Dr Anne Arber

Research Interests

  • Supportive care of patients with advanced cancer
  • Carers, and family members affected by cancer
  • Communication and breaking bad news

Ongoing Research Projects

  • Peer support for carers of people with advanced cancer.  University of Surrey Research Support Fund. April 2016
  • Real time symptom assessment for patients with malignant pleural mesothelioma. Funded by British Lung Foundation September 2016-2018
  • 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.

Research Projects

  • 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).

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.
  • Michelle King-Okoye: Men and their partners' experiences of prostate cancer in Trinidad and Tobago.
  • Evangelos Latzourakis: Cypriot nurses’ perceptions on role and preparation in caring for patients with chronic kidney disease.
  • Jackie McBride: Patient experience and meaning of using a remote monitoring tool within the context of cancer treatment
  • Emma Wadey: An exploration of the mental health and well-being of those bereaved by suicide

Doctoral Students who have completed

  • 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

Conference presentations

Arber A, Greenwood N (2013) Invited speakers ESRC seminar series: Supporting carers of people at the end of life. University of York 11th September 2013

Arber A (2012) How do carer’s talk about ‘illness work’ and ‘caring’? 29th Annual Qualitative Analysis Conference. Memorial University of Newfoundland, St John’s Campus, Canada June 20-22nd 2012

Beech N, Arber A, Faithfull S (2011) Restoring a sense of wellness following colorectal cancer: a grounded theory. BSA Medical Sociology Group 43rd Annual Conference University of Chester 14th-16th September 2011

Arber A (2010) Invited Key Note Speaker: First three months following a diagnosis of pleural mesothelioma. Manchester Lung Cancer Group November 2010. The Christie Hospital, Manchester, UK

Invited speaker - Masterclass in Advanced Communication Skills- ESO-ESMO Masterclass in Clinical Oncology Zurich, Switzerland 2012-2015

Contact Me

E-mail:
Phone: 01483 68 6768

Find me on campus
Room: 20 DK 04


My office hours

Monday - Friday, 9.00 - 5.30 pm by appointment only

Publications

Highlights

  • 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'. Springer Supportive Care in Cancer,

    Abstract

    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.

Journal articles

  • 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'. SAGE Publications Palliative Medicine, , pp. 1-17.

    Abstract

    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.

  • Wang Q, Arber A, Shen A, Qiang W. (2018) 'Perspectives of Chinese Cancer Patients towards Disclosure of Cancer Diagnosis to Their Minor Children'. Lippincott, Williams & Wilkins Cancer Nursing,
    [ Status: Accepted ]

    Abstract

    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.

  • King-Okoye M, Arber A, Faithfull S. (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'. Elsevier European Journal of Oncology Nursing (EJON), 30, pp. 48-58.
    [ Status: Accepted ]

    Abstract

    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.

  • Arber A, Odelius A. (2017) 'The experiences of oncology and palliative care nurses when supporting parents who have cancer and dependent children'. Lippincott, Williams & Wilkins Cancer Nursing, 41 (3), pp. 248-254.

    Abstract

    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.

  • Cox A, Arber A, Gallagher A, MacKenzie M, Ream E. (2017) 'Establishing priorities for UK cancer nursing research: Nurse and patient collaboration in a UK Oncology Nursing Society Delphi survey'. Oncology Nursing Society Oncology Nursing Forum, 44 (2), pp. 192-203.

    Abstract

    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.

  • Ayers N, Vydelingum V, Arber A. (2017) 'An ethnography of managing emotions when talking about life-threatening illness.'. Wiley International Nursing Review, 64 (4), pp. 486-493.

    Abstract

    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.

  • 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'. RCN Publishing Nursing Older People, 29 (1), pp. 27-35.

    Abstract

    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.

  • Arber AM. (2016) 'How do nurses “Think Family” and support parents diagnosed with cancer who have dependent children?'. Wolters Kluwer Medknow Publications Asia-Pacific Journal of Oncology Nursing, 3 (3), pp. 214-217.
  • Laverty D, Arber AM, Faithfull S . (2016) 'Respite for patients and carers in neurodegenerative disease: a grounded theory study'. Hayward Medical Communications European Journal of Palliative Care, 23 (4), pp. 175-179.

    Abstract

    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.

  • 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'. ELSEVIER SCI LTD EUROPEAN JOURNAL OF ONCOLOGY NURSING, 21, pp. 90-96.
  • 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),

    Abstract

    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.

  • Mishelmovich N, Arber A, Odelius A. (2015) 'Breaking significant news: The experience of clinical nurse specialists in cancer and palliative care'. ELSEVIER SCI LTD EUROPEAN JOURNAL OF ONCOLOGY NURSING, 21, pp. 153-159.
  • 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, England: 52 (4), pp. 794-803.
  • 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,
  • 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.
  • 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.
  • 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'. Springer Supportive Care in Cancer,

    Abstract

    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.
  • 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'. Wiley European Journal of Cancer Care, UK: Article number Published online , pp. 1-20.
  • Arber AM, Spencer L. (2013) '‘It’s all bad news’: the first 3 months following a diagnosis of malignant pleural mesothelioma'. Wiley Psycho-Oncolgy, UK: 22 (7) Article number pon_3162 , pp. 1528-1533.

    Abstract

    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.

  • Probst S, Arber A, Faithfull S. (2013) 'Coping with an exulcerated breast carcinoma: an interpretative phenomenological study'. MA HEALTHCARE LTD JOURNAL OF WOUND CARE, 22 (7), pp. 352-360.
  • 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.
  • Gamlen E, Arber A. (2013) 'First assessments by specialist cancer nurses in the community: an ethnography'. Elsevier European Journal of Oncology Nursing (EJON), UK: 17, (6), pp. 695-902.

    Abstract

    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'. Hayward Medical Communications European Journal of Palliative Care, UK: 20 (2), pp. 72-76.

    Abstract

    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.
  • Laverty D, Faithfull S, Arber AM. (2013) 'Developing respite care at an inner London hospice'. Hayward Medical Communications European Journal of Palliative Care, 20 (2), pp. 72-76.

    Abstract

    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...

  • 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.
  • Probst S, Arber A, Faithfull S. (2012) 'Malignant fungating wounds - The meaning of living in an unbounded body.'. Eur J Oncol Nurs,

    Abstract

    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.

  • Probst S, Arber A, Faithfull S. (2012) 'Malignant fungating wounds - The meaning of living in an unbounded body'. European Journal of Oncology Nursing,
  • 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.
  • Probst, S, Arber A, Trojan A, Faithfull S. (2012) 'Caring for a loved one with a malignant fungating wound'. Springer-Verlag Support Care Cancer, 20, pp. 3065-3070.

    Abstract

    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.

  • 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.'. Elsevier Eur J Oncol Nurs, 17 (1), pp. 52-58.

    Abstract

    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.

  • 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.

    Abstract

    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, 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.'. Mark Allen Healthcare Int J Palliat Nurs, England: 16 (1), pp. 24-30.
  • Arber A, Gallagher A. (2009) 'GENEROSITY AND THE MORAL IMAGINATION IN THE PRACTICE OF TEAMWORK'. SAGE PUBLICATIONS LTD NURSING ETHICS, 16 (6), pp. 775-785.
  • Probst S, Arber A, Faithfull S. (2009) 'Malignant fungating wounds: A survey of nurses' clinical practice in Switzerland'. ELSEVIER SCI LTD EUROPEAN JOURNAL OF ONCOLOGY NURSING, 13 (4), pp. 295-298.
  • Arber A. (2008) 'Team meetings in specialist palliative care: Asking questions as a strategy within interprofessional interaction'. SAGE PUBLICATIONS INC QUALITATIVE HEALTH RESEARCH, 18 (10), pp. 1323-1335.
  • Hughes N, Arber A. (2008) 'The lived experience of patients with pleural mesothelioma.'. Int J Palliat Nurs, England: 14 (2), pp. 66-71.
  • Arber A. (2007) '"Pain talk" in hospice and palliative care team meetings: An ethnography'. PERGAMON-ELSEVIER SCIENCE LTD INTERNATIONAL JOURNAL OF NURSING STUDIES, 44 (6), pp. 916-926.
  • Arber AM, Arber . (2006) 'Reflexivity a challenge for the researcher as practitioner'. Sage Journal of Research in Nursing, 11 (2), pp. 147-157.
  • Arber A. (2006) 'Forum for Applied Education and Training: Rethinking pain assessment.'. Eur J Cancer Care (Engl), England: 15 (2), pp. 200-207.
  • Arber A. (2006) 'Reflexivity: A challenge for the researcher as practitioner?'. Sage Publications Journal of Research in Nursing, 11 (2), pp. 147-157.

    Abstract

    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.

  • Li S, Arber A. (2006) 'The construction of troubled and credible patients: A study of emotion talk in palliative care settings'. Sage Qualitative Health Research, 16 (1), pp. 27-46.

    Abstract

    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.

Conference papers

  • 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'. ELSEVIER SCI LTD EUROPEAN JOURNAL OF CANCER, Vienna, AUSTRIA: European Cancer Congress 51, pp. S660-S660.
  • Arber A, Odelius AC. (2015) 'How do specialist oncology staff 'think family' and support patients with advanced cancer who have dependent children?'. ELSEVIER SCI LTD EUROPEAN JOURNAL OF CANCER, Vienna, AUSTRIA: European Cancer Congress 51, pp. S51-S51.
  • Arber A, Odelius A-C. (2013) 'The “new normal” delivering information about oral chemotherapy in the clinic'. Europa Hotel, Belfast: RCN International Nursing Research Conference
  • Probst S, Arber A, Faithfull S. (2009) 'Malignant fungating wounds: a survey of nurses' clinical practice in Switzerland'. PERGAMON-ELSEVIER SCIENCE LTD EJC SUPPLEMENTS, Berlin, GERMANY: 15th Congress of the European-Cancer-Organization/34th Multidisciplinary Congress of the European-Society-for-Medical-Oncology 7 (2), pp. 232-233.

Reports

  • Odelius A, Arber AM, Reed P, Hayes M. (2014) The Think Family project. in (ed.) The Think Family project. A project funded by Macmillan Cancer Support. University of Surrey , pp. 1-45.

Theses and dissertations

  • Buchanan A. (2017) The unmet supportive care needs of people with cancer pain..
    [ Status: Approved ]

    Abstract

    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.

  • Laverty D. (2015) Respite care for patients with neuro-degenerative diseases..
    [ Status: Approved ]

    Abstract

    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.

  • Dunn E. (2015) Safe in the bubble, out into the unknown : returning home following allogeneic stem cell transplantation. A phenomenological study.
    [ Status: Approved ]

    Abstract

    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.

  • Ayers N. (2015) 'Not wanting to upset' : the management of emotions in caring for the dying : an ethnographic study in Addis Ababa, Ethiopia..
    [ Status: Approved ]

    Abstract

    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.

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