The challenges of managing complex lymphoedema/chronic oedema in the UK and Canada.

This article explores the professional challenges of treating patients with complex/severe forms of chronic oedema/lymphoedema with compression therapy. Four focus groups were held, two in the UK and two in Canada, to examine the challenges faced by practitioners in their everyday practice. A number of challenges were identified by participants in both countries and include the changing profile of lymphoedema/chronic oedema and how increasing complexity is outpacing the development of services and research-based guidelines. Focus groups also highlighted a lack of public awareness, poor professional knowledge, delayed diagnosis and inappropriate treatment as having a significant impact on practice. Other practice-related issues include a poor understanding of treatment options among practitioners, a lack of evidence-based practice as well as difficulties associated with managing psychosocial problems and of ensuring concordance with treatment. In Canada, services tend to be more rural and remote than in the UK, autonomous specialist practice is less developed and practitioners were generally less confident and felt more vulnerable than their UK colleagues. There is a need for integrated, multi-disciplinary services in both countries, with improved education and training, as well as the development of cost-effective compression bandaging systems that can make a major contribution to meeting the challenges of contemporary lymphoedema practice.

The experience of patients with lymphoedema undergoing a period of compression bandaging in the UK and Canada using the 3M™ Coban™ 2 compression system.

This article reports on a qualitative study that explored the experience of patients who have undergone a period of complete decongestive therapy using the 3M™ Coban™ 2 compression system (Coban 2 system). Qualitative data were collected from 12 patients from the UK and 8 from Canada with a range of presentations of lymphoedema. Single semi-structured interviews were used and participants were asked questions relating to their experience of diagnosis, the impact of lymphoedema on their lives, previous treatment using multilayer lymphoedema bandaging and their experiences of the 3M™ Coban™ 2 system. Treatment with multilayer lymphoedema bandaging was seen as constraining in that it was tiring, time consuming, heavy, bulky and led to feelings of clumsiness and a restricted life. Treatment with the 3M™ Coban™ 2 system was reported as enabling in that it was quicker and easier to apply, increased mobility, enhanced patient confidence and provided a sense of control and well-being. The article also explores how aspects of the 3M™ Coban™ 2 system might be improved from the patient's point of view.

Non healing leg ulcers and the nurse-patient relationship. Part 2: the nurse's perspective.

This paper focuses on the experiences of four community nursing teams responsible for the care of a small group of patients with leg ulcers who they had identified as 'non healing' and 'non concordant' with treatment. Four focus groups were held, one with each community nursing team, to examine the issues underpinning the labelling of these patients as 'non healing' and 'non concordant'. There was an expectation that patients should obey treatment instructions and be positive and participative and there was a strongly felt link between concordance and healing of the ulcer. However, limited non concordance was considered to be acceptable as long as the patient continued to progress. Nurses viewed ulcer healing as the priority even though this was unlikely and differed from the patient's priority of achieving comfort. Patient behaviour was an important determinant of labelling by nurses. Efforts by patients to exert some control over their own care were met with them being viewed as 'difficult', 'uncooperative' and 'non compliant'. There was also a pervasive level of stress, distress and anxiety among the community nurse participants, which led to distancing and blaming that undermined the nurse-patient relationship. At the centre of a successful nurse-patient relationship is a non judgemental partnership that can often be challenging to achieve especially when ulcers fail to heal.

Non healing leg ulcers and the nurse-patient relationship. Part 1: the patient's perspective.

This paper reports on a study that explored the relationship between patients with non healing leg ulcers and the nurses providing their care in a community setting. Qualitative data were collected from five patients whose leg ulcers were healing and who had been identified as experiencing difficulty with adhering to treatment. Single semi-structured interviews were used and participants were asked to share key events in their care prompted by the question 'how are you coping with your leg ulcer?' Striving to maintain balance by developing strategies to cope with the physical effects of an unhealed ulcer as well as ensuring the care they received met their unique needs was central to the experience of participants. From the participant's perspective, however, nurses often showed little understanding of the complex issues patients were grappling with. Patients, in viewing nurse behaviour, often concluded that leg ulceration was an insignificant problem that nurses had little interest in. The need to establish and to maintain a trusting therapeutic relationship with patients is essential if they are to feel they matter, that they are important as individuals and that their suffering can be eased by sensitive collaboration.

Social richness, socio-technical tension and the virtual commissioning of NHS research.

BACKGROUND: This paper draws on a recent study that evaluated the process of commissioning NHS funded research using virtual committees. Building on an earlier paper that reported our evaluation, here we focus on the effects of asynchronous computer mediated communication (CMC) when used to support group work. METHODS: To do this the discussion focuses on how CMC affected three key group factors, building relationships, group cohesion and group commitment. The notion of socio-technical tension is elaborated and the paper explores how social richness can act to counter the socially impoverishing and time extending effects of asynchronous CMC. RESULTS: We argue that social richness in this context results from the presence of five principal influences. These are: a dynamic range of participant aspirations and personal agendas; participant commitment to and identification with the work and ideals of the group; a rich diversity of social, professional and work-related backgrounds; a website designed to enhance participation and interaction and the mediating effects of an effective chairperson. CONCLUSION: If virtual work groups are to be used by the NHS in the future, then there is a need for more research into the role of social context and its relationship to the effectiveness of newly formed virtual groups. Equally as important are studies that examine the effects of socio-technical interaction on groups undertaking tasks in the real world of work.

Evaluation of a 'virtual' approach to commissioning health research.

BACKGROUND: The objective of this study was to evaluate the implementation of a 'virtual' (computer-mediated) approach to health research commissioning. This had been introduced experimentally in a DOH programme--the 'Health of Londoners Programme'--in order to assess whether is could enhance the accessibility, transparency and effectiveness of commissioning health research. The study described here was commissioned to evaluate this novel approach, addressing these key questions. METHODS: A naturalistic-experimental approach was combined with principles of action research. The different commissioning groups within the programme were randomly allocated to either the traditional face-to-face mode or the novel 'virtual' mode. Mainly qualitative data were gathered including observation of all (virtual and face-to-face) commissioning meetings; semi-structured interviews with a purposive sample of participants (n = 32/66); structured questionnaires and interviews with lead researchers of early commissioned projects. All members of the commissioning groups were invited to participate in collaborative enquiry groups which participated actively in the analysis process. RESULTS: The virtual process functioned as intended, reaching timely and relatively transparent decisions that participants had confidence in. Despite the potential for greater access using a virtual approach, few differences were found in practice. Key advantages included physical access, a more flexible and extended time period for discussion, reflection and information gathering and a more transparent decision-making process. Key challenges were the reduction of social cues available in a computer-mediated medium that require novel ways of ensuring appropriate dialogue, feedback and interaction. However, in both modes, the process was influenced by a range of factors and was not technology driven. CONCLUSION: There is potential for using computer-mediated communication within the research commissioning process. This may enhance access, effectiveness and transparency of decision-making but further development is needed for this to be fully realised, including attention to process as well as the computer-mediated medium.

Illness behavior and social support in patients with chronic venous ulcers.

Venous ulcers are a chronic and costly condition for providers and payors, as well as for patients, particularly the elderly. To examine the association between chronic venous ulceration, illness behavior, and levels of social support, patients drawn from a separate clinical trial (N = 74) were interviewed using the Illness Behaviour Questionnaire and the Social Support Questionnaire. Results indicate that women had higher hypochondriasis (1.70 versus 1.03, P = 0.19), affective disturbance (2.70 versus 1.42, P = 0.08), and number of supports (Social Support Questionnaire, 2.41 versus 1.81, P = 0.056) than men, although no score achieved a standard level of statistical significance. Patients under 70 years of age had significantly higher hypochondriasis (1.96 versus 1.17, P = 0.021) and irritability (1.38 versus 0.90, P = 0.026) scores than those older than 70 years, although denial was significantly higher in those older than 70 years (3.97 versus 3.46, P = 0.045). The level of satisfaction with social support was significantly higher in those under 70 years of age (5.13 versus 4.97, P = 0.042). These results underscore the psychological and social cost imposed by chronic venous ulceration on older women. They also support previous studies implying a greater psychological burden on younger patients. The association between illness behavior and social support remains unclear, but examining the association between illness behavior and social support among patients with venous ulceration provides an opportunity to increase understanding of the psychological, physical, and social dynamics of this chronic condition.

Health-related quality of life with lymphoedema: a review of the literature.

This article reviews qualitative and quantitative studies that evaluate health-related quality of life (HRQoL) in lymphoedema. Qualitative studies reveal a number of factors that can affect HRQoL. These include a lack of understanding of lymphoedema by health professionals and poor information provided to patients. Emotional responses include shock, fear, annoyance, frustration and negative body image. Treatment can be costly in terms of time and disruption to lifestyle. Quantitative studies show that patients with lymphoedema experience greater levels of functional impairment, poorer psychological adjustment, anxiety and depression than the general population. Increased limb volume is poorly related to the impact of lymphoedema on the patient. Factors leading to deficits in quality of life include the frequency of acute inflammatory episodes, the presence of pain, skin quality, lymphoedema in the dominant hand and reduced limb mobility. There is some evidence that the adoption of patient-centred guidelines can improve quality of life in patients with breast-cancer-related lymphoedema. HRQoL is an important outcome in the management of patients with lymphoedema. Further studies must examine how lymphoedema impacts on patients other than those with breast-cancer-related lymphoedema and the consequences to patients of different approaches to care.

Health-related quality of life with chronic leg ulceration.

Chronic leg ulceration is a major cause of morbidity in the elderly. The existing evidence on the evaluation of health-related quality of life for patients suffering from this condition is reviewed. Research evidence was categorized into qualitative research; development and validation of disease-specific tools; cross sectional quantitative methods; and longitudinal and outcomes studies. Major themes associated with leg ulceration include ulcer pain, poor sleep quality, mobility deficit and the resulting consequences on the patients' social lives. Patients frequently adapt their lifestyles to avoid situations that may lead to further ulceration. While elderly women experience the poorest quality of life, it appears that leg ulceration has the greatest impact on young men. Greatest improvements over time are achieved for patients whose ulcers heal completely. Leg ulceration has a major impact on patients' health-related quality of life. Studies must consider this as an important outcome, particularly when complete healing is unlikely.