Search

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.

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.

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

Our primary objective is to identify and assess the effect of strategies designed to improve the recruitment of participants to research studies by healthcare professionals.

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

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

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

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.

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

Involuntary weight loss and anorexia are symptoms of cancer cachexia syndrome (CCS). The syndrome causes at least 20% of deaths in people with cancer [1]. Furthermore, weight loss and malnutrition are associated with poorer treatment tolerance and outcomes [2], and poorer quality of life [3]. The challenge for clinicians is to know how best to manage the symptoms of weight loss and anorexia for optimal patient outcomes. The aim of this article is to examine critically the management of weight loss and anorexia in people with CCS. It will draw on evidence collated from the Macmillan Weight and Eating Studies, to justify a new approach that complements current pharmacological and nutritional management. Implications for clinical practice are discussed.

User involvement in health research has increased in influence in recent years. (The definition of 'user' is contentious. The term does not solely include patients and their carers, but may also include members of the general public, potential patients and public, community and voluntary organizations and health professionals. This paper uses this broader definition of the term.) Involving users in research activity inevitably challenges the traditional autonomy of expert clinicians or academics in the research process. Consequently, attitudes to user involvement are typically polarized, either perceiving such involvement as a universal panacea or as a malevolent force that jeopardizes research practice. This paper moves beyond simplistic characterizations of user involvement to consider the benefits of engaging users in research and reflects on commonly asserted criticisms of such activity. Findings from a recently completed research prioritization exercise, the Macmillan Listening Study, will be cited to justify the need to involve users in research [1].

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.

Aim The study ‘Listening to the Views of People Affected by Cancer About Cancer Research’ is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper. Design The study adopts a ‘participatory research’ approach entailing the formation of a ‘reference group’ and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching ‘hard to reach’ representatives directly through community groups and participating study sites. Findings Experiences from this study illustrate that a ‘participatory research’ approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research. Conclusions ‘Participatory research’ offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.

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

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

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

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

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

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.

Background In the UK, a third of older hospital patients are malnourished. Malnutrition is associated with staying in hospital longer, increased morbidity and mortality, especially for those with chronic conditions. Mealtime assistance may be important to improve nutritional intake, clinical outcomes and patient experience. Two previous quantitative systematic reviews have been undertaken. One explored the use of volunteers and the other feeding assistance in hospitals and care-homes. Aims We are conducting the first mixed method systematic review about the provision of assistance at mealtimes for older adults on hospital wards to ▸i) determine the effectiveness of interventions ▸ii) explore the experiences of older adults and those involved with their care Methods The design is informed by methods developed by the Evidence for Policy and Practice Information Centre. This ‘mixed-methods’ triangulation approach combines data from i) effectiveness studies, ii) studies which obtain the views of participants and iii) current guidelines and policy. We have conducted a search of electronic databases (CINAHL, MEDLINE, BNI, Cochrane Library, EMBASE, PsychINFO, Open-Grey). Limits were English language; 1996 to present; adults. Abstracts have been assessed against inclusion/exclusion criteria by two researchers to select full-text for quality assessment and data extraction. The key elements of best practice will be extracted from current guidelines and policy documents. This will be used to derive a framework to guide analysis and interpretation of the evidence. Results The findings will be presented as a conceptual map of initiatives for improving the provision of assistance at mealtimes for older adults on hospital wards. We will also present propositions of what might be most effective in assisting oral mealtime nutritional intake and the implications. Conclusion We are conducting a systematic evaluation of literature to provide recommendations for the supportive nutritional care of older malnourished chronically ill people in hospital.

Background Cancer accounts for 1 in 4 deaths in the UK. A majority of people with advanced cancer will experience pain and family carers play an important role in managing pain medication at home. There is evidence carers need support with this, yet no research in the UK has developed and tested theory-driven interventions to help them manage pain medicines. We are conducting a Phase I-II feasibility study (as defined by the Medical Research Council guidelines for developing a complex intervention) to develop a new intervention: Cancer Carer Medicines Management (CCMM). Aim To summarise the development of CCMM, outlining the process of intervention development. Method A staged multi-method approach was used to obtain current evidence to inform CCMM's development: a systematic literature review of interventions for carer end of life medicines management; a scoping exercise concerning practice and theoretical contexts; interviews and user involvement group consultations with patients, carers, and health professionals with palliative care experience. This information informed two workshops which used participatory action research processes to design and develop an intervention which will be further refined through a consultative review process. Results To date we have found that this staged approach is appropriate and successful in enabling an evidence based intervention to be designed collaboratively. This also provides a means by which the clinical applicability of the intervention can be refined as it develops. Conclusions Refining this intervention as it develops will ensure that it reaches the feasibility trial stage with a robust grounding in carer experience, clinical practice and research evidence. In turn, the intervention will have the potential to enhance the practice of nurses in the community to meet carers' needs in pain medication management.

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.

Introduction Seventy-onepercent of people with cancer experience pain at the end of life (Teunissen et al 2007). It is well established that family carers play a significant role in managing pain medication. Our scoping exercise of international literature repeatedly found that family carers lack information and confidence, with some holding beliefs that pain cannot be controlled and concerns about medication becoming addictive. Carers9 roles have been neglected, with few interventions concerning pain management focusing specifically on carers, and a particular lack of UK research. Aims and Methods A Phase I-II feasibility study, funded by Dimbleby Marie Curie, is being conducted (2013–2015) to develop a new Cancer Carer Medicines Management intervention and to test its feasibility, acceptability and efficacy to improve carers9 knowledge, beliefs, skills and self-efficacy for pain medicines management, decrease carer strain and improve mood state. This will be achieved through: a rapid appraisal of research on interventions for carer management of end of life pain medicines; development and refinement of the intervention through user collaboration; and a feasibility trial involving nurses and carers in two sites, to inform a follow-on randomised control trial. Results Phase I will produce an educational intervention for delivery by palliative care nurses with family carers. Phase II will evaluate intervention impact on carer outcomes using validated questionnaires measuring carer pain medication knowledge, beliefs and skills; carer strain, self-efficacy and mood state. Secondary outcomes from validated questionnaires and interviews will include perceptions of patient pain, burden of the intervention, and factors inhibiting or facilitating intervention use.

Background Weight loss and anorexia are symptoms of cancer cachexia syndrome. They are experienced by up to 80% of patients with advanced cancer and can be distressing for both patients and their family members. A Post Doctoral Fellowship funded by Macmillan Cancer Support (2008–11) has enabled the development of the first psycho-educational family intervention for cachexia-related problems: the Family Approach to Weight loss and Eating (FAWE). Aim To report a Phase I proof of concept study of FAWE, with scope as defined by the Medical Research Council9s guidelines for developing a complex intervention. Methods The study was a mixed-methods investigation of the acceptability and feasibility of FAWE, including observation of its benefits and potential harms. The study protocol was completed by 16/20 purposively selected patient-family carer community-dwelling dyads in the South of England in 2010/11. Research interviews, which included the FAWE intervention, were of 30–135 min duration (median 72 min) and conducted in the dyads9 homes. A User Involvement Group (consumers, dietitians, clinical psychologists, nurses specialists, family therapists and academics) were engaged across the course of the study, so that expert opinion informed data analysis and refinement of the FAWE intervention. Results The patient-family carer dyads comprised seven female and nine male patients (age range 41–84 years) and their carers. The techniques used in the three step FAWE intervention were observed to facilitate the intended talk, without apparent adverse consequences. Patient-family carer dyads were found accepting of and to express satisfaction with a nurse delivered intervention that provides both information about eating well with cancer cachexia and that aids perspective taking, talk about food and feelings and talk about how family members help each other with cachexia-related problems. Conclusion FAWE should now be tested in a pilot trial for effect on emotional health outcomes in patients and their family carers.

This is a book for researchers. I love it, but I'm a professional nurse-researcher! The book is an anthology. It is about putting research methodology and method into practice. Each chapter has a different author who presents an issue in their particular area of research expertise. Typically, the author explores the issue by drawing on examples of how it has been problematic in their own research and how they have found a pragmatic solution. For example, Chapter 6: Narrative Research, is written by four narrative researchers; Molly Andrews; Shelley Day Sclater; Corinne Squire; and Maria Tamboukou. Although they have worked closely together for years, they could not reach a consensus view on narrative research for the purpose of writing the chapter. They illustrate their lack of consensus by each presenting their own research story. This demonstrates that the many forms of narrative research can all generate useful and relevant insights. The book is full of authoritative voices from the world of qualitative research. It has utility for research students wanting to familiarise themselves with issues faced by practicing researchers. I can envisage it being referenced in many nursing doctoral theses in the future. It is also useful for people like me, who have to find solutions to these authors' challenges in my everyday working life as a nurse-researcher. I learned a lot from reading about how the contributors practice their craft. I found this textbook a really engaging read, although a little too big and heavy to carry around in a handbag.

The book is about solution focused brief therapy (SFBT): a talking intervention intended to support patients in finding their own solutions to problems. It is written for practitioners, including nurses. The author is a speech and language (SLT) therapist in the United Kingdom. The majority of examples of delivering SFBT are taken from her own practice and are persuasive in illustrating how it can complement traditional SLT interventions for speech problems. The book begins with an account of SFBT, which draws on sources written by the pioneers of the therapy. The titles of chapters 2 and 3 imply that they explore the application of the intervention in acute and home care settings, respectively. These chapters do give examples of using SFBT in acute and home care settings, but also include other interesting but tangential information. For example, chapter 2 'Clients in the acute setting', includes a section about training students. Chapters 4 and 5 are the most valuable. These chapters provide transcripts of therapeutic encounters between the author and clients. The transcripts are supported by a description of the SFBT techniques illustrated through the dialogue and how these were therapeutic. The final chapters look at the use of SFBT with groups, as opposed to individuals. Throughout the book, a limitation is its signposting. I read from beginning to end, then I tried to return to those topics that interested me most. This book is difficult to navigate. Traditional health care provides solutions for clients' problems. Solution focused therapy takes a different approach. It is based on the assumption that the client has the solution to their problem, but needs help to discover it. The emphasis is on empowerment. Integrating this approach with traditional service delivery presents many challenges. These challenges include a cultural shift in the understanding of what a healthcare professional does. Integrating SFBT with biomedical interventions and traditional care is not simple. It is disappointing that the book does not include a discussion of the contextual obstacles to delivering SFBT and how these have been overcome in the author's experience. This text is a brave attempt to disseminate an innovation in SLT practice. I am uncertain that it would enable a nurse to practice SFBT, but it could ignite interest in the approach and provide impetus for similar innovation in general nursing practice.

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.

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.