Living with mesothelioma. A literature review.

Mesothelioma is an asbestos-related cancer that affects mainly the pleura. World-wide incidence is increasing and set to rise for some time particularly in developing countries. Mesothelioma is uniformly fatal and often associated with difficult symptoms. The purpose of this review is to identify what is known about the experience of people living with mesothelioma. A literature search identified 13 papers covering qualitative studies, patient-reported quality of life data collected as part of a clinical trial, symptoms and survey of patients and carers. The findings suggest the impact of mesothelioma is multidimensional on: physical symptoms (especially pain, breathlessness, fatigue, cough, sleep disturbance, appetite loss and sweating), emotional functioning (anxiety, depression, fear and isolation), social consequences (changes in roles and relationships) and interventions (the necessity of frequent anti-cancer treatments and admissions for symptom control). The impact on family members is significant also. Although limited, these findings provide an important insight into the impact of mesothelioma on patients and family members and suggest areas where service provision may fail to meet their needs. Finally, the review highlights an urgent need for further research to more fully understand the experience of living with mesothelioma and identify the specific needs of patients and family members.

Patients' attitudes to risk in lung cancer surgery: A qualitative study.

OBJECTIVES: Lung cancer surgery leads to long term survival for some patients but little is known about how patients decide whether to accept the associated surgical risks. The objective of this qualitative study was to explore patients' attitudes to the risks associated with lung cancer surgery. METHODS: Fifteen patients with resectable lung cancer, recruited via multi-disciplinary team meetings at an English tertiary referral centre, participated in semi-structured interviews to explore their attitudes to the morbidity and mortality risks associated with lung cancer surgery. Transcripts were analysed using the framework method. RESULTS: Participants reported being 'pleased' to hear that they were suitable for surgery and felt that surgery was not a treatment to be turned down because they did not see any alternatives. Participants had some knowledge of perioperative risks, including mortality estimates; however, many voiced a preference not to know these risks and to let the medical team decide their treatment plan. Some found it difficult to relate the potential risks and complications of surgery to their own situation and appeared willing to accept high perioperative mortality risks. Generally, participants were willing to accept quite severe long-term postoperative breathlessness; however, it was apparent that many actually found this possibility difficult to imagine. CONCLUSION: Patients do not necessarily wish to know details of risks associated with lung cancer surgery and may wish to defer decisions about treatment to their medical team. Investment in the doctor-patient relationship, particularly for the surgeon, is therefore important in the management of patients with lung cancer.

Barriers to uptake of services for coronary heart disease: qualitative study.

OBJECTIVES: To identify factors within the South Yorkshire coalfields that influence use of health services by people with angina. DESIGN: Qualitative study using semistructured individual and group interviews. SETTING: General practice and community settings in Barnsley and Rotherham health authorities. PARTICIPANTS: 14 patients with stable angina and nine primary care staff had individual interviews plus five community groups and one group of general practitioners. MAIN OUTCOME MEASURES: Barriers to accessing health services. RESULTS: A complex web of factors was identified that prevented, delayed, or facilitated referral to secondary care. Delay, denial, and self management by patients meant that the full extent of symptoms often remained hidden from general practitioners, resulting in a delayed or missed referral. Barriers identified fell into six categories: structural, personal, social and cultural, past experience and expectations, diagnostic confusion, and knowledge and awareness. CONCLUSIONS: Many of the factors influencing referral operate before general practitioners become involved. Community development could be one way of tackling inequalities and promoting sustainable change. Structural changes are needed to improve access and increase the acceptability of general practice services. Primary care staff should be educated to detect underreporting of symptoms and promote appropriate referral.

Cardiac rehabilitation: the needs of South Asian cardiac patients.

There is an indication that South Asian people in the UK experience greater delays than white British populations in obtaining appropriate treatment and intervention despite experiencing higher levels of coronary heart disease (Chaturvedi et al, 1997). Evidence suggests that access to and uptake of UK cardiac rehabilitation services is disproportionately low in South Asian populations (NHS Centre for Reviews and Dissemination, 1998). This article examines the results of an audit of cardiac rehabilitation among cardiac patients of South Asian origin who were admitted to a large city teaching hospital in Sheffield. The results are discussed in the light of current concerns about the adequacy of communication with non-English speaking NHS patients. The implications for access to services and clinical practice are considered.

Access to the internet in an acute care area: experiences of nurses.

The internet is expected to play a key role in delivering evidence-based practice (Department of Health (DoH), 1997, 1998a; Beyea, 2000). In the UK, poor access to the internet and a lack of knowledge and confidence have been identified as barriers to nurses accessing evidence via the internet. The study described here aimed to evaluate how open access to the internet in an acute ward area had an impact upon the evidence-based practice of nurse and allied health professionals. The study was funded by the Department of Health. It incorporated a survey of over 200 staff, semi-structured interviews and monitoring of internet use. The results indicate that the ward-based internet facilities were valued and used by nurses. However, time, support and training are required for nurse to realize the full potential of the internet. Future partnerships between health science libraries and the NHS are recommended to help staff to access and use the internet in order to answer clinically derived questions.

Ethical review of health service research in the UK: implications for nursing.

BACKGROUND: This paper examines the current systems and structures for ethical review of health services research in the United Kingdom (UK). Past criticisms and the adequacy of recent governance arrangements for Ethics Committees in addressing these are discussed. The implications for nurses are then considered. RATIONALE: This examination of the situation is prompted by the demand for more innovative research designs in health care evaluation, new regulations and guidance, and a climate of public anxiety regarding research conduct in the UK. FINDINGS: The evolution of Research Ethics Committees (RECs) has been slow and resulted in a lack in consistency. Criticisms made of RECs can be categorized into four main areas. New governance arrangements for RECs have emerged as potential solutions to these criticisms. This review identifies the limitations of the new governance arrangements in addressing past criticisms because of two factors. The first is insufficient funding. The second is confusion about the confidentiality and consent requirements of clinicians working in areas where research is conducted and on whom recruitment processes often rely. The current situation regarding health research ethical review has implications for nurses, whether they are working as researchers, members of Ethics Committees or clinicians where research is conducted. CONCLUSION: The new governance arrangements may go some way to addressing past problems. However, investment in RECs is required. It is also important to realize that maintaining ethical probity in health service research is a tripartite concern. It is reliant as it is on the actions of Ethics Committees and clinical research partners as well as those of the researchers themselves.

'I'm still waiting...': barriers to accessing cardiac rehabilitation services.

BACKGROUND: The United Kingdom (UK) National Service Framework for coronary heart disease challenges health services to address existing problems regarding the quality and content of cardiac rehabilitation services. Concern also exists regarding inequalities in access to services. The South Yorkshire Coalfields Health Action Zone (SYCHAZ) funded this study to harness the views and experiences of staff and patients regarding existing services. The intention is to use the information gained to develop acceptable and accessible services for the future. AIMS: To explore what barriers exist for patients in accessing cardiac rehabilitation services within the South Yorkshire Coalfield locality. ETHICAL ISSUES AND APPROVAL: Patients were identified and recruited with the assistance of staff responsible for their care. Informed consent was obtained prior to participation. Approval was obtained from the relevant Ethics Committees. METHODS: Qualitative methods were used, including semi-structured interviews and Framework Analysis techniques. Purposive sampling was used to select participants. INSTRUMENTS: Semi-structured individual interviews of 15 staff and 20 postmyocardial infarction patients. One group interview with seven health visitors and two with lay members of heart support groups. OUTCOMES: Barriers to accessing cardiac rehabilitation. RESULTS: This study revealed a limited service capacity. Big gaps exist between patches of service activity that most patients appear to slip through. Problems in accessing the service were categorized into five themes: absence, waiting, communication, understanding, and appropriateness. Some groups fared worse in terms of access to services, for example women, the elderly and those in traditional working class coalfields communities. Professional and more affluent participants appeared better able to negotiate their way around the system by seeking out advice or 'going private'. LIMITATIONS: The omission of medical staff and ethnic minority patients. CONCLUSIONS: Cardiac rehabilitation in the policy targets in UK will only be met with substantial investment to address the barriers identified here.