1,720,967 research outputs found
Eating isn’t everything: developing and understanding of eating difficulties experienced by people with advanced cancer
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Menopausal hot flushes after breast cancer
Full text linkThe study aimed to improve understanding of the natural history and impact of hot flushes after breast cancer.Data were collected from women participating in an RCT of relaxation to reduce the incidence of flushes from breast cancer follow-up clinics from two hospitals in South-East England. Repondents were 150 women experiencing hot flushes following completion of primary treatment for breast cancer. This study utilized a flush diary, the Hot Flushes and Night Sweats Questionnaire (HFNSQ), Functional Assessment of Cancer Therapy with Endocrine Subscale (FACT-ES) and Spielberger State/Trait Anxiety Index (STAI) as the main outcome measures. The study found that in this sample, 51 (34%) women experienced flushes more than fiveyears after diagnosis and 75 (50%) more than 5 years after menopause. Sleep disruption occurred in 90 women (72% of those that returned diaries), affecting half of the nights they recorded. The mean problem rating on the HFNSQ was 4.85 out of 10. A peak incidence of flushes was apparent around 10 a.m. in women taking tamoxifen. It was concluded that hot flushes after breast cancer may be long-lasting and cause sleeping difficulties for many women. Tamoxifen may affect the diurnal pattern of flushes. After breast cancer, the duration of flushes, potential distress and disruption to women’s lives should not be underestimated and appropriate interventions should be offered
'Nothing can be done. These are the words they tell me': Exploring the experiences of weight loss in people with advanced cancer
No full textBackground and aim: Weight loss is one of the commonest symptoms experienced by patients with advanced cancer, with prevalence reported to be between 39% and 82% [1]. Management has focused primarily on the use of nutritional and pharmacological interventions, which have been found of limited value in arresting or reversing the symptom [2]. Whilst there is evidence that weight loss can be of concern to patients, little is known about why it can be experienced as distressing or how people might be helped to live with the symptom. This paper reports a study of the experience of and the concerns about weight loss described by patients with advanced cancer and their caregivers. Its purpose is to examine the potential for mitigating weight loss related distress.
Method: The research was an in-depth exploration using a case study design. The cases were two community palliative care teams working in the South of England in 2003. Multiple methods of data collection included interviews to gather detailed information from 30 patients, 23 carers and 14 nurse specialists. These semi-structured interviews focused on the experience of weight loss, its meaning and management. Interview recordings were transcribed and analysed using both content and thematic approaches. The findings enabled the development of a model of the experience of living with weight loss and advanced cancer.
Findings: Distress was experienced when advanced cancer became visible through weight loss. Visible weight loss symbolised 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: This study has developed a new understanding of the experience of the weight loss that can accompany advanced cancer. The work is of importance because it leads to the proposition that weight loss related distress might be mitigated, if nurses adopt a proactive approach to the management of the symptom that breaks through the weight loss taboo
Redesigning the patient journey. What is the feasibility of nurse-led chemotherapy services from a user perspective?
No full textThe prevalence of concern about weight loss and decline in food intake in people with advanced cancer
No full textAim: This paper reports findings of a survey of the prevalence of concern about weight loss and decline in food intake in patients with advanced cancer. It was part of a larger study with the purpose of exploring the potential for helping patients and their families live with the symptoms.
Background: Weight loss and anorexia are commonly reported symptoms in people with advanced cancer. Little is known about patient experience of the symptoms, in particular whether they find them of concern. If patients are troubled by the symptoms, mitigating this distress may be important in enabling them to die at home.
Methods: The research was a case study design. The cases were two community palliative home care teams serving a population of over 1 million people in the South of England in 2003. Multiple methods of data collection included a questionnaire survey and semi-structured conversational style interviews with a purposive sample of patients (n = 30), carers (n = 23) and nurse specialists (n = 14). The survey was of 233 patients with advanced cancer (response rate 85%). These people represented 67% of the total caseload across the two study sites over a two week period.
Analyses of the survey data were conducted using SPSS (Statistical Package for Social Scientists version 12.0). Interview data were analysed thematically.
Results: More than three-quarters of the 199 patients who returned questionnaires reported weight loss (78.8%) and/or to be eating less (75.9%). More than one third of the people reporting weight loss (35%) and nearly half (45%) of people who reported eating less considered the changes of concern.
Patients who were within 6 months of death were found most likely to report concern about either weight loss and/or eating less. The interview data provide insights into the reasons why the symptoms can be experienced as distressing.
Conclusion: Weight loss and eating related distress are commonly experienced and previously unresearched problems in people with advanced cancer. Further work is needed to establish if concerns are amenable to interventions that translate into meaningful outcomes for patients and their families
Dissemination and utilisation of an intervention to manage breathlessness: Letting go or letting down?
No full textThe relationship between research and practice development has not always been a close one. Researchers focus upon the production of new knowledge to create the evidence base upon which the development of practice is taken forward, usually by other people within the clinical area. Work being undertaken at the Macmillan Practice Development Unit (MPDU) in London about the dissemination and utilisation of evidence concerning the management of breathlessness has raised a number of issues. These concern the confidence of practitioners to take on new approaches within the practice sphere, their desire for accredited education, and questions about responsibility for, and ownership of, the dissemination process. Different values about the nature of learning are explored here, which may explain the dissonance between practitioner and researcher expectations about the dissemination and utilisation process
Exploring the experience of weight loss in people with advanced cancer
No full textAim: 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
Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life
No full textPalliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams.
Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients
The Prevalence of Concern About Weight Loss and Change in Eating Habits in People with Advanced Cancer
No full textWeight 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
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