Dr Anne Arber
Visiting Reader in Cancer and Palliative Care
PhD, MSc, RN
Biography
Anne Arber has a clinical and research background in supportive cancer care. Her research focuses on supportive care for patients with cancer and their carers; including symptom support using e-health and patient and public involvement in cancer and palliative care research. Anne also conducts research in Advanced Communication Skills.
Anne is a highly experienced PhD supervisor and was awarded the Vice-Chancellors Award for Post Graduate Research Supervisor of the Year 2018 in the Faculty of Health and Medical Sciences; in recognition of creating the most supportive, stimulating and inspirational research environment. She combines research and teaching as integral parts of her role within the university.
She has research expertise in grounded theory, ethnography and mixed methods research. She is a trainer in Advanced Communication Skills and has been invited to run workshops in advanced communication in the UK and in Europe.
She has examined many doctoral thesis as both an internal and external examiner across the UK and internationally.
Research
Research interests
- Supportive care of patients with advanced cancer
- Carers, and family members affected by cancer
- Communication and breaking bad news
- Patient and public involvement in research
Ongoing Research Projects
- Closing the engagement gap: creating Research Champions to promote patient and public involvement/engagement in mesothelioma research. The June Hancock Mesothelioma Research Fund 2019-2020
- End of life planning for young people with learning disabilities. Funded by Health Education England 2017-18
- Real time symptom assessment for patients with malignant pleural mesothelioma. Funded by British Lung Foundation September 2016-2018
Research Projects
- Peer support for carer of people with advanced cancer, University of Surrey Research Support Fund. April 2016
- A Delphi study on the research priorities of UK oncology nurses and patients. Co-researcher with Professor Emma Ream 2015. Funded by United Kingdom Oncology Nursing Society
- Think family project (November 2013 - August 2014) A project related to pre bereavement support for children who have a parent with cancer in collaboration with Frimley Park NHS Trust. Principal Investigator. Funded by Macmillan Cancer Support.
- A study on fostering empathy between students and older people - a practical approach (AFRESH). Co-researcher funded by Averil Osborne Fund March 2012-October 2012.
- Nurses' Decision-Making Practices at the End of Life in the Intensive Care Unit: A cross-cultural exploration. Co - researcher with Brazil, Germany and Ireland (2012-2013).
- Carers in the 21st Century. Economic and Social Research Council Seminar Series (October 2012-September 2013).
- Information giving and patients receiving oral chemotherapy for Multiple Myeloma (January 09-June 11 Awarded by Myeloma UK).
- A project to examine the patient's experience of their care pathway following a diagnosis of mesothelioma. Awarded by Surrey, West Sussex and Hampshire Cancer Network (April 2008-June 2009).
- A project to explore the needs of carers of patients with a malignant brain tumour (April 2006-August 2007).
My teaching
Module Leader
- Research design and methodology (Master's Level NURM141)
- Advanced Communication Skills (Master's/Degree Level NURM105/NUR3206)
- Challenges in Pain Management (Master's Level/Degree Level NURM108/NUR3310)
Current doctoral students
- Isaac Badu Appiah: Traditional herbalists and cancer in Ghana.
- Emma Wadey: An exploration of the mental health and well-being of those bereaved by suicide
- Penny Franklin: Connecting with parents and their dependent children
Doctoral Students who have completed
- Michelle King-Okoye: Silence among Afro-Caribbean men diagnosed with prostate cancer in Trinidad and Tobago: a grounded theory study
- Nicola Ayers: An ethnography of the palliative care and dying at home in Ethiopia.
- Nicola Beech: Restoring a sense of wellness following colorectal cancer: a grounded theory
- Elizabeth Dunn: The lived experience of returning home following allogeneic stem cell transplantation.
- Diane Laverty: Respite care for people with neuro-degenerative diseases
- Sebastian Probst: Malignant fungating wounds- experiences of living in and with an unbounded body
Departmental duties
- Chair of Faculty Research Ethics Committee
- Chair Service Users and Carers Group
- Member of the NCRI sub group for Quality of Life
- Member of the steering group Jigsaw South East, Pre Bereavement Project Group
- Member of the Race Equality Group
My publications
Publications
Background: A positive aspect of pain is that it warns us of potential or actual bodily damage but if it persists its benefits are lost and it becomes a chronic condition with disabling and costly consequences. Pain is a common symptom suffered by people with cancer but it is unclear if people with cancer pain require further help from healthcare professionals in order to treat their pain holistically using a biopsychosocial approach. Purpose: To identified the unmet supportive care needs of people with cancer pain; and to explore the relationship between symptoms such as pain and unmet supportive care needs. Method: A quantitative approach has been used to explore the unmet supportive care needs of people with cancer pain. One hundred and sixty two people, who required around the clock analgesia, completed a validated needs assessment tool, at two Time Points, in order to investigate whether they had any issues or problems that they required further assistance with over a 2 month period. The data was analysed using descriptive statistics and backwards logistic regression. Findings: Eighty percent of the participants had at least 1 unmet need. The main areas where people needed more help were in the psychological and physical daily living domains. Psychologically, people had concerns about their loved ones and uncertainly about their future. Physically, people wanted more help with fatigue and not being able to do their usual activities. People with uncontrolled pain and breakthrough pain equally needed as much help in these areas, emphasising that even if people only have intermittent pain it has a huge impact on a person?s psychological and physical wellbeing. The participants? unmet needs improved over time but this was not dependant on a change in the control of pain. Conclusion: The psychosocial needs of people with cancer pain are not being met if they have uncontrolled or breakthrough pain. Pain assessments should include an assessment of unmet needs. However, due to the subject nature of unmet needs it is difficult to demonstrate that that inventions, that are intended to reduce unmet needs, are effective.
Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K (2010) A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services., Int J Palliat Nurs 16 (1) pp. 24-30 Mark Allen Healthcare
To investigate the symptom experience, access to supportive care services and rehabilitation of patients with a primary malignant brain tumour (PMBT) and their carers.
Arber A (2007) "Pain talk" in hospice and palliative care team meetings: An ethnography,INTERNATIONAL JOURNAL OF NURSING STUDIES 44 (6) pp. 916-926 PERGAMON-ELSEVIER SCIENCE LTD
Probst S, Arber A, Faithfull S (2012) Malignant fungating wounds - The meaning of living in an unbounded body.,Eur J Oncol Nurs
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.
Dunn L, Arber A, Gallagher A (2015) Safe in the bubble, out into the unknown: Returning home following allogeneic stem cell transplantation: A phenomenological study,EUROPEAN JOURNAL OF CANCER 51 pp. S660-S660 ELSEVIER SCI LTD
Hughes N, Arber A (2008) The lived experience of patients with pleural mesothelioma., Int J Palliat Nurs 14 (2) pp. 66-71
This paper reports on a research study of five patients diagnosed with mesothelioma. The study used a phenomenological approach to explore patients' lived experience using in-depth interviews. The findings identify that patients have many unmet psychosocial and emotional needs and that there was a lack of information provided to patients about specialist supportive and palliative care services. A number of the patients found specialist supportive care by chance rather than by referral. In addition, patients were involved in complex medico-legal matters in relation to asbestos exposure, and this was an additional burden for them and their spouse or carer. A feeling of social isolation was also reported and a number of patients would welcome the opportunity to meet with other people in the same situation as themselves. In conclusion, there is a lack of attention to the emotional needs of this group of patients, which means that supportive care resources are not being accessed in a timely and flexible manner.
King-Okoye M, Arber A (2014) 'It stays with me': The experiences of second- and third-year student nurses when caring for patients with cancer, European Journal of Cancer Care 23 (4) pp. 441-449
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. © 2013 John Wiley & Sons Ltd.
Gamlen E, Arber A (2013) First assessments by specialist cancer nurses in the community: an ethnography,European Journal of Oncology Nursing (EJON) 17, (6) pp. 695-902 Elsevier
Purpose: The aim of the study is to explore how specialist cancer nurses carry out first assessments of patients in the community, their use of the Symptoms and Concerns Checklist (SCC) and their views on first assessments. Methods & Sample: An ethnographic approach was taken. The data were collected by use of non-participant observation of specialist nurses carrying out a first assessment of patients with cancer, followed by semi-structured interviews with six specialist nurses. Data were analysed using iterative thematic analysis. Key results: All the specialist nurses recognised the value of facilitating the patients? narrative. Use of the SCC was seen to jar with the overall theme of building relationships during the first assessment visit. It was recognised by the specialist nurses that the SCC was beneficial in prompting the patients to discuss psycho-social concerns. Conclusions: This study gives insight into the conflict and ambiguity for specialist nurses when using the SCC during the first assessment visit. It confirms the SCC as beneficial in cueing some patients to identify specific concerns and for these concerns to be recognised by the specialist nurses.
Laverty D, Faithfull S, Arber A (2013) A CASE REVIEW OF RESPITE CARE AT AN INNER LONDON HOSPICE,European Journal of Palliative Care 20 (2) pp. 72-76 Hayward Medical Communications
Respite care is poorly developed despite the emphasis on allowing patients to be cared for in their preferred place of care ? often their own home. It is essential to support informal carers continuing in their roles by providing adequate and timely relief from their duties. Patients who live alone with no informal carers should also be given the opportunity to have a change from their context of care. Respite care programmes should involve referral criteria, multi-disciplinary triaging, pre-determined admission and discharge dates, a thorough review of the patient and their caring context and a structured programme of care and sign posting.
Arber A, Hutson N, de Vries K, Guerrero D (2013) Finding the right kind of support: A study of carers of those with a primary malignant brain tumour, European Journal of Oncology Nursing 17 (1) pp. 52-58
Purpose: Caring for someone with a primary malignant brain tumour is very demanding due to the dynamic situation involving changes to personality, short term memory loss and changes in family relationships. The purpose of this qualitative study is to examine the support needs of carers of those with a primary malignant brain tumour. Methods & sample: 22 Carers who were currently caring for someone with a primary malignant brain tumour were recruited from one specialist cancer centre in the south east of England. The study took a grounded theory approach and data were analysed using the constant comparative method generating categories and themes that are grounded in the data. Key results: A key concept that emerged from the data was: 'Connecting on the caring journey'. The themes that emerged from the key concept were: building helpful relationships; safe places and comfort zones; and threats to connecting. Conclusions: Many carers do find a great deal of support within the family and from their relationships with friends as well as from cancer and carer support groups. However this is by no means universal and many carers experience a lack of timely access to good quality supportive care services. For some carers supportive care services do not meet their expectations so they spend valuable time searching for the connections they need to continue to care combined with feeling frustrated and under pressure. © 2012 Elsevier Ltd.
Gregg N, Arber A, Ashkan K, Brazil L, Bhangoo R, Beaney R, Gullan R, Hurwitz V, Costello A, Yágüez L (2014) Neurobehavioural changes in patients following brain tumour: patients and relatives perspective,Supportive Care in Cancer Springer
Background: 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 non-frontal tumours and 25 of their relatives, were analysed. Results: Patients with frontal tumours rated themselves significantly higher than patients with non-frontal 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 non-frontal 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 non-frontal 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.
Gamlen E, Arber A (2013) First assessments by specialist cancer nurses in the community: An ethnography, European Journal of Oncology Nursing 17 (6) pp. 797-801
Purpose: The aim of the study is to explore how specialist cancer nurses carry out first assessments of patients in the community, their use of the Symptoms and Concerns Checklist (SCC) and their views on first assessments. Methods & sample: An ethnographic approach was taken. The data were collected by use of non-participant observation of specialist nurses carrying out a first assessment of patients with cancer, followed by semi-structured interviews with six specialist nurses. Data were analysed using iterative thematic analysis. Key results: All the specialist nurses recognised the value of facilitating the patients' narrative. Use of the SCC was seen to jar with the overall theme of building relationships during the first assessment visit. It was recognised by the specialist nurses that the SCC was beneficial in prompting the patients to discuss psycho-social concerns. Conclusions: This study gives insight into the conflict and ambiguity for specialist nurses when using the SCC during the first assessment visit. It confirms the SCC as beneficial in cueing some patients to identify specific concerns and for these concerns to be recognised by the specialist nurses. © 2013 Elsevier Ltd.
Probst, S, Arber A, Trojan A, Faithfull S (2012) Caring for a loved one with a malignant fungating wound,Support Care Cancer 20 pp. 3065-3070 Springer-Verlag
Purpose: Caring 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. Method: To 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. Results: Having 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. Conclusion: This 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.
Li S, Arber A (2006) The construction of troubled and credible patients: A study of emotion talk in palliative care settings,Qualitative Health Research 16 (1) pp. 27-46 Sage
In this article, the authors select two categories of dying patients, "troubled" and "credible," from two larger studies conducted in three palliative care settings. They explore how nurses construct dying patients' moral identities and how they use emotion talk to interpret patients' behavior. The authors carried out a microanalysis of talk-in-action using discourse analysis and conversation analysis. Strategies used for the construction of moral identities include the production of atrocity stories and emotional editing. The authors identify moments when emotions are made relevant in palliative care nurses' daily practices, which serve to smooth social interaction and give a voice to dying patients' words and actions. The dying trajectory, the deteriorating emotional body, and the sound mind are resources used in the characterization of the credible and troubled patient. The authors argue that emotion talk is significant because it reveals how nurses manage conflict and tension in talk-in-interaction. © 2006 Sage Publications.
Arber A, Gallagher A (2009) GENEROSITY AND THE MORAL IMAGINATION IN THE PRACTICE OF TEAMWORK,NURSING ETHICS 16 (6) pp. 775-785 SAGE PUBLICATIONS LTD
Probst S, Arber A, Faithfull S, Trojan A (2012) Caring for a loved one with a malignant fungating wound, Supportive Care in Cancer pp. 1-6
Purpose: Caring 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. Method: To 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. Results: Having 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. Conclusion: This 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. © 2012 Springer-Verlag.
Arber A (2008) Team meetings in specialist palliative care: Asking questions as a strategy within interprofessional interaction,QUALITATIVE HEALTH RESEARCH 18 (10) pp. 1323-1335 SAGE PUBLICATIONS INC
Gregg N, Arber A, Ashkan K, Brazil L, Bhangoo R, Beaney R, Gullan R, Hurwitz V, Costello A, Yágüez L (2014) Neurobehavioural changes in patients following brain tumour: patients and relatives perspective, Supportive Care in Cancer 22 (11) pp. 2965-2972
© 2014, Springer-Verlag Berlin Heidelberg.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.
Odelius A, Arber AM, Reed P, Hayes M (2014) The Think Family project, In: The Think Family project. A project funded by Macmillan Cancer Support. pp. 1-45 University of Surrey
Up to a third of patients suffering from cancer are parents to young children and teenagers. Bereavement can affect children deeply although not all families and children who face loss are in need of specialised support. Many families report needing support with children in relation to age appropriate information and communication about a parent?s cancer diagnosis. The Think Family project, a collaboration between the University of Surrey, a National Health Service (NHS) trust and two charity organisations in the United Kingdom (UK), was prompted by a lack of knowledge about how specialist oncology and palliative care staff manage families and children who experience prebereavement due to parental cancer in the acute sector. The project focused on exploring the experiences and needs of oncology and palliative care staff and on increasing awareness and confidence regarding the needs of families with children. The study was designed as a collaborative project using case study methodology. A three stage study was undertaken during 2013 - 2014 using focus group and individual interviews, a collaborative data analysis event; and a staff training workshoprelated to the needs of parents with advanced cancer and dependent children. Three key themes emerged from the data which are: ?a challenging and complex area?, ?supporting parents to support children?, and ?the needs of oncology staff in relation to the support of families?.
Arber A, Hutson N, de Vries K, Guerrero D (2012) Finding the right kind of support: A study of carers of those with a primary malignant brain tumour.,Eur J Oncol Nurs 17 (1) pp. 52-58 Elsevier
PURPOSE: Caring for someone with a primary malignant brain tumour is very demanding due to the dynamic situation involving changes to personality, short term memory loss and changes in family relationships. The purpose of this qualitative study is to examine the support needs of carers of those with a primary malignant brain tumour. METHODS & SAMPLE: 22 Carers who were currently caring for someone with a primary malignant brain tumour were recruited from one specialist cancer centre in the south east of England. The study took a grounded theory approach and data were analysed using the constant comparative method generating categories and themes that are grounded in the data. KEY RESULTS: A key concept that emerged from the data was: 'Connecting on the caring journey'. The themes that emerged from the key concept were: building helpful relationships; safe places and comfort zones; and threats to connecting. CONCLUSIONS: Many carers do find a great deal of support within the family and from their relationships with friends as well as from cancer and carer support groups. However this is by no means universal and many carers experience a lack of timely access to good quality supportive care services. For some carers supportive care services do not meet their expectations so they spend valuable time searching for the connections they need to continue to care combined with feeling frustrated and under pressure.
Arber A (2006) Forum for Applied Education and Training: Rethinking pain assessment., Eur J Cancer Care (Engl) 15 (2) pp. 200-207
Dunn E, Arber A, Gallagher A (2016) The Immediacy of Illness and Existential Crisis: Patients' lived experience of under-going allogeneic-stem cell transplantation for haematological malignancy. A phenomenological study,EUROPEAN JOURNAL OF ONCOLOGY NURSING 21 pp. 90-96 ELSEVIER SCI LTD
King-Okoye M, Arber A (2013) ?It stays with me?: The experiences of second- and third-year Student Nurses when caring for patients with cancer, European Journal of Cancer Care Published online pp. 1-20 Wiley
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 twenty 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 emphasized 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.
Cox AC (2015) Negotiated reorienting: A grounded theory of nurses' end-of-life decision-making in the intensive care unit, International Journal of Nursing Studies
BACKGROUND: Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. OBJECTIVES: To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. DESIGN: We collected and analysed qualitative data using Grounded Theory. SETTINGS: Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. PARTICIPANTS: Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. METHODS: The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. RESULTS: The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). CONCLUSIONS: There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However, there were some discernible differences regarding the power dynamics in nurse-doctor relationships, particularly in relation to the cultural perspectives on death and dying and in the development of palliative care. The research suggests the need for culturally sensitive ethics education and bereavement support in different cultural contexts.
Mishelmovich N, Arber A, Odelius A (2015) Breaking significant news: The experience of clinical nurse specialists in cancer and palliative care, EUROPEAN JOURNAL OF ONCOLOGY NURSING 21 pp. 153-159 ELSEVIER SCI LTD
Probst S, Arber A, Faithfull S (2012) Malignant fungating wounds - The meaning of living in an unbounded body, European Journal of Oncology Nursing
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. Crown Copyright © 2012.
International Nurses? End-of-Life Decision-Making in Intensive Care Research Group, Gallagher A, Bousso RS, McCarthy J, Kohlen H, Andrews T, Paganini MC, Abu-El-Noor NI, Cox A, Haas M, Arber A, Abu-El-Noor MK, Baliza MF, Padilha KG (2015) Negotiated reorienting: a grounded theory of nurses' end-of-life decision-making in the intensive care unit., Int J Nurs Stud 52 (4) pp. 794-803
BACKGROUND: Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life-sustaining treatment and the shift to comfort and palliative care. These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses' end-of-life (EoL) decision-making practice across cultures. OBJECTIVES: To understand nurses' EoL decision-making practices in ICUs in different cultural contexts. DESIGN: We collected and analysed qualitative data using Grounded Theory. SETTINGS: Interviews were conducted with experienced ICU nurses in university or hospital premises in five countries: Brazil, England, Germany, Ireland and Palestine. PARTICIPANTS: Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning end-of-life (EoL) decision-making. METHODS: The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant. RESULTS: The core category that emerged was 'negotiated reorienting'. Whilst nurses do not make the 'ultimate' EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving). CONCLUSIONS: There was consensus regarding the core concept and core practices employed by nurses in the ICUs in the five countries. However, there were some discernible differences regarding the power dynamics in nurse-doctor relationships, particularly in relation to the cultural perspectives on death and dying and in the development of palliative care. The research suggests the need for culturally sensitive ethics education and bereavement support in different cultural contexts.
Probst S, Arber A, Faithfull S (2009) Malignant fungating wounds: A survey of nurses' clinical practice in Switzerland,EUROPEAN JOURNAL OF ONCOLOGY NURSING 13 (4) pp. 295-298 ELSEVIER SCI LTD
Gallagher A, Arber A, Chaplin R, Quirk A (2010) Service users' experience of receiving bad news about their mental health,Journal of Mental Health 19 (1) pp. 34-42
Background:The breaking and receipt of bad news is little referred to in the mental health literature, particularly from a service user perspective. Aims:This project aimed to gain understanding of service users' experiences of receiving good and bad news from mental health professionals. Method:Ten semi-structured interviews were conducted in which mental health service users recounted key moments when good or bad news was delivered to them and described the impact of that news on their psychological well being. Transcripts were analysed thematically. Results:The receiving of a diagnosis could be perceived as bad news or a cause of confusion where a diagnosis is changed. The importance of trust in professionals, the use of adequate time and information was considered important in buffering the impact of potentially bad news. The technique of comparing a mental disorder to a physical disorder is not always helpful. Conclusions:The delivery of bad news in mental health is more complex than a "good or bad news" paradigm and it should be done in the context of a good therapeutic alliance. An individualized approach to delivering news about diagnosis is advocated. © 2010 Informa UK Ltd.
Arber A, Clackson C, Dar S (2013) Malignant pleural effusion in the palliative care setting, International Journal of Palliative Nursing 19 (7) pp. 320-325
Malignant pleural effusion (MPE) is a distressing condition for the patient, causing many symptoms such as shortness of breath, dry cough, an uncomfortable feeling of heaviness in the chest, and pleuritic pain. MPE reduces quality of life and functional status. It indicates that the disease is now advanced and life expectancy is generally short, with a median prognosis of 3-12 months depending on the stage of the disease and the underlying malignancy. This paper discusses the palliative treatment options for MPE, which include thoracentesis, medical pleurodesis, and indwelling pleural catheter. It is important that decisions about treatment are made within the multidisciplinary team and alongside the patient and family. Treatment goals are concerned with the relief or elimination of dyspnoea, restoration of near-normal activity and function, and avoidance of inpatient care. © 2013 MA Healthcare Ltd.
Probst S, Arber A, Faithfull S (2009) Malignant fungating wounds: a survey of nurses' clinical practice in Switzerland,EJC SUPPLEMENTS 7 (2) pp. 232-233 PERGAMON-ELSEVIER SCIENCE LTD
Arber AM, Arber (2006) Reflexivity a challenge for the researcher as practitioner, Journal of Research in Nursing 11 (2) pp. 147-157 Sage
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.
Arber A, Odelius A-C (2013) The ?new normal? delivering information about oral chemotherapy in the clinic,
As a result of bio-medical research and pharmaceutical advances many chemotherapy drugs and supportive medications are now available orally to be used throughout the illness trajectory and they are the current ?gold standard? for treating the cancer called myeloma. The aim of this study is to understand how information about oral chemotherapy is delivered to patients who are starting oral chemotherapy for myeloma. The study draws on a case study approach using mixed methods. Audio recordings of 10 clinical consultations between doctors, clinical nurse specialists and patients at three NHS trusts were carried out in 2010-2011 as well as a self-completion questionnaire (n=70) and interviews with clinical nurse specialists and patients (n=6). The results identify how staff adopt the ?information delivery mode? during consultations about oral chemotherapy. Information was framed in relation to adopting ?a new normal?, use of scare tactics to impart a sense of urgency, gravity and risk in relation to the medication. Surprisingly, adherence with the medication regime did not feature as a key issue in consultations. Staff used the ?information delivery? format in contrast to the ?interview format?. The advantage of the information delivery format is that a lot of information can be given to patients over a short period of time. The interview format is one recommended by Silverman (1997) where nurses ask patients questions to which patients provide answers and this gives patients an opportunity to express their own concerns and fears about their medications and to receive information targeted to their needs. A move to adopting the interview format by nurses will enable information to be more closely aligned with the patients own needs and concerns.
Cox A, Arber A, Bailey F, Dargan S, Gannon C, Lisk R, Quinn B, Samarasinghe J, Wrigley M, Gallagher A (2017) Developing, implementing and evaluating an end of life care intervention,Nursing Older People 29 (1) pp. 27-35 RCN Publishing
To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Aim To develop, implement and evaluate a collaborative intervention in care homes seeking to increase the confidence and competence of staff in end of life care and enable more people to receive end of life care in their usual place of residence. Method A two-phase exploratory mixed methods design was used, evaluating the effect of an end of life care toolkit and associated training in care homes, facilitated by a specialist palliative care team. Six care homes in England were recruited to the intervention; 24 staff participated in discussion groups; 54 staff attended at least one training session; and pre- and post-intervention questionnaires were completed by 78 and 103 staff respectively. Results Staff confidence in receiving emotional and clinical support and managing end of life care symptoms increased post-intervention, but confidence in discussing death and dying with residents and relatives decreased. Audit data indicate greater reduction in the number of residents from participating care homes dying in hospital than those from comparison homes. Conclusion Collaborative end of life care interventions support care home staff to manage end of life and may enable residents to have choice about their place of death.
Beech N, Arber A, Faithfull S (2012) Restoring a sense of wellness following colorectal cancer: A grounded theory, Journal of Advanced Nursing 68 (5) pp. 1134-1144
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 individual's 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 1year following surgery, between 2007 and 2009. Grounded theory analysis was undertaken using Strauss and Corbin's 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. © 2011 Blackwell Publishing Ltd.
Arber A, Odelius A, Williams P, Lemanska A, Faithfull S (2015) Do patients on oral chemotherapy have sufficient knowledge for optimal adherence? A mixed methods study.,Eur J Cancer Care (Engl)
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.
Arber A, Odelius AC (2015) How do specialist oncology staff 'think family' and support patients with advanced cancer who have dependent children?, EUROPEAN JOURNAL OF CANCER 51 pp. S51-S51 ELSEVIER SCI LTD
Arber AM (2016) How do nurses ?Think Family? and support parents diagnosed with cancer who have dependent children?, Asia-Pacific Journal of Oncology Nursing 3 (3) pp. 214-217 Wolters Kluwer Medknow Publications
Many barriers exist regarding access to support and information for parents with cancer who are parenting dependent children and young people. There is little known about how nurses in acute settings support parents with dependent children. Many complexity factors exist which can increase the risk of behavioral problems in children when a parent has a cancer diagnosis. A recent study presented in this editorial identifies how there is a lack of confidence and skill experienced by specialist nurses in acute oncology settings regarding the needs and well-being of children where there is a cancer diagnosis in the family. Recommendations are identified for developing practice in this area and on increasing awareness of the needs of children and young people.
Probst S, Arber A, Faithfull S (2013) Coping with an exulcerated breast carcinoma: an interpretative phenomenological study,JOURNAL OF WOUND CARE 22 (7) pp. 352-360 MA HEALTHCARE LTD
Arber AM, Spencer L (2013) ?It?s all bad news?: the first 3 months following a diagnosis of malignant pleural mesothelioma,Psycho-Oncolgy 22 (7) pon_3162 pp. 1528-1533 Wiley
Objective: This study explores patient?s experience during the first three months following a diagnosis of malignant pleural mesothelioma. Methods: This study uses a grounded theory approach with semi-structured, face-to- face interviews with ten patients during the first 3 months following diagnosis. Results: The key concept that emerged from the data was this: Uncertainty and lack of control, leading to emotional, physical and psychosocial distress. Three themes informed the key concept: ? it?s all bad news?, ?good and bad days? and strategies of amelioration. Patients worked with a short-term perspective on their illness but worried about the long-term outcome and the speed of their deterioration. Conclusion: Patients receive insufficient psychosocial support during the first three months following diagnosis. An early palliative care referral would improve support and referral strategies during the first three months of the disease.
Cox Anna, Arber Anne, Gallagher Ann, MacKenzie M, Ream Emma (2017) Establishing priorities for UK cancer nursing research: Nurse and patient collaboration in a UK Oncology Nursing Society Delphi survey,Oncology Nursing Forum 44 (2) pp. 192-203 Oncology Nursing Society
Purpose: Obtain consensus on research priorities for cancer nursing research in the UK. Design: A 3-round online Delphi survey Setting: Oncology nurses were invited via the UK Oncology Nursing Society (UKONS) database. Patient participation was invited through patient organisations. Sample: 50 oncology nurses and 18 patients Methods: Eligible and consenting individuals reported five priorities for cancer nursing research (round 1), rated their level of agreement with them (round 2), and re-stated/revised their responses in light of the group?s (round 3). Consensus was defined as 80% agreement. Findings: Consensus was reached on 50/107 research priorities. These priorities reflected the entire cancer pathway, from diagnosis to palliative care. Highest agreement was reached within and across groups on the need for research relating to prevention, screening and early diagnosis and psychological care across the cancer trajectory. Little consensus was reached regarding symptoms and sideeffects. There was some evident divergence: only patients reached consensus regarding palliative care research and only nurses on eHealth and technology research. Conclusions: Oncology nurses and patients do not necessarily prioritise the same research areas. Prevention, screening and early diagnosis are considered of highest priority for future research across both oncology nurses and patients. Implications for nursing: Patients usually play little part in priority setting for research. This study provided the opportunity for meaningful patient and nurse involvement in setting a research agenda for cancer nursing that is relevant and beneficial to both cancer nurses and patients.
Laverty D, Arber AM, Faithfull S (2016) Respite for patients and carers in neurodegenerative disease: a grounded theory study,European Journal of Palliative Care 23 (4) pp. 175-179 Hayward Medical Communications
Neurodegenerative diseases (NDDs) are incurable and debilitating, and result in progressive deterioration of cognitive (dementias) and physical (ataxias) functioning. People with these conditions have constantly changing needs due to steady deterioration, with episodes of rapid decline,1,2 which places a heavy burden both on patients and their carers. Greater emphasis is now placed on keeping patients in their own homes in order to meet their personal wishes and reduce hospital/institutional costs.3,4 Respite can offer several avenues of support including rehabilitation, maximisation of functionality and improved quality of life for the patient. It can also be crucial in enabling carers to continue in their caring roles.
Laverty D, Faithfull S, Arber AM (2013) Developing respite care at an inner London hospice,European Journal of Palliative Care 20 (2) pp. 72-76 Hayward Medical Communications
In the UK, palliative care plays an important role in supporting patients and their carers during the course of a progressive and life-threatening illness. There has been much research into people?s preferred place of care and death, the future care needs of an aging society and the lack of resources and services in the community to support people?s wishes.1,2 There have also been numerous national drivers to emphasise and promote community-based care...
Arber A, Odelius A (2017) The experiences of oncology and palliative care nurses when supporting parents who have cancer and dependent children,Cancer Nursing 41 (3) pp. 248-254 Lippincott, Williams & Wilkins
Background:
It is important not to ignore the impact of parental cancer on children and this is where oncology and palliative care nurses can play a key role; providing support to parents as a regular aspect of oncological nursing care.
Objectives:
This study explored the experience, needs and confidence of nurses working in acute cancer services when supporting parents with cancer who have dependent children.
Methods:
Two focus group interviews were conducted with oncology and palliative care nurses in one acute hospital trust in the south of England.
Results:
Nurses described how they identified with their patients as a parent themselves. This identification with patients added to the emotionally charged context of care and resulted in nurse avoidance of the troubling issue of dependent children. Nurses identified the importance of peer support with regular opportunities to reflect on practice when dealing with issues relevant to parents and children.
Conclusions:
Oncology and palliative care nurses take a reactive approach to family centred care, taking their cue from patients to initiate or request support for their children. Implications for Practice: Guidance was needed on children's developmental stages and how to communicate with children of different ages. Additionally, guidance was needed on assessing family needs and access to up to date resources. To enable nurses to engage with the issue of children, strategies of peer support and further educational opportunities need to be implemented.
Ayers N, Vydelingum V, Arber A (2017) An ethnography of managing emotions when talking about life-threatening illness.,International Nursing Review 64 (4) pp. 486-493 Wiley
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, has limited resources for caring for those with life limiting illnesses 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 further distress and to loss of hope. Methods: Non-participant observation amounting to 276 hours of observation and ethnographic interviews with 4 patients, 6 family caregivers and 5 palliative care staff during two periods of data collection (November 2011-January 2012, May 2012-August 2012) in Addis Ababa, Ethiopia. Findings: Various communication strategies were used by palliative care staff to 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, it an open awareness context existed between palliative care staff and family caregivers. Discussion: In managing truth telling in different cultural settings, medical, nursing staff and 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 assure 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.
King-Okoye Michelle, Arber Anne, Faithfull Sara (2017) Routes to diagnosis for men with prostate cancer: men's cultural beliefs about how changes to their bodies and symptoms influence help-seeking actions. A narrative review of the literature,European Journal of Oncology Nursing (EJON) 30 pp. 48-58 Elsevier
Purpose: To examine the findings of existing studies in relation to men's cultural beliefs about changes to their bodies relevant to prostate cancer and how these affect interpretation of bodily changes and helpseeking actions.
Method: We undertook a narrative review of studies conducted from 2004 to 2017 in 6 databases that highlighted men's beliefs and help-seeking actions for bodily changes suggestive of prostate cancer.
Results: Eighteen (18) studies reflecting men from various ethnicities and nationalities were included. The belief that blood and painful urination were warning signs to seek medical help delayed helpseeking among men compared to men that did not experience these symptoms. The belief that urinary symptoms such as dribbling, cystitis and urinary hesitancy were transient and related to ageing, normality and infection significantly delayed symptom appraisal and help-seeking. Men also held the belief that sexual changes, such as impotence and ejaculation dysfunction were private, embarrassing and a taboo. These beliefs impeded timely help-seeking. Cultural beliefs, spirituality and the role of wives/partners were significant for men to help appraise symptoms as requiring medical attention thus sanctioning the need for help-seeking.
Conclusions: This review underscores a critical need for further empirical research into men's beliefs about bodily changes relevant to prostate health and how these beliefs affect their interpretation of symptoms and subsequent help-seeking actions.
Dunn Liz (2015) Safe in the bubble, out into the unknown : returning home following allogeneic stem cell transplantation. A phenomenological study,
Aim This paper reports a study exploring the lived experience of fifteen men and women treated with allogeneic stem cell transplant (SCT) for haematological malignancy. Background Evidence suggests that treatment of haematological malignancy including allogeneic stem cell transplant has a significant impact on the quality of life (QoL) of recipients and quantitative studies have measured dimensions such as physical function and psycho-social and spiritual domains. Fewer studies have considered individual?s lived experience of allogeneic stem cell transplant (SCT) and their subsequent recovery. Methods The study followed an interpretive phenomenological methodology using semi-structured interviews. Fifteen participants aged between 22-68 years were purposively recruited from two specialist treatment centres and were interviewed within three months to one year post SCT between April and September 2013. Data were then analysed using interpretive phenomenological methodology to gain insights into their lived experience including their personal and social experience of the world following treatment. Findings Two overarching themes emerged from the data: The Immediacy of Illness & Existential Crisis and The Recovery Journey. The Immediacy of Illness and Existential Crisis illustrate the participants? experiences of critical events in relation to disease onset, diagnosis and treatment and the enduring uncertainty which continues into recovery including facing their own mortality. Participants suffer major disruption to their lives physically, psychosocially and emotionally as a result of illness without a sense of when they may resume the normality of their former life. Returning home after several months of hospitalisation is a particularly daunting and challenging time for patients. Participants expressed their fear of being suddenly left in charge of their own health needs and the stark reality of the outside world compared to being cared for in the relative safety of their protective isolation facility in hospital. The responsibility for self monitoring and vigilance in the light of on-going treatment effects such as graft versus host disease (GVHD) and the threat of viral infections warrants increased support from health care professionals. Social support in order to cope with isolation, financial hardship and employment issues similarly deserves attention. Processing traumatic experiences such as life threatening diagnoses, critical events and harsh treatments can be difficult when faced with the immediacy of illness. Participants feel guilty of burdening their loved ones but could benefit from the opportunity to talk to other patients in order to gain perspective and share strategies for coping and adjustment. Conclusion Ambiguity and uncertainty characterise the illness and recovery journey for those with haematological malignancy. Whilst participants have access to specialist teams, there are opportunities for health and social care professionals to provide more support for individual?s returning home after prolonged hospitalisation and in the months that follow. In particular the development of a community based Advanced Nurse Practitioner, skilled in early recognition of treatment effects, could significantly enhance the care of patients in their first year post SCT.
Arber Anne (2006) Reflexivity: A challenge for the researcher as practitioner?,Journal of Research in Nursing 11 (2) pp. 147-157 Sage Publications
In this article I focus on what it means 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.
Wang Qi, Arber Anne, Shen Aomei, Qiang Wanmin (2018) Perspectives of Chinese Cancer Patients towards Disclosure of Cancer Diagnosis to Their Minor Children,Cancer Nursing Lippincott, Williams & Wilkins
Background:
One of the issues that cancer patients with minor or adolescent children face is whether to inform children about their cancer diagnosis. Their perspectives towards this issue are under-explored in China.
Objective:
To explore Chinese cancer parents? perspectives towards informing children of their diseases.
Methods:
Eighteen cancer patients with children under-18 were recruited using purposive sampling. Semi-structured, face-to-face, in-depth interviews were conducted using a phenomenological approach. Data were analyzed using Colaizzi?s approach.
Results:
Six main themes with 2-6 sub-themes emerged: a) Inappropriate to disclose the true diagnosis to children; b) Appropriate to disclose the true diagnosis to children; c) Communication content between cancer patients and their children in regard to cancer; d)Attitude on ways of disclosing cancer diagnosis to children; e) Reflections on parenting style; and f) Unmet needs for information and support.
Conclusions:
Perspectives of Chinese cancer parents towards truthfully disclosing their diagnosis vary, but all are for the purpose of protecting children. Study findings indicate that Chinese cancer parents have culture-specific considerations, such as concepts of death and filial piety, which differ from studies in western countries. Meanwhile, there are barriers between cancer parents and children in communicating about the illness and unmet needs for information and support.
Ayers Nicola (2015) 'Not wanting to upset' : the management of emotions in caring for the dying : an ethnographic study in Addis Ababa, Ethiopia.,
Ethiopia, one of the poorest countries in the developing world, has limited resources for those with advanced cancer requiring end of life care. This thesis explores the care of the dying situation in Addis Ababa, as families access palliative care services. A critical review examined palliative care set-up in sub-Saharan Africa and the Middle East and explored models of care used and the multiple factors affecting palliative care delivery. The review revealed a dearth of knowledge about care of the dying in Addis Ababa. A further review provided insight into cultural aspects of good death. A focused ethnography, carried out over a 6-month period at a hospice facility, involved participant observation, interviews and home visits with staff, patients and family. Following thematic analysis a number of significant themes were revealed. The importance of emotional support by family and hospice staff was found to be the essence of care provision. The awareness of a terminal diagnosis is often kept from the ill person so as ?not to upset?, thus protecting them emotionally from distress. Various communication strategies were used by staff to create openness, though ultimately they deferred to the dying person?s family; also family and hospice staff talked ambiguously about dying. Emotional care was expressed by family members ?stopping everything? to care for their dying relative. Through physical care, the dying person?s emotional equilibrium and comfort were maintained. Hospice staff provided a ?family-style service?. This study offers unique understanding into non-disclosure of terminal diagnosis and how the family emotionally protects the dying person. It gives valuable insight into how families and the emerging Ethiopian palliative care service together provide care for the dying. The study has implications for international relief workers and professional carers. This study points to further research into care of the dying in rural communities in Ethiopia.
Aim: This study aimed to develop a grounded theory to explain the experience of patients with neurodegenerative diseases and their carers, following an episode of residential respite care. Background: Neurodegenerative diseases are incurable, debilitating and result in progressive deterioration of the patient which present as problems with cognitive functioning (dementias) and/or physical functioning (ataxias). To allow quality of life and purpose for the patient and caregiver, as well as providing value for money, respite is an area of care which could offer the patient rehabilitation, maximisation of functionality and quality of life; relief from caregiving duties for the carer and signposting for additional assistance and support. Methods: This was a qualitative, grounded theory study conducted across south east England. An initial audit, attendance at support groups and specialist clinics provided scoping of the scale of the problems encountered by this patient population. Data collection included 17 semi structured interviews conducted with patients and carers who had recently received residential respite, non-participant observation at a hospice offering dedicated respite care and 4 hospice staff interviews. Findings: A successful respite depended on the patient and carer identifying the need for respite and the information required to determine where, what, when and how respite could be accessed. The logistics of the referral process, preparation for respite and the handover of care needs to professionals were key factors for a therapeutic admission. Conclusion: The outcomes from the respite admission should be mutually acceptable to both the patient and carer and be able to demonstrate acceptance and adaptation to a new normalcy, influenced by disease progression and reflecting on time present and time past. The onward journey sees a transitioning which involves restoration and building up a level of resilience for the carer, which all contribute to sustainability and being able to continue in the caring role.
Franklin Penny, Arber Anne, Reed Liz, Ream Emma (2019) Health and social care professionals? experiences of supporting parents and their dependent children during, and following, the death of a parent: A qualitative review and thematic synthesis,Palliative Medicine 33 (1) pp. pp 49-65 SAGE Publications
Background: Children need to be prepared for the death of a parent and supported afterwards. Parents seek support from health and social care professionals to prepare their children. Support is not always forthcoming.
Aim: To systematically identify, analyse and synthesise literature reporting of the experiences of health and social care professionals when supporting parents and children during, and following, the death of a parent.
Design: A systematically constructed qualitative review and thematic synthesis. Registered on Prospero (CRD42017076345).
Data sources: MEDLINE, CINAHL, Embase, PsycINFO, PsycARTICLES and PROSPERO, searched from January 1996 to July 2018 for qualitative studies in English, containing verbatim reporting of health and social care professionals? experiences of supporting parents and children during, and following, the death of a parent. Qualitative data were appraised using a modified Critical Appraisal Skills Programme qualitative appraisal checklist.
Results: The search yielded 15,758 articles. Of which, 15 met the inclusion criteria. A total of 13 included professionals? experiences of supporting parents and children before parental death. Two included experiences of supporting surviving parents and children afterwards. Three analytical themes identified as follows: (1) aspiring to deliver family-focussed care, (2) health and social care professionals? behaviours and emotions and (3) improving connections with parents and children. Connecting empathically with parents and children to prepare and support children entails significant emotional labour. Professionals seek to enhance their confidence to connect.
Conclusion: Professionals struggle to connect empathically with parents and their children to prepare and to support children when a parent is dying and afterwards. Awareness of professionals? needs would enable provision of appropriate support for parents and children.
King-Okoye Michelle (2018) Silence among Afro Caribbean men diagnosed with prostate cancer in Trinidad and Tobago : a grounded theory study.,
Background: Prostate cancer (PCa) is the leading cause of death among Afro-Caribbean men in Trinidad and Tobago (TT). TT is listed as one among countries with the highest PCa mortality rates in the world (Hosein et al., 2016). A systematic review undertaken explored men?s cultural beliefs about prostate symptoms and help-seeking behaviours, which revealed a dearth of knowledge of Afro-Caribbean men and PCa (King-Okoye et al., 2017). This study aims to explore men and partners experiences along care pathways for PCa in TT, including the beliefs and meanings men associate with their illness and its presentation. Methods: Utilising Straussian grounded theory, semi-structured and focus-group interviews were conducted with men (n= 51) diagnosed with PCa and partners (n=16) at four (urology & oncology) centres throughout TT in 2015-2016. Results: Five categories: ?Disrupting the Self?, ?Disconnected to Health Services?, ?The Silent Wall?, ?Blame and Distrust? and ?Breaking the Silence? and a core category, ?Silence among Afro-Caribbean men? (SAACM) were generated from the data. These connect with men?s late presentation of PCa at emergency services with severe and life-limiting symptoms associated with high mortality rates for this disease. The main reasons underlying men?s late presentation to health services with debilitating symptoms, concern masculinity norms, lack of awareness and knowledge of early stage PCa, cultural beliefs and practices and perceptions of an uncaring health system. These heavily influenced men?s ability to access care and move through routes to diagnosis for PCa in TT. Conclusion: The SAACM offers unique insight into identifying how men?s cultural beliefs, hegemonic masculinity and lack of knowledge and awareness of the prostate and PCa resulted in delays in help-seeking and subsequently late diagnosis. A better understanding of men and their partners? experiences along routes to diagnosis for PCa can target specific public health messages to address barriers to early diagnosis for men. Key words: Trinidad and Tobago, experiences, beliefs, culture, silence
King?Okoye Michelle, Arber Anne, Faithfull Sara (2019) Beliefs that contribute to delays in diagnosis of prostate cancer among Afro?Caribbean men in Trinidad and Tobago,Psycho-Oncology 28 (6) pp. 1321-1327 John Wiley & Sons, Ltd
Objective:
The aim of this study was to explore TT men?s pre-diagnosis experiences of prostate cancer (PCa). This study is part of a wider project that examined men and their partners? experiences of routes to diagnosis for PCa in TT.
Methods:
Men (n=51) were voluntarily recruited to semi-structured interviews from four centres. Data were analysed following principles of Grounded Theory.
Results:
Major barriers to medical help-seeking were highlighted as lack of knowledge and awareness of the prostate gland and symptoms of PCa, the digital rectal exam (DRE), PSA, cultural and religious beliefs and hegemonic masculinity norms and non-reporting of bodily changes to GPs. Fear of DRE, distrust in providers and misinterpretation of bodily changes as related to ageing and diabetes mellitus also contributed to delays towards seeking medical help. Men?s interactions with pharmacists and traditional healers lengthened the time taken to consult with Health Care Providers for prostate concerns.
Conclusions:
TT men?s PCa pre-diagnosis experiences are important to unearth barriers and facilitators to care along routes to diagnosis for this disease. This can help target specific health promotion strategies to motivate men to seek medical care for symptoms in a timely manner.
Hadjittofi Marilena (2019) An IPA study exploring how nursing and midwifery students experience disgust.,
Background: Even though disgust has been recognised as a common and prominent emotion in healthcare, very little is known about how healthcare professionals understand, experience and conceptualise disgust. A literature review revealed that healthcare professionals do experience disgust, yet they struggle to talk about it and may use empathy as a means to cope with and overcome disgust. Further in-depth analysis is required to further our understanding in how professionals experience disgust and how this might be influenced by their professional identity.
Objective: To gain an in-depth understanding of how nursing and midwifery students experience, understand and cope with disgust in their clinical work.
Method: 6 participants (all women; 2 nursing students, 4 midwifery students) from a University in the South of England were interviewed. Their interviews were transcribed verbatim and analysed using Interpretative Phenomenological Analysis.
Results: Four superordinate themes, We are not supposed to express disgust as professionals, We have ways of managing disgust, It?s easier to talk about moral disgust and ?We? respond to moral disgust by distancing ourselves from ?them? and eight subthemes were identified through inductive interpretative analysis. Together these themes show that the experience and expression of disgust in a healthcare context is a complex and delicate process, inextricably linked to the professional identity. This is further evidenced by the reluctance of participants to take part in the study and talk about disgust.
Maguire Roma, Arber Anne, Klepacz Naomi, Connaghan J., Mcphelim J., Blythe K., Murray P., Rupani H., Mcnaughton L., Moylan A., Clark P. (2019) Determining the feasibility and acceptability of a mobile health application to remotely monitor the symptoms of people with mesothelioma at home,Lung Cancer 127 pp. S87-S88 Elsevier
Maguire Roma, Connaghan John, Arber Anne, Klepacz Naomi, Blyth Kevin G, McPhelim John, Murray Paul, Rupani Hitasha, Chuahan Anoop, Williams Peter, McNaughton Laura, Woods Kirstie, Moylan Anne (2020) The Advanced Symptom Management System for patients with malignant pleural mesothelioma (ASyMSmeso): a feasibility study,Journal of Medical Internet Research JMIR Publications
Background:
Patients with malignant pleural mesothelioma (MPM) have a life limiting illness and a short prognosis and experience many debilitating symptoms from early on in the illness. Innovations such as remote symptom monitoring are needed to enable patients to maintain wellbeing and to manage symptoms in a proactive and timely manner. The Advanced Symptom Management System (ASyMS) has been successfully used to monitor symptoms associated with cancer.
Objective:
To determine the feasibility and acceptability of using an Advanced Symptom Management System (ASyMS) adapted for use by patients with malignant pleural mesothelioma and called: ASyMSmeso enabling the remote monitoring of symptoms using a smartphone.
Methods:
This was a mixed methods study using Patient Reported Outcome Measures (PROMs) at key time points over a period of 2-3 months with 18 patients. The Sheffield Profile for Assessment and Referral for Care (SPARC); Technology Acceptance Model Measure for e-health (TAM); and the Lung Cancer Symptom Scale-Mesothelioma (LCSS-meso) were the PROMs used in the study. Patients were also asked to complete a daily symptom questionnaire on a smartphone throughout the study. At the end of the study semi-structured interviews with 11 health professionals, 8 patients and 3 carers about their experience of using ASyMSmeso were conducted.
Results:
Eighteen patients with MPM agreed to participate in the study (33.3% response rate). The completion rates of study PROMs were high (97.2%-100%) and for completion of the daily symptom questionnaire were also high at 88.5% There were no significant changes in quality of life, as measured by LCSS-meso. There were statistically significant improvements from the SPARC domain: psychological need (P=0.049), and in the ?Usefulness? domain of the Technology Acceptance Model (P=0.022). End of study interviews identified that both patients and clinicians found the system quick and easy to use. For patients in particular the system provided reassurance about symptom experience and the feeling of being listened to. The clinicians largely viewed the system as feasible and acceptable and areas that were mentioned included the early management of symptoms, connectivity between patients and clinicians leading to enhanced communication.
Conclusions:
This study demonstrates that remote monitoring and management of symptoms of people with MPM using a mobile phone is feasible and acceptable. The evidence supports future trials using remote symptom monitoring to support patients with MPM at home.
Hadjittofi Marilena, Gleeson Kate, Arber Anne (2020) The experience of disgust by healthcare professionals: A literature review,International Journal of Nursing Studies 110 103720 Elsevier
Background
Disgust is a common emotion experienced by healthcare professionals which in extreme cases can contribute to neglect and abuse of patients. However, little research has explored how healthcare professionals experience disgust and what coping strategies they use to manage it.
Aim
To identify, evaluate and synthesise results from empirical papers that have explored how healthcare professionals experience, understand and manage disgust in clinical work.
Design
A narrative literature review.
Data Sources
Using the EBSCOHost interface, a range of databases were systematically searched alongside manual searches and citation chaining which yielded the 11 papers included in this review.
Review Method
Qualitative synthesis.
Results
Three major themes were identified: The professionals? struggle to talk about disgust; the importance of boundaries: boundary breaching and boundary building; and the role of empathy in caring.
Conclusion
This review found that disgust is a common experience for healthcare professionals, yet it is not talked about or openly expressed. Professionals have developed ways to cope with disgust and use empathy as a main strategy to overcome it. The review suggests that healthcare professionals should consider ways of making disgust part of a wider conversation, allowing clinicians to engage with their feelings, rather than feel ashamed of them and hiding disgust away as a silent part of care.