adults.

PURPOSE: Discovering sexuality and romantic relationships are important development milestones in adolescence and young adulthood. A cancer diagnosis imposes obstacles for young people such as changes in their sexual function due to the disease and/or side effects of treatment, body image concerns, and interpersonal relationship difficulties. This can cause psychological distress and can impact on quality of life. We aimed to explore sexual health information and support needs of adolescents and young adults with cancer. METHODS: Five young people aged 16-24 years, with a previous cancer diagnosis when aged 13-22 years, attended an in-depth 4-hour workshop. The framework approach was used to analyze workshop transcripts. RESULTS: Three overarching themes emerged: (i) information sharing; (ii) contexts and relationships (influencing factors); and (iii) information sharing preferences. Information shared by healthcare professionals was focused on a medicalized view of sex with symptoms, infection control, and protected sex at its core. Young people had unanswered questions related to sexual function, the impact of cancer and how to manage it, and about pleasure, body image, and relationships. Parents' presence at clinical consultations inhibited discussions about sex. Young people wanted professionals who were comfortable to talk about sex with them. CONCLUSION: Young people exhibited significant unmet needs around information provision on sex, body image, and relationships. They wanted information to be given by professionals and access to online resources. Development of training for professionals and resources to support young people requires further work.

Protecting an adult identity: A grounded theory of supportive care for young adults recently diagnosed with cancer.

BACKGROUND: For adolescents and young adults living in high-income countries cancer remains the most common disease-related death. Increasing survival rates and projected longevity are positive outcomes, although long-term consequences of cancer and/or its treatment will likely increase the global burden of cancer. In low and middle-income countries the impact and needs of young adults with cancer are largely unknown and require further attention. However, universal studies have revealed that cancer-related needs for this group are multifactorial, complex and largely unmet. In response to these findings, the body of work on supportive care for young adults with cancer is growing. Yet, there is no published research in the context of the United Kingdom, regarding the role young adults play in managing their supportive cancer care needs. OBJECTIVE: To explore the experience, purpose and meaning of supportive cancer care to young adults recently diagnosed with cancer. DESIGN, SETTING AND PARTICIPANTS: Using constructivist grounded theory, data were collected in one to one interviews with eleven young adults (seven women and four men aged 19-24 years) being treated for cancer in two English hospitals. Data were analyzed using open and focused coding, constant comparison, theoretical coding and memoing, and this enabled construction of a subjective theory. RESULTS: Young adults in this study interpreted cancer as an interruption to the events, experiences and tasks forming the biographical work of their adult identity. Data analysis led to the construction of the theory, 'protecting an adult identity: self in relation to a diagnosis of cancer in young adulthood'. This theory arose from three categories: fragility of self, maintaining self in an altered reality and mobilizing external resources. Young adults faced the loss of their early adult identity. Interpreting cancer as a temporary interruption, they sought to re-establish their identity by directly and indirectly managing their supportive care needs. CONCLUSIONS: These findings contribute to the understanding of young adults' desired purpose of supportive cancer care. There are also implications for how health and social care professionals provide supportive care interventions to meet the needs of this population.

Breeding density, fine-scale tracking, and large-scale modeling reveal the regional distribution of four seabird species.

Population-level estimates of species' distributions can reveal fundamental ecological processes and facilitate conservation. However, these may be difficult to obtain for mobile species, especially colonial central-place foragers (CCPFs; e.g., bats, corvids, social insects), because it is often impractical to determine the provenance of individuals observed beyond breeding sites. Moreover, some CCPFs, especially in the marine realm (e.g., pinnipeds, turtles, and seabirds) are difficult to observe because they range tens to ten thousands of kilometers from their colonies. It is hypothesized that the distribution of CCPFs depends largely on habitat availability and intraspecific competition. Modeling these effects may therefore allow distributions to be estimated from samples of individual spatial usage. Such data can be obtained for an increasing number of species using tracking technology. However, techniques for estimating population-level distributions using the telemetry data are poorly developed. This is of concern because many marine CCPFs, such as seabirds, are threatened by anthropogenic activities. Here, we aim to estimate the distribution at sea of four seabird species, foraging from approximately 5,500 breeding sites in Britain and Ireland. To do so, we GPS-tracked a sample of 230 European Shags Phalacrocorax aristotelis, 464 Black-legged Kittiwakes Rissa tridactyla, 178 Common Murres Uria aalge, and 281 Razorbills Alca torda from 13, 20, 12, and 14 colonies, respectively. Using Poisson point process habitat use models, we show that distribution at sea is dependent on (1) density-dependent competition among sympatric conspecifics (all species) and parapatric conspecifics (Kittiwakes and Murres); (2) habitat accessibility and coastal geometry, such that birds travel further from colonies with limited access to the sea; and (3) regional habitat availability. Using these models, we predict space use by birds from unobserved colonies and thereby map the distribution at sea of each species at both the colony and regional level. Space use by all four species' British breeding populations is concentrated in the coastal waters of Scotland, highlighting the need for robust conservation measures in this area. The techniques we present are applicable to any CCPF.

Nursing young people with cancer: What is "different" about it?

Nursing Adolescents and Young Adults (AYA) with cancer is a relatively new specialty, with much work having been undertaken across Europe. As this evolving specialty develops, nurses are required to develop networks, learn from each other and help to shape services across countries. Describing the cancer journey, this paper looks at the literature and, merging it with over 20years of experience, describes 'what is different' about looking after this group of young people. Looking at the specific issues about caring for AYA, including those issues that are pertinent in this age range: i.e. education/employment, fertility, body image, peers, family relationships, it discusses the development of specific services for this cohort of patients; one that is centred around the young person and their friends and families. Taking into account the need to develop multidisciplinary teams, it also highlights the needs of nurses who work in these teams, the education, skills and attributes needed to develop gold standard services for these challenging young people. The further development of nursing networks internationally is urged in order to share practice and expertise, nurture teams and bring the AYA with cancer into sharp focus.

Building the Evidence for Nursing Practice: Learning from a Structured Review of SIOP Abstracts, 2003-2012.

BACKGROUND: The focus of work submitted to an international conference can reflect the changing landscape of a specialty and prove important for identifying trends, uncovering gaps, and providing new directions for nurse-led research and clinical practice. We present an analysis of trends in presentations in the nursing program at the SIOP congress from 2003 to 2012 based on all accepted abstracts. PROCEDURE: A total of 462 abstracts were analyzed. A data extraction form was used to ensure consistency of data retrieved. Paired researchers were assigned 2 years of abstracts for assessment: approximately 80-100 abstracts each. Data were entered into REDCap data management software. RESULTS: Most abstracts came from presenters affiliated with institutions in Europe and North America with a noticeably significant under-representation from developing countries. There was an equal representation of papers focused on empirical research with family members and clinical practice focused on the professional role, although this varied in some years. Analysis of research methodology revealed a predominance of surveys, with a recent increase in qualitative and mixed method studies. Out of all abstracts only 18% were subsequently published. CONCLUSIONS: Gaps have been identified, such as the limited involvement of nurses in developing countries, and lack of studies self-reporting from children. Much needs to be done to promote a greater diversity of research frameworks and more dynamic research designs. The small percentage of abstracts from nurses that are eventually published may hinder translation of the findings into clinical practice.

Influencing organisational culture: a leadership challenge.

In the wake of the Francis report, the need for NHS trusts and hospitals to adopt a culture of learning, safety and transparency has been highlighted. This article considers different aspects of culture in health care, and hones in on the link between culture and safety for patients in putting the patient first, embedding the 6Cs and considering the options to measure and influence organisational culture. The article reflects more deeply on how leadership across all levels can influence and inspire change in organisational culture, ensuring that the patient remains the focus of any changes in care delivery.

Space partitioning without territoriality in gannets.

Colonial breeding is widespread among animals. Some, such as eusocial insects, may use agonistic behavior to partition available foraging habitat into mutually exclusive territories; others, such as breeding seabirds, do not. We found that northern gannets, satellite-tracked from 12 neighboring colonies, nonetheless forage in largely mutually exclusive areas and that these colony-specific home ranges are determined by density-dependent competition. This segregation may be enhanced by individual-level public information transfer, leading to cultural evolution and divergence among colonies.

What are the experiences of the child with a brain tumour and their parents?

Brain tumours are one of the most common forms of childhood cancer, affecting approximately 350 children in the UK each year (CancerBackup, 2005). The complex and long treatment for such tumours is often delivered in more than one place of care, as a result children and their families meet a large number of healthcare professionals from a variety of disciplines. The study described in this paper was undertaken to explore the experiences of children/young people (C/YP) with a brain tumour (and their families) being treated at a NHS Trust. A longitudinal, exploratory and descriptive case study was undertaken, using multiple methods of data collection. Three age appropriate data collection techniques were used with children; a modified Mosaic Approach (Clark and Moss, 2001) for children 4-6 years; the 'draw and write technique' with children aged 6-12 year olds, children over 12 years old were interviewed. Semi-structured interviews were also undertaken with parents. Ten children aged 4-13 years, nine mothers and nine fathers took part in the study. Data were analysed using the process described by Ritchie and Spencer (1994). Four themes are identified, receiving and seeking information, finding your way through, how life is affected, who and what help? The process of receiving and seeking information was a challenge for both parents and children. Age appropriate environment and activities helped with adjustment and boredom during long waits and treatment. The need for support from one individual to help families find their way through the complexity of healthcare was a persistent theme. Insights into what children and their parents value from the services offered and areas that they as users find challenging were identified from this study and the findings have implications for future practice and service provision.

Establishing nursing research priorities on a paediatric haematology, oncology, immunology and infectious diseases unit: involving doctors and parents.

Following a Delphi survey undertaken with nurses on a specialist children's unit to identify priorities for nursing research, this paper outlines the results of a survey to ascertain the views of doctors and parents regarding the results of the Delphi. This approach was in keeping with national guidance on multi-professional working in paediatric oncology and the importance of service-user involvement in planning and evaluating care. Convenience samples of doctors (n=16) and parents (n=10) were asked to rank the priorities previously identified by nurses. Results highlighted that in the main, nurses, doctors and parents agreed on the key areas that should take priority for research. Nurse's knowledge of day-to-day symptom management, children's quality of life, negotiation and communication in relation to care provision were identified by all three groups as high priorities. There were some areas where the views varied: this was generally in relation to the different primary focus of the individual groups-parents being very concerned with the effect of daily ward routines and procedures and their child's overall hospital experience, nurses with issues such as staff retention and morale, whereas doctors were more concerned with issues around information giving and consent to treatment. Limitations of the study, including sample selection and the transient nature of the population involved are discussed within the paper. The paper concludes that all three groups shared similar views, being focused on issues directly related to patient care. Consensus between the groups should result in future research initiatives reflecting a shared focus and responding to an identified need.