How COVID-19 has affected staffing models in intensive care: A qualitative study examining alternative staffing models (SEISMIC).

AIMS: To understand how COVID-19 affected nurse staffing in intensive care units (ICUs) in England, and to identify factors that influenced, and were influenced by, pandemic staffing models. DESIGN: Exploratory qualitative study. METHODS: Semi-structured, online interviews conducted July-September 2020 with regional critical care leaders including policy leads (n = 4) and directors/lead nurses (n = 10) across critical care networks in England. FINDINGS: The six themes emerging from the framework analysis illustrate how the pre-pandemic ICU culture influenced ICU staffing models during the pandemic. Changes in staffing impacted on the workforce and the care delivered, whilst it was necessary to learn from, and adjust to, a rapidly changing situation. Variation across and between networks necessitated variation in responses. The overwhelming outcome was that the pandemic has challenged the central tenets of ICU nurse staffing. CONCLUSIONS: Pandemic nurse staffing models resulted in changes to ICU skill-mix and staffing numbers. Factors such as the impact of nurse staffing on care practices and on the workforce need to be taken into account when developing and testing future nurse staffing models for ICU. The extent to which ICUs will return to former staffing models is not yet known but there seems to be an appetite for change. IMPACT: In common with many countries, nurse staffing in English ICUs was adapted to address surge requirements during the COVID-19 pandemic. Findings highlight the challenge COVID-19 presented to pre-pandemic ICU nurse staffing guidelines, the impact on patient and staff well-being and the potential legacy for future staffing models. Study findings have implications for ICU nurse managers, researchers and policy makers: nurse staffing models need to be adaptable to the local context of care and future research should investigate the impact of different models on patients, staff and health service outcomes.

The organisation of nurse staffing in intensive care units: A qualitative study.

AIMS: To examine the organisation of the nursing workforce in intensive care units and identify factors that influence how the workforce operates. BACKGROUND: Pre-pandemic UK survey data show that up to 60% of intensive care units did not meet locally agreed staffing numbers and 40% of ICUs were closing beds at least once a week because of workforce shortages, specifically nursing. Nurse staffing in intensive care is based on the assumption that sicker patients need more nursing resource than those recovering from critical illness. These standards are based on historical working, and expert professional consensus, deemed the weakest form of evidence. METHODS: Focus groups with intensive care health care professionals (n = 52 participants) and individual interviews with critical care network leads and policy leads (n = 14 participants) in England between December 2019 and July 2020. Data were analysed using framework analysis. FINDINGS: Three themes were identified: the constraining or enabling nature of intensive care and hospital structures; whole team processes to mitigate nurse staffing shortfalls; and the impact of nurse staffing on patient, staff and intensive care flow outcomes. Staff made decisions about staffing throughout a shift and were influenced by a combination of factors illuminated in the three themes. CONCLUSIONS: Whilst nurse:patient ratios were clearly used to set the nursing establishment, it was clear that rostering and allocation/re-allocation during a shift took into account many other factors, such as patient and family nursing needs, staff well-being, intensive care layout and the experience, and availability, of other members of the multi-professional team. This has important implications for future planning for intensive care nurse staffing and highlights important factors to be accounted for in future research studies. IMPLICATIONS FOR NURSING MANAGEMENT: In order to safeguard patient and staff safety, factors such as the ICU layout need to be considered in staffing decisions and the local business case for nurse staffing needs to reflect these factors. Patient safety in intensive care may not be best served by a blanket 'ratio' approach to nurse staffing, intended to apply uniformly across health services.

Health professional perceptions of communicating with adolescents and young adults about bone cancer clinical trial participation.

PURPOSE: Low recruitment of adolescents and young adults in cancer clinical trials is widely reported and may be linked to limited improvements in survival. Research to date does not adequately explain all underlying reasons for poor trial accrual. This paper reports health professional perceptions of communicating with adolescents and young adults with bone sarcoma about clinical trial participation. METHODS: This study used narrative inquiry. Findings are reported from thematic analysis of in-depth interviews with 18 multidisciplinary health professionals working in a supra-regional bone and soft tissue sarcoma centre. RESULTS: Participants described professional expertise, the development of specialist knowledge and skills and strategies used to develop trusting relationships with adolescents and young adults with bone sarcoma. These factors were perceived to facilitate communication about clinical trial participation. Emergent themes were having credibility through expertise of the team, developing specialist communication skills through reflection on practice, having inclusive approaches to education and training about clinical trials, individual communication styles used to form trusting relationships, using a patient-centred approach to connect with adolescents and young adults, creating time needed to form trusting relationships and effective team working. CONCLUSIONS: We aligned findings of this study with characteristics of patient-physician trust and provide a basis for transferable recommendations. Our findings can be used to inform the development of age-specific, specialist communication skills and highlight health professional education needs about clinical trials. Additional research is needed to explore which elements of team working optimise improved clinical trial participation, in what contexts and why.

Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer.

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.

Older peoples' lived experiences of personalised care in care homes: A meta-ethnography.

BACKGROUND: Guidance and policy on personalised (or person-centred) care of older people living in care homes advocates that all residents must have their preferences considered, and that all care provided must be reasonably adjusted to meet the person's specific needs. Despite this, research that considers what matters to residents in terms of the care they receive is limited. OBJECTIVES: Our review aims to explore care home residents' lived experiences of personalised care and understand what really matters to them. METHODS: Six electronic databases (CINHAL, Medline (Ovid), Embase, PubMed, Web of Science & PsychInfo) and Google Scholar (grey literature) were searched to identify qualitative studies relating to personalised care in care home settings, which also included resident (voices) quotes. The literature review and synthesis are reported using eMERGe guidance. RESULTS: Fifteen studies met the inclusion criteria for our meta-ethnography. Four conceptual categories (the challenge of fitting into institutional care, the passing of time, holding onto a sense of self and a desire to feel at home) and two key concepts (creating a culture of purposeful living and caring and forming and maintaining meaningful & empowering relationships) were identified. Finally, a conceptual framework of understanding represents what personally matters to residents in terms of their care. CONCLUSION: Our meta-ethnography, guided by residents' lived experiences of personalised care, offers a new perspective of what personally matters to residents in terms of the care they receive. The conceptual framework of understanding highlights the importance of moving from an institutional position of doing for residents to a person-centred position of doing with residents. IMPLICATIONS FOR PRACTICE: Our findings highlight the importance of understanding the differences between personalised and person-centred care for policy and practice. Further considerations are required on how this might be applied through nurse and care home professionals' education and work practices.

Resilience in nursing medication administration practice: a systematic review with narrative synthesis.

Resilience in nursing medication administration practice: a systematic review with narrative synthesis. OBJECTIVE: Little is known about how nurses adapt medication administration practices to preserve safety. The capacity to adapt and respond before harm occurs has been labelled 'resilience'. Current evidence examining medication safety largely focuses on errors and what goes wrong. This review aimed to synthesise evidence for the application of resilience principles and practices in nursing medication administration. DESIGN: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guided the review, which was registered with PROSPERO. DATA SOURCES: MEDLINE, EMBASE, PsychINFO and CINAHL databases were searched from 14 August 2020 to 1 January 2021 for English-language studies. METHODS: A systematic review of empirical studies of any design relating to resilience and safety in nursing medication administration in the inpatient setting was conducted. Methodological quality was appraised using the Mixed Methods Appraisal Tool. Data were synthesised thematically. RESULTS: Thirty-two studies with a range of methodologies of mostly good quality met the inclusion criteria. Eleven interventional studies included two that evaluated the effectiveness of education interventions and nine exploratory studies with outcomes showing the impact of an intervention designed or examined to build resilience. Twenty-one non-interventional studies showed how resilience principles are put into practice. Only three studies explicitly named the concept of resilience. Resilient medication administration strategies result from five triggers. CONCLUSIONS: Nurses' resilience practices were found to be responses to identified trigers that threaten safety and productivity. These were often short term, real-time proactive adaptations to preserve safety, compensating for and responding to complexities in the modern healthcare setting. PROSPERO REGISTRATION NUMBER: CRD42018087928.

Young people describe their prediagnosis cancer experience.

OBJECTIVE: Young people often report a protracted journey to diagnosis and frequently report perceived delays. This study was undertaken to increase understanding of the self-reported prediagnosis experiences in young people with a non-haematological cancer, as close as possible to the time of diagnosis. METHODS: Narrative interviews were conducted with 24 young people aged 16-24, 2-4 months from the diagnosis of a solid tumour. Data were analysed to identify whether prediagnosis narratives could be classified according to shared characteristics (typologies) to identify broader contextual issues concerning cancer, and cancer risk perceptions, in this age group. Case notes were also accessed to contextualize and confirm accounts. RESULTS: The main themes, which included a group narrative concerning perspectives of delay, included the impact on an individual's everyday life by symptoms; the role that significant others in young peoples' lives played in the interpretation of symptom significance; the negotiation of entry into, and experiences of, generalist health care; entry into specialist care; and the threshold points that exemplified when events shifted and a diagnosis was eventually obtained. CONCLUSIONS: The narratives reveal complex, and multidimensional explanations for delay with individual and contextual factors contributing. Insights were gained into preventable diagnostic delay; including investigations having been instigated, but not followed up. Each narrative also offered significant insights into how cancer symptoms should be considered within the context of young peoples' lives. This would help prevent signs and symptoms in this age group failing to trigger suspicion and not being treated seriously.

Perceptions of healthcare professionals' psychological wellbeing at work and the link to patients' experiences of care: A scoping review.

Background: Healthcare professionals' psychological wellbeing at work affects patients' experiences of care. However, the literature tends to focus on negative aspects of psychological wellbeing, such as stress and burnout, and interventions to support healthcare professionals' wellbeing have limited effectiveness. The growing global concern over the psychological wellbeing of healthcare professionals has escalated following the COVID-19 pandemic. There is an urgent need to review the recent literature on healthcare professionals' psychological wellbeing to identify gaps in our knowledge. This scoping review will help focus the future research to improve the psychological wellbeing of healthcare staff and thereby patients' care experiences. Aim: This scoping review aims to answer two research questions: 1) What do we know about healthcare professionals' and patients' perceptions of healthcare professionals' psychological wellbeing at work? 2) How does the psychological wellbeing of healthcare professionals at work affect patients' experiences of care? Method: We conducted a scoping review using frameworks developed by Arksey and O'Malley (2005) and Levac, Colquhoun and O'Brien (2010). Our comprehensive literature search covered publications dated 2011-2021 in PubMed, CINAHL, Scopus and PsychInfo, NIHR Journals, EThOS, Open Grey, Google Scholar, and the Department for Health and Social Care and Kings Fund websites. We also hand-searched the reference lists of included studies. Two independent reviewers assessed the eligibility of studies. Results: We included 56 articles from 16 countries, most using qualitative methods. We identified five themes: 1) The definition of healthcare professional psychological wellbeing; 2) The relationship between healthcare professionals' psychological wellbeing and nature of healthcare work; 3) The role of organisational culture in healthcare professionals' psychological wellbeing and the importance of organisational culture; 4) The impact the COVID-19 pandemic on of healthcare professionals' psychological wellbeing; and 5) The link between healthcare professionals' psychological wellbeing and patients' experiences of care. We found a complex relationship between organisational culture, healthcare professionals' perceptions of psychological wellbeing, and patients' experiences of care. Conclusion: While there is currently no consensus on the definition of psychological wellbeing in healthcare professionals, our review highlights its relation to organizational culture and its impact on patients' experiences of care. Future research should include patients' perspectives and develop meaningful ways to support, develop, and retain healthcare professionals. Tweetable abstract: Scoping review: wellbeing of healthcare professionals is poorly understood. Basic needs must be met first to support staff to care @KathrynBamforth.

Engaging with communities in rural, coastal and low-income areas to understand barriers to palliative care and bereavement support: reflections on a community engagement programme in South-west England.

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need.

Outcomes sensitive to critical care nurse staffing levels: A systematic review.

OBJECTIVE: To determine associations between variations in registered nurse staffing levels in adult critical care units and outcomes such as patient, nurse, organisational and family outcomes. METHODS: We published and adhered to a protocol, stored in an open access repository and searched for quantitative studies written in the English language and held in CINAHL Plus, MEDLINE, PsycINFO, SCOPUS and NDLTD databases up to July 2020. Three authors independently extracted data and critically appraised papers meeting the inclusion criteria. Results are summarised in tables and discussed in terms of strength of internal validity. A detailed review of the two most commonly measured outcomes, patient mortality and nosocomial infection, is also presented. RESULTS: Our search returned 7960 titles after duplicates were removed; 55 studies met the inclusion criteria. Studies with strong internal validity report significant associations between lower levels of critical care nurse staffing and increased odds of both patient mortality (1.24-3.50 times greater) and nosocomial infection (3.28-3.60 times greater), increased hospital costs, lower nurse-perceived quality of care and lower family satisfaction. Meta-analysis was not feasible because of the wide variation in how both staffing and outcomes were measured. CONCLUSIONS: A large number of studies including several with high internal validity provide evidence that higher levels of critical care nurse staffing are beneficial to patients, staff and health services. However, inconsistent approaches to measurement and aggregation of staffing levels reported makes it hard to translate findings into recommendation for safe staffing in critical care.

The 'Reality of Revalidation in Practice' (RRiP) project - Experiences of registrants and preparation of students in nursing and midwifery in the United Kingdom: A descriptive exploratory survey.

BACKGROUND: Renewal of healthcare registration or license to practise is becomingly increasingly common, worldwide. Evidence regarding the experience of nursing and midwifery revalidation in the United Kingdom is limited. Preparation of students for the process has not yet been considered in the literature. OBJECTIVES: To explore registrants' experiences of undertaking or supporting colleagues through revalidation. To consider preparation of pre-registration students for this future professional requirement. DESIGN: A descriptive exploratory study comprising an on-line survey. SETTING: A university in the southwest of England and associated clinical placements. PARTICIPANTS: Nursing and Midwifery Council registrants, comprising 40 university staff and 40 clinicians; 36 pre-registration nursing and midwifery students. METHODS: Participation in an anonymous on-line survey was invited via university databases. Descriptive statistical analysis of quantitative data used a combination of software and manual methods. Qualitative data were manually coded and categorised into themes through inductive reasoning. FINDINGS: Most experiences of revalidation were positive. Reflective discussions resulted in mutual learning, particularly if partners were chosen by the registrant. External scrutiny was welcomed. Some registrants questioned involvement of line managers and alignment with performance review, seeking to avoid a 'tick-box exercise' and conflicts of interest. University staff felt better prepared and more positive than clinicians. Pre-registration curriculum activities preparing students included writing reflections, maintaining portfolios, practice assessment and discussions about the revalidation process. Midwifery students seemed better prepared than nursing peers. Key themes of 'Professional values', 'Preparation', 'Process' and 'Purpose' and a range of positive influences and potential hazards informed development of a conceptual model. CONCLUSIONS: The purpose and process of revalidation is enhanced if confirmation is undertaken by a registered nurse or midwife of the individual's choice. Preparation of students for future revalidation is facilitated by role-modelling of positive attitudes and explicitly linking relevant pre-registration curriculum activities to this process and purpose.

Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals.

OBJECTIVES: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care. DESIGN: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care. SETTING: Three cancer centres and associated palliative care services across England. PARTICIPANTS: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of <12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops. RESULTS: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns. CONCLUSIONS: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis.

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.

Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?

BACKGROUND: Specialized cancer services for adolescents and young adults (AYAs) are being developed in a number of countries to address the particular needs of this population. However, the evidence base to inform service design and associated care delivery is inadequate. OBJECTIVE: The aim of this study was to undertake a mapping study to identify the main components of AYA cancer care to be studied further to reflect the range of approaches to service delivery currently provided in England. METHODS: Semistructured interviews were conducted with young people, their family members, and staff in 11 AYA principal treatment centers. Using different levels of extraction, these data were drawn together to illuminate the main components of AYA cancer care and the range of approaches to service delivery. RESULTS: Young people, family members, and staff consistently identified and valued similar areas of AYA cancer care: caring and supportive staff, activities designed for AYAs, and an environment that feels like home. CONCLUSION: The mapping exercise successfully informed the selection of 4 sites for an in-depth case study. The main components of specialized AYA care have been described. IMPLICATIONS FOR PRACTICE: This description can assist clinical teams interested in developing or refining their approach to AYA cancer care. It could also offer a way to agree priorities, based on the key components young people consider as being essential for their care, and facilitate services to benchmark against these key components, and it could also go some way to address international AYA goals to support global change to reduce the current disparities in care.

Adolescent cancer--the need to evaluate current service provision in the UK.

This article suggests that service provision for adolescents with cancer requires further attention by health service researchers. Evidence of the care needs of this patient group remains scarce, particularly in terms of evaluations of the available care settings in the UK. The authors discuss the challenges facing the adolescent cancer patient population, and discuss the findings from a recent ethnographic evaluation of one of the first specialist UK units dedicated to the care of adolescents with cancer. The implications for further evaluative research, education and staff-related concerns are explored in the light of the findings.

'Being in the same boat': ethnographic insights into an adolescent cancer unit.

Cancer may be considered a particularly challenging diagnosis for adolescents. Treatment for adolescents in the United Kingdom may be provided in paediatric or adult settings or, more rarely, in specialist adolescent cancer units. An ethnographic approach was adopted to gather 'insiders' views of one such unit using in-depth interviews with patients, parents and professionals, as well as non-participant observation of key events. Two data themes 'cancer and the cancer unit' and 'changes over time' are discussed in this paper. Benefits of the unit included shared understandings and the manner in which the privations of adolescent cancer were contained and managed by those involved.

Achieving change in the NHS: a study to explore the feasibility of a home-based cancer chemotherapy service.

A major focus of current health policy in the United Kingdom is the development of services that meet the public's expectations. To achieve this there is a need to evaluate current provision to ensure that the best use is made of finite resources. The study reported here adopted an interview approach to examine an existing outpatient chemotherapy service, and to consider the feasibility of introducing a home based model. Following a review of literature on this topic data were obtained from in-depth interviews with patients and professionals regarding the present service. These were then combined with an analysis of service contracts and financial estimates. The poor quality of much of the cost-related information limited the conclusions which could be drawn, and emphasised the need for access to more accessible and robust financial information upon which to base change. The study also illustrated the benefits of feasibility studies; especially when cost-effectiveness and patient satisfaction are the driving forces behind proposed changes to clinical services.

Developing a conceptual model of teenage and young adult experiences of cancer through meta-synthesis.

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 meta-synthesis 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.

The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults.

BACKGROUND: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people. OBJECTIVE: We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people. METHODS: Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews. RESULTS: Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer. CONCLUSIONS: The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care. IMPLICATIONS FOR PRACTICE: Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.

"Your Place or Mine?" Priorities for a Specialist Teenage and Young Adult (TYA) Cancer Unit: Disparity Between TYA and Professional Perceptions.

PURPOSE: To identify key components of a specialist teenager and young adult (TYA) cancer unit from the perspective of young people and health professionals. PATIENTS AND METHODS: A facilitated workshop was held in England at which participants prioritized 15 core features of a specialist cancer unit identified in a literature review. Themes were transferred onto cards and organized using a pyramid. Notes were made of the discussion and how decisions were reached. The exercise was repeated in a survey at a patient conference. Data were analyzed by weighting the ranked position and by content analysis. RESULTS: Eleven young people and 22 health professionals attended the workshops, and 64 young people completed the survey. Young people's top three priorities were a dedicated unit, contact with peers, and provision for partners/parents to live in the unit with them. Health professionals prioritized best chance of survival and best quality of life, access to expertise, access to computers/Internet, and age-appropriate equipment. CONCLUSIONS: Priorities varied across and within healthcare professionals and young people, and were dependent on viewpoint and personal experience. This is an essential first step toward a fuller description of the benefit of specialist TYA cancer services and highlights the importance of consulting users in service development.