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Purpose Personalised information and support can be provided to cancer survivors using a structured approach. Needs assessment tools such as the Holistic Needs Assessment (HNA) in the UK and the Comprehensive Problem and Symptom Screening (COMPASS) questionnaire in Canada are recommended for use in practice; however, they are not widely embedded into practice. The study aimed to determine the extent to which nurses working in cancer care in the UK and Manitoba value NA and identify any barriers and facilitators they experience. Method Oncology nurses involved in the care of cancer patients in the UK (n = 110) and Manitoba (n = 221) were emailed a link to an online survey by lead cancer nurses in the participating institutions. A snowball technique was used to increase participation across the UK resulting in 306 oncology nurses completing the survey in the UK and 116 in Canada. Results Participants expressed concerns that these assessments were becoming bureaucratic “tick-box exercises” which did not meet patients’ needs. Barriers to completion were time, staff shortages, lack of confidence, privacy, and resources. Facilitators were privacy for confidential discussions, training, confidence in knowledge and skills, and referral to resources. Conclusion Many busy oncology nurses completed this survey demonstrating the importance they attach to HNAs and COMPASS. The challenges faced with implementing these assessments into everyday practice require training, time, support services, and an appropriate environment. It is vital that the HNA and COMPASS are conducted at optimum times for patients to fully utilise time and resources.

Objective: A quarter of people diagnosed with cancer lack social support. Online cancer communities could allow people to connect and support one another. However, the current proliferation of online support communities constitutes a range of online environments with differing communication capacities and limitations. It is unclear what is perceived as online cancer community support and how different features can help or hinder supportive group processes. This study aimed to explore how perceived support is influenced by the different features and formats of online support environments. \ud \ud Methods: In-depth qualitative interviews were conducted with 23 individuals affected by a range of cancer diagnoses, including both cancer survivors and family members. Data were analysed using deductive thematic analysis guided by a constructivist epistemological perspective.\ud \ud Findings: Online supportive communities were defined and differentiated by two themes. Firstly, 'Open forums' were identified with thematic properties which facilitated a uniquely informative environment including 'Safety in anonymity', 'Perceived reliability' and 'Exposure and detachment'. Secondly, 'Secret groups' were identified with thematic properties which enhanced an emotionally supportive environment including ‘Personalised interactions’, an overt 'Peer hierarchy', and 'Crossing the virtual divide'.\ud \ud Conclusions: Properties of groups can engender different degrees of interpersonal relations and different supportive interactions. In particular, support community designers may want to adapt key features such as anonymity, trustworthiness of websites, and the personalised nature of conversations to influence the development of supportive environments. In personalised peer-led groups, it may be prudent to provide guidance on how to reassert a positive environment if arguments break out online.

Objective: To conduct a systematic review of the effectiveness of consultation recordings, and identify factors contributing to their successful implementation in healthcare settings.\ud Methods: A systematic review was conducted for quantitative studies examining the effectiveness of consultation recordings in healthcare. Two independent reviewers assessed the relevance and quality of retrieved quantitative studies using standardized criteria. Study findings were examined to determine consultation recording effectiveness and to identify barriers and facilitators to implementation. A supplementary review of qualitative evidence was performed to further explicate\ud implementation factors.\ud Results: Of the 3,373 articles retrieved in the quantitative search, 26 satisfied the standardized inclusion criteria (12 randomized controlled trials, 1 quasi-experiment, and 13 cross-sectional studies). The majority of patients found consultation recordings beneficial. Statistically significant evidentiary support was found for the beneficial impact of consultation recordings on the following patient reported outcomes: knowledge, perception of being informed, information recall, decisionmaking\ud factors, anxiety, and depression. Implementation barriers included strength of evidence concerns, patient distress, impact of the recording on consultation quality, clinic procedures, medico-legal issues, and resource costs. Facilitators included comfort with being recorded, clinical champions, legal strategies, efficient recording procedures, and a positive consultation recording\ud experience.\ud Conclusions: Consultation recordings are valuable to patients and positively associated with patient reported outcomes. Successful integration of consultation recording use into clinical practice requires an administratively supported, systematic approach to addressing implementation factors.

After completing treatment, most patients follow a pre-determined schedule of regular hospital outpatient appointments, which includes clinical examinations, consultations and routine tests. After several years of surveillance, patients are transferred back to primary care. However, there is limited evidence to support the effectiveness and efficiency of this approach.\ud \ud This paper examines the current rationale and evidence base for hospital-based follow-up after treatment for gynaecological cancer. We investigate what alternative models of care have been formally evaluated and what research is currently in progress in Europe, in order to make tentative recommendations for a model of follow-up.\ud \ud The evidence base for traditional hospital based follow-up is limited. Alternative models have been reported for other cancer types but there are few evaluations of alternative approaches for gynaecological cancers. We identified five ongoing European studies; four were focused on endometrial cancer patients and one feasibility study included all gynaecological cancers. Only one study had reached the reporting stage. Alternative models included nurse-led telephone follow-up and comparisons of more intensive versus less intensive regimes. Outcomes included survival, quality of life, psychological morbidity, patient satisfaction and cost effectiveness of service.\ud \ud More work is needed on alternative strategies for all gynaecological cancer types. New models will be likely to include risk stratification with early discharge from secondary care for early stage disease with fast track access to specialist services for suspected cancer recurrence or other problems.

The editors of this journal meet many researchers at conferences and workshops who have tried and failed to publish the results of their studies. Having experienced these ourselves as authors, we do understand the frustration that potential authors often express. For those new to the publishing world, the disappointment of rejection runs deep, and often, despite very helpful reviews, that paper might never be resurrected again. The reality is that when a paper is rejected the reviewers or editors have detected significant problems with that paper that preclude its potential usefulness to our audience. In this editorial, we provide an overview of the primary reasons for rejection from the European Journal of Oncology Nursing (EJON), in the hope that authors will understand our reasoning and to help them avoid rejection in the future.

Objective: To evaluate the effectiveness of nurse-led telephone follow-up (TFU) for patients with stage-I endometrial cancer. Design: Multicentre, randomised, non-inferiority trial. Setting: Five centres in the North West of England. Sample: A cohort of 259 women treated for stage-I endometrial cancer attending hospital outpatient clinics for routine follow-up. Methods: Participants were randomly allocated to receive traditional hospital based follow-up (HFU) or nurse-led TFU. Main outcome measures: Primary outcomes were psychological morbidity (State Trait Anxiety Inventory, STAI-S) and patient satisfaction with the information provided. Secondary outcomes included patient satisfaction with service, quality of life, and time to detection of recurrence. Results: The STAI-S scores post-randomisation were similar between groups [mean (SD): TFU 33.0 (11.0); HFU 35.5 (13.0)]. The estimated between-group difference in STAI-S was 0.7 (95% confidence interval, 95% CI -1.9 to 3.3); the confidence interval lies above the non-inferiority limit (-3.5), indicating the non-inferiority of TFU. There was no significant difference between groups in reported satisfaction with information (odds ratio, OR 0.9; 95% CI 0.4-2.1; P = 0.83). Women in the HFU group were more likely to report being kept waiting for their appointment (P = 0.001), that they did not need any information (P = 0.003), and were less likely to report that the nurse knew about their particular case and situation (P = 0.005). Conclusions: The TFU provides an effective alternative to HFU for patients with stage-I endometrial cancer, with no reported physical or psychological detriment. Patient satisfaction with information was high, with similar levels between groups. Tweetable abstract: ENDCAT trial shows effectiveness of nurse-led telephone follow-up for patients with stage-I endometrial cancer.

Objective To gain an understanding of how patient satisfaction (PS) with the doctor (PSD) is conceptualized through an empirical review of how it is currently being measured. The content of PS questionnaire items was examined to (a) determine the primary domains underlying PSD, and (b) summarize the specific doctor-related characteristics and behaviors, and patient-related perceptions, composing each domain. Methods A scoping review of empirical articles that assessed PSD published from 2000 to November 2013. MEDLINE and PsycINFO databases were searched. Results The literature search yielded 1726 articles, 316 of which fulfilled study inclusion criteria. PSD was realized in one of four health contexts, with questions being embedded in a larger questionnaire that assessed PS with either: (1) overall healthcare, (2) a specific medical encounter, or (3) the healthcare team. In the fourth context, PSD was the questionnaire's sole focus. Five broad domains underlying PSD were revealed: (1) Communication Attributes; (2) Relational Conduct; (3) Technical Skill/Knowledge; (4) Personal Qualities; and (5) Availability/Accessibility. Conclusions Careful consideration of measurement goals and purposes is necessary when selecting a PSD measure. Practice implications The five emergent domains underlying PSD point to potential key areas of physician training and foci for quality assessment.

More than 7,200 British women have endometrial cancer diagnosed every year. It is a figure that is rising markedly, with the cancer being linked to problems with obesity on an international scale. Although an early diagnosis leads to a good prognosis, after treatment has been completed patients are asked to attend regular outpatient clinic appointments for three to five years.

Purpose To meet the long-term needs of cancer survivors the focus of recent cancer care reform in the United Kingdom (UK) has been the implementation of alternative follow-up strategies to relieve the growing pressures threatening to overwhelm cancer services. In 2013, the UK's National Cancer Survivorship Initiative recommended an integrated package of care called the Recovery Package to meet cancer survivors' psychosocial and information needs and supported self-management. Method We aimed to explore health care professionals’ views of alternative strategies for follow-up care, and perceived barriers and facilitators to implementation of the Recovery Package for patients who had completed treatment for cancer. Semi-structured interviews with 19 participants sought views and experiences of key aspects of cancer care follow-up and aspects of the Recovery Package implementation. Results Seven themes emerged from the data; sustainability and capacity, cost implications, primary care, self-management, recovery package, resistance to change, and visions for the future. Traditional hospital follow-up was considered suitable for patients with complex needs, rarer forms of cancer and/or a poorer prognosis. Risk stratification was considered a vital element of any future strategy as was interoperability of digital communication systems between health care providers. Charitable funding had enabled one site to introduce all elements of the recovery package for patients with common cancers. Conclusion Charitable funding had enabled implementation of elements of the Recovery Package. However, new approaches require services to be commissioned and funded appropriately with effective communication between patients and primary and secondary care facilitated by interoperability of health care records.

Purpose There is a strong shift away from hospital-based approaches to follow-up after active treatment for cancer with supported self-management being promoted as an approach to long term recovery. We aimed to determine the acceptability and feasibility of patient-initiated follow-up (PIFU), supported by a self-management approach, for patients treated for Stage I endometrial cancer. Methods A mixed methods study was undertaken. Participants were asked to forego hospital outpatient follow-up appointments, supported by a self-management approach. Outcome measures included satisfaction with information and service, psychological morbidity, quality of life and preferences for follow-up. Qualitative interviews were carried out with study participants to determine their views on follow-up in general and PIFU in particular. Results We recruited 17 patients. High levels of satisfaction were evident with no physical or psychological detriment. Self-management was a favoured option. Participants questioned the value of hospital follow-up and were willing to engage in self-management if they knew who to contact if they had a problem and were aware of the signs and symptoms of recurrence. However, uptake to the study was low and further work is needed to explore if recruitment to a randomised controlled trial (RCT) is a viable option. Conclusions Alternative approaches to hospital-based follow-up need to demonstrate that patients feel supported, knowing what symptoms to report and to whom. This study shows acceptability of a supported self-management approach but raises some concerns about the feasibility of recruitment to a future RCT.

Following a diagnosis of prostate cancer, men require information and support from healthcare providers which is tailored to their individual needs. Studies reporting on the needs of gay men with prostate cancer, and their experiences of healthcare provision, are lacking. This study highlights the issues affecting this group of men and the implications for healthcare delivery in the United Kingdom. In-depth interviews were conducted with 12 gay men who had been diagnosed with prostate cancer. A phenomenological approach was used to collect and analyse data. Participants wanted, and expected, candid discussions with healthcare professionals, about how prostate cancer could affect their lives, sexual function, and how to access culturally relevant support before and after treatment. Participants perceived that their healthcare team had little knowledge about their needs, and if, or how, their experience differed due to their sexual orientation. Information provided was perceived as being misplaced or informed by heteronormative assumptions. Consideration should be given to requesting sexual orientation when recording patient information, if patients are willing to disclose. Training should be provided for healthcare professionals to enable them to provide information and support that is culturally relevant at all stages of the consultation.

Background Regular outpatient follow-up programmes are usually offered to patients following treatment for gynaecological and other cancers. Despite the substantial resources involved in providing these programmes, there is evidence that routine follow-up programmes do not affect survival or the likelihood of detecting recurrence and may not meet patient needs. Alternative follow-up modalities may offer the same outcomes at lower cost. We examined the costs of using telephone-based routine follow-up of women treated for endometrial cancer undertaken by specialist gynaecology oncology nurses in comparison to routine hospital-based follow-up. Methods The ENDCAT trial randomised 259 women at five centres in the north west of England with a known diagnosis of Stage I endometrial cancer who had completed primary treatment on a 1:1 basis to receive either standard hospital outpatient follow-up or a telephone follow-up intervention administered by specialist nurses. A cost-consequence analysis was undertaken in which we compared costs to the health system and to individuals with the trial’s co-primary outcomes of psychological morbidity and participant satisfaction with information received. Results Psychological morbidity, psychosocial needs, patient satisfaction and quality of life did not differ between arms. Patients randomised to telephone follow-up underwent more and longer consultations. There was no difference in total health service mean per patient costs at 6 months (mean difference £8, 95% percentile confidence interval: − £147 to £141) or 12 months (mean difference: − £77, 95% percentile confidence interval: − £334 to £154). Estimated return journey costs per patient for hospital consultations were £11.47. Productivity costs were approximately twice as high under hospital follow-up. Conclusion Telephone follow-up was estimated to be cost-neutral for the NHS and may free up clinic time for other patients. There was some evidence that telephone follow-up may be more efficient for patients and wider society, and is not associated with additional psychological morbidity, lower patient satisfaction or reduced quality of life. Trial Registration ISRCTN: 75220876, prospectively registered 28 October 2011. Electronic supplementary material The online version of this article (10.1007/s40258-018-0378-6) contains supplementary material, which is available to authorized users.

Purpose: Endometrial cancer is the sixth most common female cancer worldwide. There is little evidence that routine hospital surveillance increases survival or decreases morbidity following treatment. Gynaecology Oncology clinical nurse specialists (CNSs) are ideally placed to provide the care, information and support to enable women with a gynaecological cancer to self-manage and live well. A multi-centre randomised controlled trial (RCT) compared hospital follow-up (HFU) with telephone follow-up (TFU) by CNSs. The structured telephone intervention focused on information provision to meet patients psychosocial and information needs. This study aimed to explore the views of women who had received TFU and the CNS's who had delivered the service.\ud Method: A qualitative study to complement the RCT using semi-structured interviews was conducted. Twentyfive patients were randomly selected from participants in the TFU arm stratified by study site. Seven CNSs were interviewed.\ud Results: Patient and CNS regarded TFU positively; Three themes emerged from the patient interviews; Convenient Care, Discrete Personalised Care, Confidence and Reassurance. Themes arising from the CNS interviews were Patient Centred Care, Holistic Care and, Confidence and Skills. Patients found that TFU with CNS's was convenient and enabled discussion of issues and information provision at time-points relevant to them. The CNS's found the structured format of TFU enabled them to utilise their skills and knowledge to identify and meet patients holistic needs.\ud Conclusions: Alternative models of care such as TFU provided by CNSs provides the care, information and support to enable women treated for endometrial cancer to self-manage and live well.

Purpose People affected by cancer often have unmet emotional and social support needs. Online cancer communities are a convenient channel for connecting cancer survivors, allowing them to support one another. However, it is unclear whether online community use makes a meaningful contribution to cancer survivorship, as little previous research has examined the experience of using contemporary cancer communities. We aimed to explore the experiences of visitors to online cancer communities.\ud \ud Methods \ud Twenty-three in-depth interviews were conducted with online cancer community visitors, including cancer survivors (n = 18), family members (n = 2), and individuals who were both a survivor and family member (n = 3). Interviews were analysed using a grounded theory approach.\ud \ud Results \ud A theory developed explaining how individuals ‘navigated’ the experience of cancer using online cancer communities. Online advice and information led participants on a ‘journey to become informed’. Online friendships normalised survivorship and cast participants on a ‘journey to recreate identity’. Participants navigated a ‘journey through different worlds’ as they discovered relevant and hidden communities.\ud \ud Conclusions \ud This theory highlights virtual paths people affected by cancer can take to self-manage their experience of the disease. Online community experiences can be improved by promoting online evaluation skills and signposting visitors to bereavement support. Implications for cancer survivors Cancer survivors can benefit through both lurking and posting in online communities. However, individuals risk becoming distressed when they befriend\ud individuals who may soon die. Additionally, people affected by rarer cancers can struggle to find shared experiences online and may need to look elsewhere for support.

BACKGROUND: Incidence rates for breast cancer have increased significantly among Chinese women, accompanied by low utilization of breast screening and delay in symptom presentation. OBJECTIVE: The aims of this study were to explore (1) views on breast cancer and breast health among Chinese women in the United Kingdom and (2) the potential influence of social and cultural context on views and screening behavior. METHODS: Qualitative interviews were carried out with 22 Chinese women. Pertinent aspects of Grounded Theory methods, including simultaneous data collection and analysis, constant comparison, and memo writing, were used. RESULTS: Four themes emerged: cultural views on breast cancer, information sources and knowledge, breast screening practice, and views on healthcare services. The theme views on breast cancer had 3 subthemes: a fearful disease, taboo, and fatalism. Aspects of traditional Chinese culture had important influences on Chinese women's views on breast cancer. Self-care formed the most significant strategy to promote health and prevent illness. Although the study found high utilization of breast screening when offered, only 6 women reported breast awareness practices. CONCLUSIONS: This study found that traditional beliefs were not the sole determinant of breast health behavior. The way in which breast screening services are offered in the United Kingdom may reduce the significance of cultural views and shape individuals' health behavior. IMPLICATIONS FOR PRACTICE: Findings indicate that information on breast awareness should be delivered to this group of women in Chinese by health professionals through Chinese mass media.

Purpose\ud Colorectal cancer is the third most prevalent cancer worldwide, although mortality rates across most of Europe have decreased in recent years. Historically, patients are asked to return to hospital outpatient clinics following treatment to monitor for disease progression. However, new approaches are being called for that focus on meeting the information and support needs of patients. Telephone follow-up (TFU) by specialist nurses is an alternative approach; this study aimed to explore patient views of TFU.\ud \ud Methods\ud Qualitative interviews were conducted with 26 colorectal cancer patients who had received TFU. One interview was also conducted with the specialist nurse who had used a structured intervention to provide TFU. Data were analysed using content analysis.\ud \ud Results\ud All patients found TFU to be a positive experience and all stated a preference for continuing with TFU. Three main themes emerged from the patient interviews; 1) accessible and convenient care, 2) personalised care, and 3) relationship with the specialist nurse. The themes from the specialist nurse interview were 1) knowing the patient, 2) the benefits of TFU and 3) the challenges of TFU.\ud \ud Conclusions\ud TFU was well received by patients; it was perceived as highly convenient and had distinct advantages over hospital follow-up. Continuity of care was an important factor in building a trusting relationship between patient and nurse. Training in the use of the intervention is recommended and it may be useful for specialist nurses to initially meet eligible patients face to face to establish rapport before implementing TFU.

Purpose: Little is known about black African (BA) and black African-Caribbean (BAC) men's views towards cancer; yet culture and acculturation can contribute to the way in which people understand, explain and develop their attitudes towards cancer. Hence, cancer prevention and early detection strategies may not be sensitive to United Kingdom (UK)-based black men's views, affecting their awareness of risk factors and early detection services. This study explored the views of UK-based BA and BAC men towards cancer.\ud \ud Method: In collaboration with black community organisations based in four major cities in the UK, 25 participants were recruited using convenience and theoretical sampling methods. Data were collected using 33 semi-structured interviews, and analysed using grounded theory analytic procedures.\ud \ud Results: One core category (cancer through black eyes) and seven sub-categories emerged; ‘cultural views’, ‘religious beliefs’, ‘avoiding Babylon’, ‘alienation’, ‘suspicious mind’, ‘advertisements and information influence very little’, and ‘gap in service provision (bridging the gap)’. Participants' views towards cancer were linked to socially constructed perspectives, linked with cultural and religious beliefs, and shaped by what being a black male means in society. Risk factors such as smoking and obesity had different meanings and symbolisation through black eyes. There were macro- and micro-level similarities and differences between BA and BAC men.\ud \ud Conclusions: Cancer services and related public-health campaigns aimed at black men need to understand cancer through black eyes. Public health campaigns based solely on the clinical meaning of cancer are incongruent with black men's understandings of cancer, and therefore ineffective at reducing health inequality.

This chapter aims to briefly review the empirical literature on the value of consultation audio-recordings for patients and families; conduct a theory-driven examination of the factors that limit practice uptake of this intervention; and provide practical suggestions for how these factors might best be addressed to enhance clinical uptake of consultation audio-recording use. The Promoting Action on Research Implementation in Health Services (PARIHS) Framework is used to examine the impact of scientific evidence, context-specific factors, and facilitation principles, as these pertain to the uptake of consultation audio-recording in practice. Important considerations in efforts to implement a consultation audio-recording service are provided, including leadership, perceived value and benefit, resource costs, technological practicalities, litigation concerns, and staff training and support. Both top-down and bottom-up approaches to implementation are recommended to enhance the likelihood of successful uptake into practice.

The Chinese ethnic population are among the UK's largest visible minority but there is limited evidence about this population, their views about their interactions with General Practitioners (GPs) and how this impacts on their health. This study aimed to explore Chinese Elders' experiences of and attitudes towards the provision of health services in primary care.The method of investigation was a Grounded Theory study using open-ended in-depth interviews. Purposive and theoretical sampling was used to recruit thirty-three Chinese Elders from Chinese communities in the North West of England. Face-to-face interviews were conducted and audio-recorded; transcripts were translated, back translated, analysed and coded by all members of the research team to identify concepts following the Grounded Theory approach. Themes were generated from the data and were used to guide the study into the theoretical sampling phase of the investigation.Chinese Elders were inclined to present to GPs only when health concerns were perceived as serious. This was defined as being beyond their ability to self-manage. Elders tended to adopt self-management strategies rather than follow professional advice. This was mainly due to communication difficulties, poor understanding of the advice doctors gave, and the way that Chinese patients interpreted and used the advice they were given. Chinese Elders reported that the purpose of contacting doctors was to obtain medicines. They presumed that once medication had been prescribed their symptoms would be cured, and then they believed that they could self-manage their health, usually without further GP or other medical follow up.These data suggest that significant misunderstandings between Chinese Elders and GPs exist. The findings highlight the dissatisfaction expressed by Elders regarding their interactions with UK health professionals. Chinese Elders' perceptions are influenced by the way Chinese people think about health and illness, and also by their GPs' assumptions. These findings are of value to UK GPs and family doctors worldwide who are concerned with improving the quality of health services provided to an increasingly ageing migrant Chinese population.

Background and purpose Neo-adjuvant chemotherapy is recommended for ‘inoperable' locally advanced and inflammatory breast cancers. For operable breast cancers, trials indicate no survival differences between chemotherapy given pre or post-surgery. Communicating evidence based information to patients is complex and studies examining patient experiences of neo-adjuvant chemotherapy are lacking. This study aims to explore the experiences of women who received neo-adjuvant chemotherapy for breast cancer. Methods A qualitative approach using in-depth interviews with 20 women who had completed neo-adjuvant chemotherapy for breast cancer. Interview data were analysed using thematic analysis. Results The sample included a relatively young group of women, with caring responsibilities. Five main themes emerged: coping with the rapid transition from ‘well' to ‘ill', information needs and decision making, needing support and empathy, impact on family, and creating a new ‘normal'. More support was needed towards the end of chemotherapy, when side effects were at their most toxic, and decisions about forthcoming surgery were being made. Some women were referred to psychological services, but usually when a crisis point had been reached. Conclusion Information and support would have been beneficial at key time points. This information is vital in developing services and interventions to meet the complex needs of these patients and potentially prevent late referral to psychological services. Specialist oncology nurses are able to develop empathetic relationships with patients and have the experience, knowledge and skills to inform and support women experiencing neo-adjuvant chemotherapy. Targeting key time points and maintaining relationship throughout neo-adjuvant chemotherapy would be highly beneficial.

Aim Following treatment for colorectal cancer it is common practice for patients to attend hospital clinics at regular intervals for routine monitoring, although debate persists on the benefits of this approach. Nurse-led telephone follow-up is effective in meeting information and psycho-social needs in other patient groups. We explored the potential benefits of nurse-led telephone follow-up for colorectal cancer patients. Method Sixty-five patients were randomized to either telephone or hospital follow-up in an exploratory randomized trial. Results The telephone intervention was deliverable in clinical practice and acceptable to patients and health professionals. Seventy-five per cent of eligible patients agreed to randomization. High levels of satisfaction were evident in both study groups. Appointments in the hospital group were shorter (median 14.0 min) 5

williamson s., twelvetree t., thompson j. & beaver k. (2012) An ethnographic study exploring the role of ward-based Advanced Nurse Practitioners in an acute medical setting. Journal of Advanced Nursing68(7), 1579–1588. Abstract Aim. This article is a report of a study that aimed to examine the role of ward-based Advanced Nurse Practitioners and their impact on patient care and nursing practice. Background. Revised doctor/nurse skill mix combined with a focus on improving quality of care while reducing costs has had an impact on healthcare delivery in the western world. Diverse advanced nursing practice roles have developed and their function has varied globally over the last decade. However, roles and expectations for ward-based Advanced Nurse Practitioners lack clarity, which may hinder effective contribution to practice. Design. An ethnographic approach was used to explore the advanced nurse practitioner role. Methods. Participant observation and interviews of five ward-based Advanced Nurse Practitioners working in a large teaching hospital in the North West of England during 2009 were complemented by formal and informal interviews with staff and patients. Data were descriptive and broken down into themes, patterns and processes to enable interpretation and explanation. Results. The overarching concept that ran through data analysis was that of Advanced Nurse Practitioners as a lynchpin, using their considerable expertise, networks and insider knowledge of health care not only to facilitate patient care but to develop a pivotal role facilitating nursing and medical practice. Sub-themes included enhancing communication and practice, acting as a role model, facilitating the patients’ journey and pioneering the role. Conclusion. Ward-based Advanced Nurse Practitioners are pivotal and necessary for providing quality holistic patient care and their role can be defined as more than junior doctor substitutes.

Introduction:The burden of lung cancer is high for patients and carers. Care after treatment may have the potential to impact on this. We reviewed the published literature on follow-up strategies intended to improve survival and quality of life.Methods:We systematically reviewed studies comparing follow-up regimes in lung cancer. Primary outcomes were overall survival (comparing more intensive versus less intensive follow-up) and survival comparing symptomatic with asymptomatic recurrence. Quality of life was identified as a secondary outcome measure. Hazard ratios (HRs) and 95% confidence intervals from eligible studies were synthesized.Results:Nine studies that examined the role of more intensive follow-up for patients with lung cancer were included (eight observational studies and one randomized controlled trial). The studies of curative resection included patients with non-small cell lung cancer Stages I to III disease, and studies of palliative treatment follow-up included limited and extensive stage patients with small cell lung cancer. A total of 1669 patients were included in the studies. Follow-up programs were heterogeneous and multifaceted. A nonsignificant trend for intensive follow-up to improve survival was identified, for the curative intent treatment subgroup (HR: 0.83; 95% confidence interval: 0.66–1.05). Asymptomatic recurrence was associated with increased survival, which was statistically significant HR: 0.61 (0.50–0.74) (p < 0.01); quality of life was only assessed in one study.Conclusions:This meta-analysis must be interpreted with caution due to the potential for bias in the included studies: observed benefit may be due to systematic differences in outcomes rather than intervention effects. Some benefit was noted from intensive follow-up strategies. More robust data, in the form of randomized controlled trials, are needed to confirm these findings as the review is based primarily on observational studies. Future research should also include patient-centered outcomes to investigate the impact of follow-up regimes on living with lung cancer and psychosocial well-being.

Diabetes is a chronic condition requiring lifelong self-management. Patients are encouraged to access appropriate services to facilitate optimum management of diabetes. Although equitable access to healthcare in the United Kingdom is a legal right, not all groups and individuals in the community experience equity. Despite various equality laws and numerous efforts to minimise health inequalities related to access, particular community groups are more likely to experience inequitable access than others. The Bangladeshi community are one such community who experience some of the worst diabetes-related health outcomes in the United Kingdom. Little is known about their experiences and preferences in accessing diabetes healthcare information and services. Consequently, we undertook a scoping review of the literature by following the York Scoping Reviews Framework to identify the experiences and preferences of Bangladeshi patients and carers when gaining access to diabetes-related healthcare information and services. We identified eight articles and reported our results in relation to four domains of access: health service availability, health service utilisation, health service outcomes and the notion of equity. The review identified that language and literacy issues were the most common barriers hindering access to information and services. Patient knowledge regarding diabetes and its management was generally low, and friends and family were frequently being used as information sources and as informal interpreters. Additionally, there were feelings of isolation from mainstream information and services possibly resulting in the high prevalence of depression in the Bangladeshi community with women more affected than men. Social networks combined with religious and cultural beliefs as well as wider societal duties played a crucial role in accessing information and services for this population, and the identification of these issues merit further research and are possible avenues towards improved access to healthcare information and services for the Bangladeshi population.

A higher risk of diabetes mellitus in South Asian and Black African populations combined with lower reported access and self-management-related health outcomes informed the aims of this study. Our aims were to synthesise and evaluate evidence relating to patient self-management and access to healthcare services for ethnic minority groups living with diabetes. A comprehensive search strategy was developed capturing a full range of study types from 1995–2010, including relevant hand-searched literature pre-dating 1995. Systematic database searches of MEDLINE, Cochrane, DARE, HTA and NHSEED, the British Nursing Index, CAB abstracts, EMBASE, Global Health, Health Management Information Consortium and PsychInfo were conducted, yielding 21 288 abstracts. Following search strategy refinement and the application of review eligibility criteria; 11 randomised controlled trials (RCTs), 18 qualitative studies and 18 quantitative studies were evaluated and principal results extracted. Results suggest that self-management practices are in need of targeted intervention in terms of patients’ knowledge and understanding of their illness, inadequacy of information and language and communication difficulties arising from cultural differences. Access to health-care is similarly hindered by a lack of cultural sensitivity in service provision and under use of clinic-based interpreters and community-based services. Recommendations for practice and subsequent intervention primarily rest at the service level but key barriers at patient and provider levels are also identified.

Purpose Revolutionary changes have taken place to nurses’ roles and clinical responsibilities over the past decade, leading to new ways of working and higher levels of nursing practice. However, despite the development of nurse-led clinics and services within oncology there has been little formal evaluation. Methods A survey of 103 UK oncology specialist nurses was undertaken to explore their scope of practice, with emphasis on nurse-led services. Results The survey highlighted significant developments within nurses’ roles and nurse-led services, although there was a distinct lack of clarity between nurses’ titles and their roles/responsibilities. Most nurses had extended their role. However there were significant differences in the nature of clinical practice, such as clinical examination and nurse prescribing. Overall, new roles were greatly valued by the multidisciplinary team, reducing waiting times and providing benefits for patients. However other nurses felt frustrated by deficiencies in infrastructure and support, which often overshadowed potential benefits. Conclusions There is a great diversity in oncology specialist nurses’ roles; however lack of clarity in titles, training, competencies and responsibilities is creating confusion. Role developments and nurse-led clinics have been ad hoc and poorly evaluated. The introduction of a competency framework, national standards and a system of clinical appraisals seems key to providing increased transparency and vital safeguards for both nurses and patients. Without further exploration and evaluation of nurse-led initiatives it is difficult to fully appreciate their impact on patients, staff and service delivery.

Background. The optimal follow-up strategy for colorectal cancer is not known, and although patients are seen in traditional outpatient follow-up clinics, this system may not meet psycho-social and information needs. Design. An exploratory qualitative study. Method. In-depth interviews were conducted with 27 patients who had completed treatment for colorectal cancer. The data were analysed using thematic analysis. Results. One dominant theme emerged from the data with several sub-themes. The dominant theme was ‘knowing what to expect’ after bowel surgery. The subthemes related to ‘living with altered bowel function’, the ways patients gathered information about their condition through ‘trial and error’ and ‘information and support from specialist nurses’. Patients who did not have a stoma were particularly vulnerable and expressed a need for more information on knowing what to expect after surgery. The role of the colorectal nurse specialist was vital in providing information and support; in particular, nurse-led clinics provided continuity of care and information that was tailored to individual need. Conclusions. Traditional hospital follow-up does not always address patients’ psycho-social and information needs. Nurse-led services were commented on favourably in terms of providing information that was tailored to individual need as well as being responsive to urgent patient concerns; future innovative strategies for providing follow-up care for patients with colorectal cancer should draw on the specialist knowledge and skills of these nurses. Relevance to clinical practice. Nurse-led clinics and/or telephone follow-up by specialist nurses may be effective models of care for this particular patient group, providing appropriate access for meeting clinical, psycho-social and information needs.

Aims and objectives. To explore the views of patients and specialist breast care nurses on telephone follow-up after treatment for breast cancer. Background. A recent randomised controlled trial demonstrated that nurse-led telephone follow-up led to high levels of patient satisfaction with no physical or psychological detriment. This study aimed to explore in more detail the views of patients randomised to telephone follow-up and the nurses who conducted telephone appointments. Design. Qualitative. Method. Individual interviews with 28 patients and four specialist breast care nurses. Content analysis was used to analyse the interview data. Results. Telephone follow-up was convenient for patients and provided continuity of care. Speaking on the telephone was perceived as a more ‘normal’ activity than attending hospital outpatient clinics. A structured approach was appreciated, instilling feelings of confidence that all questions had been asked and no errors had been made. Specialist nurses emphasised the high level of skill required to deliver the intervention and perceived that the telephone approach was well able to meet the individual needs of patients. Conclusions. Positive views on telephone follow-up were reported. An experienced and skilled practitioner, with effective communication skills, is required to deliver the intervention and a period of training is recommended. Nurse-led telephone interventions have a broader applicability to other disease conditions, although more work is needed to develop appropriate interventions and evaluate their effectiveness. Relevance to clinical practice. Nurses at advanced levels of practice are uniquely placed to deliver such complex interventions. However, a period of initial training with effective peer support and channels for ongoing feedback are essential for administering an intervention that relies on audio rather than visual cues.

Objectives To design and administer an attitude rating scale, exploring colorectal cancer patients’ views of involvement in decision making. To examine the impact of socio-demographic and/or treatment-related factors on decision making. To conduct principal components analysis to determine if the scale could be simplified into a number of factors for future clinical utility. Methods An attitude rating scale was constructed based on previous qualitative work and administered to colorectal cancer patients using a cross-sectional survey approach. Results 375 questionnaires were returned (81.7% response). For patients it was important to be informed and involved in the decision-making process. Information was not always used to make decisions as patients placed their trust in medical expertise. Women had more positive opinions on decision making and were more likely to want to make decisions. Written information was understood to a greater degree than verbal information. The scale could be simplified to a number of factors, indicating clinical utility. Conclusion Few studies have explored the attitudes of colorectal cancer patients towards involvement in decision making. This study presents new insights into how patients view the concept of participation; important when considering current policy imperatives in the UK of involving service users in all aspects of care and treatment.

Aim. The aim of this study was to explore views on patient participation in decision making, as described by health professionals caring for people with colorectal cancer. Background. Patient participation in health-care decision making is on the policy agenda at an international level. However, many aspects of cancer care and treatment are complex and it is unclear how health professionals view their role as promoters of patient participation. Design. A qualitative exploratory study. Methods. In depth interviews with 35 health professionals in clinical practice. Data were analysed using thematic content analysis, assisted by a computer software package for analysis of qualitative data (N-VIVO). Results. Choices in relation to surgical treatment were viewed as limited. Although it was perceived that patients could be more involved in decisions related to adjuvant treatment, providing information on various chemotherapy regimes was challenging. It was acknowledged that patients could be involved in treatment choices but there was far less clarity concerning aspects of physical and psychological care. Age was a factor when determining which patients should be offered treatment choices. Conclusion. The availability and presentation of choices to patients is context specific and tailored to the preferences of individuals. If health professionals focus only on aspects of decision making related to treatment, the potential for shared partnerships with patients in relation to choices about physical and psychological care may be lost. This may be particularly pertinent for nurses and allied professions who engage with patients throughout the illness trajectory. Relevance to clinical practice. Policy makers should arguably appreciate that health professionals have an awareness of current thinking on patient participation, but may find policy recommendations challenging to implement in clinical practice when faced with the individual needs and preferences of patients and the complexities and uncertainties of disease management.

Objectives: To explore patient views on participation in treatment, physical care and psychological care decisions and factors that facilitate and hinder patients from making decisions. Design: Qualitative study using semi-structured interviews with patients. Setting and participants: Three NHS Trusts in the north-west of England. Theoretical sampling including 41 patients who had been treated for colorectal cancer. Results: For patients, participation in the decision-making process was about being informed and feeling involved in the consultation process, whether patients actually made decisions or not. The perceived availability of treatment choices (surgery, radiotherapy, chemotherapy) was related to type of treatment. Factors that impacted on whether patients wanted to make decisions included a lack of information, a lack of medical knowledge and trust in medical expertise. Patients perceived that they could have a more participatory role in decisions related to physical and psychological care. Conclusion: This study has implications for health professionals aiming to implement policy guidelines that promote patient participation and shared partnerships. Patients in this study wanted to be well informed and involved in the consultation process but did not necessarily want to use the information they received to make decisions. The presentation of choices and preferences for participation may be context specific and it cannot be assumed that patients who do not want to make decisions about one aspect of their care and treatment do not want to make decisions about other aspects of their care and treatment.

Objectives: To identify barriers and facilitators to research utilisation as perceived by breast care nurses (BCNs) and to identify BCNs' preferred methods of receiving research based information.\ud \ud \ud The sample: 263 BCNs in the UK and represented a 76.2% response rate.\ud \ud \ud Data collection: Conducted by postal survey and consisted of a demographic questionnaire, the Barriers to Research Utilisation Scale [BARRIERS: The Barriers to Research Utilization Scale, 1987] and questions on preferred methods of dissemination.\ud \ud \ud Results: The most frequently identified barriers were associated with communication and organisational issues, e.g. ‘statistical analyses not understandable', ‘insufficient time on the job to implement new ideas', ‘facilities inadequate for implementation', ‘research not reported clearly and readably' and ‘no time to read research'. Facilitators included working within a motivated, supportive, research oriented team and time to read and discuss practical implications within specialist networks. BCNs perceived meeting experts, specialist conferences and discussion groups/workshop as the preferred methods for keeping up to date.\ud \ud \ud Conclusions: BCNs want and need research reports to be understandable, readily available and clearly presented but must improve their research appraisal skills. Relevant organisational barriers should be confronted with support from managers and the multidisciplinary team e.g. time, development and training.

The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients' preferred roles in self-care are under-researched.

Objectives To explore preferred treatment decision-making roles, and rationales for role preference, and to identify perceived facilitators to and barriers from attaining preferred role. Design Qualitative design. Setting and Participants One secondary care and four primary care sites in North-west England. Purposive sample of 32 adult asthma patients with varied socio-economic backgrounds and disease severity. Methods Tape-recorded focused-conversation style interviews. Interview topic guide derived from the literature. Sort cards employed to provide the focus for exploration of role preferences. Results Active (n = 7), collaborative (n = 11) and passive (n = 14) decisional role preferences were identified. Respondents cited level of knowledge; trust; duration of condition; severity of condition at the decisional juncture; lifelong nature of asthma; a perception that ‘it is my body’; characteristics of the individual and their response to health professionals as influencing role preference. Perceived facilitators and barriers to participation included condition-related knowledge, practical issues (e.g. lack of time during consultation) and clinicians' interpersonal skills. Conclusions Most respondents wished to contribute to or feel involved in treatment decision-making, but not necessarily to control it. Some hindrances to participation would be amenable to intervention. The quality of the provider–patient relationship is central to facilitating participation.

The aim of this study was to gain insight into patients' perspectives on key information needs regarding their asthma. Focused conversation-style interviews were conducted with a purposive sample of 32 patients (aged 18-84 years; males=17, females=15) from five sites (four primary care, one secondary care) in North West England. Interviews were tape recorded and transcribed verbatim, then subjected to line-by-line content analysis. Nine core information needs were identified: current medications; new therapies; medication side effects; triggers of an asthma attack; lifestyle issues; asthma causation; effects of asthma; long term outcome; and symptom control. Individual differences in information need were apparent, as were differences according to asthma severity. The findings highlight some of the challenges facing health professionals when information-giving. The study's findings could be used in a clinical context to facilitate discussion or to tailor information, and could also provide a basis for future quantitative studies.

Background: Despite 30 years of research attention, discharge planning and district nurse (DN) referral remain problematic and few cancer-related publications exist. With shorter hospitilizations, discharged cancer patients and their carers may experience unmet needs for assessment, information and support. Although DN referral might enable patient/carer needs to be met, the DN role lacks clarity.Aim: To investigate the needs of people with cancer, and their lay carers during discharge from hospital to home, and identify the role of DNs in meeting these needs.Method: In this qualitative study, 71 pre- and postdischarge interviews were performed with cancer patients and (where possible) their carers. Predischarge interviews focused on expectations and postdischarge interviews on experiences of discharge and aftercare. Interview tapes were transcribed and analysed thematically.Results: Interviewees anticipated few aftercare needs during predischarge interviews but described met and unmet needs during postdischarge interviews. Unmet needs of those referred and not referred to the district nursing service were similar. Patients and carers had unmet needs for psychological support related to nutrition. Carers, especially those not resident with and not related to patients, had informational needs. Even very elderly, ill and isolated patients felt that other people had greater needs than their own and many thought that DNs only performed physical tasks.Conclusion: All cancer patients discharged from hospital might be referred to a DN for ongoing assessment of needs. However, to ensure optimal results, the DN role needs to be clarified and public perceptions altered. Further research on psychological aspects of nutrition and the needs to carers not resident with/not related to patients is necessary.

The World Health Organization (1990) provides guidelines on what constitutes effective palliative care. However, it remains unclear whether people with a terminal illness living in their own homes have access to the services they need. This article reports on a study carried out in the United Kingdom on the views of people with a terminal illness (n=15), their lay carers (n=10) and bereaved carers (n=19). Participants were asked about the primary care services they had received and their views on both helpful and unhelpful aspects of service provision. All terminally ill people in the study (except one) had cancer, which raises questions about access to palliative care services for non-cancer populations. Participants had contact primarily with district nurses, general practitioners and Macmillan nurses (specialist nurses). Few other services were received. A number of important issues arose from the data, indicating that lay carers in particular were not always receiving the information and support they needed in order to be effective care-givers.

Objective: An exploratory study has been carried out to examine decision-making role preferences and information needs for a sample of people with colorectal cancer (n = 48). The work replicated a larger study carried out for women with breast cancer (n = 150), and this paper compares and contrasts findings for both disease groups. Design: A cross-sectional design was employed, involving structured interviews. The main variables investigated were decision-making preference (using a decisional role preference card sort), perceived decisional role and information need (using an information needs questionnaire). Results: The majority (78%) of the colorectal cancer patients preferred to play a passive role in decision making, in contrast to 52% of women with breast cancer in previous work. Eighty per cent of the colorectal sample and 61% of the women with breast cancer perceived that the doctor had made treatment decisions. Priority information needs for both groups related to cure, spread of disease and treatment options. Conclusions: The two most striking findings from the comparison between the two disease groups relate to the differences in decision-making role preferences and the similarities in information needs. The process of involving people with colorectal cancer in treatment decision making warrants further investigation. The similarity in information needs of the two disease groups has implications for health care professionals providing information to people with cancer.

Although there has been a proliferation of specialist services to manage specific diseases and conditions, the majority of people with a terminal illness are cared for in their own homes by generalist practitioners. This study, based on interviews with people with a terminal illness (n=15), lay carers (n=10) and bereaved carers (n=19), aimed to establish the abilities of patients, within an activities of daily living framework, and to ascertain views on key health professionals. Results suggested that lay carers played an important role in meeting the needs of patients and had a number of insightful and useful comments to make on service provision, in particular with regard to specialist nursing services. If lay carers are to be engaged as partners in the caring process then more effective communication patterns between generalists, specialists and service users need to be established.

This article explores some of the pertinent issues that arose while conducting a research study involving people with a terminal illness, their lay carers and bereaved carers. Ethical considerations are of paramount importance when carrying out research with vulnerable groups; and issues such as approaching potential participants without adding to their distress and anxiety, and obtaining consent without coercion need careful consideration. Adhering to a stringent research design, while preferable for the research agenda, is not always compatible with the ethical concepts of beneficence and non-maleficence. The potential benefits to vulnerable persons of being involved in such work may not be immediately obvious although altruism, in wanting to help others in a similar situation in the future, and the therapeutic effect of telling one’s story may have indirect benefit for some. However, it may not be possible for the researcher to ever fully ascertain the actual benefit and harm incurred in carrying out such work.

This article addresses some of the challenges facing community nurses in helping patients to manage their pain at home. The focus is on adults who suffer cancer pain, concentrating on physical management. The World Health Organization (WHO) guidelines on cancer pain relief (WHO, 1996), are described and evaluated in the light of recently published evidence on their efficacy. Evidence concerning the under-management of cancer pain by healthcare professionals is considered. Strategies to help ensure adequate pain relief at home taking account of the patient's perspective are examined. The article identifies the need for interdisciplinary cooperation in the management of cancer pain in order to promote effective pain relief for patients at home.

Asmall sample of women (n=9) receiving high dose chemotherapy for advanced breast cancer were asked to complete a quality of life measure (QLQ-C30) at three time points: prior to, during and post treatment. Despite the onset of severe side effects, no significant deterioration in quality of life was recorded in terms of physical, role, emotional, cognitive or social functioning. The role of the clinical nurse specialist (CNS) in providing continuity of care as well as support and information for these women is discussed. Further work in this area with larger sample sizes is needed to confirm these findings and to further investigate the role of the CNS in this context.

The purpose of this study was to explore the hypothesis that women with breast cancer had specific preferences about the degree of control they wanted over treatment decision making. One hundred fifty women, newly diagnosed with breast cancer, were interviewed and their preferences for participation in treatment decision making were established using a measurement tool designed to elicit decision-making preferences (Degner LF, Sloan JF. Decision making during serious illness: What role do patients really want to play? J Clin Epidemiol 1992;45:944-50). Two hundred women with benign breast disease served as a descriptive comparison group. Unfolding theory (Coombs CH. A theory of data. New York: John Wiley & Sons, 1964) provided a means of analyzing the data so that the degree of control preferred by each woman could be established. The majority of the newly diagnosed women preferred to play a passive role in treatment decision making, leaving the decision-making responsibility to their physician, whereas the benign control group preferred a collaborative role in which joint decisions could be made between the patient and the physician. The implications of the results for patient participation are discussed.