Dr Anne Arber
About
Biography
I have a clinical and research background in supportive cancer care. My background is in social science research focusing on supportive care for patients with cancer and their carers; including symptom support using e-health, patient and public involvement, communicating significant news in cancer and palliative care. I'm an Honorary Faculty Member for the European School of Oncology and a trainer for Advanced Communication Skills.
I'm a very experienced PhD supervisor and have successfully supervised many PhD students including international students. I have examined many doctoral theses as an external examiner. In the past I was awarded the Vice-Chancellors Award for Post Graduate Research Supervisor of the Year in recognition of creating the most supportive, stimulating and inspirational research environment. I combine research and teaching as integral parts of my role within the university. Recently, I became an Editorial Board Member for BMC Health Services Research.
I have research expertise in many qualitative research methods including grounded theory, ethnography and narrative research as well as mixed methods research. I have published widely in the field of cancer and palliative care in high impact journals.
Affiliations and memberships
ResearchResearch 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
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 2019-2023
- 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
- 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).
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
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 2019-2023
- 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
- 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).
Supervision
Postgraduate research supervision
Currently I'm first PhD supervisor for Ali Haddad
Past MPhil & PhD students include:
Emma Wadey
Penny Franklin
Marilena Hadjittofi
Isaac Badu-Appiah
Michelle King-Okoye
Alison Buchanan
Nicola Ayres
Liz Dunn
Diane Laverty
Sebastian Probst
Nicola Beech
Postgraduate research supervision
Teaching
Current teaching
- Advanced Communication Skills Module
Current doctoral students
- Ali Haddad: The good nurse in intensive care during the COVID-19 pandemic in Kuwait.
Doctoral Students who have completed
- 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: Enhancing nurses' confidence and competence in helping families to support dependent children through the death of a parent.
- 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
Publications
Intensive care unit (ICU) nurses were at the forefront of patient care during the coronavirus (COVID-19) pandemic. To date, no studies have explored what it meant to be a ‘good nurse’ in this unique and challenging context. As such, the aim of this study was to construct the meaning of the ‘good nurse’ in ICUs during a pandemic. Semi-structured interviews were conducted with 25 ICU nurses from three ICUs in Kuwait, who had worked during the COVID-19 pandemic. The data were analysed using Charmaz’s grounded theory methodology. The analysis showed that the good ICU nurse was defined by their sense of duty, which motivated compassionate and dedicated patient care. However, the nurses’ attempts to demonstrate virtue also had negative consequences for them. Selflessness led to unsustainable self-sacrifice, empathy led to emotional labour, and efforts to remain patient and respectful led to exhaustion as the nurses found themselves under increasing pressure. Attempts to remain mentally strong may have partially protected them from stress, but also deprived them of an outlet for authentic emotional expression and support. Ultimately, their efforts to preserve their quality of patient care despite the numerous challenges of the pandemic came at an increasing cost, and resulted in moral distress and impaired well-being.
Long-term conditions and accompanied co-morbidities now affect about a quarter of the UK population. Enabling patients and caregivers to communicate their experience of illness in their own words is vital to developing a shared understanding of the condition and its impact on patients’ and caregivers’ lives and in delivering person-centred care. Studies of patient language show how metaphors provide insight into the physical and emotional world of the patient, but such studies are often limited by their focus on a single illness. The authors of this study undertook a secondary qualitative data analysis of 25 interviews, comparing the metaphors used by patients and parents of patients with five longterm conditions. Analysis shows how similar metaphors can be used in empowering and disempowering ways as patients strive to accept illness in their daily lives and how metaphor use depends on the manifestation, diagnosis, and treatment of individual conditions. The study concludes with implications for how metaphorical expressions can be attended to by healthcare professionals as part of shared care planning.
Objective Mesothelioma is a rare cancer with a poor prognosis caused by exposure to asbestos. Psychosocial support and care for mesothelioma patients and their carers is limited and not tailored to their specific needs. The aim of this study was to explore patients' and carers' needs and experiences regarding psychosocial support and their coping mechanisms dealing with psychosocial problems. Methods A qualitative study was performed using semi-structured interviews with both mesothelioma patients and their carers. Participants were recruited through two specialised hospitals and two patient organisations. All interviews were transcribed verbatim and thematically analysed. Results Ten patients (70% male, mean age 67.7) and five carers (20% male, mean age 65) participated in the study. The main themes identified for patients were active coping, limited needs and limited knowledge and awareness about psychosocial support. The main themes for carers were passive coping and 'it's all about the patient'. Conclusion Mesothelioma patients do not seem to have high needs for psychosocial support, whereas carers do. However, knowledge about and awareness of psychosocial support is low among mesothelioma patients. The findings from this study should be used to adjust guidelines for psychosocial support in mesothelioma patients and their carers.
Objective To assess perspectives and experiences of healthcare professionals and other relevant stakeholders regarding psychosocial support and palliative care in mesothelioma patients and their relatives, to identify gaps and to explore potential improvements in current healthcare. Methods Individual, semi-structured interviews were conducted with healthcare professionals and other relevant stakeholders. Interviews were transcribed verbatim and analysed thematically using ATLAS.ti. Results In total, 16 respondents participated in an interview (69% women; mean age: 51.8 years (SD 12.41; range 28-75)). Four key themes were identified: (1) availability of tailored psychosocial and palliative care, (2) timely integration and organisation of psychosocial support and palliative care, (3) differences in provided support and care between healthcare professionals and hospitals and (4) training of healthcare professionals and stakeholders on psychosocial problems. Conclusion Our study showed that psychosocial support and palliative care for patients with mesothelioma could be improved. A more fluent transition between primary and secondary cancer care and early integration of psychosocial support and palliative care is advised. Lastly, more attention is needed for psychosocial and palliative care in the basic medical training of healthcare professionals.
Background Rare diseases where prognosis is poor provide limited scope for patient and public involvement (PPI). One such disease is mesothelioma, a cancer of the lung pleura or of the peritoneum caused by exposure to asbestos, where PPI is poorly documented. We undertook to explore how PPI could be facilitated in mesothelioma research. Methods An online survey with mesothelioma researchers (n = 23) assessed the perceived benefits and challenges of PPI in mesothelioma. Six online workshops and thirteen in-depth interviews with patients and the public explored their views on how PPI could be increased in mesothelioma and their motivations to become PPI representatives in the future. The survey data were analysed using descriptive statistics and the interviews, using Thematic Analysis. Results In the survey, 26% (n = 6) of the researchers did not include PPI in their research, while 74% (n = 17) did, finding it most beneficial at the stages of applying for funding and dissemination. The main perceived benefits of PPI were clarifying the research question and outcome measures, making research more credible and relevant to patients’ needs, and increasing its impact. The main perceived challenges to PPI were the general poor prognosis in mesothelioma, and funding timescales which hindered timely recruitment of PPI representatives. The analysis of the interviews with the patients and public revealed three main themes: “Motivations to become a PPI representative in the future”, “Understanding the nature of PPI during the project”, and “Perceived challenges to PPI in mesothelioma”. Altruism and the need for hope were the main reasons to wish to become involved in PPI in the future. For many participants, the project proved to be a journey of understanding the nature of PPI, a concept that was not easy to grasp from the start. The participants perceived certain barriers to PPI such as high symptom burden in mesothelioma, the abstract concept of PPI, and the use of scientific language. Conclusions The present research provides a detailed picture of the benefits and challenges of PPI in mesothelioma. We recommend long-term engagement with mesothelioma support groups so that researchers achieve meaningful and sustainable PPI in mesothelioma research.
Most nurses in China have not been trained to take care of end-of-life patients appropriately due to lack of educational resources and insufficient training. A palliative care program was launched by the Jiangsu Nursing Association (JNA training program) and to identify gaps in palliative care training. The main aim of this study was to evaluate the training effects of the JNA training program on nurses' knowledge and attitudes to palliative care. A cross-sectional study was conducted with 10 048 registered nurses in all regions of Jiangsu. All participants completed an online questionnaire using the Chinese version of The Palliative Care Quiz for Nursing (PCQN-C) and the Frommelt Attitude Toward Care of the Dying scale (FATCOD-B-C). A propensity score matched analysis was performed between the nurses who had attended the JNA training program and whose who hadn't. The average score of PCQN-C among all nurses was 8.79, while the mean score of the FATCOD-B-C was 103.62. Those participants who attended the JNA training program had significantly better scores than those who did not. Propensity score matching analysis showed that the palliative care training program failed to improve nurses' knowledge in psychosocial and spiritual care or their attitudes towards the necessity of family support although there was positive impact on other aspects of palliative care. Knowledge of palliative care among Chinese nurses remains low. Training programs may improve general knowledge and attitudes to palliative care. However, important aspects of knowledge such as communication skills, family support, and psychosocial aspects of care, are missing. These gaps should be filled in future palliative care training programs targeting nurses with oriental culture background.
Although disgust is recognized as a common and prominent emotion in healthcare, little is known about how healthcare professionals understand, experience and conceptualize disgust. The aim of the study was to gain an in-depth understanding of how nursing and midwifery students experience, understand and cope with disgust in their clinical work. Interviews were transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Six participants (all women: two nursing students, four midwifery students) from a university in the South of England were interviewed. Four superordinate themes with eight subthemes were identified. Overall, findings suggest that participants experience both moral and physical disgust; however, they find it difficult to talk about and use other terms to describe their experience. Findings are discussed through the lens of social identity theory, to understand the relevance of professional identity and how this might further maintain the disgust taboo. The strategies participants have developed in order to cope with disgust are explored and understood within the current healthcare climate. Future research should focus on ways of addressing the experience of disgust by healthcare professionals in order to improve the quality of care provided, especially in the climate of the COVID-19 crisis.
This study aimed to investigate the mental health status of nurses from low‐risk areas of novel coronavirus (COVID‐19) pandemic, its potential impact factors, and the main stressors under the normalized prevention and control in China. A mobile phone app‐based survey was conducted among registered nurses in Jiangsu province via a region‐stratified sampling method. The questionnaire consisted of items on the demographic characteristics of the nursing staff and their Depression, Anxiety, Stress Scale‐21 (DASS‐21) along with questions for self‐assessment of stressors that are associated with COVID‐19. STROBE guideline was used. Among 1803 nurses who were working in the low‐risk areas in Jiangsu, 22.0%, 29.8%, and 16.1% of them reported moderate to extreme levels of depression, anxiety, and stress, respectively. Having 11–15 years of working experience and being a fixed‐term contract nurse were associated with experiencing worse mental health outcomes while supporting‐Wuhan working experience and having mental health preparation course training were independent factors that had beneficial impact on their psychological well‐being afterward. In terms of source of pressure, a key finding of this study is that the main stressor among these nurses was the lack of patient’s understanding and cooperation (71.2%) which calls for better psychosocial communication between nurses and patients. The present findings would provide information for other regions at low risk of COVID‐19 and may aid the provision of support and interventions for the benefit of the psychological well‐being of nurses who are exposed to life‐threatening occupational risks and are more vulnerable to the pandemic than others.
Additional publications
Chen X, Qiao C, Arber A, Shen Y, Rui Y, Pei Z et al (2023) Enhancing resilient coping strategies for quality of life in Chinese adult children caregiving for parents with advanced cancer: a cross-sectional study. Supportive Care in Cancer, 31,10
Marcu A, McGregor F, Egan B, Hill K, Cook T, Arber A. (2023) Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers and patient organisations. Research Involvement and Engagement 9,15
Frissen A-R, Burgers S, van der Zwan J M, Raijmakers N, Arber A, Kunst P, Aerts M J, Duijts S. (2021) Experiences of healthcare professionals with support for mesothelioma patients and their relatives: identified gaps and improvements for care. European Journal of Cancer Care, 30,2
Prusak A, van der Zwan J M, Aarts M J, Arber A, Cornelissen R, Burgers S, Duijts S. (2021) The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care. European Journal of Cancer Care, 30,7
Chen X, Arber A, Gao J, Zhang L, Ji M, Wang D, Wu J, Du J. (2021) The mental health status among nurses from low-risk areas under normalized COVID-19 pandemic prevention and control in China: A cross sectional study. International Journal of Mental Health Nursing, 30,4 975-987
Maguire R, Connaghan J, Arber A. et al (2020) Advanced symptom management system for patients with malignant pleural mesothelioma (ASyMSmeso): mixed methods study. Journal of Medical Internet Research, 22,10 e19180
Hadittofi M, Gleeson K, Arber A. (2020) The experience of disgust by health professionals: a literature review. International Journal of Nursing Studies, 110, 103720
Wang Q, Arber A, Shen A, Qiang W. (2020) Perspectives of Chinese cancer patients toward disclosure of cancer diagnosis to their minor children. Cancer Nursing 43,1 2-11
Allan HT, Arber A eds (2018) Emotions & Reflexivity in Health and Social Care Field Research. Palgrave Macmillan, Switzerland
King-Okoye M, Arber A, Faithfull S (2019) Beliefs that contribute to delays in diagnosis of prostate cancer among Afro-Caribbean men in Trinidad and Tobago. Psycho Oncology 28, 1321-1327
Gallagher A, Arber A, Peacock M (2018) Helping Young People with Learning Disabilities and their Families to Plan End of life Care: The ADVANCE Toolkit for Care-Givers. Learning Disability Practice, 21,6
Franklin P, Arber A, Reed L, Ream E (2018) 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 49-65
Arber A, Odelius A (2018) The experiences of oncology and palliative care nurses when supporting parents who have cancer and dependent children. Cancer Nursing 41, 3 248-254
Cox A, Arber A, Gallagher A, MacKenzie M, Ream E (2017) Establishing priorities for UK oncology nursing research: nurse and patient collaboration. Oncology Nursing Forum 44,192-203
King-Okoye M, Arber A, Faithfull S (2017) Routes to diagnosis for men with prostate cancer: men’s beliefs about how changes to their bodies and symptoms influence help-seeking actions. European Journal of Oncology Nursing 30, 48-58
Ayers NE, Vydelingum V, Arber A (2017) An ethnography of managing emotions when talking about life-threatening illness. International Nursing Review 64,4 486-493
Cox AC, 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
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
Arber A (2016) How do nurses "think family" and support parents diagnosed with cancer who have dependent children? Asia-Pacific Journal of Oncology Nursing 3,3 2014-2017
Arber A (2016) Team communication in the hospice setting. In Wittenberg E. (ed) et al. Textbook of Palliative Care Communication. Chapter 41 pg. 340-345
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
Gallagher A, Bousso RS, McCarthy J, Kohlen H, Arber A et al (2015) Negotiated reorienting: A grounded theory of nurses’ end-of-life decision-making in the intensive care unit. International Journal of Nursing Studies, 52, 4, pp. 794-803
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
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. European Journal of Cancer Care, 26,2
Gregg N, Arber A, Ashkan K, Brazil L, Bhangoo RS et al (2014 Neurobehavioural changes in patients following brain tumour: patients and relatives perspective, Supportive Care in Cancer 22,11
Arber A, Spencer L (2013) 'It's all bad news': the first 3 months following a diagnosis of malignant pleural mesothelioma. Psycho-Oncology 22,7
Probst S, Arber A, Faithfull S (2012) Malignant fungating wounds - The meaning of living in an unbounded body. European Journal of Oncology Nursing 17,1
Probst S, Arber A, Faithfull S (2012) Caring for a loved one with a malignant fungating wound. Supportive Care in Cancer 20,12
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. European Journal of Oncology Nursing 17,1