49 research outputs found
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Eating isn’t everything: developing and understanding of eating difficulties experienced by people with advanced cancer
Dissemination and utilisation of an intervention to manage breathlessness: Letting go or letting down?
The 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
'Nothing can be done. These are the words they tell me': Exploring the experiences of weight loss in people with advanced cancer
Background 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
The prevalence of concern about weight loss and decline in food intake in people with advanced cancer
Aim: 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