Developing Cancer Services: Patient and Carer Experiences. Final Report

This is the Final Report of the Developing Cancer Services: Patient and Carer Experiences programme funded by the Scottish Executive Health Department undertaken by the Cancer Care Research Centre (CCRC). The report draws on a series of eight projects conducted as part of the programme between 2004 and 2007. There are separate final reports for each of these projects, which provide details of the methods, findings, conclusions and recommendations for each aspect of the work. These reports are available on the CCRC website www.cancercare.stir.ac.u

Needs of Carers of People Affected by Cancer and Information Needs of People Affected by Cancer: Final Report

First paragraph: Following an assessment of the needs for, and provision of, carer support and information for people affected by cancer in British Forces Germany (BFG), it was considered that although support and information is available, there is a lack of a comprehensive and integrated system for ensuring that people's support and information needs were being consistently me

An Evaluation of the Rachel House at Home Service for the Children’s Hospice Association Scotland: Summary Public Report

First paragraph: The Children's Hospice Association Scotland (CHAS) was established in 1992 and is known across the country as a charity committed to specialist caring, support and respite for children and young people with palliative care needs and their families. The primary objective of CHAS is to offer hospice services, free of charge to every child and family who needs and wants them (CHAS, 2005). CHAS has two hospices, Rachel House in Kinross and Robin House in Balloch, and offers a home care service in the Central Belt area, a 24 hour telephone support and advice service and a small home care service called Rachel House at Home (RHAH) in the north of Scotland based at Highland Hospice, Inverness

A review of the effectiveness of interventions, approaches and models at individual, community and population level that are aimed at changing health outcomes through changing knowledge attitudes and behaviour

This document is the summary of a ‘review of reviews’, which aims to bring together a large body of evidence and provide a critical and structured overview of the effectiveness of interventions and models to change attitudes, knowledge and behaviours in six different areas. This overview will provide researchers, policy and decision-makers, and practitioners with accessible, good quality evidence in these topic areas

Spinal cord compression secondary to cancer : disability and rehabilitation

Introduction This thesis describes a research study designed to examine the consequences of disability arising out of spinal cord compression secondary to cancer, and to examine the rehabilitation services available to patients. Research aims and questions The study was intended to achieve the following: 1. To ascertain what might constitute effective rehabilitation interventions for patients with metastatic spinal cord compression. 2. To identify the conditions in which these intervention might be delivered. 3. To ground proposals in spinal cord compression patients’ experience of disability. The following research questions were posed: 1. What are the consequences of disability for patients with metastatic spinal cord compression? 2. What strategies do patients themselves use to manage disability? 3. What do health care staff, particularly rehabilitation professionals, understand to be the consequences of disability for this patient group, and correspondingly, what are their views on the significance and provision of rehabilitation? 4. To what extent is rehabilitation being provided to these patients, and with what effect? 5. Where rehabilitation is not being provided, why is this the case? Study design The study had two components: • A series of nine in-depth interview-based case studies, which involved talking to patients about their experiences of living with spinal cord compression, as well as gaining the perspectives of family members and the health professionals who provided care and services. • A retrospective audit of the medical records of 73 spinal cord compression patients admitted to a radiotherapy in-patient unit (the Frank Ellis Unit at the Churchill Hospital in Oxford) over a two year period (July 2003 – June 2005), identifying disability-related problems and the measures taken to address them. This was a Phase I modelling study in terms of the Medical Research Council’s framework for evaluating complex interventions, with Pawson and Tilley’s (1997) Context-Mechanism-Outcome configuration adopted as a conceptual basis for data collection. Within-case analysis was informed by George and Bennett’s (2004) account of process tracing, and between-case analysis was modelled on the constant comparative method of Glaser and Strauss (1967) with an analysis of narrative as a variation on that theme. Results Disability is a serious problem for patients with spinal cord compression, but it is one problem among many others, not the least of which are the physical and emotional consequences of life-threatening illness. In response to disability, patients ‘twin-track’ their attitudes to it, acknowledging but also resisting the idea of themselves as disabled, and adopting a series of psychological devices to manage the tension. In effect, patients recognise that something significant has changed and that, as a consequence, new self-management skills must be learned, functional boundaries must be explored, useful information must be sought. At the same time, they display a determination to hold on to an established identity, associated with a sense of normality. This identity embraces the idea of competence and resourcefulness, the events, activities and pleasures that one looks forward to, and the wish to avoid burdening others. It is not a ‘disabled’ identity. To some extent, these two attitudes are in tension, as one acknowledges disability while the other, implicitly or explicitly, resists it. Consequently, patients try to find ways of resolving this tension, by ‘revising downwards’ their expectations, by constantly deferring the anticipated pleasures, and by avoiding situations in which their abilities might be put to the test, or the sense of normality be disconfirmed. Health care professionals are likely to construe the patient’s response as indicative of a certain type of character – ‘realistic’ on one hand, and ‘unrealistic’ on the other. They do not see ‘acknowledging / not acknowledging’ as twin facets of a complex response to circumstances, or as something which every patient engages in to one degree or another. Patients are motivated not to recognise rehabilitation as something they need, a view which is confirmed by the cursory form of rehabilitation experienced in hospital, and by the marginal significance attributed to it by nursing and medical staff. On discharge, hospital staff assume that rehabilitation needs will be identified in the community, although the way in which community rehabilitation services are organised virtually guarantees that this will not happen, unless a specific referral is made (as it is in only 5% of cases). The patient, meanwhile, remains unaware of the potential value of rehabilitation, and has no incentive to request rehabilitation if no-one offers it. They are consequently unprepared for life post-discharge, and assume that they (and their families) must manage on their own. Conclusions Like the patients, health care professionals may have to ‘twin-track’ if they are to provide rehabilitation in a way that is acceptable to patients with metastatic spinal cord compression. Instead of categorising patients as ‘realistic’ or ‘unrealistic’, they should work towards sustaining patients’ ‘positive illusions’, while at the same time taking whatever opportunities arise to enhance the patient’s day-to-day ability to function in a ‘safe’ space. This entails revising some deeply entrenched ideas about working with patients who have a disability: patient-centredness, the importance of goal setting, and the need for adjustment.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

People's experiences of cancer within the first year following diagnosis. Final Report

The aim of the study was to explore the experiences of people affected by cancer in the first year following diagnosis with breast, lung, colorectal, prostate or gynaecological cancer. This was a descriptive qualitative study conducted over a period of 18 months during which three serial, longitudinal semi-structured interviews with 66 people, their nominated partner/carer1 (n=43) and healthcare professional (n=20) were conducted. The study included 18 people with colorectal cancer, 12 women with breast cancer, 9 women with gynaecological cancer, 17 people with lung cancer and 10 men with prostate cancer. The sampling strategy was not designed to derive a representative sample but to enable the researchers to understand experience of cancer and cancer care from men and women with a different cancer diagnosis and who had different socio-economic backgrounds and lived either in a rural or urban area. A conscious effort was made to include people from different ethnic minority groups but this was unsuccessful because no or very small numbers of people from these groups were diagnosed with cancer during the period of recruitment in the cancer centres where healthcare professionals were recruiting for the study