An ethnography of managing emotions when talking about life-threatening illness.

AIM: This ethnographic study was concerned with how dying patients, palliative care staff and family caregivers communicate about life-threatening illness in a palliative care setting in Ethiopia. BACKGROUND: Ethiopia, as a developing country, had few resources for caring for those requiring end-of-life care. However, palliative care was supported by local champions in Ethiopia and by the Federal Ministry of Health. INTRODUCTION: The disclosure of bad news was discouraged because it was believed that such disclosure may lead to unnecessary distress and to loss of hope. METHODS: Non-participant observation amounting to 276 h of observation and ethnographic interviews with four patients, six family caregivers and five palliative care staff during two periods of data collection (November 2011-January 2012 and May 2012-August 2012) in Addis Ababa, Ethiopia. FINDINGS: Although palliative care staff create openness in communication with patients and family caregivers about terminal illness and dying, ultimately palliative care staff deferred to family wishes about significant news disclosures, in order to avoid upset. Family caregivers were found to avoid disclosing news of a terminal illness to their family member and wished to keep the patient in closed awareness. In contrast, an open awareness context existed between palliative care staff and family caregivers. DISCUSSION: In managing truth telling in different cultural settings, medical and nursing staff as well as health policy makers need to take into account the various awareness contexts highlighted in this study. Palliative care staff should consider how actions such as protecting patients from upset may inadvertently deny the patient the right to exercise control. CONCLUSION AND IMPLICATIONS FOR POLICY: Health policy makers should ensure that the design and implementation of palliative care services should not be a wholesale adoption of Western style services but ensure that such services are adapted to reflect the religious, cultural and social needs of the community. Foreign workers and volunteers who deliver palliative care services and education in Ethiopia should reflect local religious and cultural sensitivities.

Do patients on oral chemotherapy have sufficient knowledge for optimal adherence? A mixed methods study.

A new treatment paradigm has emerged with many patients now receiving oral chemotherapy (OC) as first-line treatment for cancer. Treatment with OC has resulted in reduced hospital costs, more autonomy for patients but with added responsibilities for patient self-management. Little is known about patient's knowledge following patient education to enable optimal adherence with OC. A mixed methods study was carried out using a self-report questionnaire to patients on OC for multiple myeloma (MM) followed by semi-structured interviews with patients at home. Analysis identifies high rates of adherence (92.2%) with OC for MM. However, statistically significant knowledge deficits were identified, which were related to patient ethnicity and to gender. There is the potential for non-intentional non-adherence with OC due to deficits in knowledge of OC. Support at home needs to include primary care practitioners such as GPs, practice nurses and pharmacists so that timely support is easily accessible especially in the early phase of treatment.

Neurobehavioural changes in patients following brain tumour: patients and relatives perspective.

PURPOSE: Patients and relatives experiences of behavioural and personality changes following brain tumour were assessed to determine whether these changes are more prominent in the experience of patients with frontal tumours and their relatives as a first step to evaluate the need to develop appropriate support and management of such changes, which have a substantial impact on social functioning, and ultimately to improve quality of life. METHODS: Patients and relatives rated the patients' current levels of apathy, disinhibition and executive dysfunction on the Frontal Systems Behaviour Scale. Patients also completed the Hospital Anxiety and Depression Scale. The data from 28 patients with frontal tumours and 24 of their relatives, and 27 patients with nonfrontal tumours and 25 of their relatives, were analysed. RESULTS: Patients with frontal tumours rated themselves significantly higher than patients with nonfrontal tumours on all frontal systems-related behaviours. The number of patients reporting clinical levels of difficulty was significantly greater in patients with frontal tumours for disinhibition. The ratings of relatives of patients with frontal tumours were significantly higher than those of relatives of patients with nonfrontal tumours for apathy. Clinically significant levels of apathy and executive dysfunction were however reported by at least 40 % of patients and relatives regardless of tumour location. Clinical levels of anxiety were reported by significantly more patients with frontal tumours than those with nonfrontal tumours. CONCLUSION: Support and management of behavioural and personality change for patients with brain tumours and their relatives, regardless of tumour location, would be most appropriate.

'It stays with me': the experiences of second- and third-year student nurses when caring for patients with cancer.

Little is known about student nurses experiences of nursing patients with cancer in the UK. With the increasing survival of people with cancer and with cancer no longer seen as a terminal illness it is useful to understand student nurses clinical experience when nursing those with cancer. This study takes a phenomenological approach involving three focus group interviews with 20 student nurses from the second and third year of their course in one centre in the UK. All the students had experience of caring for patients with cancer. The key themes emerging from the study were: Communication, Impact on Self, Lack of Support and End-of-Life-Care. Students emphasised the need to have more knowledge and support in relation to cancer care. They describe how they lack communication skills and found it difficult to handle their emotions. A number of students found the whole experience of caring for patients with cancer emotionally distressing and draining and they describe avoiding contact with these patients by using distancing and avoidance strategies. Student nurses need additional support through demystifying cancer, using reflective practice and good mentoring in the clinical area to enable students to feel supported, and develop confidence in their capacity for care for people with cancer.

Coping with an exulcerated breast carcinoma: an interpretative phenomenological study.

OBJECTIVE: To explore how women living at home with a malignant fungating wound (MFW) cope with such wounds. METHOD: To explore coping through the lived experiences of patients a methodological framework, using Heideggerian hermeneutic phenomenology and semi-structured interviews. Nine patients were interviewed from January until November 2009. RESULTS: The results are divided into two categories: 'living with a MFW' and 'feeling different'. These categories demonstrate how it is to live with the unpredictability, and uncontrollability of a MFW due to symptoms such as malodour, bleeding, exudate, pain and itching. The loss of control of the body boundary due to uncontrollable symptoms led to significant levels of distress and suffering for the patients. Different coping strategies were used to live with this wound. CONCLUSION: This study demonstrates how difficult it is to live and cope with a malignant fungating wound. Coping strategies, including going into isolation, or denying any issues, were used. When taking care of patients with MFWs, strategies need to integrate a palliative, holistic, empathic approach.

Student nurses' knowledge of palliative care: evaluating an education module.

There is evidence that education in palliative care in the UK is somewhat patchy and that this important area of health care should be given a greater emphasis in the nursing curriculum. This article describes an evaluation of a palliative care module taken by a group of third year student nurses. The effect of the module was evaluated using the palliative care quiz for nursing (PCQN), administered at the beginning and at the end of the module. The results demonstrate that the students significantly increased their understanding of aspects of pain and symptom control. In particular, they became knowledgeable about adjuvant therapies and opioid use. In contrast to previous studies, the students rejected the 'fear of addiction' associated with opioid use. Deficits in knowledge included side-effects of codeine, use of sedation and the use of placebos. The results support the need to develop a compulsory module in palliative care that is formally assessed and includes a palliative care placement. This would enable comprehensive and systematic coverage of palliative care in the undergraduate nursing curriculum.

Nursing students' response to self-directed learning: an evaluation of a learning process applying Jarvis' framework.

This paper evaluates the effectiveness of a student-centred module of learning using Jarvis' experiential framework. One hundred and thirty-five students undertook the module over a 9-month period. A semi-structured questionnaire was used to explore students' learning, choice of topic, structure, and benefit of the module. The data were analysed using simple descriptive statistics and content analysis. A key theme emerged related to the beneficial learning experience. Presentation skills/shared learning, choice and autonomy, taking responsibility, and research skills were other themes that emerged. Whilst the literature suggests students dislike experiential forms of learning, the positive evaluation of this module demonstrates that it can be used effectively. Furthermore, Jarvis' model provides a useful framework for structuring this approach to learning. One of the research strategies within a nursing faculty should be to develop progressive student-focused educational methods and evaluate their effect or professional preparation. This, it is argued, needs to be perceived as a valuable and essential activity within an academic nursing department.

[Percutaneous transhepatic cholangiography and cholangiostomy in mechanical jaundice]. / Chreskozhnaia chrespechenochnaia kholangiografiia i kholangiostomiia pri mekhanicheskoi zheltukhe.

Under investigation there were 223 patients with mechanical jaundice, 132 patients were subjected to percutaneous transhepatic cholangiography, 102 patients--to percutaneous transhepatic cholangiostomy. The preoperative drainage of bile ducts was established to be efficient in order to reduce lethality. High diagnostic value of cholangiography is shown. Indications and contraindications to the application of cholangiostomy depending on etiology of jaundice, localization of the tumor, and its spread, degree of hepatic insufficiency and risk of operative procedures are formulated.