Professor Jayne Brown

Job: Professor of Palliative Care

Faculty: Health and Life Sciences

School/department: School of Nursing and Midwifery

Address: De Montfort University, The Gateway, Leicester, LE1 9BH.

T: +44 (0)116 201 3961

Research group affiliations

Centre for the Promotion of Excellence in Palliative Care (CPEP)
Nursing and Midwifery Research Centre
Health Policy Research Unit.

Publications and outputs

Disclosure in lesbian, gay and bisexual cancer care: towards a salutogenic healthcare environment
Disclosure in lesbian, gay and bisexual cancer care: towards a salutogenic healthcare environment Fish, Julie; Brown, Jayne; Williamson, I. Background: The literature on sexual orientation disclosure is arguably one of the most developed in the field of lesbian, gay and bisexual (LGB) people in healthcare in English speaking countries however, relatively little research has been conducted into disclosure in cancer care. Studies have been mainly undertaken in primary care where distinct circumstances pertain and where the benefits of disclosure include obtaining appropriate health information, treatment advice and avoiding misdiagnosis. Methods: We conducted an in-depth qualitative study primarily recruiting patients through oncology care in hospital settings and through LGB community cancer support groups. Data were gathered through semi-structured interviews with 30 LGB patients with different cancer types. Results: Data were analysed using thematic analysis and interpreted and interrogated through salutogenesis theory which offers a useful lens through which to consider the health promoting effects of sexual orientation disclosure in cancer care. We present three themes as part of the analysis: Authenticity as a driver for disclosure in cancer care, Partners as a (potential) salutogenic resource and Creating safe, healing environments conducive to disclosure. The findings are reported and discussed in relation to three inter-related concepts from current salutogenesis theorising including a sense of coherence, generalised resistance resources and healing environments which can facilitate sexual orientation disclosure. Conclusion: Our findings enable a more nuanced approach to understanding disclosure in this context. This study contributes to the literature through its articulation of the salutogenic potential of disclosure (if responded to appropriately) for LGB patients as individuals, in relationship to their partners or carers and the role of creating a visible healing-oriented optimal environment to promote quality of life and recovery. open access article
Development of a tool to support managers in planning and evaluating staff training
Development of a tool to support managers in planning and evaluating staff training Padley, Wendy; Long, Jaqui; Welyczko, Nikki; Dowsett, Deborah; Salter, Nick; Ford, Karen; Greenway, Carol; Brown, Jayne Aim To explore decision-making and evaluation strategies used by healthcare managers in relation to staff training and education, and to develop a tool to support managers with these tasks. Method Using snowball sampling, 30 healthcare managers in a variety of healthcare settings were recruited and interviewed using semi-structured interviews. Data were transcribed and analysed using thematic analysis. Findings Four overarching themes were identified in relation to decision-making regarding staff training: the nature and characteristics of courses relevant to practice; the effect of practice requirements for education and training; staff motivation and interest; and the process of staff selection for training. Managers did not use formal, structured processes to make decisions about staff selection for training, nor to evaluate the outcomes of the training. Instead, they largely relied on their personal experience, knowledge and professional judgements. Based on these findings, the study team developed the Assessment, Planning and Evaluation of Training (APET) tool to support the planning and evaluation of training, and they invited feedback from healthcare managers. Positive feedback suggests that this tool could support managers’ decision-making in relation to planning and evaluating staff training. Conclusion Healthcare managers’ decision-making in relation to the planning and evaluation of staff training relied on judgements based on their personal experience and knowledge. The APET tool developed by the study team has the potential to ensure vital resources such as time and money are used optimally, which would improve outcomes for staff, patients and healthcare organisations.
Coming 'Home": Place Bonding for parents accessing or considering hospice based care
Coming 'Home": Place Bonding for parents accessing or considering hospice based care Dunbar, Helena; Carter, Bernie; Brown, Jayne Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents’ views of considering/using a children’s hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming ‘Home’. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could ‘come home’. This study was part of a Phd studentship The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
Healthcare for Older People Research in Leicestershire
Healthcare for Older People Research in Leicestershire Conroy, Simon; Brown, Jayne; Bell, Katie; Haunton, Victoria; Robinson, TG; Bannerjee, J; Martin, G; Regen, E; Phelps, K; O'Kelly, K; Kondova, D; Williamson, I.; Wildbur, D.; Fallman, S; Chen, L; Oldridge, Louise; Larkin, M; Wilson, A; Agarwal, S.; Bankart, J.; Subramaniam, H; Raghavan, Raghu; Panerai, R; Clague-Baker, Nicola; Chung, E; Stahl, B; Chen, F; Triboan, D; Psychoula, I; Northcott, Andy Academic geriatric medicine in Leicester . There has never been a better time to consider joining us. We have recently appointed a Professor in Geriatric Medicine, alongside Tom Robinson in stroke and Victoria Haunton, who has just joined as a Senior Lecturer in Geriatric Medicine. We have fantastic opportunities to support students in their academic pursuits through a well-established intercalated BSc programme, and routes on through such as ACF posts, and a successful track-record in delivering higher degrees leading to ACL post. We collaborate strongly with Health Sciences, including academic primary care. See below for more detail on our existing academic set-up. Leicester Academy for the Study of Ageing We are also collaborating on a grander scale, through a joint academic venture focusing on ageing, the ‘Leicester Academy for the Study of Ageing’ (LASA), which involves the local health service providers (acute and community), De Montfort University; University of Leicester; Leicester City Council; Leicestershire County Council and Leicester Age UK. Professors Jayne Brown and Simon Conroy jointly Chair LASA and have recently been joined by two further Chairs, Professors Kay de Vries and Bertha Ochieng. Karen Harrison Dening has also recently been appointed an Honorary Chair. LASA aims to improve outcomes for older people and those that care for them that takes a person-centred, whole system perspective. Our research will take a global perspective, but will seek to maximise benefits for the people of Leicester, Leicestershire and Rutland, including building capacity. We are undertaking applied, translational, interdisciplinary research, focused on older people, which will deliver research outcomes that address domains from: physical/medical; functional ability, cognitive/psychological; social or environmental factors. LASA also seeks to support commissioners and providers alike for advice on how to improve care for older people, whether by research, education or service delivery. Examples of recent research projects include: ‘Local History Café’ project specifically undertaking an evaluation on loneliness and social isolation; ‘Better Visits’ project focused on improving visiting for family members of people with dementia resident in care homes; and a study on health issues for older LGBT people in Leicester. Clinical Geriatric Medicine in Leicester We have developed a service which recognises the complexity of managing frail older people at the interface (acute care, emergency care and links with community services). There are presently 17 consultant geriatricians supported by existing multidisciplinary teams, including the largest complement of Advance Nurse Practitioners in the country. Together we deliver Comprehensive Geriatric Assessment to frail older people with urgent care needs in acute and community settings. The acute and emergency frailty units – Leicester Royal Infirmary This development aims at delivering Comprehensive Geriatric Assessment to frail older people in the acute setting. Patients are screened for frailty in the Emergency Department and then undergo a multidisciplinary assessment including a consultant geriatrician, before being triaged to the most appropriate setting. This might include admission to in-patient care in the acute or community setting, intermediate care (residential or home based), or occasionally other specialist care (e.g. cardiorespiratory). Our new emergency department is the county’s first frail friendly build and includes fantastic facilities aimed at promoting early recovering and reducing the risk of hospital associated harms. There is also a daily liaison service jointly run with the psychogeriatricians (FOPAL); we have been examining geriatric outreach to oncology and surgery as part of an NIHR funded study. We are home to the Acute Frailty Network, and those interested in service developments at the national scale would be welcome to get involved. Orthogeriatrics There are now dedicated hip fracture wards and joint care with anaesthetists, orthopaedic surgeons and geriatricians. There are also consultants in metabolic bone disease that run clinics. Community work Community work will consist of reviewing patients in clinic who have been triaged to return to the community setting following an acute assessment described above. Additionally, primary care colleagues refer to outpatients for sub-acute reviews. You will work closely with local GPs with support from consultants to deliver post-acute, subacute, intermediate and rehabilitation care services. Stroke Medicine 24/7 thrombolysis and TIA services. The latter is considered one of the best in the UK and along with the high standard of vascular surgery locally means one of the best performances regarding carotid intervention.
Coming out in cancer care: Is disclosure of sexual orientation beneficial?
Coming out in cancer care: Is disclosure of sexual orientation beneficial? Fish, Julie; Brown, Jayne; Williamson, I. Nurses and other health professionals are to ask about sexual orientation at every face-to-face contact across the NHS from 2019. However, there are concerns about the need for, and relevance of, sexual orientation disclosure and of the potential for discomfort and embarrassment. We conducted qualitative interviews with fifteen lesbian, gay and bisexual patients to investigate how experiences of cancer care are mediated by disclosure. Using thematic analysis, three themes emerged: identifying the barriers to disclosure, approaches to, and facilitators of, coming out, and small actions/big impact: nurses’ responses to disclosure. In conclusion, we situate disclosure within a model of holistic care recognising that patients’ individual needs constitute one of the eight principles of quality nursing. Treating the whole person means that patients are more likely to engage in positive health behaviours, have more knowledge, skills and confidence to manage their health and be more satisfied with their care. The file attached to this record is the author's final peer reviewed version.
Coming out in cancer care: Is disclosure of sexual orientation beneficial?
Coming out in cancer care: Is disclosure of sexual orientation beneficial? Fish, Julie; Brown, Jayne; Williamson, I. Nurses and other health professionals are to ask about sexual orientation at every face-to-face contact across the NHS from 2019. However, there are concerns about the need for, and relevance of, sexual orientation disclosure and of the potential for discomfort and embarrassment. We conducted qualitative interviews with fifteen lesbian, gay and bisexual patients to investigate how experiences of cancer care are mediated by disclosure. Using thematic analysis, three themes emerged: identifying the barriers to disclosure, approaches to, and facilitators of, coming out, and small actions/big impact: nurses’ responses to disclosure. In conclusion, we situate disclosure within a model of holistic care recognising that patients’ individual needs constitute one of the eight principles of quality nursing. Treating the whole person means that patients are more likely to engage in positive health behaviours, have more knowledge, skills and confidence to manage their health and be more satisfied with their care. The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
Towards LGBTQ-affirmative cancer care and support: Barriers and opportunities
Towards LGBTQ-affirmative cancer care and support: Barriers and opportunities Williamson, I. R.; Fish, Julie; Wildbur, D.; Bell, Katie; Padley, Wendy; Brown, Jayne Background: Survey data suggest that LGBT people report lower levels of satisfaction with healthcare for cancer than heterosexuals. This presentation summarises findings from recent qualitative research to understand the experiences of British LGBT people with cancer and their long-term partners. Methods: Participants were recruited through 5 oncology units at British hospitals, 2 cancer support charities and through media campaigns. In-depth interviews typically lasting between 45 and 75 minutes were carried out with 31 cancer patients who identified as lesbian (N=13), gay (N=14), bisexual (N= 3) and queer (N=1) and 9 long-term partners of cancer patients who identified as lesbian (N= 5), gay (N= 2) and trans* (N=2). Data were analysed through thematic analysis. Findings: Three themes are presented: Understanding the Motives, Meanings and ‘Mechanics’ of Disclosure explores how decisions around whether to ‘come out’ as LGBTQ are influenced by several factors including anticipated stigma, perceived moral or political ‘obligation’ and the manner of healthcare professionals. Creating and Communicating LGBTQ-Affirmative Spaces outlines anxieties faced by LGBTQ patients in interactions with staff and patients in clinical spaces such as waiting-rooms and hospital wards and the desire for more explicit evidencing of an anti-discriminatory culture. Finally Seeking LGBTQ-tailored Information and Support shows how current cancer support typically fails to meet psychosocial and psychosexual needs of LGBTQ patients. Discussion: The findings can be used to influence policy and practice by statutory and voluntary agencies to ensure that effective oncology treatment is accompanied by an holistic understanding of the needs and concerns of LGBTQ patients
Place Bonding in Children's Hospice Care- a qualitative study
Place Bonding in Children's Hospice Care- a qualitative study Dunbar, Helena; Carter, Bernie; Brown, Jayne Background Limited knowledge exists of parents’ perceptions and experiences of children’s hospices and how these contribute to the varied access and uptake of services. Aim This study aimed to explore parents’ perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. Methods A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semi-structured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7). Results A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. Conclusions Finding a place where they belonged and felt at ‘home’ made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children’s hospices a new perspective from which to view how parents access, accept and build relationships at the hospice. The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link.
Selecting absorbent continence pads for people with dementia
Selecting absorbent continence pads for people with dementia Brown, Jayne; Knifton, Chris Incontinence is a common problem in people with dementia and can be due to a complex combination of physical and functional issues. This article reports on a product evaluation of pant-style continence pads, which found they could help promote dignity and independence in care home residents who had mild to moderate dementia. The Publisher's final version can be found by following the URI link.
Promoting good outcomes in Lesbian, Gay and Bisexual cancer care: a qualitative study of patients’experiences in clinical oncology
Promoting good outcomes in Lesbian, Gay and Bisexual cancer care: a qualitative study of patients’experiences in clinical oncology Fish, Julie; Williamson, I.; Brown, Jayne; Padley, Wendy; Bell, Kathleen; Long, J. EXECUTIVE SUMMARY Cancer inequalities, including differences in cancer outcomes and patient satisfaction, affect a range of groups including lesbian, gay and bisexual (LGB) people. In its strategy to reduce these inequalities, the Department of Health commissioned the Cancer Patient Experience Survey (CPES) providing baseline data in which LGB patients were more likely to say their experiences were less positive than those of heterosexual patients. These differences included accessible information, psychosocial support and the human rights concerns of dignity and respect. The CPES, which was carried out in four successive years (2010-2014), suggesting that these are intractable problems, found that LGB patients were more likely to disagree with statements such as they ‘never felt treated as a set of cancer symptoms rather than as a whole person’ or the ‘doctor never talked about me as if I wasn’t there’. The CPES did not collect qualitative data and consequently the reasons for these differences were not known. This De Montfort University study, funded by Macmillan, illuminates some of the reasons for these survey findings as we were able to gather people’s accounts of their treatment and care. This report identifies key moments in the cancer journey where care provided for LGB cancer patients can contribute to their recovery and well-being. Alongside this evidence of unmet need, NHS England (2017) has recently issued guidance to support the introduction of mechanisms for recording sexual orientation across all health services in England for patients over 16. It recommends that sexual orientation monitoring occurs at every face to face contact with the patient. The collection of this monitoring data has implications; not only for cancer professionals, but also that patients themselves understand why this information is being requested. The report draws on LGB cancer patients’ motivations and methods for disclosing their sexual orientation and the perceived benefits of doing so for their quality of life. The findings will contribute to understanding the health benefits of coming out and how disclosure might be facilitated in hospital settings. This study provides compelling data about some of the factors underpinning inequalities in the experiences and, potentially, cancer outcomes for LGB patients. Managing the worry about whether it is safe to disclose their sexual orientation to professionals and the uncertainty about how this will be received presents an additional burden for LGB people with cancer. Participants in this study were sometimes hesitant to disclose because the opportunity did not arise or they were uncertain about its relevance. The report identifies some moments that matter in the care relationship where professionals could seek to facilitate disclosure thus contributing to Achieving World Class Cancer Outcomes (Department of Health, 2015) for LGB patients. In addition, the findings point to the importance of creating an inclusive care environment; participants noted that even in the Cancer Centres of Excellence, there were few visible signs of inclusion for LGB cancer patients. Steps to promote inclusion may entail a diversity policy statement, imagery on walls or the display of a LGB staff network on a hospital notice-board. participants also shared experiences where they were accepted in an everyday manner by hospital staff. They often talked about a whole hospital approach where they were acknowledged by staff from porters, health care assistants, nurses and consultants. These cancer narratives also highlight the need for LGB cancer support groups and tailored resources. The lack of LGB support groups in the UK mean that some participants were coping with their cancer with few forms of social and emotional support and they found few sources of information which addressed their needs. There was a clear demand for a greater range of LGB support resources that were relevant to the challenges and concerns of specific cancer types and reports of rather patchy provision in this regard, with differences influenced primarily by geographic location and cancer type. Finally, our findings suggest that participants had heterogeneous expectations of cancer care requiring complex .skills from professionals. Yet there is little or no curricula content in university programmes of Medicine or Nursing. This might suggest a lack of recognition of distinctive cancer care needs and may explain why participants reported different patient experiences even within the same hospital. The inclusion of research with LGB patients alongside heterosexual populations and relevant case studies to underpin Learning and Development and Continuous Professional Development to inform understanding of patient experience, psychosocial concerns and cancer risk is urgently needed.

Click here for a full listing of Jayne Brown‘s publications and outputs.

Research interests/expertise

Palliative Care
End of Life Care
Health and social care needs of older people
Family carers
Practice development in palliative and gerontological nursing
Decision making in clinical practice.

Areas of teaching

Palliative care
End of life issues
Care of older people and family carers
Practice Development in gerontological nursing
Leadership in nursing.

Qualifications

University of Sheffield PhD: Student nurses’ experience of learning to care for older people in enriched environments: a constructivist inquiry 2006

University of Sheffield Master of Medical Science in Clinical Nursing 1996

University of Sheffield Post Graduate Certificate in Education 1996

University of Sheffield Diploma in Health Care Studies (Distinction) 1993

University of Sheffield Certificate in Health Care Studies (Distinction) 1992

Courses taught

Prof. Brown contributes to the Masters in Palliative Care, and pre-registration nursing courses.

Membership of professional associations and societies

Palliative Care Research Association

International Palliative Care Family carer Research Collaboration (IPCFRC)

Professional licences and certificates

North Trent College of Nursing & Midwifery Registered General Nurse 1990
English National Board Registered Nurse Tutor 1996

Conference attendance

Brown Jayne (2012) September: An invited presentation Napier University Edinburgh. The Senses Framework
Brown Jayne; Seymour Jane Unbiased Group(2012) June: An invited presentation European Association of Palliative Care World Congress Trondheim (Norway) Nurses Beliefs, Attitudes and Behaviours in Palliative Sedation: Evidence from a Multicentre Study in the UK, associated with current ESRC grant
Brown Jayne; Bird Lydia; Seymour Jane (2012) June: European Association of Palliative Care. World Congress Trondheim (Norway). Comparison of the Incidence and Characteristics of Sedation Practice in the End of Life Care of Cancer Patients in the UK Hospice and Hospital Settings. Paper, associated with current ESRC grant I was working on in Nottingham.
Wilson Eleanor; Brown Jayne (2012) March: Marie Curie Annual Palliative Care Conference, London. Nurses’ decisions to use anticipatory prescriptions in end of life care: study overview. Poster associated with current Marie Curie grant.
Seymour Jane, Brown Jayne (2012) April: Palliative Care Congress Gateshead. ‘There’s always something else we can do’: meanings and experiences with sedation in end of life care among specialist palliative care staff. Paper associated with current ESRC grant I was working on in Nottingham.
Brown Jayne (2011) The Senses Framework in Practice’ Key note paper to National Conference of Allied Health Professionals Scotland.
Brown, J. (2009) Family Caring across Europe: Key note presentation for the National Carers Conference – Carers Scotland. Exploring Family Caring in Europe.

Consultancy work

Prof. Brown has expertise in developing nursing practice, nursing leadership health and social care of older people, care homes, family carers, palliative care, hospice care, end of life care, nursing, nursing practice, nurse leadership (available).

Current research students

1st Supervisor to student to be appointed on 18 June 2012, to commence October 2012

Externally funded research grants information

2011 Marie Curie - (Seymour, Brown, Addington-Hall, Payne, Mathers) Understanding the role of nurses in decisions to use anticipatory prescriptions to manage symptoms and distress in the last days of life: a prospective community based case study using mixed methods (£166,000).
2009 NHS 24- (Brown, Cund, Tolson) Evaluation of the role of Band 5 and Band 6 nurses (£5,000).
2008-2009 QNIS (Scotland) Partnerships in Care Project – (Tolson, Brown, Roome) Development and testing of an educational intervention to promote partnership working between community nurses, older patients and family carers (£20,000).
2007-2010 NHS Education for Scotland. The PLACE Project - The profile of learning achievements in care project (Brown, Tolson, Duffy). A project to develop and test instruments for evaluating the clinical learning environment and user involvement from the perspective not only of student nurses but also those of older people, family carers, qualified nurses, and paid carers. Produce a tool kit for use by Charge nurses (£120,000).

Internally funded research project information

PhD studentship exploring the end of life care needs of families affected by genetic conditions, commencing October 2012.

Professional esteem indicators

Reviewer for:

International Journal of Nursing Studies
Symbolic Interaction
BMC Palliative Care
Journal of Advanced Nursing
NIHR Health Services Research Programme

Case studies

The majority of my research has focused on developing practice in the care of older people and family carers in a variety of settings. For example I have been privileged to take a key role in the development and testing of the ‘Senses Framework’ (Nolan et al 2002, 2007).

Several major research studies have shown this framework to be effective in creating an enriched environment of care for older people in a variety of clinical settings and it has been used by a wide range of clinicians and researchers both nationally and internationally, for example, the EU funded project Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage: EUROFAMCARE, which employed the Senses Framework as an analytical lens.

This six country study looked at the support needs of family carers across Europe. As UK co-ordinator I was responsible for developing an extensive questionnaire which was translated and used in 6 countries. As a result colleagues and I were invited to address members of the European Parliament in relation to the needs of family carers across Europe and I also appeared on national television in Poland to discuss carer issues.

The ‘Senses Framework’ has also been highly influential in the UK being frequently cited in health policy in the UK in documents such as Care 21 Scotland, and the National Service Framework for Older People for example. The findings from my own doctoral thesis ‘Student nurses’ experience of learning to care for older people in enriched environments: a constructivist inquiry’, which used the Senses Framework to explore factors which supported student nurses in choosing to work with older people contributed to ‘My Home Life’, a national initiative aimed at improving quality of life of those living and working in care homes.

Following on from my thesis I gained a research grant from NHS Education Scotland (the PLACE study) to develop and introduce an a toolkit designed to profile the clinical learning environment from the perspective not only of students, but also of qualified nurses, care assistants, older people and family carers. The Senses Framework has also been highlighted by the Commission on improving dignity in care in their recent report ‘Delivering Dignity: Securing dignity in care for older people in hospitals and care’.