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BackgroundDespite rehabilitation being increasingly advocated for people living with incurable cancer, there is limited evidence supporting efficacy or component parts. The progressive decline in function and nutritional in this population would support an approach that targets these factors. This trial aimed to assess the feasibility of an exercise and nutrition based rehabilitation programme in people with incurable cancer.MethodsWe randomized community dwelling adults with incurable cancer to either a personalized exercise and nutrition based programme (experimental arm) or standard care (control arm) for 8 weeks. Endpoints included feasibility, quality of life, physical activity (step count), and body weight. Qualitative and health economic analyses were also included.ResultsForty-five patients were recruited (23 experimental arm, 22 control arm). There were 26 men (58%), and the median age was 78 years (IQR 69–84). At baseline, the median BMI was 26 kg/m2 (IQR: 22–29), and median weight loss in the previous 6 months was 5% (IQR: −12% to 0%). Adherence to the experimental arm was >80% in 16/21 (76%) patients. There was no statistically significant difference in the following between trial arms: step count − median % change from baseline to endpoint, per trial arm (experimental −18.5% [IQR: −61 to 65], control 5% [IQR: −32 to 50], P = 0.548); weight − median % change from baseline to endpoint, per trial arm (experimental 1%[IQR: −3 to 3], control −0.5% [IQR: −3 to 1], P = 0.184); overall quality of life − median % change from baseline to endpoint, per trial arm (experimental 0% [IQR: −20 to 19], control 0% [IQR: −23 to 33], P = 0.846). Qualitative findings observed themes of capability, opportunity, and motivation amongst patients in the experimental arm. The mean incremental cost of the experimental arm versus control was £-319.51 [CI −7593.53 to 6581.91], suggesting the experimental arm was less costly.ConclusionsAn exercise and nutritional rehabilitation intervention is feasible and has potential benefits for people with incurable cancer. A larger trial is now warranted to test the efficacy of this approach.

The supportive care of people with cancer cachexia is a rapidly evolving field. In the past decade, multimodal treatments have been developed and new multidisciplinary cachexia clinics have been established across the world. This scoping review examines the extent to which psychosocial support has become part of the multimodal management of cancer cachexia. The review draws on a systematic search of Medline, Embase, CINAHL, PsycINFO, and the Cochrane Library for publications about people who have cancer cachexia and receive multimodal interventions. Search limits were the English language, date range January 2013 to March 2021, and adults 18 years and older. The search found 19 papers about multimodal interventions for either cancer cachexia or its defining feature involuntary weight loss that included a psychosocial component. This review found three different ways a psychosocial component of a multimodal intervention can help patients: (1) enable adherence to multimodal therapies; (2) aid emotional adaptation and coping; and (3) treat comorbid anxiety and depression. Recognizing these three different functions of psychosocial support is important because they have different mechanisms of action. Behavioral change techniques are important for enabling adherence, education in coping methods is important to alleviate stress, and cognitive reframing for the treatment of anxiety and depression. The analysis reveals that multimodal interventions for cancer cachexia with a psychosocial component can either focus on physical health or have a more holistic focus. Holistic care is considered the best practice in cancer nursing. Thus multimodal interventions that can address not only physical health problems, but psychosocial issues are consistent with high-quality nursing care.

Aim: nutrition is associated with aetiology and impacts outcomes in colorectal cancer (CRC). This study aimed to explore nutritional symptoms and concerns of patients with CRC and CRC dietetic resource across the UK. Methods: Study 1 is a descriptive analysis of nutrition-related measures in the ColoRectal Wellbeing (CREW) study, a prospective 5-year longitudinal cohort study of a representative sample of 872 adults with non-metastatic CRC. Study 2 is a descriptive analysis of data collected using a freedom of information request to all UK trusts/boards on dietetic resources for CRC. Results: study 1 found that 31% of CREW participants wanted more diet and lifestyle advice. At 3 months post-surgery, 10% reported poor appetite. A fifth experienced weight loss and 16% had concerns regarding weight loss 9 months post-surgery. In study 2 just 3% of hospitals providing CRC services had a dedicated CRC dietitian (hepato-pancreato-biliary, 11.1%; head and neck cancer, 14.3%). There was no dietetic outpatient follow-up of CRC patients in 72% of hospitals. Conclusions: dietetic resource for patients with CRC is scarce even though weight loss, poor appetite and unmet needs are common and persist over time. Work is needed to embed nutritional care into the management of patients with CRC.

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.

IntroductionPatients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated.Methods and analysisA mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer.Ethics and disseminationEthical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.

Aim: to investigate self-management of dietary intake by colorectal cancer patients receiving chemotherapy. Methods: a questionnaire was administered to 92 patients with non-metastatic colorectal cancer receiving chemotherapy treatment at a UK cancer centre in 2018-19. A maximum variation sample of twenty patients who completed the questionnaire were interviewed. Results: more than three in five patients were at nutritional risk but fewer than one in five were concerned about dietary intake or weight. Self-management of diet and weight was inconsistent with achieving the nutritional intake recommended by clinical guidelines on nutrition in cancer.Conclusion: there is potential for psychoeducation to support change in self-management of nutritional risk, with implications for better treatment tolerance and outcomes including quality of life.

Purpose To detail social knowledge of prostate cancer risk amongst cultural groups. Prostate cancer is the most common cancer in men, and black men are at the highest risk. Despite this, black men are the least likely to be diagnosed early with prostate cancer. It is importance to understand why this is so that these men can receive early access to effective treatment and support. Methods A constructivist grounded theory methodology was used. Data were collected between December 2015 and October 2017; seventeen men were interviewed, and eighteen men took part in focus groups. Results There were differences in the way the men constructed their understanding of risks for prostate cancer. The social construction of prostate cancer risk knowledge was mediated by the way the men were socialised to understand and accept this risk. The Somali and African Caribbean men placed social importance on the healthy body, whereas the white working class men seemed to find social value through the unwell body. This research proposes the theory that social constructions of knowledge mediate the way men perceive and accept their risk for prostate cancer. Conclusion Understanding socialised knowledge of risk may mediate the acceptance of specific prostate cancer risks. This knowledge may help health providers and third sector organisations produce targeted health-related information. Health practitioners may also benefit from understanding how socially constructed ideas of the body could influence the way men respond to conversations about prostate cancer so that tailored and culturally appropriate support can be offered.

People receiving cancer treatment are at nutritional risk. Their eating problems can lead to malnutrition and weight loss. Involuntary weight loss is also a defining characteristic of tumor-induced cachexia. Weight loss is associated with poor tolerance of treatment, poor treatment outcomes, morbidity, and mortality. Support for self-management of nutritional risk may protect against malnutrition and be important in multimodal therapies to arrest the progression of cachexia. Nurses can help patients by supporting self-management of eating problems. This scoping review is about eating problems during cancer treatment. It considers patient experience and self-management of eating problems during cancer treatment for the proactive management of malnutrition and cachexia. It draws on a systematic search of Medline, CINAHL, PsycINFO, and the Cochrane Library for publications about people with cancer who have eating problems during treatment. Limits were English language; January 2000 to December 2017; adults. The search found studies about eating problems in patients treated with chemotherapy or radiotherapy for head-and-neck cancer, lung cancer, gastrointestinal cancer, breast cancer, testicular cancer, and ovarian cancer. Nutritional counseling can improve nutritional intake, quality of life, and weight. However, the patient perspective on self-management and how to motivate engagement in nutritional care is unexplored. There is a potential for reducing nutritional risk during cancer treatment using psychoeducation to support behavioral change, thus empower self-management of eating problems. Benefits are likely in subgroups of people receiving cancer treatment, such as those with head and neck, gastrointestinal, and lung cancers.

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.

Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a ‘good death’ that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

Advanced cancer patients with cachexia and their families can suffer from eating-related distress. This complex entity encompasses patients' struggle to nourish themselves, emotional and social consequences of their inability to maintain food intake, and profound disturbance in family relationships. With evidence-based nutritional care, as well as symptom management to enable food intake, cachexia can be mitigated to some degree. In addition, patients and families require psychosocial support and education to understand and cope with this condition. Only by taking an integrated approach can health care teams alleviate eating-related distress, improve quality of life (QOL), reduce interpersonal conflicts, and alter perceptions of nutritional neglect for patients and families. However, few studies have investigated eating-related distress among patients and families. The aim of this narrative review is to describe what is known about eating-related distress and the roles of integrated palliative, supportive, and nutritional care in improving QOL of patients and families.

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.

Objective Patients with comorbid cancer and dementia have poorer outcomes than those without dementia. We observe oncology teams managing patients with dementia and memory loss and explore these patients' needs and experiences of outpatient cancer services. Methods A single site investigation of case study design to examine practices in four clinics using multi‐methods of data collection: retrospective note review, observation, interviews, and recorded consultations. A framework analytic approach identifies themes within and across cases. Results Thirty‐three clinical encounters with patients with memory loss were observed. Ten consultations were audio‐recorded and 16 individuals interviewed (n = 6 patients‐carer dyads, n = 1 lone patient, and n = 5 staff). Medical records were reviewed for 338 cases. Cancer referrals did not document memory health, so clinicians rely on patient/carer disclosure to identify patients with memory problems. In practice, the problem often remains hidden. Treating teams who do become aware of memory difficulties are unsure how to support patients, but marked memory loss can limit treatment options and preclude radical intent. Carers are key facilitators of successful cancer consultations and management. Their support needs are largely unrecognized. Conclusions Training that educates cancer teams on how to identify and support individuals with memory problems before and during treatment and recognize the carer role may facilitate complex cancer care and help reduce inequalities of outcomes.

Objective The objective of the study is to report a systematic review of what is currently known about the experience of cancer treatment and cancer treatment in adults with dementia. Methods The analytic plan and inclusion/exclusion criteria were specified in advance of the search process in a protocol. Searches were conducted in MEDLINE, CINAHL, PsycINFO and the Cochrane Library for publications about people with cancer and a pre-existing dementia. Limits were English language; 2000 to 12/2015; adults; >18 years old. The search identified 5214 titles and abstracts that were assessed against eligibility criteria and 101 were selected for full-text examination by two researchers who agreed inclusion of nine papers, extracted data independently then conducted a content analysis and narrative synthesis. Results Nine studies conducted in four resource rich countries were included in the review. These studies evidence that when compared with other cancer patients, those with dementia are diagnosed at a later stage, receive less treatment, are more likely to experience complications from treatment and have poorer survival. The experience of supportive care and preferences of people with dementia receiving cancer services and cancer treatment have not been investigated. Research into how the cancer team manage the particular needs of people with dementia and their family members has been limited to one study that reported how a cancer team managed the particular needs of seven people with dementia.

UK cancer policy aims to improve the quality of cancer services and enhance the experience of people affected by cancer. A recognised barrier to improving services is healthcare professionals’ lack of insight into patients’ and carers’ experiences; this article reports on the process of integrating these into a cancer education programme for nursing students. The cancer academic team identified patients and carers to help co-produce the programme. Students had an opportunity to listen to patients’ and carers’ stories and to learn from – rather than about – patients. Small-group work enabled patients, carers and students to explore the cancer experience in a safe and supportive setting. Working collaboratively with people affected by cancer ensured that the focus was on their experience, placing it at the core of the cancer education programme.

Aim The aim of this paper is to report on the role of an action researcher in a study investigating the change process in a health service context where a new assessment clinic was developed to manage the excessive waiting list for that service. Background For effective organisational change in health, there is a suggestion that change agents need to be emotionally intelligent; recognising the emotional state of individuals, reconciling that with the organisational drivers and making an assessment of readiness for organisational change. Anxiety features throughout this literature and there is a suggestion that being aware of anxiety and managing anxiety is within the emotionally intelligent change agent's repertoire, but there is a gap in the literature that explains this relationship in detail. Methods Data were generated to investigate the discrete nature of the role of the action researcher during this organisational change that spanned two years, through three methods: participant observations in the field captured in field notes (n = 72); observations of team meetings that had been recorded and transcribed (n = 13); interviews with key informants pre- and postintervention (n = 14); a reflexive diary one document of 8920 words (n = 1). Findings The data illuminating the interaction between the action researcher and participants were synthesised into two broad themes: how the action researcher introduced anxiety into the system; how the action researcher facilitated the participants to tolerate change anxiety. Discussion/relevance to clinical practice The findings from this study can be applied in clinical practice where change in practice is planned. Part of the requirement of a change agent in the NHS might be to be sufficiently emotionally literate to understand anxiety in the participant system and manage it to effect change

Background Internationally there is a growing population of elderly people. Cancer and dementia are diseases primarily of old age. An increasing number of people will face the challenge of comorbid dementia and cancer. Patients with dementia are diagnosed with cancer at a later stage of disease, receive less treatment and have poor survival compared to patients without dementia. The reasons are unknown. In part, because there has been no research investigating how the cancer team manage the support needs of people with dementia. Method Our research was of case study design. Data was collected using ethnographic methods. Observation was of the clinical management of 33 people with dementia and/or memory problems in four clinics at a cancer centre. A sub-set of ten clinical consultations were recorded and seven patients were interviewed, six accompanied by a carer. This paper will report cross-case thematic analysis of findings relating to dementia carers. Results Clinicians rely on patient/carer disclosure to identify patients with memory problems, as memory health is not documented in cancer records. Carers facilitate communication between cancer clinician and patient. They typically elect not to disclose memory problems. This has implications for safe and effective treatment. The education and support needs of carers go unrecognised, with just one example in our data of a clinician talking with the carer about how to manage the behavioural and psychological symptoms of dementia if exacerbated by a new pain medication. Conclusion This is the first research to evidence dementia carers are hidden coworkers in the cancer team. They facilitate successful cancer management, yet their support needs are largely unrecognised. Training in dementia care is available to cancer clinicians. This should include advice on how to identify and support individuals with memory problems during treatment and recognise then respond to the needs of their carer.

Background Empowering people with dementia to be involved in research at all stages of the disease is, respectful of individuals, maintains personhood and is equitable. It is therefore consistent with best practice in dementia care. Research is important for improving dementia treatments, care and service delivery. However, involving people with dementia who lack capacity or who have fluctuating capacity in research is challenging and requires careful consideration to avoid potential harms. Methods This paper reports a novel and successful method for recruitment into two research studies of people with dementia. The first study investigated cancer services provided for people with dementia who received cancer treatment in 2014/2015. The second study investigated crisis intervention in the community for people with dementia and their family members in 2017. The coproduced approach has enabled people with dementia in primary and secondary care receiving services in their own homes, out-patient clinics and in hospitals to take part in research. Results This paper will discuss how the researchers: Devised method that accommodated the needs of people with dementia for obtaining formal written consent or support for participation from a Consultee, as required by the Mental Health Act 2005. Negotiated the challenges of ethical and other approvals. Developed training for research assistants in the assessment of mental capacity and recruitment of people with dementia. The presentation will include a flow diagram of the recruitment process. Other researchers should then be able to adopt or adapt the approach for studies involving people with dementia. Conclusions There are challenges to involving people with dementia in research, but they can be overcome. What our research teams have learnt has informed the recently launched ‘Research and impaired mental capacity in adults: guidance for researchers’ published by Healthcare Research Wales.1 Reference . https://www.healthandcareresearch.gov.wales/uploads/News/research_and_impaired_mental_capacity_in_adults-guidance_for_researchers.pdf

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?

Cancer cachexia is a complex syndrome. Its defining feature is involuntary weight loss, which arises, in part, because of muscle atrophy and is accompanied by functional decline. International expert consensus recommends that nutritional support and counselling is a component of multimodal therapy for cancer cachexia, as poor nutritional intake can contribute to progression of the syndrome. The present paper focuses on what is presently known about the nursing contribution to nutritional care in cancer cachexia. There is potential for nurses to play an important role. However, obstacles to this include lack of a robust evidence base to support their nutritional care practices and unmet need for education about nutrition in cancer. The nursing role's boundaries and the outcomes of nurse-delivered nutritional care in cancer cachexia are both uncertain and should be investigated.

Cancer in the geriatric population is a growing problem. Malnutrition is common in cancer. A number of factors increase the risk for malnutrition in older people with cancer, including chronic comorbid conditions and normal physiological changes of aging. Nurses have an important role in the nutritional support of older cancer patients. To contribute to the improvement of nutritional support of these patients, nurses need appropriate training to be able to identify risk for malnutrition and offer a range of interventions tailored to individual need. Factors to consider in tailoring interventions include disease status, cancer site, cancer treatment, comorbidity, physiological age, method of facilitating dietary change, and family support. This article identifies ways in which nurses can contribute to the nutritional support of older cancer patients and thus help mitigate the effects of malnutrition.

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.

The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs. A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis. Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide. Participants did not always want to know everything about the patient's illness, suggesting the importance of tailoring information to individual needs. Offering a range of different kinds of support directly to relatives may improve patient care and emotional well-being. Copyright © 2014 John Wiley & Sons, Ltd.

Background: Weight loss and cachexia are common, reduce tolerance of cancer treatment and the likelihood of response, and independently predict poor outcome. Methods: A group of experts met under the auspices of the European School of Oncology to review the literature and- on the basis of the limited evidence at present-make recommendations for malnutrition and cachexia management and future research. Conclusions: Our focus should move from end-stage wasting to supporting patients' nutritional and functional state throughout the increasingly complex and prolonged course of anti-cancer treatment. When inadequate nutrient intake predominates (malnutrition), this can be managed by conventional nutritional support. In the presence of systemic inflammation/ altered metabolism (cachexia), a multi-modal approach including novel therapeutic agents is required. For all patients, oncologists should consider three supportive care issues: ensuring sufficient energy and protein intake, maintaining physical activity to maintain muscle mass and (if present) reducing systemic inflammation. The results of phase II/III trials based on novel drug targets (e.g. cytokines, ghrelin receptor, androgen receptor, myostatin) are expected in the next 2 years. If effective therapies emerge, early detection of malnutrition and cachexia will be increasingly important in the hope that timely intervention can improve both patient-centered and oncology outcomes.

Background Cancer cachexia has impact on patients and their family members. Patients experience loss of weight often accompanied by anorexia and other debilitating symptoms that have clinical impact and impact everyday life. The importance of understanding this impact lies in (1) the alleviation of cachexia-related suffering and (2) its implications for treating cachexia. Review Two decades of exploratory investigation of the manifestations, meaning and management of cancer cachexia reveal emotional and social impacts for both patients and their carers. Patients can describe change in appearance and loss of physical strength often accompanied by change in eating habits (amount, type and pattern of food intake). The psychosocial effects can include loss of independence, sense of failure, sense of helplessness, conflict with family members over food, social isolation and thoughts of death. They are effects that can distress. Conversely, weight loss, especially early in its course and for those who are obese, can be perceived as beneficial, which inhibits self-management of diet and physical activity. Conclusion Models of the psychosocial effects of cancer cachexia have been developed, leading to, as yet unproven, propositions of how negative patient and family impacts can be addressed. This literature overlooks the potential importance of psychosocial intervention to emerging multimodal treatments for the multicausal syndrome. Psychosocial intervention in cachexia should be tested for potential to help people affected by cancer cachexia feel better but also for potential to make people better by aiding uptake and compliance with multimodal therapy.

Context: Cancer cachexia is debilitating and affects most patients with advanced cancer. Because treatment options are poor, the psychosocial effects of cancer cachexia always should be assessed and psychosocial support provided. Objectives: To review the existing evidence of psychosocial effects of cancer cachexia with the aim of identifying factors that might be modified to improve outcomes. Methods: We carried out a systematic literature search in MEDLINE and EMBASE. The search string included key words for the topics “advanced cancer,” “cancer cachexia,” and “psychosocial effects.” Publications were selected by two reviewers. The search was complemented by a hand search. Results: Nineteen studies were included. The available information revealed mechanisms leading to, various presentations of, and coping strategies for psychosocial effects of cancer cachexia in both patients and their carers. Not all those affected manage the effects of the condition constructively. A number of clinically important adverse reactions have been identified. The main causes for negative psychosocial effects are a lack of knowledge of the irreversible nature of cancer cachexia and unsuccessful attempts to increase body weight with altered patterns of nutritional intake. Depending on patients' and their carers' coping resources, psychosocial effects may escalate or decrease. Early identification of psychosocial effects creates the potential for psychosocial interventions that improve the quality of life of those affected. Our analysis engendered a broader conceptualization of psychosocial effects of cancer cachexia, leading to a number of suggestions for psychosocial interventions with the potential for providing relief. Conclusion: The concept of psychosocial effects in cancer cachexia has the potential to sensitize health care professionals to cachexia-related problems and inform their clinical management of the condition.

Background: Family carers play a significant role in managing pain and associated medicines for people with advanced cancer. Research indicates that carers often feel inadequately prepared for the tasks involved, which may impact on carer and patient emotional state as well as the achievement of optimal pain control. However, little is known about effective methods of supporting family carers with cancer pain medicines. Aims: To systematically identify and review studies of interventions to help carers manage medicines for pain in advanced cancer. To identify implications for practice and research.Method: A systematic literature search of databases (MEDLINE, CINAHL, PsycINFO and AMED) was carried out to identify studies of pain medication management interventions that involved family carers of patients with advanced cancer and reported specific outcomes for family carers. Patient pain outcomes were also sought. Studies were quality appraised; key aspects of study design, interventions and outcomes were compared and a narrative synthesis of findings developed.Results: Eight studies were included; all had significant methodological limitations. The majority reported improvements in family carer knowledge and/or self-efficacy for managing pain medicines; no effect on patient pain outcomes; and no adverse effects. It was not possible to discern any association between particular intervention characteristics and family carer outcomes. Conclusions: Current evidence is limited, but overall suggests face-to-face educational interventions supported by written and/or other resources have potential to improve carers’ knowledge and self-efficacy for pain management. Further research is needed to identify how best to help family carers manage pain medicines for patients with advanced cancer.

BACKGROUND: The prevalence of malnutrition for older adults (>65 years) in hospital and rehabilitation units has been reported as being as high as 60%; some older patients with good appetites do not receive sufficient nourishment because of inadequate feeding assistance. Mealtime assistance can therefore enhance nutritional intake, clinical outcomes and patient experience.\ud \ud OBJECTIVES: This mixed methods review sought to develop an aggregated synthesis of quantitative and qualitative data on assistance at mealtimes for older adults in hospital settings and rehabilitation units to determine current practices, what practices work, and the perceptions of patients, families, and healthcare professionals of mealtime assistance.\ud \ud INCLUSION CRITERIA:\ud \ud Types of participants: Participants included older adults (65 years and over) in hospital settings, including rehabilitation units.\ud \ud Types of intervention(s)/phenomena of interest: The review focused on interventions for mealtime assistance, observed mealtime assistance, or discussed experiences of mealtime assistance with patients, families and healthcare professionals.\ud \ud Types of studies: The review included qualitative, quantitative and mixed methods studies.\ud \ud Outcomes: The outcomes of interest were the effectiveness of mealtime assistance initiatives and experiences of assistance at mealtimes.\ud \ud SEARCH STRATEGY: The search strategy identified studies from seven databases published between 1998 and 2015.\ud \ud METHODOLOGICAL QUALITY: Methodological quality of studies was independently assessed by two reviewers using standardized Joanna Briggs Institute critical appraisal instruments.\ud \ud DATA EXTRACTION: Standardized Joanna Briggs Institute data extraction tools were used.\ud \ud DATA SYNTHESIS: Synthesis of the findings was reached through discussion. The results of quantitative studies could not be statistically pooled because of heterogeneity and are presented in narrative form. The results are presented as three aggregated mixed methods syntheses.\ud \ud RESULTS: A total of 21 publications (19 studies) were included: 11 quantitative, five qualitative and three mixed method studies. Two studies were conducted in rehabilitation units, and 17 in hospital wards. Eight qualitative studies (nine papers) considered extrinsic and intrinsic factors that influence mealtime support. Evidence for the effectiveness of interventions was limited to eight studies (nine papers); the remaining quantitative studies included two cross-sectional studies, three descriptive evaluations (four papers) and one observational/case study. The following are the aggregated mixed methods syntheses:\ud \ud * Mealtimes should be viewed as high priority, healthcare staff should limit other activities during mealtimes and allow older patients to eat uninterrupted, providing support where required.\ud \ud * Nursing staff, employed mealtime assistants, volunteers or relatives/visitors can help prepare the older patient for meals; this includes opening packages and cutting up food as well as physically feeding patients.\ud \ud * Social interaction at mealtimes for older patients is effective in increasing food, energy and protein intake, and should be encouraged.\ud \ud * Communication between all members of the multi-disciplinary team, staff and volunteers is essential.\ud \ud CONCLUSION: No firm conclusions can be drawn with respect to the most effective initiatives. Initiatives with merit include those that encourage social interaction, either through the use of a dining room, or employed staff or volunteers, relatives or visitors supporting the older patient during mealtimes. Volunteers value training and support and clarification of their roles and responsibilities.

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.

Identifying and approaching eligible participants for recruitment to research studies usually relies on healthcare professionals. This process is sometimes hampered by deliberate or inadvertent gatekeeping that can introduce bias into patient selection.Our primary objective was to identify and assess the effect of strategies designed to help healthcare professionals to recruit participants to research studies.We performed searches on 5 January 2015 in the following electronic databases: Cochrane Methodology Register, CENTRAL, MEDLINE, EMBASE, CINAHL, British Nursing Index, PsycINFO, ASSIA and Web of Science (SSCI, SCI-EXPANDED) from 1985 onwards. We checked the reference lists of all included studies and relevant review articles and did citation tracking through Web of Science for all included studies.We selected all studies that evaluated a strategy to identify and recruit participants for research via healthcare professionals and provided pre-post comparison data on recruitment rates.Two review authors independently screened search results for potential eligibility, read full papers, applied the selection criteria and extracted data. We calculated risk ratios for each study to indicate the effect of each strategy.Eleven studies met our eligibility criteria and all were at medium or high risk of bias. Only five studies gave the total number of participants (totalling 7372 participants). Three studies used a randomised design, with the others using pre-post comparisons. Several different strategies were investigated. Four studies examined the impact of additional visits or information for the study site, with no increases in recruitment demonstrated. Increased recruitment rates were reported in two studies that used a dedicated clinical recruiter, and five studies that introduced an automated alert system for identifying eligible participants. The studies were embedded into trials evaluating care in oncology mainly but also in emergency departments, diabetes and lower back pain.There is no strong evidence for any single strategy to help healthcare professionals to recruit participants in research studies. Additional visits or information did not appear to increase recruitment by healthcare professionals. The most promising strategies appear to be those with a dedicated resource (e.g. a clinical recruiter or automated alert system) for identifying suitable participants that reduced the demand on healthcare professionals, but these were assessed in studies at high risk of bias.L'identification et l'approche des participants éligibles pour le recrutement dans des études de recherche repose généralement sur les professionnels de la santé. Ce processus est parfois entravé par des barrières délibérées ou accidentelles pouvant entrainer des biais dans la sélection des patients.Notre principal objectif était d'identifier et d'évaluer les effets des stratégies conçues pour aider les professionnels de la santé à recruter des participants dans des études de recherche. STRATÉGIE DE RECHERCHE DOCUMENTAIRE: Nous avons effectué des recherches le 5 janvier 2015 dans les bases de données électroniques suivantes : le registre Cochrane Méthodologie, CENTRAL, MEDLINE, EMBASE, CINAHL, British Nursing Index, PsycINFO, ASSIA et Web of Science (SSCI, SCI‐EXPANDED) à partir de 1985. Nous avons examiné les références bibliographiques de toutes les études incluses et des articles de revue pertinents et nous avons suivi les références via Web of Science pour toutes les études incluses. CRITÈRES DE SÉLECTION: Nous avons sélectionné toutes les études ayant évalué une stratégie visant à identifier et à recruter des participants pour des recherches via des professionnels de la santé et ayant fourni des données de comparaison sur les taux de recrutement. RECUEIL ET ANALYSE DES DONNÉES: Deux auteurs de la revue ont indépendamment passé au crible les résultats des recherches pour évaluer l'éligibilité, lu les articles complets, appliqué les critères d'inclusion et extrait les données. Nous avons calculé les risques relatifs pour chaque étude pour déterminer l'effet de chaque stratégie. RÉSULTATS PRINCIPAUX: Onze études remplissaient nos critères d'éligibilité et celles‐ci étaient toutes à risque élevé ou modéré de biais. Seules cinq études ont indiqué le nombre total de participants (7372 participants au total). Trois études ont utilisé un plan d'étude randomisé, et les autres ont utilisé un plan de type avant/après. Plusieurs stratégies différentes ont été étudiées. Quatre études ont examiné l'impact des visites supplémentaires ou de l'offre d'informations supplémentaires aux sites des études ; aucune augmentation des taux de recrutement n'a été démontrée. Des augmentations des taux de recrutement ont été rapportées dans deux études ayant fait recours à une personne désignée s'occupant spécifiquement du recrutement, et dans cinq études ayant introduit un système d'alarme pour l'identification des participants éligibles. Les études étaient intégrées à des essais évaluant principalement des soins en oncologie mais également des services d'urgences, le diabète et les dorsalgies.Il n'existe pas de preuves solides pour appuyer une quelconque stratégie visant à aider les professionnels de la santé à recruter des participants dans des études de recherche. Des visites supplémentaires ou l'offre d'informations supplémentaires n'ont pas semblé augmenter le recrutement par les professionnels de la santé. Les stratégies les plus prometteuses semblent être celles faisant recours à une personne désignée (par exemple un recruteur pour essais cliniques ou un système d'alerte automatisé) s'occupant spécifiquement de l'identification des potentiels participants ayant réduit les pressions exercées sur les professionnels de la santé, mais celles‐ci ont été évaluées dans des études à risque élevé de biais.La identificación y el primer contacto con los participantes aptos para el reclutamiento en los estudios de investigación suele depender de los profesionales sanitarios. En ocasiones, este proceso se ve obstaculizado por un control deliberado o inadvertido que puede introducir sesgo en la selección de los pacientes.El objetivo principal fue identificar y evaluar el efecto de las estrategias diseñadas para ayudar a los profesionales sanitarios a reclutar participantes para los estudios de investigación. MÉTODOS DE BÚSQUEDA: El 5 de enero de 2015 se realizaron búsquedas en las siguientes bases de datos electrónicas: Registro del Grupo Cochrane de Metodología (Cochrane Methodology Register), CENTRAL, MEDLINE, EMBASE, CINAHL, British Nursing Index, PsycINFO, ASSIA y Web of Science (SSCI, SCI‐EXPANDED) desde 1985 en adelante. Se verificaron las listas de referencias de todos los estudios incluidos y los artículos de revisión pertinentes y se realizó un rastreo de citas a través de Web of Science para todos los estudios incluidos. CRITERIOS DE SELECCIÓN: Se seleccionaron todos los estudios que evaluaron una estrategia para identificar y reclutar participantes para estudios de investigación a través de profesionales sanitarios y proporcionaron datos de comparación antes y después sobre las tasas de reclutamiento. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Dos autores de la revisión de forma independiente examinaron los resultados de la búsqueda para determinar la posible elegibilidad, leyeron los artículos completos, aplicaron los criterios de selección y extrajeron los datos. Se calcularon las razones de riesgos de cada estudio para indicar el efecto de cada estrategia.Once estudios cumplieron los criterios de elegibilidad y todos tuvieron riesgo de sesgo medio o alto. Solo cinco estudios proporcionaron el número total de participantes (en total 7372 participantes). Tres estudios utilizaron un diseño aleatorizado y los demás utilizaron comparaciones antes y después. Se investigaron varias estrategias diferentes. Cuatro estudios examinaron la repercusión de las visitas o la información adicionales para el centro de estudio, sin que se demostrara un aumento del reclutamiento. Se informó un aumento de las tasas de reclutamiento en dos estudios que utilizaron un reclutador clínico especializado, y en cinco estudios que introdujeron un sistema de alerta automatizado para identificar a los participantes elegibles. Los estudios se integraron en ensayos que evaluaron principalmente la atención en oncología, pero también en servicios de urgencias, diabetes y lumbalgia.No hay evidencia sólida de que una sola estrategia ayude a los profesionales sanitarios a reclutar participantes en los estudios de investigación. Las visitas o la información adicionales no parecieron aumentar el reclutamiento por parte de los profesionales sanitarios. Las estrategias más prometedoras parecen ser las que cuentan con un recurso dedicado (p.ej., un reclutador clínico o un sistema de alerta automatizado) para identificar a los participantes adecuados y reducir la demanda de profesionales sanitarios, pero se evaluaron en estudios con alto riesgo de sesgo.پیشینه: شناسایی و انتخاب شرکت‌کنندگان واجد شرایط برای ورود در مطالعات تحقیقاتی، معمولا متکی است بر نظر متخصصان مراقبت سلامت. این فرآیند گاهی در اثر کنترل عمدی یا غیر‐عمدی که می‌تواند باعث سوگیری (bias) در انتخاب بیمار شود، مختل می‌شود. اهداف: هدف اصلی ما، شناسایی و ارزیابی تاثیر استراتژی‌های طراحی‌شده برای کمک به متخصصان مراقبت سلامت در جذب شرکت‌کنندگان در مطالعات پژوهشی بود. روش‌های جست‌وجو: جست‌وجوهای خود را در 5 ژانویه 2015 در بانک‌های اطلاعاتی الکترونیکی زیر انجام دادیم: پایگاه ثبت متدولوژی در کاکرین (Cochrane Methodology Register)؛ CENTRAL؛ MEDLINE؛ EMBASE؛ CINAHL؛ British Nursing Index؛ PsycINFO؛ ASSIA و (Web of Science (SSCI, SCI‐EXPANDED از 1985 به بعد. همچنین فهرست منابع تمام مطالعات وارد شده و مقالات مطالعات مروری مرتبط را بررسی کرده و برای همه مطالعات وارد شده ردیابی استنادات را از طریق Web of Science انجام دادیم. معیارهای انتخاب: تمام مطالعاتی را انتخاب کردیم که به بررسی یک استراتژی برای شناسایی و جذب شرکت‌کنندگان در پژوهش از طریق متخصصان مراقبت سلامت پرداخته و داده‌های مربوط به مقایسه قبل و بعد را درباره نرخ جذب شرکت‌کنندگان فراهم کردند. گردآوری و تجزیه‌وتحلیل داده‌ها: دو نویسنده مرور به‌طور مستقل از هم نتایج جست‌وجو را از نظر واجد شرایط بودن بالقوه غربالگری کرده، متن کامل مقالات را خوانده، معیارهای انتخاب را اعمال کرده و داده‌ها را استخراج کردند. به منظور نشان دادن تاثیر هر استراتژی، خطر نسبی (RR) را برای هر مطالعه محاسبه کردیم. نتایج اصلی: یازده مطالعه معیارهای ورود را داشته و همگی در معرض خطر سوگیری بالا یا متوسط قرار داشتند. فقط پنج مطالعه، تعداد کل شرکت‌کنندگان خود را اعلام کردند (در مجموع 7372 شرکت‌کننده). سه مطالعه از طراحی تصادفی‌سازی، و بقیه از مقایسه‌های قبل‐بعد استفاده کردند. چندین استراتژی متفاوت بررسی شدند. چهار مطالعه تاثیر ویزیت‌ها یا اطلاعات بیشتر را در مورد محل مطالعه بررسی کردند، اما هیچ افزایشی در میزان جذب شرکت‌کنندگان مشاهده نشد. در دو مطالعه که از همکاران بالینی اختصاصی و در پنج مطالعه که از سیستم هشداردهنده خودکار برای شناسایی شرکت‌کنندگان واجد شرایط استفاده شد، افزایش در میزان جذب شرکت‌کنندگان به چشم خورد. مطالعات در کارآزمایی‌هایی تعبیه شدند که عمدتا به ارزیابی مراقبت در انکولوژی پرداختند، اما تعدادی نیز مربوط به بخش‌های اورژانس، دیابت و کمردرد بودند. نتیجه‌گیری‌های نویسندگان: شواهد قوی برای یک استراتژی واحد وجود ندارد که به متخصصان مراقبت سلامت در جذب شرکت‌کنندگان در مطالعات تحقیقاتی کمک کند. به نظر نمی‌رسید که ویزیت‌ها یا اطلاعات بیشتر، باعث افزایش جذب شرکت‌کنندگان توسط متخصصان مراقبت سلامت شوند. همچنین به نظر می‌رسید که امیدوارکننده‌ترین استراتژی‌ها مربوط به راهبردهایی با منبع اختصاصی (به‌عنوان مثال استفاده از همکاران بالینی یا سیستم هشدار خودکار) برای شناسایی مناسب شرکت‌کنندگان بود که تقاضا را برای متخصصان مراقبت سلامت کاهش داد، اما این موضوع در مطالعاتی با خطر بالای سوگیری ارزیابی شدند.

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.

Background: Up to 80% of people with cancer experience involuntary weight loss (1,2). This symptom of cancer cachexia syndrome (CCS) is associated with morbidity and mortality. However, feeding has little effect on weight and survival. There is no current consensus on appropriate diet for people living with CCS. Purpose: To report a systematic review of the evidence base that can inform dietary advice for patients living with CCS. Methods: Searches were conducted of MEDLINE, EMBASE, PsycINFO and CINAHL databases and reference lists, for publications about diet and cancer patients off treatment with symptoms of CCS. Limits were English language; 1998 to 9/2008; adults. 718 abstracts were assessed against nclusion/exclusion criteria and 90 were selected for full-text independent examination by two researchers. Information relevant to the review question was extracted, quality assessed, thematically analyzed and presented as a narrative description. Results: Sixty publications were included in the review. Two dominant perspectives emerged on what should be eaten by cancer patients living with involuntary weight loss. The majority of authors advocated a nutrition dense diet, achieved by nutritional counselling to i) educate on fortification of foods and ii) to advise frequent feeding. The alternative approach was to advise the patient to ‘eat what they want’. There is little robust evidence to justify either approach as able to deliver on the objectives they aim to achieve. Research is needed to establish which sub-groups of weight losing cancer patients can benefit from nutritional support. Conclusion: Feeding may not be futile if combined with other interventions and if evaluated against outcomes such as distress. A new model for the assessment and delivery of nutritional care may help patients living with CCS to optimize nutritional intake within the confines of their i/ disease process and treatment ii/ beliefs about food iii/ social resources iv/ coping approach.

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.

Objective. To conduct a review of the literature on frequency and characteristics of emergency hospital admissions of older people for ill-defined conditions. Background. Emergency hospital admissions for ill-defined conditions are increasing for older people. Despite concern about this trend little is known about the frequency or characteristics of such admissions in emergency medical settings. Method. Relevant papers were identified by searching Medline, Cinahl, Web of Science and other databases. Papers that met inclusion criteria were selected. A descriptive analysis approach was taken. Results. Eighteen studies met the inclusion criteria for the review, all descriptive, survey or cohort studies. None directly investigated the patient group. Some relevant data were available, particularly in relation to frequency of admissions for ill-defined conditions. Conclusions. There is a paucity of research on the patient group, but the evidence available suggests the incidence of these admissions is high in emergency settings and in many countries. Future research on incidence in specific settings, appropriateness of admissions and patient characteristics is urgently required. Relevance to clinical practice. As the population ages increased numbers of older people will be admitted to hospital for ill-defined conditions. Nursing interventions may contribute to future management of these patients.

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.

Background. 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. Aim. 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. Methods. 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. Findings. 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. Limitations. 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. Conclusion. 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.

The dominant professional understanding of good death is death where symptoms are controlled, the inevitability of death has been accepted and preparations have been made leading to peace for all involved. It seems surprising, in a pluralistic society, that there might be such a clear common understanding of good death. This study looks at the understandings of good death voiced by 28 staff nurses who were interviewed about their experiences of caring for dying people in hospital. The findings suggest that a nurse’S understanding of good death had elements that were shared with her colleagues, but also that there was a personal understandings of a good death. The concept of good death is perhaps a reduction that leads to an incorrect assumption of a shared understanding of the acceptable way to care for a dying person. The concept of ‘personally ideal death’ is proposed as a refinement of good death that recognises that the beliefs and values of each individual influences what they understand to be acceptable death.

• 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.

ObjectivesTo develop a model of the impact of cancer cachexia on patients by identifying the relevant health-related quality-of-life (HRQOL) issues, and to use the model to identify opportunities for intervention.MethodsStandard systematic review methods were followed to identify papers which included direct quotes from cancer patients with cachexia or problems with eating or weight loss. Following thematic synthesis methodology, the quotes were coded, and themes and metathemes were extracted. The metathemes were used to develop a model of the patient's experience of cachexia.Results18 relevant papers were identified which, in total, contained interviews with more than 250 patients. 226 patient quotes were extracted from the papers and 171 codes. 26 themes and 8 metathemes were formulated. The model developed from the metathemes demonstrated a direct link between eating and food problems and negative emotions and also a link mediated by the associated physical decline. These links provide opportunities for interventions.ConclusionsThere are a vast number of HRQOL issues associated with cancer cachexia as identified from patients’ own words. The model generated from these issues indicates that relationships, coping and knowledge of the condition are important components of new psychosocial interventions.

Assessing the health-related quality of life (HRQOL) of cancer patients with cachexia is particularly important because treatments for cachexia are currently aimed at palliation and treatment efficacy must be measured in ways other than survival. The aim of this systematic review was to evaluate HRQOL assessment in cancer patients with cachexia.Using guidance from the Centre for Reviews and Dissemination, relevant databases were searched from January 1980 to January 2012 with terms relating to cancer, cachexia and HRQOL for papers including adult cancer patients with cachexia or documented weight loss at baseline.We found one cachexia-specific instrument, the Functional Assessment of Anorexia/Cachexia Therapy, but the tool has not been fully validated, does not cover all the relevant domains and the consensus-based standards for the selection of health status measurement instruments checklist highlighted a number of weaknesses in the methodological quality of the validation study. Sixty-seven studies assessed HRQOL in cachectic or weight-losing cancer patients. Most used generic cancer HRQOL instruments, limiting the amount of useful information they provide. A modified version of the Efficace minimum data checklist demonstrated that the quality of reporting on HRQOL tool use was inadequate in many of the studies. A negative relationship between HRQOL and weight loss was found in 23 of the 27 studies which directly examined this.There is a pressing need for a well-designed HRQOL tool for use with this patient group in both clinical trials and clinical practice.

Introduction Cancer cachexia has a negative impact on the quality of life (QOL) of patients and their informal caregivers but there are few psychoeducational interventions to address this. Aim To develop a brief supportive group-based intervention for patients with cancer cachexia and their carers Methods Workshop development followed the Coventry Intervention Development Process.1 Reasons why unintentional weight loss is difficult for patients and carers were mapped from interviews with 5 patients, 5 carers and 5 health care professionals (HCPs). A summary map was supplemented with data from systematic reviews of the patient and carer literature and by previously conducted interviews with patients and HCPs about the effect cancer cachexia has on QOL. Project advisory panel members rated the importance and changeability of each reason in the context of a workshop. The highest scoring reasons were grouped to form intervention targets. Reviews of the literature informed the information provided to address the targets and the methods used to do this. Results Underpinning the intervention is the Integrated Theory of Health Behaviour.2 The workshop has three intervention targets: providing information about eating well with cancer, addressing conflict and addressing negative emotions. Activities were devised to inform how cancer can cause unintentional weight loss, what to eat, strategies to maximise intake and conflict self-management. The underlying assumption is that negative emotions will be alleviated by providing clear information and advice. Conclusion We have developed a workshop to educate, aid coping and provide relationship support for patients with cancer cachexia and unintentional weight loss. References Martin F, Turner A, Bourne C, Batehup L. Development and qualitative evaluation of a self-management workshop for testicular cancer survivor-initiated follow-Up. Oncol Nurs Forum 2013;40:E14–E23 Ryan P. Integrated theory of health behavior change: background and intervention development. Clinl Nurse Spec 2009;23:161–170