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Purpose The ACTIVE intervention uses a novel fatigue propensity tool to target a behavioural fatigue self-management programme for women undergoing radiotherapy for early breast cancer. We assess feasibility and outcomes for ACTIVE. Methods Mixed methods comprised a randomised feasibility trial with qualitative process evaluation and a nested fatigue risk substudy. Participants at a higher risk of fatigue were allocated 2:1 to behavioural intervention or information alone. Participants at a lower risk of fatigue entered the fatigue risk substudy. Feasibility was assessed by rates of eligibility, recruitment, retention and adherence. Qualitative interviews explored acceptability of the intervention and trial processes. Measures of fatigue, anxiety, depression, quality of life and self-efficacy were self-reported before, during and 10 days, 3 weeks and 6 months after radiotherapy. Pre-treatment fatigue risk score and post-treatment fatigue were correlated. Results Fifty percent (n = 75) of eligible patients were recruited with 33 higher risk participants randomised to the trial and 42 entering the fatigue risk score substudy. Trial design and methods were feasible and acceptable with 91% of participants completing all measures according to protocol. Fatigue was clinically-significantly lower in the intervention group during, and in the weeks after, treatment compared to the control: all secondary measures favoured the intervention group. Positive group differences were not maintained at 6 months. Conclusion Our targeted approach to fatigue self-management is feasible and acceptable within the early breast cancer pathway. Multiple benefits were reported by patients who received the intervention, which is worthy of further investigation. Trial registration ISRCTN 10303368. Registered August 2017. Health and Care Research Wales Clinical Trial Portfolio Registration 31419.

Purpose\ud To inform improvement in cancer treatment experience and outcomes for people with dementia or milder cognitive impairment.\ud People with dementia, compared to those without, experience more side effects from cancer treatment and have poorer outcomes including poorer survival.\ud Methods\ud The research was a mixed methods exploratory case study. Each case was a cancer treatment in a person with memory loss, a common symptom of dementia. Observations were conducted in 30 clinic sessions at one cancer centre between September 2014 and February 2015. Thirty-three encounters between people with a memory problem and a staff member were observed and ten consultations recorded. Interviews were conducted with five staff members and six people receiving cancer treatment, five accompanied by their carer. Analysis, informed by hermeneutic phenomenology, enabled the treatment pathway to be mapped and modelled to reveal sites for intervention.\ud Findings\ud Five potential sites of intervention were identified in the treatment pathway. Five actions at the sites of intervention that may improve patient experience and outcomes include, raising awareness of common problems for people with cognitive impairment receiving cancer treatment, encouraging disclosure of memory problems, staff training to identify memory problems and to know what to do, offering tools and techniques to aid self-management of memory problems, and addressing carer support needs.\ud Conclusion\ud Embedding biomedical treatment of cancer within a dementia-friendly psychosocial system may enable safe cancer treatment for a greater number of people with dementia or milder cognitive impairment.

Background: Family carers of patients with advanced cancer living at home have an important role in providing the patient’s food and drink. Little attention has been paid to the support needs, particularly of the nutrition needs, of family carers. Objective: The aim of this study was to report support needs of family carers of patients with advanced cancer and eating problems. Methods: The research is an inductive secondary analysis of baseline interview data from an exploratory trial conducted in the south of England. The interviews explored the management of eating problems in the home. A sample of 31 patients was selected where the patient’s partner/spouse had also agreed to take part in the primary study. Results: The analysis and interpretation reveal family carers to have a nourishing role, which is taken for granted by the patient and the carer themselves. This role is typically seen as an extension of the normal role of wife, mother, or homemaker in the family and no more than what a family carer should do. This obscures a need for information and advice on the nutritional care of patients with cancer with fickle appetite and other eating problems that are difficult to manage. Family carers may also be at a nutritional risk because their own dietary intake was found to mirror the patient’s with some of them losing weight. Conclusions: Family cancer carers have a nourishing role that requires knowledge and skill beyond the everyday. Implications for Practice: Cancer carers need education in how best to provide nutritional care. They also need support in managing their own nutritional risk.

Noninvasive ventilation (NIV) has been shown to be beneficial for patients with respiratory failure; however, many patients fail to tolerate it and require other interventions. The objective of this thematic synthesis was to describe the nature of NIV experiences in adults with hypercapnic respiratory failure. A systematic, computerised literature search of English-language databases was undertaken with no restriction on date of publication. A total of 99 papers was identified and screened for eligibility from databases including CINAHL, Medline and PsycINFO, and some were hand searched. 45 papers were critically appraised and 32 met our inclusion criteria. Thematic analysis identified six key themes: benefits of NIV; fear (of various categories, namely, fear of technology/mask, fear of death and dying, and fear of pain and suffering); adaptation to NIV machine; decision making; need for information; and relationship with healthcare professionals. For people using NIV treatment, the experience of being on the NIV machine is unexpected and can be stressful. Findings from this review offer healthcare professionals insights and understanding into the patient experience of NIV. Healthcare professionals may use these findings to implement new strategies in NIV provision and the exploration of the applicability of age-specific supportive care NIV guidelines.

The review question is: assistance at mealtimes for older adults in hospital settings and rehabilitation units: what goes on, what works and what do patients, families and healthcare professionals think about it?The specific objectives are:This mixed methods review seeks to develop an aggregated synthesis of quantitative and qualitative data on assistance at mealtimes for older adults in hospital settings and rehabilitation units in order to derive conclusions and recommendations useful for clinical practice and policy decision making.Worldwide, it is estimated that between 20% and 50% of all adult patients admitted to hospital wards are malnourished. Reported prevalence occurs, depending on the specific patient group of interest, type of healthcare setting, disease state and criteria used to assess malnutrition. For older adults in hospital (over 65 years) the prevalence of malnutrition has been reported as being as high as 60% and can continue to deteriorate during the hospital stay. This is an area of concern as it is associated with prolonged hospital stays and increased morbidity (pressure ulcers, infections and falls) and mortality, especially for those with chronic conditions.Malnutrition in adults in developed countries is frequently associated with disease and may occur because of reduced dietary intake, malabsorption, increased nutrient losses or altered metabolic demands, with reduced dietary intake being considered the single most important aetiological factor. For the hospitalized older adult patient with pre-existing malnutrition, further nutritional problems are often encountered due to a reduced dietary intake. Poor food intake for older patients in hospital may be due to the effects of acute illness, poor appetite, nausea or vomiting, "nil by mouth" orders, medication side effects, catering limitations, swallowing and/or oral problems, difficulty with vision and opening containers, the placement of food out of the patients' reach, limited access to snacks, and cultural or religious food preferences.In the UK, national reports have shown some older patients with good appetites were not receiving sufficient nourishment because of inadequate feeding assistance. An initial search of literature has found that this problem has also been identified in Australia, New Zealand, Sweden, and the USA.A variety of initiatives have been developed to try to ensure that patients receive mealtime assistance if required, and include, for example:Mealtime assistance has the potential to enhance nutritional intake, clinical outcomes, and patient experience. Four reviews and one scoping review have previously been conducted in this area. All of the reviews included adult patients over 18 years of age. The focus of the systematic review by Green et al. was volunteers providing feeding assistance in any institutional setting; it included a narrative analysis of 10 empirical studies from a limited number of database searches. Weekes et al. conducted a structured literature review focusing on improving nutritional care for patients in any healthcare setting, with specific emphasis on feeding assistance and the dining environment. The review was limited to quantitative study designs (randomized controlled trials, controlled trials and observational studies and audits). A systematic review by Wade et al. investigated nutritional models of care (feeding assistance, protected mealtimes, red tray initiative and communal dining) for hospitalized and rehabilitation inpatients. This review focused on data from trials only and only three databases were searched. A Joanna Briggs Institute (JBI) systematic review has also been published on the topic of mealtime assistance. A comprehensive search strategy was outlined and the review included six randomized controlled trials and quasi experimental designs covering a range of outcomes, but was limited to inpatients in acute care hospitals. The scoping review by Cheung et al. included intervention studies published from 2001 to 2012 from across three databases. The focus was on the evidence for dietary, food service and mealtime interventions in the acute care setting.In this proposed mixed methods review, the quantitative component will seek to incorporate a wider range of study designs, including but not limited to, cohort studies (with control), case-controlled studies, descriptive and case series designs. A qualitative component will also be incorporated to help understand why initiatives do or do not work. Combining both quantitative and qualitative studies in the same review will make this the first mixed methods systematic review which considers assistance at mealtimes for older adults over 65 years of age in both hospital settings and rehabilitation units. For the purposes of this review mealtime assistance is defined as receiving help from another person to eat or complete the eating process when a meal or snack is served. This may include, for example, making sure that suitable cutlery is available; taking lids off food products; cutting food into smaller pieces; providing verbal encouragement; or physically feeding a patient by transferring food from the plate to the person's mouth, either at the bedside or in a separate dining room.The review will seek to investigate the feasibility, acceptability and effectiveness of initiatives for improving assistance at mealtimes for older adults in hospital settings and rehabilitation units, and will ask these questions: what goes on, what works and what do patients, families and healthcare professionals think about it?

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

Context Cachexia is commonly found in cancer patients and has profound consequences; yet there is only one questionnaire that examines the patient's perspective. Objective To report a rigorously developed module for patient self-reported impact of cancer cachexia. Methods Module development followed published guidelines. Patients from across the cancer cachexia trajectory were included. In Phase 1, health-related quality of life (HRQOL) issues were generated from a literature review and interviews with patients in four countries. The issues were revised based on patient and health care professional (HCP) input. In Phase 2, questionnaire items were formulated and translated into the languages required for Phase 3, the pilot phase, in which patients from eight countries scored the relevance and importance of each item, and provided qualitative feedback. Results A total of 39 patients and 12 HCPs took part in Phase 1. The literature review produced 68 HRQOL issues, with 22 new issues arising from the patient interviews. After patient and HCP input, 44 issues were formulated into questionnaire items in Phase 2. One hundred ten patients took part in Phase 3. One item was reworded, and 20 items were deleted as a consequence of patient feedback. Conclusions The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment in clinical trials and practice. It contains five multi-item scales (food aversion, eating and weight-loss worry, eating difficulties, loss of control, and physical decline) and four single items.

PURPOSE OF REVIEW: \ud \ud Cancer cachexia is common and reduces function, treatment tolerability and quality of life. Given its multifaceted pathophysiology a multimodal approach to cachexia management is advocated for, but can be difficult to realise in practice. We use a case-based approach to highlight practical approaches to the multimodal management of cachexia for patients across the cancer trajectory.\ud \ud RECENT FINDINGS: \ud \ud Four cases with lung cancer spanning surgical resection, radical chemoradiotherapy, palliative chemotherapy and no anticancer treatment are presented. We propose multimodal care approaches that incorporate nutritional support, exercise, and anti-inflammatory agents, on a background of personalized oncology care and family-centred education. Collectively, the cases reveal that multimodal care is part of everyone's remit, often focuses on supported self-management, and demands buy-in from the patient and their family. Once operationalized, multimodal care approaches can be tested pragmatically, including alongside emerging pharmacological cachexia treatments.\ud \ud SUMMARY: \ud \ud We demonstrate that multimodal care for cancer cachexia can be achieved using simple treatments and without a dedicated team of specialists. The sharing of advice between health professionals can help build collective confidence and expertise, moving towards a position in which every team member feels they can contribute towards multimodal care.

Context: Cancer is widely acknowledged to impact on the whole family. Yet, we do not know if there is benefit (or harm) from patient-family carer interventions in the context of cancer care. Objectives: To report a systematic search for and narrative review of patient-family carer interventions tested in the context of cancer care for effect on symptoms and other health-related problems in patients and/or their family members. Methods: A systematic literature search was carried out using Cochrane principles. Searches were of MEDLINE, EMBASE, PsycINFO, and CINAHL databases for reported trials of patient-family carer focused interventions. Outcomes of interest were health indicators; measures of physical, psychological, social, and quality-of-life status of the patient and/or family member(s). Limits were English language; 1998 to March 2010; and adults. Relevant information was extracted, quality assessed using the Cochrane Collaboration's tool for assessing risk of bias, and presented as a narrative synthesis (meta-analysis was not appropriate). Results: The review found no empirically tested interventions for family groups (patient and two or more family members), but 22 interventions for patient-family carer partnerships (couple interventions) tested in 23 studies and reported in 27 publications. Recruitment and attrition were problematic in these studies, limiting the reliability and generalizability of their results. Conclusion: In the trials of cancer couple interventions included in the review, a pattern emerged of improvement in the emotional health of cancer patients and their carers when the intervention included support for the patient-family carer relationship. Further investigation is warranted.

Up to 80% of people with cancer will develop weight loss and anorexia during the advanced stages of the disease. The Macmillan Weight and Eating Studies (2000-2009) have used the Medical Research Council complex interventions framework to develop the first psychosocial intervention for weight- and eating-related distress (WRD and ERD) in people with advanced cancer and their carers: The Macmillan Approach to Weight and Eating (MAWE).This article reports the findings of a Phase II trial of MAWE that investigated its deliverability, acceptability, and patient-perceived effect on WRD and ERD.The Phase II trial, conducted in 2006-2007, was of cluster-randomized design, with two community palliative care teams randomized to different arms. It used mixed methods to compare an intervention group (n=25), the MAWE group, which was supported by MAWE-trained clinical nurse specialists, with a group that received usual care (n=25), the control group.MAWE was deliverable in clinical practice and acceptable to patients. Unplanned exposure of the MAWE group to the intervention before an initial measure of WRD and ERD proved problematic to the trial process. Despite this, quantitative and qualitative analyses indicate that MAWE does not exacerbate WRD and ERD and may help patients with advanced cancer live with the weight loss and anorexia that are the symptoms of cancer cachexia syndrome.A follow-on randomized controlled trial of MAWE is warranted but should be of a revised design.

Mortality associated with cancer remains high, but more people are surviving cancer. Some people experience long-term problems associated with cancer and its treatment, and there is a need to know how to support them. This systematic literature review explores primary research for psychosocial implications of long-term survival (>or=5 years) following a cancer diagnosis and interventions designed to address psychosocial problems in the long term. A systematic search of BIDS, BNI, Cancer.gov, CINAHL, Medline, PsychINFO and Web of Science was conducted to identify research publications from 1960 to 2006. Papers were selected on the basis of pre-defined criteria and rated by three independent coders. Forty-three studies met the eligibility criteria. These indicated that most people experience few problems five or more years after their diagnosis of cancer. However, 20-30% of survivors consistently reported problems associated with cancer and its treatment including physical problems, poorer quality of life, psychological distress, sexual problems, problems with social relationships and financial concerns. Not all cancer types are represented in this review. Only two intervention studies met the eligibility criteria. Research is needed to establish appropriate interventions to support those experiencing problems in the long term to enhance well-being.

Aim. This paper is a report of a study to explore the management of changing eating habits in people with advanced cancer. Background. Internationally there is interest in supporting self-management as a way of helping people to live with illness. It is unknown if promoting self-management in people with cancer can lead to beneficial health outcomes. In order to develop and test interventions that promote self-management in cancer patients, it is first important to understand ways in which they can help themselves. Method. A mixed-methods exploratory case study of the meaning, management and manifestations of weight loss and change in eating habits was conducted with 30 patients receiving palliative home care in England in 2003. Semi-structured interview data were analysed using both content and thematic approaches. Findings. Participants described a total of 141 different self-actions, each of which formed a component of up to four self-action strategies that were used to aid life with advanced cancer. The strategies were ‘Taking control’, ‘Promoting self-worth’, ‘Relationship work’, and ‘Distraction’. Employing these strategies led to changes in thinking and behaviour that were motivated by a desire to sustain or enhance well-being. The pattern of self-action strategies adopted by each individual is theorized to be dependent on the personal and contextual resources available. Conclusion. Patients can and do find their own solutions to eating problems and nurses should support this self-action. The proposed theory of self-management of eating change provides an understanding that can inform the provision of this support.

Members of the public are increasingly consulted over health care and research priorities. Patient involvement in determining cancer research priorities, however, has remained underdeveloped. This paper presents the findings of the first consultation to be conducted\ud with UK cancer patients concerning research priorities. The study adopted a participatory approach using a collaborative model that sought joint ownership of the study with people affected by cancer. An exploratory, qualitative approach was used. Consultation groups were the main method, combining focus group and nominal group techniques. Seventeen groups were held with a total of 105 patients broadly representative of the UK cancer population. Fifteen areas for research were identified. Top priority areas included the impact cancer has on life, how to live with cancer and related support issues; risk factors and causes of cancer; early detection and prevention. Although biological and treatment related aspects of science were identified as important, patients rated the management of practical, social and emotional issues as a higher priority. There is a mismatch between the research priorities identified by participants and the current UK research portfolio. Current research activity should be broadened to reflect the priorities of people affected by the disease.

ContextWomen taking aromatase inhibitors as treatment for breast cancer commonly experience joint pain and stiffness (aromatase inhibitor–associated arthralgia [AIAA]), which can cause problems with adherence. There is evidence that exercise might be helpful, and Nordic walking could reduce joint pain compared to normal walking.ObjectivesTo determine the feasibility of a trial of Nordic walking as an exercise intervention for women with AIAA.MethodsA feasibility study was carried out in a sample of women with AIAA using a randomized control design. Women were randomized to exercise (six-week supervised group Nordic walking training once per week with an increasing independent element, followed by six weeks 4 × 30 minutes/week independent Nordic walking); or enhanced usual care. Data were collected on recruitment, retention, exercise adherence, safety, and acceptability. The Brief Pain Inventory, GP Physical Activity Questionnaire, and biopsychosocial measures were completed at baseline, six and 12 weeks.ResultsForty of 159 eligible women were recruited and attrition was 10%. There was no increased lymphedema and no long-term or serious injury. Adherence was >90% for weekly supervised group Nordic walking, and during independent Nordic walking, >80% women managed one to two Nordic walking sessions per week. From baseline to study end point, overall activity levels increased and pain reduced in both the intervention and control groups.ConclusionOur findings indicate that women with AIAA are prepared to take up Nordic walking, complete a six-week supervised course and maintain increased activity levels over a 12-week period with no adverse effects.

The importance of user involvement in the organisation and delivery of health services and the conduct of research has increased over recent decades. Involving people at the end of life in research remains an under-developed area of research activity. The Macmillan Listening Study, a UK-wide study exploring research views and priorities of people affected by cancer, adopted a participatory research approach. Patients and carers, including two participants receiving palliative care services, collaborated in all aspects of the study as co-researchers. In this paper, we discuss the experience of working with co-researchers to collect data from two hospices. We will discuss practical, ethical and methodological challenges, including specific training needs and the emotional demands of conducting the research. Recommendations are made to facilitate successful collaboration with palliative care service users in end of life research.

Aim. This paper reports a study of the experience of and concerns about weight loss described by patients with advanced cancer, their caregivers and nurse specialists. Background. Weight loss is reported to be one of the commonest symptoms experienced by patients with advanced cancer. There is evidence that it can be of concern to patients and their caregivers. However, little is known about why this is the case or how people might be helped to live with the symptom. Method. An exploratory study with a purposive sample of 30 patients, 23 caregivers, and 14 specialist nurses from the South of England was conducted in 2003. The in-depth interviews focused on the experience of weight loss and its management. Interviews were transcribed verbatim, then analysed using an approach informed by Wolcott's framework for qualitative data analysis and Miles and Huberman's ‘mixed strategy for cross-case analysis’. Findings. Concern was experienced when advanced cancer became visible through weight loss. Visible weight loss symbolized proximity to death, loss of control and both physical and emotional weakness. Despite this, weight loss was not routinely assessed by palliative care nurse specialists, who, like others in the patient's social network, respected a weight loss taboo in the belief that little could be done to help people live with the symptom. Conclusion. Weight loss-related concern might be mitigated if clinicians adopted a systematic and proactive approach to the management of the symptom that breaks through the weight loss taboo.

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.

• The nursing handover is a key activity for nurses working in acute hospital wards in the NHS. Little scholarly attention has been paid to the use nurses make of the information exchanged during nursing handover or how certain features of the nursing handover might impact positively or negatively on patient outcomes. • This paper draws on data from a phenomenological study of 28 qualified diplomate nurses. • During the course of non-directive semi-structured interviews, some of the participants in this study expressed the opinion that nursing handover was helpful in enabling them to work with dying people in the acute hospital medical wards in which they worked. • The nurses identified two important functions of the nursing handover. The first was as a forum for discussing opinions and expressing feelings. The second was as a source of information on which to base their nursing decisions and actions. • It is proposed that some qualified nurses need help with the emotional labour of caring for dying people and that the nursing handover can assist in emotional adaptation, so enabling the management of troubling thoughts or feelings experienced in the course of caring for someone who is dying. • The role of the nursing handover in providing emotional support for nurses has been little studied and is a potentially useful area of future research, especially if it can be related to patient experiences and outcomes.

Background: Worldwide, most people with incurable cancer experience weight loss and anorexia. These symptoms can distress patients and their family caregivers. Interventions that take account of the relationship between patient and family caregiver may improve outcomes for both members of this dyad. Aim: To report an example of process for the development of a complex intervention, the Family Approach to Weight and Eating. Design: A mixed-methods process informed by the Medical Research Council’s guidelines for developing a complex intervention was used to develop a psychosocial intervention for patients with incurable cancer and weight loss or poor appetite and their family caregivers and then to test for its feasibility, acceptability and perceived benefit. Setting: South of England in 2010/2011. Participants: A purposive sample of patient–family caregiver dyads under the care of a specialist community palliative care team. Patient participants had incurable cancer and were cachectic or at risk of cachexia. Results: The patient–family caregiver dyads comprised seven female and nine male patients (age range 41–84 years) and their carers. The emergent form of the Family Approach to Weight and Eating was found to aid family talk about food, feelings and reciprocity, without adverse consequences. Of the dyads, 15 reported benefits of the Family Approach to Weight and Eating. Three patient participants spoke of the approach evoking sadness and three carers of guilt. Conclusion: The Family Approach to Weight and Eating should now be tested in a pilot trial and the effect on emotional health outcomes in patients and their family caregivers evaluated.

This paper describes the phenomenological methodology used to evaluate a hospice day care service from the perspective of twelve patients attending a UK hospice in June/July 1996. It briefly compares and contrasts a variety of phenomenological methodologies, then gives an account of the development and application of the phenomenological methodology used for the study.

Context: Cancer cachexia syndrome (CCS) is often accompanied by psychosocial consequences (PSC). To alleviate PSC, a systematic assessment method is required. Currently, few assessment tools are available (e.g., Functional Assessment of Anorexia/Cachexia Therapy). There is no systematic assessment tool that captures the PSC of CCS. Objectives: To develop a pilot item bank to assess the PSC of CCS. Methods: A total of 132 questions, generated from patient answers in a previous study, were reduced to 121 items by content analysis and evaluation by multidisciplinary experts (doctor, nutritionists, and nurses). In our two-step, cross-sectional study, patients, judged by staff to have PSC of CCS, were included, and the questions were randomly allocated to the patients. Questions were evaluated for understandability and triggering emotions, and patients were asked to provide a response using a four-point Likert scale. Subsequently, problematic questions were revised, reformulated, and retested. Results: A total of 20 patients with a variety of tumor types participated. Of the 121 questions, 31 had to be reformulated after Step 1 and were retested in Step 2, after which seven were again evaluated as not being perfectly comprehensible. In Step 1, 22 questions were found to trigger emotions, but no item required remodeling. Item performance using the Likert scale revealed no consistent floor or ceiling effects. Our final pilot question bank comprised 117 questions. Conclusion: The final item bank contains questions that are understood and accepted by the patients. This item bank now needs to be developed into a measurement tool that groups items into domains and can be used in future research studies.

There have been few qualitative investigations evaluating Mindfulness-Based Stress Reduction (MBSR) in breast cancer populations. The nested qualitative analysis reported here explores the acceptability and the perceived effect of MBSR. As part of a larger randomised controlled evaluative trial, 92 participants with stages 0 to III breast cancer completed a short proforma following week 8 of a MBSR programme conducted at The Haven, an integrated cancer support centre in London, UK in 2005–2006. Following thematic analysis, the most positive experiences from participants (n = 92) were reported to be; 1) being calmer, centred, at peace, connected and more confident; 2) the value of mindfulness practice; 3) being more aware; 4) coping with stress, anxiety and panic; 5) accepting things as they are, being less judgemental of myself and others; 6) improved communication and personal relationships and 7) making time and creating space for myself. All participants asked (n = 39) said that following MBSR training they had become more mindful. These understandings will be able to help shape the future teaching of MBSR in breast cancer.

Purpose To assess the effectiveness of mindfulness-based stress reduction (MBSR) for mood, breast- and endocrine-specific quality of life, and well-being after hospital treatment in women with stage 0 to III breast cancer. Patients and Methods A randomized, wait-listed, controlled trial was carried out in 229 women after surgery, chemotherapy, and radiotherapy for breast cancer. Patients were randomly assigned to the 8-week MBSR program or standard care. Profile of Mood States (POMS; primary outcome), Functional Assessment of Cancer Therapy–Breast (FACT-B), Functional Assessment of Cancer Therapy–Endocrine Symptoms (FACT-ES) scales and the WHO five-item well-being questionnaire (WHO-5) evaluated mood, quality of life, and well-being at weeks 0, 8, and 12. For each outcome measure, a repeated-measures analysis of variance model, which incorporated week 0 measurements as a covariate, was used to compare treatment groups at 8 and 12 weeks. Results There were statistically significant improvements in outcome in the experimental group compared with control group at both 8 and 12 weeks (except as indicated) for POMS total mood disturbance (and its subscales of anxiety, depression [8 weeks only], anger [12 weeks only], vigor, fatigue, and confusion [8 weeks only]), FACT-B, FACT-ES, (and Functional Assessment of Cancer Therapy subscales of physical, social [8 weeks only], emotional, and functional well-being), and WHO-5. Conclusion MSBR improved mood, breast- and endocrine-related quality of life, and well-being more effectively than standard care in women with stage 0 to III breast cancer, and these results persisted at three months. To our knowledge, this study provided novel evidence that MBSR can help alleviate long-term emotional and physical adverse effects of medical treatments, including endocrine treatments. MBSR is recommended to support survivors of breast cancer.

Weight loss and anorexia are commonly reported symptoms in people with advanced cancer. Little is known about patient experience of these phenomena, in particular whether they find them of concern. In this study, the prevalence of weight loss and eating-related concern was evaluated in patients with advanced cancer receiving specialist palliative homecare. The survey was a component of a larger study exploring the potential for helping patients and their families live with weight loss and change in eating habits. Patients were under the care of two specialist palliative homecare teams in the south of England in 2003. The questionnaire was distributed to the total eligible caseload of 233 patients with advanced cancer. The response rate was 85%. More than three-quarters of the 199 patients who returned the questionnaires reported weight loss (79%) and/or eating less (76%). Excluding the 32 patients (16%) who had sought help from a family member or friend to complete the questionnaires, more than half (52%) reported concern about weight loss and/or eating. Concern about weight loss or eating was found irrespective of proximity to death. Weight loss and eating-related concerns are commonly experienced by people with advanced cancer receiving palliative homecare. Further work is needed to establish if concerns are amenable to interventions that translate into meaningful outcomes for patients and their families.

This paper reports findings of an exploratory study of the eating habits of people with advanced cancer living in the south of England in 2003. The purpose of the study was to develop an understanding of why eating can be experienced as troubling and examine the potential for helping people live with the changes in eating habits that often accompany advanced cancer. Semistructured interviews were conducted with 30 patients, 23 lay caregivers, and 14 specialist nurses. The data were analyzed thematically. It was found that patients experienced eating-related concerns when the reality of eating differed from the expectations of eating. Patient response to concern ranged from acceptance to self-action. A subgroup of participants believed that they could have been helped by support for taking self-action. Eating-related concerns present nurses and other health care professionals with the challenge of supporting differing patient preferences for living with the symptom, which can include the expectation of support for self-action.

Background: A study was undertaken to explore the pathway to diagnosis among a group of patients recently diagnosed with lung cancer. Methods: A directed interview study triangulating patients’ accounts with hospital and GP records was performed with 22 men and women recently diagnosed with lung cancer at two cancer centres in the south and north of England. The main outcome measures were the symptoms leading up to a diagnosis of lung cancer and patient and GP responses before diagnosis. Results: Patients recalled having new symptoms for many months, typically over the year before their diagnosis, irrespective of their disease stage once diagnosed. Chest symptoms (cough, breathing changes, and pain in the chest) were common, as were systemic symptoms (fatigue/lethargy, weight loss and eating changes). Although symptoms were reported as being marked changes in health, these were not in the main (with the exception of haemoptysis) interpreted as serious by patients at the time and not acted on. Once the trigger for action occurred (the event that took patients to their GP or elsewhere in the healthcare system), events were relatively speedy and were faster for patients who presented via their GP than via other routes. Patients’ beliefs about health changes that may indicate lung cancer appeared to have played a part in delay in diagnosis. Conclusion: Further investigation of the factors influencing the timing of diagnosis in lung cancer is warranted since it appears that patients did not readily attend GP surgeries with symptoms. Insight into patients’ perspectives on their experience before diagnosis may help medical carers to recognise patients with lung cancer more easily so that they can refer them for diagnosis and treatment. Encouragement to present early with signs of lung cancer should be considered alongside other efforts to speed up diagnosis and treatment.

The problem of ‘delay’ in diagnosing cancer as a result of late presentation by individuals who have symptoms, or through doctor or hospital system failures, are currently the subject of close attention as part of broader initiatives to reduce deaths from cancer. However, in lung cancer there has been a generally held view that ‘late’ diagnosis is inevitable because of the biomedical difficulties in detecting the disease at an early stage. Data about events recalled prior to diagnosis from an interview study with 22 individuals recently diagnosed with operable (early stage) and inoperable (late stage) lung cancer are reported. Findings reveal that individuals, regardless of their disease stage, or their social background failed to recognise symptoms that they experienced over many months prior to their eventual diagnosis as serious and warranting medical attention. Symptoms, even when severe, were instead attributed to everyday causes and were not interpreted as indicative of ill-health. There was a reluctance to seek help for symptoms among some because they were unsure whether what they were experiencing was normal or not, and in one case because as a smoker, the individual felt ‘unworthy’ of medical care. This study suggests that previous assumptions that focus on individual or psychological factors in the processes of delay in cancer diagnosis need revisiting and the broader social influences that may affect the timing of diagnosis among people with lung cancer should be considered.

In the UK, policies on health recognise the importance of supporting healthcare professionals if they are to realise their potential for delivering quality services. Little is known about how nurses working in hospitals cope with caring for dying people and, hence how they might be best supported in this work. This paper reports a qualitative study informed by phenomenological philosophy, which developed a theory of how newly qualified nurses cope with caring for dying people in acute hospital medical wards. On the basis of the theory, interventions are proposed that could help support nurses in their work with dying people.

Fifty-four per cent of people who die in England and Wales do so in hospital. Evidence suggests that care delivered to dying people in hospital does not match up to the ideal of a good death. These studies have provided organizational and structural explanations of nurses' behaviour that support argument for change at the macro level, in order to improve the quality of care delivered to dying people. There has been little study of the perceptions of nurses working in acute medical settings in relation to their experience of caring for dying people. Therefore, there is little evidence on which to base supportive strategies at the level of individual nurses.In this study we set out to develop an understanding of care for dying people in hospital, from the perspective of newly qualified staff nurses in the UK. The purpose was to build a theory of how nurses might be helped to deliver quality care to dying people in hospital.This paper is based on an exploratory study underpinned by phenomenological philosophy. In-depth interviews were conducted with 28 newly qualified nurses, focusing on their experiences of caring for dying people on medical wards in two acute hospitals in England in 1999. The interview transcripts were interpreted using a phenomenological approach.The findings presented in this paper relate to commonalities found to underlie study participants' perceptions of their experiences. All the nurses' stories were found to be built around six essences - the personal ideal, the actual, the unknown, the alone, tension and anti-tension. These essences, and the relationships between them, were used to build a model of the experience of caring for dying people in hospital.This descriptive study of the experience of individual nurses does not examine the wider social context. It attempts to complement existing sociological theory of death and dying.The study revealed how a group of newly qualified nurses experienced caring for dying people. We theorize that the model developed has utility as a tool for gaining understanding of the experience of caring for dying people. It is assumed that nurses, through using this model to find explanations for their emotions and behaviours, may gain emotional support that might have a positive impact on the quality of care delivered to dying people in hospital.

This study explored the perceptions of 12 patients attending a day care unit in June/July 1996, with the purpose of finding out what was important to these people about their day care experiences. It used a phenomenological methodology derived from Paterson and Zderad’s Humanistic Nursing Theory. The patients described numerous aspects of the day care service that were important to them. All 12 people interviewed considered the service satisfactory, and a number considered it to be more than anyone could or should expect. Day care was found to help them feel comfortable, to feel of value and to feel less isolated. In addition, the participants were found to be living with cancer in two different ways. All 12 knew they had cancer and might be terminally ill. Yet some seemed to “tolerate” their life with cancer, whereas others saw it as requiring “adaptation”. The day care service was supporting both these styles of managing life with cancer. The interpretation of the findings suggests that the reason patients expressed such satisfaction with the service offered was because the care was humanistic. It responded to individual opinions, feelings and understandings of health and well-being, by giving people time and responding to their individual concerns. In this way, it was flexible enough to support people in managing their illness using their own preferred style.

Purpose Weight loss and eating problems are common in cancer and have a profound effect on quality of life. They are symptoms of cancer cachexia syndrome. This paper examines interdependency between advanced cancer patient and family carer experience of weight- and eating-related problems, leading to proposition of how weight- and eating-related distress might be alleviated in both patients and their family members. Methods The study was of cross-sectional design. Interpretive phenomenology informed the analytic process. Patient participants had advanced cancer and concern about weight and/or eating. Semi-structured interviews were conducted with 31 patient-spouse/partner dyads (62 interviews), which focused on weight loss and eating problems in the patient and how these had been managed. Results This study found change in weight and eating habits in advanced cancer to disrupt food connections. Food connects us with others physically by fuelling the body and sustaining physical activity and life, emotionally by communicating feelings about self and others, and socially by providing a reason for sharing time with others. The study found three dyadic responses to disruption in food connections; dual acceptance, dual resistance and mismatched resistance. They are of interest, because they can help discriminate between those patient-family carer dyads who might benefit from psychosocial interventions and those who will cope without such help. Conclusion The findings challenge clinicians and researchers to seek ways of aiding not only with concerns of the individual patients and carers, but also with interactions between distressed family members affected by symptoms of cancer cachexia syndrome.