Anne Arber

Reflexivity: A challenge for the researcher as practitioner?

In this article I focus on what it means to have a dual identity as a practitioner and a researcher within an ethnographic research study in the context of a hospice. I discuss moments when I experienced the tension between the roles of researcher and practitioner during fieldwork. I discuss some of the difficulties of managing the boundary between closeness and distance in terms of the observer and participant roles adopted. I explore the challenges for the researcher with a dual identity and how methods of reflexive accounting enhance the credibility of such a study. Thus I document the lived experience of my fieldwork; my thoughts and feelings when the insider and outsider identities collide; and how the identity crisis that resulted was resolved.In this article I focus on what it means to have a dual identity as a practitioner and a researcher within an ethnographic research study in the context of a hospice. I discuss moments when I experienced the tension between the roles of researcher and practitioner during fieldwork. I discuss some of the difficulties of managing the boundary between closeness and distance in terms of the observer and participant roles adopted. I explore the challenges for the researcher with a dual identity and how methods of reflexive accounting enhance the credibility of such a study. Thus I document the lived experience of my fieldwork; my thoughts and feelings when the insider and outsider identities collide; and how the identity crisis that resulted was resolved.

Malignant fungating wounds: a survey of nurses' clinical practice in Switzerland.

BACKGROUND The care of individuals with a fungating malignant wound represents challenging cancer management not only for patients and their families but also for health care professionals. Understanding the difficulties faced by nurses when they care for patients with such a wound can help guide practice and service development. The aim of this study was to investigate how many patients with a malignant fungating wounds did nurses see and what kind of difficulties in caring for patients with a malignant fungating wound did nurses experience. METHOD A survey was conducted in three different geographical regions of Switzerland over a 6month period. RESULTS A total of 269 nurses participated in this survey. The nurses reported the prevalence rate of fungating wounds as 6.6%. There was a difference in perceived prevalence between the regions. The most frequent location for such wounds was the breast in women with breast cancer. The appearance was mainly ulcerating. The main difficulties nurses experienced in the management of patients related to malodour, pain and difficulties in applying the dressings to the wound. The most frequently used dressing was an absorbent dressing. The difficulties nurses had and what kind of dressings they used were closely connected. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE Strategies need to be explored to help understand the diverse range of wound problems including physical and psychological components. Furthermore, there is a need to raise the awareness of existing wound management specialists in the support of cancer patients.

Malignant fungating wounds – The meaning of living in an unbounded body

BACKGROUND Malignant fungating wounds may have significant physiological, psychological and emotional consequences on patients and their families. This study focuses on understanding the lived experiences of patients with a malignant fungating breast wound and their informal carers. METHOD The methodological framework of interpretative phenomenological approach according to Heidegger was used. Nine patients were interviewed from January until November 2009. RESULTS The results demonstrate that most of the patients and their informal carers were on their own while struggling with the erosion of their physical boundaries. The women report a lack of information and advice about how to manage the wound as well as the physical and social limitations imposed on them because of copious wound exudate, odour and bleeding. The women used many different methods and approaches to maintain the boundedness of the body. CONCLUSION This study contributes to understanding that losing control over the body meant for the women losing control over themselves and their lives. The unboundedness was demonstrated through the symptom experiences. Therefore the care of women needs strategies that are integrated in a palliative, holistic, empathic approach. In particular skills for palliative wound care among medical and nursing staff need to be developed as the women and their carers report a lack of information and advice about how to manage the wound as well as the physical limitations and psychosocial consequences of struggling to maintain the boundedness of the body.

Team Meetings in Specialist Palliative Care: Asking Questions as a Strategy Within Interprofessional Interaction

In this article, I explore what happens when specialist palliative care staff meet together to discuss patients under their care. Many studies (e.g., Atkinson) have discussed how health care practitioners in various settings use rhetorical strategies when presenting cases in situations such as ward rounds and team meetings. Strategies for arguing and persuading are central to medical practice in the interprofessional context. The context of specialist palliative care is an interesting place for research, as there is a history of patient-centered holistic approaches to care, within a multidisciplinary context, that is interdisciplinary in its focus, structure, and practice (e.g., Saunders). This article examines the rhetorical accomplishment of teamwork in specialist palliative care settings.

Restoring a sense of wellness following colorectal cancer: a grounded theory.

AIM   This paper reports a study to develop a grounded theory to explain the experience of recovery following surgery for colorectal cancer. BACKGROUND   Studies have adopted a biomedical framework to measure quality of life and symptom distress following surgery for colorectal cancer. These studies suggest that symptoms of pain, insomnia and fatigue, may persist for many months following treatment. Fewer studies have considered the individuals experiences and perspective of the emotional, social and cultural aspects of recovery. METHODS   A longitudinal study using grounded theory was conducted with 12 individuals, who had received surgery for colorectal cancer. Semi-structured interviews were conducted at four time points over 1 year following surgery, between 2007 and 2009. Grounded theory analysis was undertaken using Strauss and Corbins framework. FINDINGS   Recovery is described in three phases: disrupting the self; repairing the self; restoring the self. The core category is Restoring a sense of wellness; fostered through awareness and enjoyment of the physical, emotional, spiritual and social aspects of life. A sense of wellness exists as a duality with a sense of illness, where both perspectives may co-exist but one usually takes precedence. A sense of illness pervades when the individual is preoccupied with illness and the illness continues to disrupt their daily life. CONCLUSION   Recovery takes time and energy, particularly when the individual is at home and in relative isolation from health professionals. Opportunities exist for nurses to provide information and support to facilitate the individual in their progress towards achieving a sense of wellness.

‘It's all bad news’: the first 3 months following a diagnosis of malignant pleural mesothelioma

This study explores patients experience during the first 3 months following a diagnosis of malignant pleural mesothelioma.

‘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.

Caring for a loved one with a malignant fungating wound.

PurposeCaring for a loved one with a malignant fungating wound is very challenging and causes extreme physical and psychological distress. The aim of this study was to explore the experiences of carers who care for a loved one with a fungating breast wound.MethodTo explore the lived experiences of carers, a methodological framework using Heideggerian hermeneutic phenomenology and semi-structured interviews was used. Seven carers were interviewed from January until November 2009.ResultsHaving to deal with a situation of a loved one with a visible cancer was hard for all the carers. The visibility of the cancer was one of the most shocking aspects to deal with from the perspective of the patient and the carer. The presence of the visible wound and a cancer at an advanced stage contributed to a change in the relationship and extreme suffering for both the patient and the carer. Despite many problems such as wound odour and copious discharge from the wound, which was difficult to control, carers did their best to help their loved one with the wound. Gradually, the wound became the centre of the patient and carer’s life, and a great deal of time was spent trying to control the wound symptoms. All carers managed the wound on their own without help and advice from health care practitioners. For all of them, it was a major burden and they felt isolated.ConclusionThis study contributes to an understanding that the care of women and their carers needs strategies that are integrated in palliative wound care that takes a holistic and empathic approach that responds to patients’ and carers’ psychosocial and emotional needs and a practical need for information to help carers assist in managing the wound-related symptoms.

Generosity and the Moral Imagination in the Practice of Teamwork

In this article we discuss generosity, a virtue that has received little attention in relation to nursing practice. We make a distinction between material generosity and generosity of spirit. The moral imagination is central to our analysis of generosity of spirit. We discuss data taken from a team meeting and identify the components of generosity, for example, the role of the moral imagination in interrupting value judgements, protecting the identity of the chronically ill patient through use of the psychosocial format, and displaying empathetic maturity. The talk of the team enables us to understand and make visible the link between generosity, moral imagination and identity construction. The topic of generosity, although contextualized in a UK setting, has relevance to other cultural contexts.

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 patients 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.