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Objective This study aimed to qualitatively explore how partner support for health behaviours is perceived, received, and utilised in people living with and beyond cancer (LWBC). Methods Semi-structured audio interviews were conducted with 24 participants, 15 men and nine women, living with and beyond breast, prostate, and colorectal cancer. Inductive and deductive Thematic Analysis was used to analyse the data. Results Three key themes with six subthemes were identified relating to partner support for health behaviours: (1) Interdependence (Reciprocity, Overt Control, Influence & Motivation) (2) Concordance (Shared Attitudes & Health Beliefs, Shared Health Behaviour) and (3) Communal Coping (Communal Orientation towards Health and Decision Making, Co-operative Action in Health Behaviour). Conclusions Partner support plays a unique and significant role in the health behaviours of people LWBC. Partners play a collaborative role in managing health and facilitating health behaviours, while the high level of concordance in couples may represent a potential barrier to change via the reinforcement of maladaptive health beliefs and behaviours. Implications for Cancer Survivors Overall, findings demonstrate that partners should be considered and included where possible when designing future behaviour change interventions for people LWBC.

Purpose: Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe. Patient and methods: Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory, and the process for seeking and accessing palliative care. Results: Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants’ experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps a result of happenstance or informal encounters. Conclusion: Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.

Background Pharmacists are important members of multidisciplinary teams but, despite surveys of provision, the role of the hospice pharmacist is not well described. Objective To explore the role of the hospice pharmacist and identify barriers and facilitators to the role. Setting Hospices offering in-patient services caring for adults towards the end of life in one geographical area of northern England. Method Pharmacists providing services to hospices were invited to take part in qualitative semi-structured interviews asking about experience, patient contact, team working and barriers and facilitators to the role. These were recorded verbatim and data were analysed thematically using framework analysis. Main outcome measure The hospice pharmacist’s perceptions of their role and barriers and facilitators to it. Results Fifteen pharmacists took part. Two themes and ten subthemes were identified focused on tasks and communication. Practise was varied and time limited the quantity and depth of services carried out but was often spent navigating complex drug supply routes. Participants found methods of communication suited to the hours they spent in the hospice although communication of data was a barrier to effective clinical service provision. Participants identified the need for appropriate training and standards of practice for hospice pharmacists would enable better use of their skills. Conclusion Barriers to the role of hospice pharmacist include time, access to role specific training, access to clinical information and complex medicines supply chains. The role would benefit from definition to ensure that hospices are able to use hospice pharmacists to their greatest potential.

PurposeSocial support facilitated healthy behaviours in people living with and beyond cancer (LWBC) before the COVID-19 pandemic. Little is known about how social support impacted their health behaviours during the pandemic when social restrictions were imposed. The aim of this study was to qualitatively explore how social support impacted the health behaviours of people LWBC during the COVID-19 pandemic.MethodsSemi-structured interviews were conducted via telephone with 24 adults living with and beyond breast, prostate and colorectal cancer. Inductive and deductive framework analysis was used to analyse the data. ResultsSix themes developed. These were 1) Companionship and accountability as motivators for physical activity, 2) Familial social influence increasing alcohol consumption, 3) Importance of friends, communities and government in maintenance of food security, 4) Partner support in food practices, 5) Informational support as important for behaviour change, and 6) Validation of health behaviours from immediate social networks. ConclusionThis study found that companionship, social influence, instrumental support, informational support and validation impacted the health behaviours of people LWBC during the COVID-19 pandemic. Interventions for people LWBC could recommend co-participation in exercise with friends and family; promote the formation of collaborative implementation intentions with family to reduce alcohol consumption; and encourage supportive communication between partners about health behaviours. These interventions would be useful during pandemics and at other times. Government policies to help support clinically extremely vulnerable groups of people LWBC during pandemics should focus on providing access to healthier foods.

Purpose Social support facilitated healthy behaviours in people living with and beyond cancer (LWBC) before the COVID-19 pandemic. Little is known about how social support impacted their health behaviours during the pandemic when social restrictions were imposed. The aim of this study was to qualitatively explore how social support was perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. Methods Semi-structured interviews were conducted via telephone with 24 adults living with and beyond breast, prostate and colorectal cancer. Inductive and deductive framework analysis was used to analyse the data. Results Five themes developed. These were (1) Companionship and accountability as motivators for physical activity, (2) Social influences on alcohol consumption, (3) Instrumental support in food practices, (4) Informational support as important for behaviour change and (5) Validation of health behaviours from immediate social networks. Conclusion This study described how companionship, social influence, instrumental support, informational support and validation were perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. Interventions for people LWBC could recommend co-participation in exercise with friends and family; promote the formation of collaborative implementation intentions with family to reduce alcohol consumption; and encourage supportive communication between partners about health behaviours. These interventions would be useful during pandemics and at other times. Government policies to help support clinically extremely vulnerable groups of people LWBC during pandemics should focus on providing access to healthier foods.

Radiation therapy (RT) and chemoRT for pelvic cancers increase survival but are associated with serious treatment-related symptoms. Electronic-patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is a secure online system for patients to self-report symptoms, generating immediate advice for hospital contact or self-management. This pilot study aimed to establish feasibility and acceptability of the system.In a prospective 2-center randomized parallel-group pilot study, patients undergoing radical pelvic RT for prostate cancer (prostateRT) or chemoRT for lower gastrointestinal and gynecological cancers were randomized to usual care (UC) or eRAPID (weekly online symptom reporting for 12, 18, and 24 weeks). Primary outcomes were recruitment/attrition, study completion, and patient adherence. Secondary outcomes were effect on hospital services and performance of patient outcome measures. Missing data, floor/ceiling effects, and mean change scores were examined for Functional Assessment of Cancer Therapy (FACT-G), European Organisation for Research and Treatment of Cancer, Quality of Life (EORTC QLQ C-30), self-efficacy, and EuroQol (EQ5D).From 228 patients approached, 167 (73.2%) were consented and randomized (83, eRAPID; 84, UC; 87, prostateRT; 80, chemoRT); 150 of 167 completed 24 study weeks. Only 16 patients (9.6%) withdrew (10, eRAPID; 6, UC). In the eRAPID arm, completion rates were higher in patients treated with prostateRT compared with chemoRT (week 1, 93% vs 69%; week 2, 93% vs 68%; week 12, 69% vs 55%). Overall, over 50% of online reports triggered self-management advice for milder adverse events. Unscheduled hospital contact was low, with no difference between eRAPID and UC. Return rates for outcome measures were excellent in prostateRT (97%-91%; 6-24 weeks) but lower in chemoRT (95%-55%; 6-24 weeks). Missing data were low (1%-4.1%), ceiling effects were evident in EQ5D-5L, self-efficacy-scale, and FACT-Physical Wellbeing. At 6 weeks, the chemoRT-eRAPID group showed less deterioration in FACT-G, EORTC QLQ-C30, and EQ5D-Visual Analogue Scale than UC, after baseline adjustment.eRAPID was successfully added to UC at 2 cancer centers in different patient populations. Acceptability and feasibility were confirmed with excellent adherence by prostate patients, but lower by those undergoing chemoRT for gynecological cancers.

Positive health behaviours (sufficient exercise, healthy diet, limiting alcohol, and not smoking) can improve multiple outcomes after a cancer diagnosis. Observational studies suggest that health behaviours were negatively impacted for some but not all individuals living with and beyond cancer. The aim of this study was to qualitatively explore the impact of the pandemic on health behaviours of people in this population.Thirty participants were purposively sampled for characteristics including diagnostic group (breast, prostate, and colorectal cancers), gender, time since diagnosis, and age. Semi-structured interviews were conducted to discuss the impact of the pandemic on health behaviours. Thematic analysis and a secondary Ideal Types analysis were conducted.Five themes covered changes in food, weight management, relationship to alcohol, and exercise. Five "types" were identified, representing orientations to health behaviours. The "gift of time" provided by the pandemic had an impact on health behaviours, with trends towards increases in drinking, eating unhealthy food, and exercising less.The COVID-19 pandemic impacted engagement in positive health behaviours among participants in this study. Strict restrictions and changes in routines resulted in individuals adjusting how they managed their diet, alcohol intake, and exercise behaviours. The typology identified within this study helps to define how different orientation to health behaviours could underpin the responses of individual people LWBC.Alongside providing an understanding of the experiences of people LWBC during the COVID-19 pandemic, the proposed typology suggests how, with further development, future health behaviour interventions in this group could be targeted based on individual orientations to health, rather than demographic or clinical variables.

Cancer pain is a common symptom experienced by patients, caused either by the disease or its treatment. Morphine remains the most effective and recommended treatment for cancer pain. However, cancer patients still do not receive appropriate management for their pain, and under-treatment is common. Lack of knowledge and negative attitudes towards cancer pain and analgesia among professionals, patients and family caregivers are reported as one of the most common barriers to effective cancer pain management (CPM). To systematically review research on the nature and impact of attitudes and knowledge towards CPM, a systematic literature search of 6 databases (the Cochrane library, MEDLINE, PsycINFO, CINAHL, Web of Science and EMBASE) was undertaken in July 2018. Additionally, hand-searching of Google, Google Scholar and reference lists was conducted. The inclusion criteria were adult (18–65 years of age), studies which included attitudes and knowledge towards CPM, studies written in English, published literature only and cross-sectional design. Included studies were critically appraised by two researchers independently using the Joanna Briggs Institute Analytical Cross Sectional Studies Assessment (JBI-ACSSA). A total of 36 studies met the inclusion criteria. The main finding was that among professionals, patients, caregivers and the public there were similar attitudinal barriers to effective CPM. The most commonly cited barriers were fear of drug addiction, tolerance of medication and side effects of opioids. We also found differences between professional groups (physicians versus nurses) and between different countries based on their potential exposure to palliative care training and services. There are still barriers to effective CPM, which might result in unrelieved cancer pain. Therefore, more educational programmes and training for professionals on CPM are needed. Furthermore, patients, caregivers, and the public need more general awareness and adequate level of knowledge about CPM. Electronic supplementary material The online version of this article (10.1007/s13187-019-01548-9) contains supplementary material, which is available to authorized users.

Purpose Young people (YP) returning to school after a cancer diagnosis and treatment have to decide who has the right to know about their cancer experiences and how to distribute this information to peers. Young people face unique challenges in this area because of their life stage, their need to reintegrate with peers, and their own approach to their disease and treatment. This paper explores the perspectives of young people as they return to school during and after curative cancer treatment. Method 12 young people (6 females, 6 males) from the north of England (aged 13–16 years at time of recruitment) took part in photo elicitation interviews conducted at three time points during the year following a diagnosis of lymphoma, Hodgkin's lymphoma, osteosarcoma, A-plastic anaemia or acute lymphoblastic leukaemia. Interviews were transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Results Three main themes emerged: ‘approaches to telling’, ‘lives becoming public property’; and ‘owning the story’. Within these themes participants experienced stressors related to altered peer group dynamics, being propelled into the foreground of the school environment, being responsible for the feelings and needs of others, and conflicts between their perception of coping and the reactions of others. Conclusions Re-entering school following a diagnosis of cancer can result in challenging dynamics for a young person, which they are not always equipped to manage. Participants displayed individual differences in their approaches and preferences, but inevitably all had to cope with their lives becoming public property and managing the narrative of their cancer experience.

BACKGROUND:Being diagnosed with cancer during the teenage years can be significant given that young people are at a key developmental, educational, and future-planning stage. Little is known about young people's attitude toward and engagement with school postdiagnosis, nor how this changes over time. We adopted a novel qualitative approach to examine accounts over time of young people recently diagnosed with cancer. METHODS:Twelve teenagers (13-16 years), recently diagnosed with cancer, participated in photo-elicitation interviews at three time points (∼2, 6, and 9 months postdiagnosis), generating 30 interviews in total. Photo-elicitation interviews center around images that participants bring to represent key experiences and issues that matter to them. Transcripts were analyzed using interpretative phenomenological analysis. RESULTS:Seven themes were generated, representing experiences over time. Themes convey how significant school was to the young people postdiagnosis, principally because it mattered to them to maintain a normative educational pathway. Young people felt tension between wanting to be the same as their peers but feeling distinctly changed. Keeping ownership and control of their cancer story within school was challenging. Survivorship brought, for some, a legacy of missed schooling. CONCLUSION:Support for young people and reintegration plans for school need to be tailored to the young person's emerging way of understanding their cancer and recovery, and their orientation to coping. Young people need help to understand that schoolwork exemptions/extensions do not implicate academic deficiency, and how they could accept a "same but different" position as they continue to develop personally and educationally with their peers.

Objectives The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods Semi-structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results Twenty-four patients and eight HCPs participated. Two overarching themes and five sub-themes emerged: Theme one-referral process: timing and triggers, responsibility. Theme two-engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.

Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.

Background: Traditional approaches to research can sometimes face difficulties in engaging participants, allowing flexibility and ultimately eliciting data about people’s experiences. When this occurs researchers should be more innovative with research design. Visual methods are an alternative approach to interview based qualitative research, where images (often photographs) are used as stimuli and/or structure within the interview. However, little has been published in the nursing literature to guide nurse researchers in applying and evaluating this method. Aim: To increase nurse researchers’ awareness of visual methods and their potential, to enable them to make informed choices about methods in health research. Discussion: Visual methods with a particular focus on methods which use photographs within health research are introduced. The benefits of using photographs in health research, such as reducing the gap between researcher and participant; and facilitating expression of meaningful data, are discussed along with ethical, analytical and practical difficulties. Discussion points are illustrated with reflections from health research, and a comparison of interviews with and without the use of photographs is also presented. Conclusion: Using photographs offers a good alternative to more traditional approaches but the exact benefits are difficult to evidence because of the complexities of the research interaction. Implications for practice: this detailed discussion of visual methods and the associated methodological issues should increase nurse researchers’ awareness of the method, assist them in making informed choices about research methods, and encourage their use in health research.

BACKGROUND AND OBJECTIVES: This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool. METHODS: Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review. RESULTS: An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents. CONCLUSIONS: The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.

PURPOSE: The diagnosis of cancer is often prolonged in teenagers and young adults (TYA). There may be lessons in improving this from international comparisons. However, international studies are complex and so we conducted a pilot study to examine the key barriers to large-scale research in this field.METHODS: We provided translated questionnaires covering key aspects of presentation and clinical management within 60 days of a confirmed cancer diagnosis, to patients 13-29 years of age inclusive, to their primary care physicians and to the cancer specialists managing their cancer. We conducted descriptive analyses of the data and also the process of study implementation.RESULTS: For our pilot, collecting triangulated data was feasible, but varying regulatory requirements and professional willingness to contribute data were key barriers. The time of data collection and the method for collecting symptom reports were important for timely and accurate data synthesis. Patients reported more symptoms than professionals recorded. We observed substantial variation in pathways to cancer diagnosis to explore definitively in future studies.CONCLUSION: Focused research upon the mechanisms underpinning complex cancer pathways, and focusing that research upon specific cancer types within TYA may be the next key areas of study.

Background An estimated 17,000 patients are treated annually in the UK with radical radiotherapy (RT) for pelvic cancer. New treatment approaches in RT have increased survivorship and changed the subjective toxicity profile for patients who experience acute and long-term pelvic-related adverse events (AE). Multi-disciplinary follow-up creates difficulty for monitoring and responding to these events during treatment and beyond. Originally developed for use in systemic oncology therapy eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is an online system for patients to report AEs from home. eRAPID enables patient data to be integrated into the electronic patient records for use in clinical practice, provides patient management advice for mild and moderate AE and advice to contact the hospital for severe AE. The system has now been developed for pelvic RT patients, and we aim to test the intervention in a pilot study with staff and patients to inform a future randomised controlled trial (RCT). Methods Eligible patients are those attending St James’s University hospital cancer centre and The Christie Hospital Manchester undergoing pelvic radiotherapy+/−chemotherapy/hormonotherapy for prostate, lower gastrointestinal and gynaecological cancers. A prospective 1:1 randomised (intervention or usual care) parallel group design with repeated measures and mixed methods will be employed. We aim to recruit 168 patients following recommendations for sample size estimates for pilot studies. Participants using eRAPID will report AE (at least weekly) from home weekly for 6 weeks and 6 weeks post-treatment (12-week total) then at 18 and 24 weeks. Hospital staff will review eRAPID reports and use information during consultations. Notifications will be sent to the relevant clinical team when severe symptoms are reported. We will measure patient-reported outcomes using validated questionnaires (Functional Assessment in Cancer Therapy Scale-General (FACT-G), European Organisation for Research and Treatment of Cancer Core Quality of Life questionnaire (EORTC-QLQ-C30), process of care impact (hospital records of patient contacts and admissions) and economic variables (EQ5D-5L, patient use of resources)). Staff and patient experiences will be explored via semi-structured interviews. Discussion The objectives are to establish feasibility, recruitment, integrity of the system and attrition rates, determine effect sizes and aid selection of the primary outcome measure for a future RCT. We will also refine the intervention by exploring staff and patient views. The overall goal of this complex intervention is to improve the safe delivery of cancer treatments, enhance patient care and standardise documentation of AE within the clinical datasets. Trial registration ClinicalTrials.gov NCT02747264. Electronic supplementary material The online version of this article (10.1186/s40814-018-0304-6) contains supplementary material, which is available to authorized users.

ObjectivesPatients are living longer with active, advanced or metastatic disease that cannot be cured, but may be managed (ie, ‘chronic cancer’). The experiences and needs within this growing group are likely to be different from those shortly after diagnosis, on active curative treatment, or in the palliative or end-of-life phase, yet are poorly defined. We described chronic cancer patient experiences and support needs in a quantitative, multicentre cross-sectional study.MethodsPatients from five district general hospitals in England completed the 75-item Chronic Cancer Experiences Questionnaire (CCEQ). Responses were described and linear regression analysis was performed to explore the associations between poorer patient experiences and clinical/sociodemographic variables.ResultsIn total, 416 patients with prostate cancer (28%), breast cancer (24%), gynaecological cancer (19%), colorectal/gastrointestinal cancer (17%) and renal cancer (12%) completed the CCEQ (response rate 90%). Younger patients, those who had a longer interval between primary and advanced diagnosis and those not in a relationship, had worse experiences (R2=0.098, pConclusionsPsychological burden remains high in the chronic phase of cancer, and patients experience ongoing difficulties in accessing support and services. Younger patients who have been ill for longer and those who have less social support may be particularly vulnerable, and future studies are needed to investigate the best way to meet the unique needs of this growing patient population.

The aims of this article are to describe the ongoing development of adolescent and young adult (AYA) cancer services within the European Union (EU), and to develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 to April 2015. Consensus was defined as >80% agreement ("agree" or "strongly agree"). Sixty professionals participated in round 1, 106 in round 2, and 61 in round 3. Twenty-six countries were represented across all rounds. Consensus was achieved for: the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People, and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within AYA cancer care. European professionals with expertise in AYA cancer care reached consensus on key elements of care for this group. The optimal AYA age range remained an elusive topic on which to agree. The broad engagement and interest in AYA cancer across the EU through the European Network for Cancer in Children and Adolescents (ENCCA) network was also demonstrated.

Objective Chronic cancer is poorly defined and strategies for supporting patients during this disease phase are lacking. This research defines chronic cancer, explores patient experiences and reviews patients' support needs against those described in the 2007 Department of Health Generic Choice Model for Long-term Conditions (DoH-GCM). Design Semistructured interviews were audio recorded, transcribed and data explored for emergent themes. The a priori themes from DoH-GCM were applied: clinical support; self-care and self-management; supporting independence; psychological support; and social and economic factors. Results 56 patients >12 months postdiagnosis of advanced cancer were recruited from five clinics at a Yorkshire cancer centre: breast (n=11); renal (n=11); colorectal/gastrointestinal (n=12); gynaecological (n=12); and prostate (n=10). Most patients aspired to living normal lives. Challenges included frequent and lengthy hospital appointments, long-term symptom control and uncertainty. Only renal and prostate patients reported routine access to specialist nursing. Uptake of support services was varied and there was generally poor understanding of support pathways for non-medical problems and issues occurring when patients were not receiving active treatment. There was variation in coping strategies and ability of patients to attain a positive outlook on life. Conclusions For patients to do well in this cancer phase requires good self-management of symptoms plus taking an active role in accessing appropriate services as needed. Care planning at the point of transition to the chronic phase of cancer should focus on evaluating patients' needs, clarifying support pathways, increasing the profile and involvement of community services and organisations, and supporting patients and families develop effective self-management skills.

Objectives: A diagnosis of cancer during the teenage years arrives at an important stage of development, where issues of normality, identity and independence are crucial. Education provides opportunity for peer contact, achievement and development for teenagers. This systematic review examined the impact of a diagnosis of cancer on the educational engagement and school life of teenagers. Method: Five electronic databases were searched, returning a total of 3209 articles. Inclusion criteria were broad to allow for the range of literature within this area. Following screening, 22 articles (inclusive of both quantitative and qualitative methodologies) were retained and subjected to independent review and quality assessment. Results: Key areas involved in the impact of a cancer diagnosis on teenagers’ educational engagement include school attendance, reintegration, peer relationships and long-term effects on education and employment. Conclusion: School absences are a concern for teenagers, but do not necessarily lead to a reduction in educational and vocational attainment. It is important to involve health care and education professionals, as well as parents and teenagers themselves, in school reintegration if it is to be successful. Peer groups and body image are two areas that could mediate education engagement for teenagers. Further research needs to be undertaken to determine the overall impact of successfully maintaining education engagement specifically for teenagers, the role that peer groups play in this process and how education engagement contributes to the overall coping and well-being of teenage cancer patients. Copyright © 2011 John Wiley & Sons, Ltd.

Objectives Emotional distress, including depression, is an important issue for cancer patients and their families. Guidelines recommend the use of antidepressant drugs (ADs) for the management of depression in cancer. This study explores the views of oncology professionals about the inclusion of ADs in treatment plans. Design Semi-structured interview study. Data were analysed using framework analysis. Setting A specialist cancer centre and six district general hospitals across the Yorkshire Cancer Network. Participants 18 randomly selected professionals from lung, breast, urology and colorectal cancer teams: oncologists (n=8), surgeons (n=3), clinical nurse specialists (n=2) and ward nurses (n=5). Results Three main themes emerged relating to professionals9 attitudes, knowledge and behaviour. Positive attitudes were primarily expressed by nurses. However, negative views were expressed about the potential for over-reliance on ADs, and their use constituting ‘giving in’. Doctors reported a lack of confidence in the use of and knowledge about ADs with an associated reluctance to prescribe. The general practitioner (GP) was regarded as the most appropriate professional to prescribe ADs. Conclusions Cancer professionals highlighted a need for training in the appropriate use of ADs. Further, this research suggests that negative attitudes towards antidepressants may be a factor in their exclusion from treatment plans. The GP is seen to have a key prescribing role for AD therapy; however, it is unclear whether the GPs is asked to do this. This research raises questions about the adequacy of ADs in cancer care and to what extent the GP is able to meet this need.

Objective: Emotional distress (ED) is an under-diagnosed problem in cancer patients and over the last decade a number of national guidelines have recommended an assessment and management model based on appropriate health professional response to a hierarchy of patient need. This study explores the views of cancer professionals regarding their current roles and responsibilities in the detection and management of ED, use of screening tools and access to expert psychological support. Methods: Interviews with 23 professionals were conducted [6 clinical nurse specialists (CNS), 8 oncologists, 4 surgeons and 5 ward sisters] from hospitals in Yorkshire, UK. Data were evaluated using framework analysis. Results: Detection of ED was seen to be the responsibility of the whole cancer team though nurses, particularly CNSs, are heavily depended upon to assess and manage distress. Experience of screening tools was limited and a number of reservations were expressed about routine implementation. A wide range of services are used to support distressed patients but a lack of referral guidance and access to specialist psychological care were reported to be a significant barrier to effective management. Conclusions: Cancer professionals describe working within the fundamental principles of the guidance frameworks; however, access to specialist support do not appear to meet recommendations, leaving the CNS with considerable responsibility for the detection and management of ED. Support for ED may be improved by the introduction of routine screening along with appropriate training and implementation of referral guidelines to assist professionals in accessing specialist psychology services. Copyright © 2011 John Wiley & Sons, Ltd.

BackgroundMany advanced cancers are managed as chronic diseases, yet there are currently no international guidelines for the support of patients living with chronic cancer. It is important to understand whether care and service arrangements meet the needs of this rapidly growing patient group. This study aimed to develop and validate a questionnaire to capture patients' experiences of living with chronic cancer and their views of clinical and support services.MethodsThe research was carried out between 1 July 2010 and 21 February 2013. A conceptual framework and initial item bank were derived from prior interviews with 56 patients with chronic cancer. Items were reviewed by 4 oncologists and 1 clinical nurse specialist and during 2 focus groups with 9 patients. Pilot questionnaires were completed by 416 patients across 5 cancer units. Item selection and scale reliability was explored using descriptive data, exploratory factor analysis, internal consistency analyses, multitrait scaling analyses and known-groups comparisons.ResultsThe final Chronic Cancer Experiences Questionnaire (CCEQ) includes 75 items. 62 items contribute to 14 subscales with internal consistency between α 0·68–0·88 and minimal scaling errors. Known-groups comparisons confirmed subscale utility in distinguishing between patient groups. Subscales were labelled: managing appointments, coordination of care, general practitioner involvement, clinical trials, information and questions, making treatment decisions, symptom non-reporting, key worker, limitations, sustaining normality, financial advice, worries and anxieties, sharing feelings with others, and accessing support. 13 items assessing symptom experiences were retained as single items.ConclusionsThe CCEQ has the potential to be used as a clinical instrument to assess patient experiences of chronic cancer or to screen for patient needs. It may also be used as an outcome measure for evaluating programmes and models of care and may identify areas for service development that could ultimately improve the care and support received by patients with chronic cancer.

Purpose Engagement with education during treatment is an important and complex issue for practitioners and an important psychosocial need of teenagers with cancer. There is limited research currently available specifically concerning the education of teenagers with cancer. This paper reports the outcomes from a patient and a practitioner questionnaire study which explore prominent issues and experiences in educational engagement for this population. Method Eighty-eight teenage cancer patients completed a questionnaire about their education experiences since diagnosis. Forty oncology practitioners completed an online questionnaire on experiences of education engagement of teenage patients. Questionnaires were developed from a systematic research review conducted by the authors and included; peer relationships, school attendance, reintegration and long term effects of cancer on attainment. Results Among teenagers there was a significant relationship between successful maintenance of peer groups, successful reintegration into school and positive ratings of the education support. Teenagers who reported school as their primary source of support had significantly more successfully maintained peer groups. Practitioners rated peer support as the most important factor in education satisfaction for patients and stressed the need for collaborative planning between hospital, school and home. Conclusions Collaborative education planning should be initiated on diagnosis and aim to include non-academic variables, such as peer groups, which can influence successful maintenance of education. Further research is needed to understand the relationship between education engagement and teenagers' cancer experiences as a whole, as well as gaining a more in depth understanding of how teenagers experience their education after a diagnosis of cancer.

Emotional distress (ED) is an under-diagnosed problem in cancer patients and over the last decade a number of national guidelines have recommended an assessment and management model based on appropriate health professional response to a hierarchy of patient need. This study explores the views of cancer professionals regarding their current roles and responsibilities in the detection and management of ED, use of screening tools and access to expert psychological support.Interviews with 23 professionals were conducted [6 clinical nurse specialists (CNS), 8 oncologists, 4 surgeons and 5 ward sisters] from hospitals in Yorkshire, UK. Data were evaluated using framework analysis.Detection of ED was seen to be the responsibility of the whole cancer team though nurses, particularly CNSs, are heavily depended upon to assess and manage distress. Experience of screening tools was limited and a number of reservations were expressed about routine implementation. A wide range of services are used to support distressed patients but a lack of referral guidance and access to specialist psychological care were reported to be a significant barrier to effective management.Cancer professionals describe working within the fundamental principles of the guidance frameworks; however, access to specialist support do not appear to meet recommendations, leaving the CNS with considerable responsibility for the detection and management of ED. Support for ED may be improved by the introduction of routine screening along with appropriate training and implementation of referral guidelines to assist professionals in accessing specialist psychology services.

This article provides a review of the unique learning mentor role developed in the Leeds Hospital Teaching Trust since 2004. The role provides educational support to teenage and young adult cancer patients aged 13–25 years. During the period September 2004– December 2008 the learning mentor worked with 234 teenage and young adult patients. A questionnaire was administered in the summer of 2008 to gather reflections of patients and professionals, to evaluate the impact of this post. The questionnaire findings support the success of the role and the positive impact it has had for patients and professionals. There is potential for the role to be extended to national teenage and young adult cancer services, and to wider clinical areas where young people are living with chronic illness.

Introduction Depression is common in cancer patients and often associated with increased morbidity, hospitalisation and reduced quality of life. Current opinion supports the use of antidepressants (AD) for moderate and severe depression in physical illness. However, AD may be inadequately prescribed to oncology patients and factors other than need may influence prescribing practice. Aims To explore oncology professionals views on the use of AD in the management of emotional distress in cancer patients. Methods 18 randomly selected professionals from the Yorkshire Cancer Network (oncologists, surgeons, clinical nurse specialists and ward nurses) participated in a qualitative interview study. To explore their views on AD use in oncology they were asked: What leads you to prescribe AD? or Do you have any views on the use of AD? key themes were extracted via framework analysis. Results Despite recognising the value of AD in cancer care, professionals were reluctant to prescribe AD stressing a lack of knowledge I would be very worried about my ability to do that and overwhelmingly saw the general practitioner (GP) as most appropriate for this role. Overreliance on AD was voiced as were views that taking AD was defeatist medicating them is a slippery slope. Conclusion These findings highlighted a need for training on the use of AD in cancer care and to counteract negative views contributing to exclusion from treatment plans. A key prescribing role for the GP is described however it is unclear whether referrals are made. Future work should determine the role of the GP and map prescribing patterns elsewhere.

Background Breast cancer and treatment can significantly affect bodily appearance. Older women are as likely as younger women to experience body dissatisfaction that is significantly related to poorer mental health. Despite this, the needs of older women for psychological support during cancer treatment remain under-studied. Aim This feasibility study investigated the efficacy and limitations of expressive writing as an intervention for body dissatisfaction following mastectomy for breast cancer. Methods 32 women who had mastectomy for breast cancer in the last 5 years were randomised to intervention (expressive writing) or control (factual writing) arms. Both arms completed 3×20-min writing sessions. The intervention arm wrote about their deepest feelings regarding surgery and the impact this had on how they feel about their body. The control arm wrote about their daily activities. Patients completed quality of life assessments 2 weeks and 3 months post intervention and attended an exit interview at 3 months. Results Analysis of the exit interviews showed that patients in the expressive writing group experienced a variety of benefits including; catharsis, reflection, expressing themselves anonymously and the facilitation of future discussions with friends, family and professionals. Negative experiences of the writing included; difficulties expressing emotions, ‘dredging up’ negative experiences and resistance to reflection. Conclusions Expressive writing is low-cost intervention that may benefit patients experiencing body dissatisfaction following mastectomy. Patients felt the intervention would be well received at the end of treatment and would be suitable to a broad range of patients who may not typically use support or therapeutic services.