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Simple Summary: Developing cancer during adolescence or young adulthood adds extra challenges to an already difficult period of development. This can cause a 'biographical disruption,' in the sense that people miss out on key milestones they might reasonably have expected to achieve during the period, and this can affect their emotional wellbeing. While research shows that young people may experience various degrees of emotional distress, less is known about the emotional experiences and barriers young people experience when accessing help and support. We interviewed two groups of young people who were within 6 months of diagnosis and 3–5 years after treatment. We found three themes that described emotional health experiences: the emotional impact of cancer; personal barriers to support; and support to improve mental health. Differences were identified across the treatment journey, in which we were able to propose therapies and interventions that could be used to help improve psychological outcomes. 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. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To be able to demonstrate the multiple impacts of research educational initiatives to the organisation funding them • To appreciate why changes in culture are needed in the health professions to support an evidence-base to better serve our populations • To understand how to build research capacity and show the benefit of investing in training opportunities Background: There is increasing emphasis in the UK on developing a nurse, midwife and allied health professional (NMAHP) workforce that conducts research. Training for clinical academic careers is provided by the National Institute for Health and Care Research (NIHR). However, the low number of successful applicants suggested there were barriers to achieving this. The Centre for Nursing and Midwifery Led Research (CNMR) launched a fellowship programme in 2016 to backfill two days a week of NMAHPs' time for up to a year, to give them time to make competitive applications to the NIHR. Aim: To report a study evaluating the CNMR fellowship programme. Discussion: The making Visible the ImpaCT Of Research (VICTOR) tool (Cooke et al 2019) was developed to describe the organisational impact of research. The 2016-17 CNMR fellows completed VICTOR and their responses were analysed using a framework approach. The analysis found the main benefits of participating in the programme were protected time for research, opportunities to develop collaborations, increasing intra- and inter-professional awareness of NMAHPs' research, peer-reviewed publications, and conference presentations. Challenges included a lack of support from line managers, limited value placed on NMAHPs' research and failure to backfill posts. Conclusion: There were some challenges with the fellowship programme, but all recipients found it to be a positive experience and undertook significant scholarly activity. Implications for practice: A contractual agreement must be established to foster committed partnerships between higher education institutions (HEIs) and the NHS. HEIs and the NHS should conduct frank discussions of the challenges encountered in fellowship programmes. Positive initiatives and outcomes in tertiary education and clinical settings should be shared to improve fellows' experiences and enhance partnerships between HEIs and the NHS. Job descriptions should include time allocation to review fellowship candidates' applications regardless of outcome. The showcasing of research successes and the benefits of NMAHP research must evolve to secure organisational 'buy in', which is the precursor to widening access to clinical academic pathways. [ABSTRACT FROM AUTHOR]

The overall aim was to evaluate the key worker role across principal treatment centres for children with cancer in England, Wales and Scotland. Mixed-methods case study gathering data from multiple perspectives using questionnaires, interviews, focus groups and reports/performance documents over a two-year period. Framework approach was adopted to analyse transcripts and documentary data. Participants included: 22 nurse specialist key workers, 103 parents, 85 professionals and 10 children/young people. Qualitative and quantitative data were woven together, to best illuminate key worker services. Four main models of care were described as well as the context of care and process of care. Key working effectiveness centred around three pillars: care coordination; expert knowledge, experience and expertise; relationship. These were essential to improved family experience, emotional wellbeing, and delivery of individualized care closer to home. The role is complex and diverse, responding to local needs. Certain conditions, (e.g., high caseload) placed limits on enacting the three pillars, diminishing the positive experience of families. When they worked well, key workers reduced the fragmented nature of services and families placed great value on keeping the same key worker from diagnosis into long-term care. Retaining these roles, where already in place, or including, if not, we would recommend, factoring into budgets to sustain and expand such roles. [ABSTRACT FROM AUTHOR]

Aims: The overall aim of this evaluation was to look at the impact of the changes in working practices during the pandemic on nurses. This secondary analysis provided an evaluation of virtual care and being able/required to work from home. Design: This was secondary analysis of an evaluation using semi‐structured interviews. Methods: Conducted at a single National Health Service (NHS) university hospital in the United Kingdom between May and July 2020. Forty‐eight operational leads and nurses participated in semi‐structured interviews which were digitally recorded, transcribed verbatim and analysed using a framework analysis. Results: Two overarching themes emerged relating to the patient experience and nursing experience. There were both positive and negative elements associated with virtual care and remote working related to these themes. However, the majority of nurses found that virtual clinics were useful when proper resources were provided, and managerial strategies were put in place to support them. Participants felt that virtual care could benefit many but not all patient groups moving forward, and that flexibility around working from home would be desirable in the future. Conclusion: Virtual care and remote working were implemented to accommodate the restrictions imposed because of the pandemic. The benefits of these changes to nurses and patients support these being business as usual. However, clear policies are needed to ensure that nurses feel supported when working remotely and there are robust assessments in place to ensure virtual care is provided to patients who have access to the necessary technology. Impact: This was a study of the move to virtual care and remote working during the COVID‐19 pandemic. Telemedicine and flexible working were not common in the NHS prior to the pandemic but the current evaluation supports the role out of these as standard care with policies in place to ensure that nurses and patients are appropriately supported. [ABSTRACT FROM AUTHOR]

Purpose: In England, specialist cancer services for adolescents and young adults (young people) aged 15–24 are provided in 13 specialist units, with additional care provided in child and adult cancer units in the region. As a result of specialization, health care professionals (HCPs) have refined their competence, to deliver holistic care that has become central to the culture of young people's cancer care. We sought to understand and describe how HCPs developed this competence. Methods: We conducted a multiple case study in four regions across England in 24 hospitals. Data were collected through observation of clinical areas, shadowing members of the multidisciplinary team, and semistructured interviews with young people. Data were analyzed thematically and triangulated to draw meaning applicable to a range of contexts. Results: Young people (n = 29) and HCP (n = 41) across 24 different care settings were interviewed. Holistic competence enabled HCPs to deliver care that considered the age-specific needs of young people, including social, emotional, and psychological needs, in accordance with their life stage and psychosocial development. Development of holistic competence was facilitated by the following four factors: the environment, the experience continuum, enthusiasm, and education. Conclusion: The four factors facilitating holistic competence were interlinked. Working in a specialist/dedicated environment for young people increased HCPs' exposure to young people. This enabled them to become experienced in young people's cancer care, supported through education and training. Without frequent exposure to young people, HCPs were less able to achieve holistic competence, the impact of which was acutely felt by young people. [ABSTRACT FROM AUTHOR]

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of 'self' and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers. [ABSTRACT FROM AUTHOR]

Background: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. Methods: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. Result: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. Conclusion: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive. [ABSTRACT FROM AUTHOR]

Objectives: To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer. Design: Systematic review and meta-synthesis. Data sources: Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011. Review methods: Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). Inclusion criteria: adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and metasynthesis involved deconstruction and decontextualising findings to identify common themes. Results: Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences. Conclusions: The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration. [ABSTRACT FROM AUTHOR]