Marilynne Kirshbaum

The development, implementation and evaluation of guidelines for the management of breast cancer related lymphoedema

A project was funded by the UKs Department of Health to develop national guidelines for breast cancer related lymphoedema using a Consensus Strategy. This involved the organization of a consensus conference with a multidisciplinary panel of experts, an extensive literature review, the production of clinical guidelines and the implementation of the guidelines at three pilot sites (breast unit, hospice and community). The EORTC QLQ-30, MOS SF-36 and a standard assessment form were used to evaluate patient outcome. Diaries and semi-structured interviews were used to elicit data on practitioner compliance and practical issues of implementing change using clinical practice guidelines. Results showed stable or improved scores in all categories of physical, social and emotional functioning and a stable or measured decrease in limb volume for 75% of the sample. Qualitative data obtained from practitioners demonstrated high levels of compliance from practitioners and patients and offers useful recommendations. This project highlights the importance of raising awareness of lymphoedema through the development and utilization of research-based, patient-centred guidelines.

Translation to Practice: A Randomised, Controlled Study of an Evidence‐Based Booklet for Breast‐Care Nurses in the United Kingdom

BACKGROUND In the United Kingdom (UK), it was documented that a problem of knowledge transfer existed within the speciality of breast-cancer care, thus depriving patients of receiving optimal care. Despite increasingly robust research evidence indicating recommendation of whole body exercise for people affected by breast cancer, commensurate changes to practice were not noted amongst breast-care nurses (BCNs). AIM To evaluate the effect of a targeted booklet, Exercise and Breast Cancer: A Booklet for Breast-Care Nurses, on changes in knowledge, reported practice, and attitudes of BCNs in the UK. METHOD A prospective, experimental approach was used for designing a pre- and post-test randomised controlled study. Comparisons of knowledge, reported practice, and attitudes based on responses to a questionnaire were made at two time-points in two groups of BCNs (control and experimental). The unit of randomisation and analysis was hospital clusters of BCNs. The sample comprised 92 nurses from 62 hospitals. Analysis consisted of descriptive statistics and clustered regression techniques: clustered logistic regression for knowledge items, clustered linear regression for knowledge scores, ologit for attitude and reported practice items, and clustered multiple regression for paired and multiple variable analysis. RESULTS A statistically significant increase in knowledge and changes in reported practice and attitudes were found. Robust variables affecting knowledge acquisition were: promotion of health, promotion of exercise, and understanding how exercise can reduce cancer-related fatigue. DISCUSSION The study has shown that evidence-based printed material, such as an information booklet, can be used as an effective research dissemination method when developed for needs, values, and context of a target audience. CONCLUSIONS This practical approach to research dissemination could be replicated and applied to other groups of nurses.

The perceived impact of advanced practice nurses (APNs) on promoting evidence-based practice amongst frontline nurses: findings from a collective case study

The aim of this study was to explore the perceived impact of advanced practice nurses in promoting evidence-based practice amongst frontline nurses. A collective instrumental case study was undertaken involving five extended case studies and eighteen short case studies in a range of hospital and primary care settings across seven Strategic Health Authorities in England. The study participants were a purposive sample of 23 advanced practice nurses selected to represent a range of settings, clinical specialities, organisational responsibilities and ways of working. In-depth interviews were undertaken with the advanced practice nurse and up to 10 interviews with health care professionals with whom they worked. For the extended case studies, non-participant observation and follow-up interviews were also undertaken. Data analysis drew on the principles of the Framework approach. From the perspectives of the participants, these advanced practice nurses enhanced the ability of frontline nurses to provide evidence-based care. They improved the competence, knowledge and skills of frontline nurses and empowered them to deliver care which they considered to be safer, holistic, more timely and of a higher standard. This is likely to have a positive effect on patient outcomes and on patient experience. However, this impact is inherently hard to capture.

Comparing the Meanings of Fatigue in Individuals With Cancer in Thailand and Canada

Background: Illness is experienced in social contexts; its meaning is rooted in local beliefs and values as well as one’s personal and family situation. Health professionals are steeped in knowledge of disease but know much less about illness. Objectives: The objective of the study was to learn more about the social construction of illness by comparing the meanings of fatigue in Thai and Canadian individuals with cancer. Methods: Using an ethnoscience design, 10 Thai adults receiving chemotherapy for advanced lung cancer or colorectal cancer were interviewed twice. They were asked to sort words and phrases about fatigue from their first interview using Q-sort, triadic, and dyadic approaches; to name each pile; and to describe the similarities and differences between the piles. The card sorts were used to understand the relationships among key ideas in each interview. A table summarizing the card sorts was constructed, and patterns in the data were identified. Results: Two segregates in the Thai data were identified: essential/constant and intermittent, with essential/constant including 2 segregates (feeble and altered cognition), and intermittent including 2 segregates (loss of mental strength and difficulty sleeping). The primary meanings of fatigue in the Thai data were related to temporality, whereas the primary meanings of fatigue in the Canadian data were related to the location of the fatigue (mind/body). Conclusion: These findings help us understand the social construction of fatigue, a common symptom in cancer. Implications for Practice: Further research in relation to links between fatigue and other related-symptoms is needed with the goal of developing cross-cultural interventions for managing fatigue in the future.

Neutropenia: more than a low neutrophil count

Aggressive treatments are presently being prescribed for an increasingly diverse population of persons with cancer. Severe myelosuppression is an expected adverse event for many chemotherapy and radiotherapy regimens. In this paper, neutropenia is presented and explained in the context of haematopoiesis. Management strategies within the context of specialist in-patient units, out-patient departments and the community are reviewed. Assessment of risk factors, prevention measures, vigilant observations and an awareness of the psychosocial implications are highlighted as areas of importance.

Open Access Follow-up Care for Early Breast Cancer: A Randomised Controlled Quality of Life Analysis

This study evaluated the acceptability of a supportive model of follow‐up. One hundred and twelve women recovering from breast cancer were randomised to receive standard breast clinic aftercare (Control n = 56) or on demand by open access aftercare by breast care nurses (Intervention n = 56). Participants attended a support‐based psycho‐educational programme delivered in four half‐day group sessions. Three quality of life questionnaires (EORTC QLQ‐C30, QLQ‐BR23, HADS) were administered at baseline and 6‐monthly intervals for 2 years. Multilevel linear regression modelling methods were used for evaluation. Age was found to be a statistically significant predictor of quality of life in several sub‐scales. Increasing age was negatively associated with sexual functioning, systematic therapy side effects and physical functioning, and positively associated with future perspective. Aftercare assignment was not found to be a statistically significant predictor. Women treated for early breast cancer were not disadvantaged by allocation to the open access supportive care model in terms of quality of life experienced. The model for follow‐up was demonstrated to be a feasible alternative to routinised hospital‐based follow‐up and adds to the evidence for stratified follow‐up for low‐risk cancer patients, incorporating self‐management education. Stratified follow‐up pathways are viewed as a preferable approach.

Understanding the meaning of fatigue at the end of life: An ethnoscience approach

PURPOSE Fatigue is a devastating state of body and mind associated with distress at the end of life. We report the results of the third in a series of papers outlining a novel approach we have developed for understanding the meaning of fatigue by exploring how this meaning is shaped by beliefs and values. The aims of the study were to examine the perception and experiences of fatigue held by patients attending a hospice in England; identify the behavioural patterns that distinguish fatigue from tiredness and exhaustion; provide conceptual definitions of tiredness, fatigue and exhaustion. METHOD An Ethnoscience design was selected. The sample comprised nine people who attended a hospice between May and December 2009. Inclusion criteria included: at least 18 years of age, experiencing fatigue, able to provide informed consent and resident in the selected city in northern England for 10 years. Data were collected from two consecutive semi-structured interviews for each participant. RESULTS We found that tiredness, fatigue and exhaustion are markers of progressive functional decline. Fatigue had two dimensions: 1) Mental Challenge, which included: emotional effects, cognitive realisation of decline and mental tenacity and 2) Physical Challenge, which included: limitations in leisure activities, limitations in functional roles and re-patterning routines. CONCLUSIONS This study provides evidence that symptom experience is socially constructed, which has potential implications for the development of effective interventions.

The beneficial attributes of visual art-making in cancer care: An integrative review.

We seek to understand what is known about the use of visual art-making for people who have a cancer diagnosis, and to explore how art-making may help address fatigue in the cancer care context. Art-making involves creating art or craft alone or in a group and does not require an art-therapist as the emphasis is on creativity rather than an overt therapeutic intention. An integrative review was undertaken of qualitative, quantitative and mixed-method studies on art-making for people who have cancer, at any stage of treatment or recovery. An adapted version of Kaplans Attention Restoration Theory (ART) was used to interpret the themes found in the literature. Fifteen studies were reviewed. Nine concerned art-making programmes and six were focused on individual, non-facilitated art-making. Review results suggested that programme-based art-making may provide participants with opportunities for learning about self, support, enjoyment and distraction. Individual art-making can provides learning about self, diversion and pleasure, self-management of pain, a sense of control, and enhanced social relationships. When viewed through the lens of ART, art-making can be understood as an energy-restoring activity that has the potential to enhance the lives of people with a diagnosis of cancer.

Art in cancer care: Exploring the role of visual art-making programs within an Energy Restoration Framework

PURPOSE In contrast to art-therapy, little is known about the role of art-making for people who have been diagnosed with cancer, and even less is known about program-based art-making. This study explored the experience of participation in a visual art-making program for people during and after cancer treatment in the Northern Territory of Australia. METHOD A longitudinal, qualitative, single cohort study was undertaken. Eight women diagnosed with breast and/or ovarian cancer participated in weekly art-making sessions over eight weeks, facilitated by two professional artists. Data were collected before, during and after the sessions by interviews and group discussions. The Energy Restoration Framework was used to document and analyse the benefits of participation in terms of the a priori themes of: Expansive, Belonging, Nurturing and Purposeful. RESULTS The four a priori themes were retained and an additional attribute of an energy restoration activity called Stimulating was added, along with sub-themes, which broadened and deepened understanding of the art-making experience within cancer care. CONCLUSIONS Involvement in an activity that was expansive, new, beautiful and fascinating was highly valued in addition to the appreciation for being with and belonging to a supportive and accepting group facilitated by dynamic artists. There is much scope for continued research and promotion of art-making programs as an adjunct to cancer treatment.

An exploratory study of reiki experiences in women who have cancer

AIMS To explore the perceptions and experiences of reiki for women who have cancer and identify outcome measures for an intervention study. METHODS A cross-sectional qualitative study of 10 women who had received reiki after cancer treatment was conducted. Interviews were audiotaped, transcribed and coded using framework analysis. RESULTS Key themes identified were: limited understanding of reiki prior to receiving any reiki; release of emotional strain during reiki-feelings of a release of energy, a clearing of the mind from cancer, inner peace/relaxation, hope, a sense of being cared for; experience of physical sensations during reiki, such as pain relief and tingling; physical, emotional and cognitive improvements after reiki, such as improved sleep, a sense of calm and peace, reduced depression and improved self-confidence. CONCLUSION Findings suggest that reiki could be a beneficial tool in the self-management of quality of life issues for women who have cancer.