Jane Hopkinson

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. To identify quality of life issues that are relevant to carers of cancer patients with cachexia. 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. 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 ...

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. 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. 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 opportuniti...

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. 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 ...

ABSTRACT 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. 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. 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. We are conducting a systematic evaluation of literature to provide recommendations for the supportive nutritional care of older malnourished chronically ill people in hospital.

ABSTRACT Background: Many people with cancer experience pain at the end of life. Family carers play a significant role in managing pain medication: a practical and nursing skill that is both central and critical to patient and carer. There is significant evidence this is problematic for carers and patients. Family carers often lack information and confidence, with some believing pain cannot be controlled and are concerned about medication becoming addictive. Carers’ roles in cancer pain management have been neglected, and a carer-focused, tailored intervention has the potential to improve care in this area. Methods/design: A feasibility study is being conducted (2013-2015) to test the feasibility, acceptability and efficacy of a newly developed intervention (Cancer Carers Medicines Management: CCMM) to improve carers’ knowledge, beliefs, skills and self-efficacy for pain medicines management, and to decrease carer strain. The feasibility trial involves recruiting nurses and carers in two sites, to inform a follow-on randomised control trial focusing on effectiveness. This paper presents the feasibility study protocol. Discussion: The feasibility trial aims to evaluate the feasibility and acceptability of the study methods and intervention, and to provide preliminary data concerning the intervention’s impact. This will include the intervention’s impact on carer outcomes using validated questionnaires measuring carer pain medication knowledge, beliefs and skills; self-efficacy and carer strain. Secondary outcomes from validated questionnaires and interviews will include perceptions of patient pain, burden of the intervention, and factors inhibiting or facilitating intervention use http://www.southampton.ac.uk/assets/centresresearch/documents/wphs/ELStudy%20protocol%20for%20a%20feasibility%20trial%20of%20Cancer%20Carer.pdf

Family carers need support with managing end-of-life pain medicines, yet no UK research has developed and tested interventions to help with this. We have recently completed a Phase I-II feasibility study, funded by Dimbleby Marie Curie, to test a new intervention: Cancer Carer Medicines Management (CCMM). To test the feasibility, acceptability and efficacy of CCMM to improve carers' knowledge, beliefs, and self-efficacy for pain medicines management. We used an incremental, multi-method approach to develop CCMM including a systematic review of interventions for carer end-of-life medicines management, interviews and action research workshops. Phase II: A two arm, cluster randomised feasibility trial of CCMM with outcomes at baseline, 1 and 4 weeks post-intervention and a qualitative sub-study of CCMM acceptability and trial methods, with carer interviews conducted 1 and 4 weeks post-intervention, and with nurses on study completion. Phase I enabled us to develop an evidence-based, clinically applicable intervention. In Phase II we recruited, randomised and trained nurses to use CCMM at two sites. 16 patient-carer dyads were recruited to the study; 8 dyads completed the study protocol. 10 of 12 study nurses took part in an interview. We will present results on study feasibility and acceptability including: the randomisation process; recruitment and attrition rates; key factors that promoted or inhibited routine utilization of CCMM by nurses and carers; and obstacles to the trial process. A newly developed intervention for carers was tested in a feasibility trial. Important lessons were learned to inform the design and evaluation of future research in this area.

ABSTRACT 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. Carers' roles have been neglected, with few interventions concerning pain management focusing specifically on carers, and a particular lack of UK research. 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 carers' 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. 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.

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 understanding of a good death. The concept of good death is perhaps a reduction 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 recognizes that the beliefs and values of each individual influences what they understand to be acceptable death.

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.

Editorial arrangement. Preface, Introduction and Part introductions© Clive Seale, Giampietro Gobo, Jaber F. Gubrium, David Silverman 2007 Chapter 1© Tim Rapley 2004 Chapter 2© Joanna Bornat 2004 Chapter 3© Gabriele Rosenthal 2004 Chapter 4© Phil Macnaghten and ...

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

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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. To develop a pilot item bank to assess the PSC of CCS. 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. 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. 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.

Hopkinson, Jane, Wright, David and Foster, Claire (2009) Letter to the editor. Re: Assessment and monitoring of nutritional status in patients with advanced cancer. IJPN 13(6): 258–65. International Journal of Palliative Nursing, 14, (2), 100-101. ... Full text not available from this repository.

Key findings 283 abstracts of papers were retrieved and checked and 33 studies relating to the implications of long-term survival subjected to detailed scrutiny. This review suggests that the majority of long-term cancer survivors cope well and enjoy good QoL. However, there are ...

... Cairns, Jacqueline, Hansford, Bob, Hopkinson , Jane and Worsfold, Carlone (2010) Multidisciplinary approach to nutritional problems. In, Del Fabbro, Egidio, Bruera, Eduardo, Demark-Wahnefried, Wendy, Bowling, Tim, Hopkinson, Jane B. and Baracos, Vickie E. (eds.) ...

To discuss the psychosocial support of people affected by cancer anorexia, drawing on recent publications. 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. 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.

This year's conference focuses on the impact of research and other scholarly activities on health and social care policy, practice and education. It offers an opportunity for healthcare workers, educators, researchers and students across the School and its health care ...

Nutrition, appetite, and involuntary weight loss are issues that affect a large number of cancer patients and cancer survivors. Aspects such as symptom management, behavioural modification, exercise and medication are all important aspects of cancer care, but ...

Some people experience long term problems associated with cancer and its treatment. There is a need to know how to support them. This systematic literature review explores the empirical evidence for psycho-social implications of long-term survival (≥ 5 years) following a ...