'Abandoned by medicine'? A qualitative study of women's experiences with lymphoedema secondary to cancer, and the implications for care.

BACKGROUND: Lymphoedema secondary to cancer is a relatively neglected and under-researched condition. Few studies report people's experiences of care and treatment provision when living with the condition. Current practice focuses on the physical treatment yet psychosocial needs often remain unmet. A previous study examining the patient perspective identified the theme of being 'abandoned by medicine'. Perceived lack of support may result in a delayed adaptation and acceptance of this long-term condition and can significantly impact on psychological well-being. We explore this emerging theme alongside others in order to provide a guide to action for improvements for patient benefit. AIM: The central aim was to explore women's views of their care and treatment following a diagnosis with lymphoedema secondary to cancer. This forms part of a larger study aimed at assessing appropriate screening tools to measure psychosocial distress. METHODS: A mixed-methods approach was used for the main study. Here we report the qualitative component, derived from in-depth semi-structured interviews conducted in the homes of the participants (n = 14) and focus group discussions (n = 15). In addition, qualitative comments from questionnaire data from a large-scale postal survey are included (n = 104). FINDINGS: Participants identified considerable deficiencies in health care workers' knowledge and awareness of lymphoedema, which subsequently impacted on the patients' needs for information, support and understanding. Access to appropriate treatment was patchy and problems were identified with the process of obtaining compression garments, massage and other sources of help. Although lymphoedema is a long-term disfiguring condition, and much is known about how this impacts on patients' emotional well-being, little attention was paid by health professionals to potential psychosocial consequences. In essence women had to become experts of their own condition and cope as best as they could. We provide recommendations to improve service delivery and address these unmet needs.

The dissonant care management of illicit drug users in medical wards, the views of nurses and patients: a grounded theory study.

AIMS: The aim of this study was to explore how registered nurses manage and deliver care to patients admitted to medical wards and Medical Assessment Units with complications of drug use and to elicit the experiences and views of those receiving that care. BACKGROUND: Illicit drug use is a major public health problem worldwide. The physical complications of problem drug use often result in admission to medical wards. Registered nurses working in these settings have been reported as possessing negative attitudes towards patients who use illicit drugs and lacking preparation to provide problem drug use-related care needs. DESIGN: Grounded theory. METHODS: A grounded theory approach was used to collect and analyse 41 semi-structured interviews. Data collection and analysis were undertaken in nine medical wards in the Northwest of England in 2008. A combination of purposive and theoretical sampling was adopted to recruit registered nurses (n=29) and medical ward patients (n=12) admitted for physical complications of problem drug use. Data were subjected to constant comparative analysis. FINDINGS: Two sub-categories emerged: 'Lack of knowledge to care' and 'Distrust and detachment' and these formed the core category 'Dissonant care'. The combination of lack of educational preparation, negative attitudes and experience of conflict, aggression, and untrustworthiness appeared to affect negatively the nurse-patient relationship. CONCLUSIONS: This study illuminated interplay of factors that complicated the delivery of care. The complexity of caring for patients who are pre-judged negatively by nurses appears to engender dissonance and disparities in care delivery. Better education and training, coupled with role support about problem drug use may reduce conflict, disruption, and violence and facilitate competent care for these patients.

Nurses' knowledge of pharmacology behind drugs they commonly administer.

AIM: To determine if nurses had adequate pharmacology knowledge of the drugs they commonly administer. BACKGROUND: Literature suggests that nurses have insufficient pharmacology knowledge. We also know that nurses and teachers of pharmacology are not satisfied with the amount of pharmacology taught in preregistration programmes in the UK. There is a lack of primary research on nurses' knowledge of pharmacology for the purpose of drug administration. DESIGN: We used a non-experimental causal comparative and correlational design. METHODS: We recruited a convenience sample of 42 nurses working in surgical wards of a foundation hospital in the North of England. Data were collected by structured interview and questionnaire methods. During the interview, the participants made a blinded selection of one out of four drugs they commonly administer and answered standard questions which focused on specific pharmacology knowledge. Their answers were given a score out of 10 (100%) to determine their actual pharmacology knowledge. RESULTS: The sample comprised of 18 (42.9%) junior nurses and 24 (57.1%) senior nurses. They had a median experience of 10.87 years postregistration. Their mean knowledge score was six ranging between two and nine (SD 1.9). Only 11 (26.1%) nurses scored eight or above and the majority 24 (57.2%) scored below seven, indicating inadequate knowledge. Knowledge of the mechanism of action and drug interactions was poor. There was a correlation between knowledge and experience. CONCLUSIONS: The results of this study suggest that nurses have inadequate knowledge of pharmacology. The results will contribute to the evidence of nurses' knowledge of pharmacology in the UK. RELEVANCE TO CLINICAL PRACTICE: This study supports the need for supplementary pharmacology education for nurses in clinical settings, focusing on common drugs they administer. This will increase nurses' knowledge and confidence in drug administration and safer medicines management.

Improving the patient's experience of a bone marrow biopsy - an RCT.

AIMS: To compare nitrous oxide 50%/oxygen 50% (N(2)O/O(2)- entonox) plus local anaesthetic (LA) with placebo (oxygen) plus LA in the management of pain experienced by patients undergoing a bone marrow biopsy. BACKGROUND: Bone marrow biopsies are a common procedure for many haematological conditions. Despite the use of a LA, pain during the procedure has frequently been reported by patients. Previous research in pain management of other invasive diagnostic procedures (e.g. sigmoidoscopy) has reported N(2)O/O(2) as an effective alternative to LA. DESIGN: Double-blind randomized controlled trial. METHODS: Forty-eight patients requiring a bone marrow biopsy were randomized to receive either N(2)O/O(2) or oxygen in addition to their LA. Participants were asked to complete a pain score and comment on their experience of the procedure. RESULTS: Although the overall pain scores were moderate, there was a wide range of scores. N(2)O/O(2) resulted in significantly less pain for men, but not for women. All patients who had had previous biopsies reported significantly more pain, regardless of the gas used. There were no significant adverse effects in either group. CONCLUSION: N(2)O/O(2) is a safe, effective, easy-to-use analgesic which merits further investigation in potentially painful diagnostic (and other) interventions. Relevance to clinical practice. Relief of pain is an important issue for nurses. Appropriate assessment of pain experience is a key issue. Nurses should reflect on their own area of practice and identify what is known about the effectiveness of pain management from their patient's perspective. Individual differences may be important, and careful instruction regarding appropriate administration of analgesic agents, such as N(2)O/O(2) may enhance their effectiveness.

Views of oncology patients, their relatives and oncologists on cardiopulmonary resuscitation (CPR): questionnaire-based study.

BACKGROUND: Doctors are justified withholding a treatment, such as cardiopulmonary resuscitation (CPR), if it is unlikely to benefit a patient. The success rates for CPR in patients with cancer is <1%. Guidelines produced in 2001 recommended that CPR should be discussed with patients, even when it is unlikely to be successful. Therefore, should oncologists always discuss resuscitation, even when it is likely to be futile? METHOD: Sixty oncology in-patients and 32 of their relatives were asked their views on CPR, and their views were compared with the oncologist involved in their care. RESULTS: Some 58% of patients wanted to be resuscitated. There was a moderate-strong correlation between patients and their next of kin and the desire for resuscitation. There was also a positive correlation between the doctor's views on suitability for resuscitation, patient's prognostic score, and World Health Organisation (WHO) performance score. CONCLUSION: Most patients wanted to be resuscitated despite being given the likely poor survival rates from CPR. They also wanted to be involved in the decision-making process, and wanted their next of kin involved, even when, medically, the procedure was unlikely to be successful. The findings that patient and next of kin views correlated well shows that relatives' views are a good representation of patient views. In contrast, consultant's decisions were strongly correlated with the patient's performance status and clinical state. No patients were upset by the study, although nine patients declined to participate.

The information needs of head and neck cancer patients prior to surgery.

OBJECTIVE: To describe the common themes in the experiences and expressed information needs of patients undergoing head and neck surgery. Summary background data : Patients who suffer head and neck cancers and undergo surgery often report considerable psychological distress and impaired social functioning. To optimise survival, the decision about what treatment option to follow is often made quickly, with little support in terms of counselling or the provision of information. There is inadequate previous work exploring the content and delivery of information required by patients at this time. PATIENTS AND METHODS: Participants included patients who had undergone surgery for head or neck cancer (n=29) and their immediate relatives who were present at the initial consultation with the surgeon (n=13). Patients were recruited from out-patient departments in two hospitals in the north of England. All interviews were conducted in participants' homes and were guided by a semistructured interview schedule devised both from literature and a pilot study. RESULTS: Whilst most participants felt well informed about the surgical procedure they were undergoing, many reported feeling unprepared for the long-term lifestyle changes that occurred. Information, support and advice throughout the 3-6 months postoperative period was reported to be inadequate. The majority of participants did not ask any questions and did not perceive there was a choice regarding treatment. Individuals who wanted to take an active role in decision-making reported difficulties accessing information to enable them to do so. CONCLUSION: The findings of this study emphasise the need for individualised information provision defined not exclusively by the surgical procedure.

Concordance with community mental health appointments: service users' reasons for discontinuation.

BACKGROUND: Quality issues are being given renewed emphasis through clinical governance and a drive to ensure service users' views underpin health service development. AIMS: To establish service users' reasons for discontinuation of community based mental health appointments in one National Health Service Trust. METHOD: A two-phase survey of all non-completers over a year. Phase one using a structured postal questionnaire. Phase two using structured interviews with respondents to phase one by post, telephone and face to face. RESULTS: A total of 243 discharges because of non-completion were identified by local services over the 12 months of the study and followed up by initial questionnaire. This represents 8.19% of all discharges (2967) within the same period. Forty-four users were engaged and followed up within phase two of the survey. Data were subject to both quantitative and qualitative analysis. CONCLUSIONS: Analysis of responses suggests that the main reasons for non-completion are because of dissatisfaction although the reasons are varied and the interplay between variables is complex. Whilst this user group are not apparently suffering from 'severe mental illness', there is clear, expressed need for a service. RELEVANCE TO CLINICAL PRACTICE: Whoever provides such a service should be responsive to expressed need and a non-medical approach seems to be favoured. If these needs are appropriately met then users are more likely to be engaged and satisfaction is likely to be improved. Although this in itself does not necessarily mean improved clinical outcomes, users are more likely to stay in touch until an agreed discharge. Practical problems of applied health service research are discussed and recommendations are made for a review of referral systems, service delivery and organization with suggestions for further research.

Living with disfigurement.

Body-image disturbance, as a consequence of disfigurement, affects a large number of people in the UK, yet there is little research into the psychosocial consequences. There is evidence that many of the psychological difficulties can be likened to phobic behaviour, particularly in social situations. A fear-avoidance model of psychosocial difficulties following disfigurement is, therefore, potentially useful to nurses working in a variety of settings. The first of two articles on disfigurement explores some of the background to the fear-avoidance model.

The fear-avoidance model: helping patients to cope with disfigurement.

Last week's article established that body disfigurement affects a considerable number of people and causes them significant distress. It also explored how a cognitive behavioural model of psychological disturbance might inform our understanding of the difficulties faced by people with disfigurement. This week's article examines the practical application of the fear-avoidance model and discusses how it can be used by nurses as a means of providing general advice and more specialist intervention.

Terminal illness and body image.

Mark Wareing's case study of a patient with penile cancer (p34) offers an insight into issues of disturbed body image at the end of life. This paper explores some of the patient's experiences in terms of the confrontation and avoidance of difficulties after disfigurement. The effect of the nurse's own anxieties when reflecting on the patient's experiences is also discussed.

Sampling and distribution issues.

Questionnaires are typically concerned with general pictures of the experiences of groups of individuals, rather than with highly detailed, specific examinations of small numbers of individuals. The questions they seek to answer are also broad, with particularly highly structured questionnaires consisting principally of closed-ended questions.