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Purpose: The aim of this study was to report a systematic search and narrative review of the evidence base that can inform dietary advice for patients off treatment living with cancer cachexia syndrome (CCS).Methods: Searches were conducted in MEDLINE, EMBASE, PsycINFO and CINAHL databases for publications about diet and cancer patients off treatment with symptoms of CCS. The following limits were applied: English language, from September 1998 to September 2008 and adults. In addition, a hand search included the reference lists of papers identified. Seven hundred and eighteen abstracts were assessed against inclusion/exclusion criteria and 88 were selected for full text independent examination by two researchers. Information from 48 papers was extracted, quality assessed, thematically analyzed and presented as a narrative synthesis.Results: Two dominant perspectives emerged on what should be eaten by weight-losing cancer patients. The majority of authors advocated a nutrient-dense diet, facilitated by nutritional counselling. 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 range of physical and psychosocial objectives that they aim to achieve.Conclusion: A new model for the delivery of nutritional care may benefit cancer patients (off treatment) living with weight loss. The proposed model integrates the two identified perspectives to facilitate optimal food intake taking into account the patient's (1) disease symptoms and treatment side effects (2) emotional adaptation to illness and (3) social circumstances. Research is needed to establish which of these obstacles to eating can be changed for which patient groups to improve patient outcomes. [ABSTRACT FROM AUTHOR]

CONTEXT: 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). OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: A follow-on randomized controlled trial of MAWE is warranted but should be of a revised design. [ABSTRACT FROM AUTHOR]

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 wellbeing. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

1. 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. 2. This paper draws on data from a phenomenological study of 28 qualified diplomate nurses. 3. 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. 4. 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. 5. 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. 6. 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. [ABSTRACT FROM AUTHOR]

Objective: To give an overview of what is known about the nurse contribution to education in self-care by people with cancer cachexia and their family caregivers. Nurse-led patient education can help patients and their family caregivers to manage cancer symptoms, cancer treatments, and treatment side effects., Methods: This scoping review explored the extent to which nurse-led education has become part of the multimodal management of cancer cachexia. It is based on a systematic search of Medline, Embase, CINAHL, APA PsycINFO, and the Cochrane Library. Search limits were English language, date ranges from January 2015 to March 2023, and adults 18 years and older., Results: A total of 6370 titles were screened, 127 papers and conference abstracts were selected for full-text examination, and 9 publications were included in the review. The analysis found the nurses within the multidisciplinary cancer cachexia care team, like other healthcare professionals, do not have a shared understanding of cancer cachexia and its management. For nurses to be confident and competent in the provision of nurse-led cachexia education, they themselves need evidence-based education in cachexia care and how to tailor education according to cachexia stage, symptoms, emotional response, and social circumstance., Conclusions: Nurses with the knowledge and confidence to provide cancer cachexia education for their patients can potentially play an important role in the management of cancer cachexia and mitigation of cachexia-related problems., (© 2023 The Author(s).)

Patients with cancer cachexia frequently suffer from physical symptoms and psychological symptoms of illness, which can lead to emotional distress in patients and family caregivers. Although there is no standard care to manage cancer cachexia despite its high prevalence and negative impact on quality of life in patients and family caregivers, there is accumulating evidence showing the importance of holistic multimodal care for cancer cachexia. However, there is no agreement on the essential components of holistic multimodal care. Therefore, the aims of this review are to give an overview of what is known about the holistic multimodal care and to suggest the composition of a multidisciplinary team to achieve holistic interventions. Holistic multimodal care for cancer cachexia is defined as an approach that addresses physical health through medical, pharmacological, nutritional, and rehabilitative interventions as well as psychological, emotional, and social well-being issues according to the needs of patients and family caregivers. Moreover, an ideal multidisciplinary team is proposed to achieve holistic interventions based on patient- and family-centered care. However, the development of educational programs on cancer cachexia for both clinicians and patients and family caregivers is needed. Furthermore, measurements to assess the benefits of holistic multimodal care also need to be established., (© 2023 The Author(s).)

Purpose: Multimodal care for cancer cachexia is needed. This study examined factors associated with practicing multimodal cachexia care among physicians and nurses engaging in cancer care., Methods: This was a preplanned secondary analysis of a survey investigating clinicians' perspectives on cancer cachexia. Data of physicians and nurses were used. Data on knowledge, skills, and confidence in multimodal cachexia care were obtained. Nine items on practicing multimodal cachexia care were evaluated. Participants were divided into two groups as practicing multimodal cachexia care (above median value for the nine items) or not. Comparisons were made using the Mann-Whitney U test or chi-square test. Multiple regression analysis was performed to identify the factors of practicing the multimodal care., Results: Total of 233 physicians and 245 nurses were included. Significant differences were observed between the groups: female sex ( P = .025), palliative care versus oncology specialization ( P < .001), the number of clinical guidelines used ( P < .001), the number of symptoms used ( P = .005), training for cancer cachexia ( P = .008), knowledge on cancer cachexia ( P < .001), and confidence in cancer cachexia management ( P < .001). Palliative care specialization (partial regression coefficient [ B ] = 0.85; P < .001), the number of clinical guidelines used ( B = 0.44; P < .001), knowledge on cancer cachexia ( B , 0.94; P < .001), and confidence in cancer cachexia management ( B = 1.59; P < .001) were statistically significant in multiple regression analysis., Conclusion: Specialization in palliative care, specific knowledge, and confidence were associated with the practice of multimodal care for cancer cachexia.

Purpose of Review: To give an overview of what is known about the educational component of supportive care for people with cancer cachexia and their family caregivers., Recent Findings: The educational needs for self-care by people with cancer cachexia are largely unmet. There is potential for education to enable self-care that mitigates cachexia-related distress with benefit to quality of life and mitigates malnutrition/malnutrition risk with implications for treatment tolerance and outcomes. Theoretically informed approaches to cancer cachexia education for patients and their family members are needed if optimal methods for support of self-care are to be identified. The cancer workforce also needs education to have the confidence and knowledge to play a role in the cancer cachexia education of their patients., Summary: To address the educational needs of self-care in cachectic cancer patients and their caregivers, there is much work to do. Healthcare professionals need to know the best educational process and methods for cachexia for supporting quality of life and to facilitate improving cancer treatment outcomes including survival., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families., (© 2022 The Authors. CA: A Cancer Journal for Clinicians published by Wiley Periodicals LLC on behalf of American Cancer Society.)

Background: Eating-related distress (ERD) is one type of psychosocial distress among advanced cancer patients and family caregivers. Its alleviation is a key issue in palliative care; however, there is no validated tool for measuring ERD., Methods: The purpose of this study was to validate tools for evaluating ERD among patients and family caregivers. The study consisted of a development and validation/retest phase. In the development phase, we made preliminary questionnaires for patients and family caregivers. After face validity and content validity, we performed an exploratory factor analysis and discussed the final adoption of items. In the validation/retest phase, we examined factor validity with an exploratory factor analysis. We calculated Pearson's correlation coefficients between the questionnaire for patients, the Functional Assessment of Anorexia/Cachexia Therapy Anorexia Cachexia Subscale (FAACT ACS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Cachexia 24 (EORTC QLQ-CAX24) and Pearson's correlation coefficients between the questionnaire for family caregivers and the Caregiver Quality of Life Index-Cancer (CQOLC) for concurrent validity. We calculated Cronbach's alpha coefficients (Cronbach's alpha) and intraclass correlation coefficients (ICCs) for internal consistency and test-retest reliability. We performed the Mann-Whitney U test between the questionnaires and cancer cachexia based on criteria from the international consensus for known-group validity., Results: In the development phase, 162 pairs of patients and family caregivers were asked to participate, and 144 patients and 106 family caregivers responded. In the validation/retest phase, 333 pairs of patients and family caregivers were asked to participate, and 234 patients and 152 family caregivers responded. Overall, 183 patients and 112 family caregivers did the retest. Seven conceptual groups were extracted for the ERD among patients and family caregivers, respectively. Patient factors 1-7 correlated with FAACT ACS (r = -0.63, -0.43, -0.55, -0.40, -0.38, -0.54, -0.38, respectively) and EORTC QLQ-CAX24 (r = 0.58, 0.40, 0.60, 0.49, 0.38, 0.59, 0.42, respectively). Family factors 1-7 correlated with CQOLC (r = -0.34, -0.30, -0.37, -0.37, -0.46, -0.42, -0.40, respectively). The values of Cronbach's alpha and ICC of each factor and all factors of patients ranged from 0.84 to 0.96 and 0.67 to 0.83, respectively. Those of each factor and all factors of family caregivers ranged from 0.84 to 0.96 and 0.63 to 0.84, respectively. The cachexia group of patients had significantly higher scores than the non-cachexia group for each factor and all factors., Conclusions: Newly developed tools for measuring ERD experienced by advanced cancer patients and family caregivers have been validated., (© 2022 The Authors. Journal of Cachexia, Sarcopenia and Muscle published by John Wiley & Sons Ltd on behalf of Society on Sarcopenia, Cachexia and Wasting Disorders.)

Background: Holistic multimodal interventions have not been established for cancer cachexia. The beliefs and perceptions of health care professionals (HCPs) based on their experiences influence the interventions., Objectives: HCPs' knowledge, perceptions, and practices in cancer cachexia management were evaluated., Design/setting/subjects/measurements: A nationwide questionnaire survey was conducted that focused on the perspectives of HCPs on interventions in 451 designated cancer hospitals across Japan. Descriptive statistics were applied., Results: Among 2255 participants, 1320 responded (58.5%), and 1188 in 258 institutes were included in the analysis. The current international definition of cancer cachexia is not commonly known and recent clinical practice guidelines have not been widely adopted. More than 50% of participants considered ≥5% weight loss in six months and ECOG PS (Eastern Cooperative Oncology Group Performance Status) 2-4 to be cancer cachexia, whereas 50% answered that there was no relationship between life expectancy and cancer cachexia. Participants tended to consider it important to initiate nutritional and exercise interventions before cancer cachexia becomes apparent. The majority of participants recognized the importance of holistic multimodal interventions, particularly for the management of physical and psychological symptoms; however, only 20% reported that they educated patients and families. Furthermore, 33% of participants considered themselves to have provided patients and families with sufficient nutritional and exercise interventions and evidence-based information., Conclusion: The results reveal that HCPs are not regularly providing education and emotional support to patients and families suffering from cancer cachexia. The results also show the need for education for HCPs to enhance implementation of holistic multimodal interventions for cancer cachexia., Competing Interests: No competing financial interests exist., (© Koji Amano et al., 2022; Published by Mary Ann Liebert, Inc.)

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., (© 2021. The Author(s).)

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., Competing Interests: There are no conflicts of interest., (Copyright: © 2021 Ann & Joshua Medical Publishing Co. Ltd.)

Background: People living with dementia often experience crisis. Home treatment of crisis is an alternative to hospital admission that can have better outcomes. This systematic review is about people with dementia living at home and in crisis. It identifies modifiable factors in the crisis process that may facilitate crisis resolution., Methods: The protocol is registered on PROSPERO. A systematic search of MEDLINE, EMBASE, CINAHL, AHMED, PsycINFO, Cochrane Library and references of retrieved publications, identified empirical research in English language and date range January 2000 to February 2019. Two researchers independently screened abstracts, selected publications and extracted data using a framework based on published guidelines. This is a report of the analysis and narrative synthesis., Results: The search identified 2755 titles and abstracts, 76 were selected for full-text examination and 13 agreed for inclusion. The included studies evidence that: for a person with dementia, crisis is a process that begins with a problem judged to put them or others at risk of harm. It leads to decision and action to treat this risk, thus resolve the crisis. Such crisis can be predicted or unpredicted and progress quickly or slowly. Medical treatment, community resources and psychosocial support of personal resources, decision making, relationships and social networks, are all modifiable factors that can treat the risk of harm during crisis. Carers' and professionals' knowledge and skills in dementia care are likely to play a key role in crisis resolution in the home., Conclusion: There has been limited investigation of the process and management of crisis at home for people living with dementia. The results of this review provide a foundation for future research. There is no consensus on critical components of home treatment to facilitate crisis resolution. However, education in dementia care for carers and professionals is likely to prove essential to successful home treatment.

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., (Copyright © 2019 Elsevier B.V. All rights reserved.)

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

Context: Cachexia is commonly found in cancer patients and has profound consequences; yet there is only one questionnaire that examines the patient's perspective., Objective: To report a rigorously developed module for patient self-reported impact of cancer cachexia., Methods: Module development followed published guidelines. Patients from across the cancer cachexia trajectory were included. In Phase 1, health-related quality of life (HRQOL) issues were generated from a literature review and interviews with patients in four countries. The issues were revised based on patient and health care professional (HCP) input. In Phase 2, questionnaire items were formulated and translated into the languages required for Phase 3, the pilot phase, in which patients from eight countries scored the relevance and importance of each item, and provided qualitative feedback., Results: A total of 39 patients and 12 HCPs took part in Phase 1. The literature review produced 68 HRQOL issues, with 22 new issues arising from the patient interviews. After patient and HCP input, 44 issues were formulated into questionnaire items in Phase 2. One hundred ten patients took part in Phase 3. One item was reworded, and 20 items were deleted as a consequence of patient feedback., Conclusions: The QLQ-CAX24 is a cancer cachexia-specific questionnaire, comprising 24 items, for HRQOL assessment in clinical trials and practice. It contains five multi-item scales (food aversion, eating and weight-loss worry, eating difficulties, loss of control, and physical decline) and four single items., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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., (Copyright ©ERS 2016.)

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., Conclusion: Further work is needed to establish practice guidelines for the management of cancer in people with dementia. Copyright © 2016 John Wiley & Sons, Ltd., (Copyright © 2016 John Wiley & Sons, Ltd.)

Objectives: To 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., Methods: Standard 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., Results: 18 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., Conclusions: There 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., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

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 carers' and patients' 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: 8 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., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: 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., Objectives: Our primary objective was to identify and assess the effect of strategies designed to help healthcare professionals to recruit participants to research studies., Search Methods: 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., Selection Criteria: 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., Data Collection and Analysis: 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., Main Results: 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., Authors' Conclusions: 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., (Copyright © 2016 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)

Purpose: Weight loss and eating problems are common in cancer and have a profound effect on quality of life. They are symptoms of cancer cachexia syndrome. This paper examines interdependency between advanced cancer patient and family carer experience of weight- and eating-related problems, leading to proposition of how weight- and eating-related distress might be alleviated in both patients and their family members., Methods: The study was of cross-sectional design. Interpretive phenomenology informed the analytic process. Patient participants had advanced cancer and concern about weight and/or eating. Semi-structured interviews were conducted with 31 patient-spouse/partner dyads (62 interviews), which focused on weight loss and eating problems in the patient and how these had been managed., Results: This study found change in weight and eating habits in advanced cancer to disrupt food connections. Food connects us with others physically by fuelling the body and sustaining physical activity and life, emotionally by communicating feelings about self and others, and socially by providing a reason for sharing time with others. The study found three dyadic responses to disruption in food connections; dual acceptance, dual resistance and mismatched resistance. They are of interest, because they can help discriminate between those patient-family carer dyads who might benefit from psychosocial interventions and those who will cope without such help., Conclusion: The findings challenge clinicians and researchers to seek ways of aiding not only with concerns of the individual patients and carers, but also with interactions between distressed family members affected by symptoms of cancer cachexia syndrome., (Copyright © 2015 The Author. Published by Elsevier Ltd.. All rights reserved.)

Background: Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals., Aim: To identify quality of life issues that are relevant to carers of cancer patients with cachexia., Design: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines., Data Sources: PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included., Results: Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional's input, conflict with the patient and negative emotions., Conclusion: The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve., (© The Author(s) 2015.)

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., (Copyright © 2015 Elsevier Inc. All rights reserved.)

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., (© The Author(s) 2014.)

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 syndrome (CCS) is often accompanied by psychosocial consequences (PSC). To alleviate PSC, a systematic assessment method is required. Currently, few assessment tools are available (e.g., Functional Assessment of Anorexia/Cachexia Therapy). There is no systematic assessment tool that captures the PSC of CCS., Objectives: To develop a pilot item bank to assess the PSC of CCS., Methods: A total of 132 questions, generated from patient answers in a previous study, were reduced to 121 items by content analysis and evaluation by multidisciplinary experts (doctor, nutritionists, and nurses). In our two-step, cross-sectional study, patients, judged by staff to have PSC of CCS, were included, and the questions were randomly allocated to the patients. Questions were evaluated for understandability and triggering emotions, and patients were asked to provide a response using a four-point Likert scale. Subsequently, problematic questions were revised, reformulated, and retested., Results: A total of 20 patients with a variety of tumor types participated. Of the 121 questions, 31 had to be reformulated after Step 1 and were retested in Step 2, after which seven were again evaluated as not being perfectly comprehensible. In Step 1, 22 questions were found to trigger emotions, but no item required remodeling. Item performance using the Likert scale revealed no consistent floor or ceiling effects. Our final pilot question bank comprised 117 questions., Conclusion: The final item bank contains questions that are understood and accepted by the patients. This item bank now needs to be developed into a measurement tool that groups items into domains and can be used in future research studies., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Purpose: 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., Methods: 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., Results: 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., Conclusion: There is a pressing need for a well-designed HRQOL tool for use with this patient group in both clinical trials and clinical practice.

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 the 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., (Crown Copyright © 2013. Published by Elsevier Inc. All rights reserved.)

Background: International expert consensus is that psychosocial intervention is likely to help advanced cancer patients and their family carers affected by weight loss and poor appetite., Purpose: To investigate the potential for a psychosocial intervention, the Macmillan Approach to Weight and Eating (MAWE), to mitigate weight- and eating-related distress in carers of patients with advanced cancer., Method: A controlled before and after study was conducted with carers of advanced cancer patients living in the community in the South of England in 2006-7. It used mixed methods to compare carers exposed to MAWE (n=12) with a control group (n=14)., Results: Weight- and eating-related distress improved in carers exposed to MAWE. Qualitative analysis found that MAWE may help carers by providing information, reassurance, and support for self-management., Conclusion: This preliminary study of MAWE suggests that it provides benefits as a supportive intervention. Further testing is warranted using a more robust experimental design.

There have been few qualitative investigations evaluating Mindfulness-Based Stress Reduction (MBSR) in breast cancer populations. The nested qualitative analysis reported here explores the acceptability and the perceived effect of MBSR. As part of a larger randomised controlled evaluative trial, 92 participants with stages 0 to III breast cancer completed a short proforma following week 8 of a MBSR programme conducted at The Haven, an integrated cancer support centre in London, UK in 2005-2006. Following thematic analysis, the most positive experiences from participants (n = 92) were reported to be; 1) being calmer, centred, at peace, connected and more confident; 2) the value of mindfulness practice; 3) being more aware; 4) coping with stress, anxiety and panic; 5) accepting things as they are, being less judgemental of myself and others; 6) improved communication and personal relationships and 7) making time and creating space for myself. All participants asked (n = 39) said that following MBSR training they had become more mindful. These understandings will be able to help shape the future teaching of MBSR in breast cancer., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

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., (Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Purpose of Review: To discuss the psychosocial support of people affected by cancer anorexia, drawing on recent publications., Recent Findings: Recent studies describe the problem of distress in response to cancer anorexia. There are propositions of appropriate support and calls for the development of psychosocial interventions to relieve cachexia-related distress. Preliminary work is now testing these ideas., Summary: Psychosocial support for cancer anorexia is a new and promising field of study. The prevention or alleviation of the anorexia of cachexia would relieve much eating-related suffering experienced by patients and their families. However, whilst the scientific community works to achieve this goal there is another task to be addressed: to help people with cancer anorexia to adapt and live with the symptom. Despite accounts over many years of the distress caused by poor appetite, little attention has been paid to the potential for psychosocial support to aid self-management of the symptom. Emergent thinking is that psychosocial support for cancer anorexia can have benefit for both patients and their family members.

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.

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

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

Research shows that diploma level preparation has resulted in newly qualified nurses with clinical skill deficits (e.g. Macleod Clark et al. 1996, Carlisle et al. 1999). Part of the government's current plan to improve the quality of services delivered by the NHS is to address this problem through the introduction of a new nursing role; a role incorporating both clinical practice and teaching (Department of Health 1999). This paper draws data from a phenomenological study of 28 qualified diplomat nurses. It identifies their self-perceived skill deficits in relation of caring for dying people in acute hospital medical wards, and the ways that they believe that they could best be helped to overcome these deficits. On the basis of these findings, strategies are recommended that a practitioner-educator might adopt, with the intention of facilitating skill development in the care of dying people., (Copyright 2001 Harcourt Publishers Ltd.)

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

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