Developing professional knowledge about breast cancer in lesbian and bisexual women
Lead Research Organisation:
De Montfort University
Department Name: School of Applied Social Sciences
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Organisations
People |
ORCID iD |
| Julie Fish (Principal Investigator) |
Publications
Fish J
(2013)
Health Inequalities at the Heart of the Social Work Curriculum
in Social Work Education
Fish J
(2018)
Exploring lesbian, gay and bisexual patients' accounts of their experiences of cancer care in the UK.
in European journal of cancer care
Fish J
(2016)
Co-producing knowledge about lesbian and bisexual women with breast cancer: Messages for nursing professionals from a knowledge exchange project
in Journal of Research in Nursing
Fish, J
(2016)
Promoting cultural competency in the nursing
in Journal of Research in Nursing
Johnson, M.
(2015)
Cancer Care- a biopsychosocial approach
Julie Fish (Author)
(2011)
Inter-professional working to reduce cancer inequalities in lesbian and bisexual women with breast cancer
Julie Fish (Author)
(2012)
Taking action on LGBT health and social care inequalities
Julie Fish (Author)
(2011)
Developing cultural competence in breast cancer services with LB women
| Description | This is a knowledge exchange project which translate the findings of a previous study into policy and practice. Key learning points from the seminar evaluation include: Understanding of distinctive needs of LGBT cancer service users • Awareness of isolation for LGBT • That LGBT patients have the same needs as all Cancer patients and asking sensitive questions will enhance care • Equality and inclusion for partners when terminally ill. Being aware of family and cultures) and overlapping partners at time of death • The need for services to be more aware of LGBT issues when delivering care • Listen to what partners/ carers want and need • Examples given by service users of good and poor practice - makes it easy to translate the experiences for the unaware in terms of the impact. Attitudes and assumptions of cancer professionals • Getting it wrong is OK as long as we acknowledge our limitations and accept responsibility for mistakes and apologise • Be mindful of how you address people • Do not make assumptions • Stating neutrality at start of consultation and not making assumptions - giving permission • Do not assume, everyone is different and don't assume they want to come out! • Continue to be non judgemental and inclusive as a clinician • Any queries try and ask rather than avoid • Learning about various methods/ ways of improving your ability when dealing with LGBT people Access to information and support • Great awareness of support voluntary services • Look for collaboration with local LGBT groups to provide support for this group • Need for more information about needs and experiences of LGBT people • There are resources though limited available through Macmillan • Planning LGBT specific support groups • Learning about so many services being provided by Macmillan and other orgs. • Publications and inclusive information • Keep trying to identify funding to set up an LGBT cancer support network! • There's lots of support and resource out there to help us to take this forward • Dissemination widely our sexual orientation monitoring info to the delegate list Developing the wider team • Feedback to immediate team evidence/ ideas/ suggestions • Identify as a team priorities for action • Implement and evaluate • Needing to get buy in from others • Thank you it has been a very informative thought provoking day - now need to translate thoughts into action. • Educating my team on the importance of this issue as clearly the LGBT voice has not fully penetrated the mainstream • Offer LGBT training to breast care staff • The need to think about action plans for taking this forward • Empower staff to feel more confident and to ensure services and materials are inclusive and tailored _ |
| Exploitation Route | Breast Cancer Care used the policy briefing in cancer inequalities campaigns work and it was widely disseminated by them to Breast Care Specialist nurses in England and Wales, the NHS, and cancer charities. Staff at BCC developed web-pages about the project on their website. Other outcomes for BCC include: • Disseminated the briefing widely and used in policy/ campaigns work around inequalities in breast cancer; • Equality and Diversity Strategy: User audits of BCC services, more inclusive imagery and language, working with other organisations, case studies, develop training on understanding the impact of discrimination on health and confidence to access services and increase the diversity of Our Voices; • BCC collect sexual orientation data for volunteers and plan to do so for everyone that uses BCC's services; • Identify patterns of service usage and examine whether differences can be attributed to equalities issues; • Using recommendations in BCC's policy work. A key learning event was delivered in February 2012 in collaboration with Macmillan for 40 cancer and social care professionals to enable staff to feel more confident in delivering care for lesbian, gay, bisexual and trans (LGBT) people with cancer. Supporting LGBT people with cancer is a resource which was subsequently developed with the involvement of service users and professionals. Macmillan has been key to disseminating the practice guidance to 4,000 Macmillan cancer professionals; it is available through their Learn Zone site; as an information resource for events; and at Macmillan's national professionals' conference event in November 2012. Dhami, K (2011) Lesbian and bisexual women and breast cancer: policy briefing. London: Breast Cancer Care. Supporting LGBT People with Cancer: Practice guidance (2012) The resource has been included on Macmillan's learning zone http://learnzone.macmillan.org.uk/course/view.php?id=144 |
| Sectors | Healthcare,Government, Democracy and Justice |
| URL | http://www.breastcancercare.org.uk/campaigning-volunteering/policy/breast-cancer-inequalities/lesbian-bisexual-women-breast-cancer |
| Description | This knowledge exchange project has impact across and within disciplines by advancing theoretical understanding and methodological approaches, specifically: Lesbian, Gay, Bisexual and Trans (LGBT) health inequalities and human rights: The study contributes to re-conceptualisations of LGBT health from notions of pathology to that of an underserved population. They are timely in light of the recognition of the human rights of LGBT people in 2012 when the United Nations first called on all states to prohibit discrimination and implement protections, including access to health care. The project advances scientific understandings about LGBT people's right to health and of sexual orientation and gender identity as social determinants of health. Public and patient involvement approaches: This project examines the meanings of personalised care for LGBT people with cancer. It demonstrates how professionals' knowledge, skills and values can enhance the quality of life and promote healthy ageing in LGBT communities. Epistemologies of user involvement are under-theorised in LGBT research; the project develops understanding of PPI as a methodological approach recognising that outcomes will better reflect the concerns of those affected by cancer if they have been engaged in the project's design and implementation. Enhancing teaching and learning: promoting social work's role in tackling health inequalities: As a discipline, social work plays a key role in reducing health inequalities; however, it is under-represented in the literature. This project has deepened my understanding of health inequalities and of social work's contribution which I have used to develop inter-disciplinary teaching and learning for students at undergraduate and doctoral levels. Findings and Outputs LGBT health inequalities: Presentations to academic conferences: European Social Work Conference (Oxford, March 2011); seminar to academics (Bradford, Oct 2011); Joint World Conference of Social Work and Social Development, (Stockholm, July 2012); Co-Chair, LGBT health symposium, Social Work in Health and Mental Health Conference (Los Angeles, June 2013). Book contract with The Policy Press: Social work and lesbian, gay, bisexual and trans health inequalities: International perspectives (25 contributors from 10 countries worldwide). Book chapter to be published in Sage. One paper currently under review in a health related journal. Public and patient involvement approaches: Launch of policy briefing at Breast Cancer Care, London (March 2011); Public and Patient Involvement (PPI) Good Practice days University of Leicester May 2011 and University of Northampton, June 2011. Seminar to Macmillan cancer professionals (Feb 2012). Enhancing teaching and learning: promoting social work's role in tackling health inequalities: Presentations to academic conferences: Joint World Conference of Social Work and Social Development, (2nd paper) (Stockholm, July 2012); Social Work in Health and Mental Health Conference (2nd paper) (Los Angeles, June 2013); One journal article in Social Work Education (Jan 2013); commissioned to write curriculum guide for The College of Social Work. How these impacts were achieved The project's scientific findings have been disseminated at a number of national and international conferences; a journal article has been published and a second article is under submission. Presentation at the World Social Work Conference in Stockholm enabled me to meet with the publisher who subsequently agreed an edited book contract on LGBT health inequalities. The presentation led directly to networking opportunities where I met 10 out of the 24 contributors to the book and enabled me to speak to the President of an international social work organisation who agreed to write the preface. Presenting the findings at these prestigious conferences illustrates the interest in and impact of the project. Presentations were made to two good practice days on the study's methodology of public and patient involvement (PPI); such approaches are under-theorised in LGBT research. The principle of making change happen was the focus of a conference for health professionals in the NHS where the DKP project was the plenary presentation. The project contributed to the goal of making health services equitable and to developing professionals' knowledge about making provision accessible. An indirect outcome of the project was a plenary presentation by Sir Michael Marmot to the Stockholm conference. This raised the profile of the parallel sessions on health inequalities and of my joint paper on social work's contribution. Who these findings impact The project has led to new international collaborations: at the Los Angeles conference a symposium consisting of seven academics will be held which I will co-chair on LGBT health inequalities. The book will bring together 24 LGBT researchers from 8 countries worldwide including Canada, the US, India and Sweden. Academics and researchers such as in cancer, medicine and public health, social work, social policy, sociology of health, psychology and nursing are interested in the ways in which health more widely, and cancer in particular, is mediated by sexual orientation and gender identity. Academics and researchers in health and social work will benefit from of PPI as a methodological innovation. Academics in the Social Work and Health inequalities gave very positive feedback about the curriculum materials. Summary of economic impacts This knowledge exchange project has impact across and within disciplines by advancing theoretical understanding and methodological approaches, specifically: Lesbian, Gay, Bisexual and Trans (LGBT) health inequalities and human rights: The study contributes to re-conceptualisations of LGBT health from notions of pathology to that of an underserved population. They are timely in light of the recognition of the human rights of LGBT people in 2012 when the United Nations first called on all states to prohibit discrimination and implement protections, including access to health care. The project advances scientific understandings about LGBT people's right to health and of sexual orientation and gender identity as social determinants of health. Public and patient involvement approaches: This project examines the meanings of personalised care for LGBT people with cancer. It demonstrates how professionals' knowledge, skills and values can enhance the quality of life and promote healthy ageing in LGBT communities. Epistemologies of user involvement are under-theorised in LGBT research; the project develops understanding of PPI as a methodological approach recognising that outcomes will better reflect the concerns of those affected by cancer if they have been engaged in the project's design and implementation. Enhancing teaching and learning: promoting social work's role in tackling health inequalities: As a discipline, social work plays a key role in reducing health inequalities; however, it is under-represented in the literature. This project has deepened my understanding of health inequalities and of social work's contribution which I have used to develop inter-disciplinary teaching and learning for students at undergraduate and doctoral levels. Findings and Outputs LGBT health inequalities: Presentations to academic conferences: European Social Work Conference (Oxford, March 2011); seminar to academics (Bradford, Oct 2011); Joint World Conference of Social Work and Social Development, (Stockholm, July 2012); Co-Chair, LGBT health symposium, Social Work in Health and Mental Health Conference (Los Angeles, June 2013). Fish, J. & Karban, K. (2015) Lesbian, gay, bisexual and trans health inequalities: International perspectives in social work. Bristol: The Policy Press (25 contributors from 8 countries worldwide). Johnson, M. and Fish, J. (2015) Diversity and equality in cancer care (113-127). In D. Wyatt and N. Hulbert-Williams (eds.) Cancer Care- a biopsychosocial approach. London: Sage. Two papers currently under review in a health related journal. Public and patient involvement approaches: Launch of policy briefing at Breast Cancer Care, London (March 2011); Public and Patient Involvement (PPI) Good Practice days University of Leicester May 2011 and University of Northampton, June 2011. Seminar to Macmillan cancer professionals (Feb 2012). Enhancing teaching and learning: promoting social work's role in tackling health inequalities: Presentations to academic conferences: Joint World Conference of Social Work and Social Development, (2nd paper) (Stockholm, July 2012); Social Work in Health and Mental Health Conference (2nd paper) (Los Angeles, June 2013); One journal article in Social Work Education (Jan 2013); commissioned to write curriculum guide for The College of Social Work. How these impacts were achieved The project's scientific findings have been disseminated at a number of national and international conferences; a journal article has been published and a second article is under submission. Presentation at the World Social Work Conference in Stockholm enabled me to meet with the publisher who subsequently agreed an edited book contract on LGBT health inequalities. The presentation led directly to networking opportunities where I met 10 out of the 24 contributors to the book and enabled me to speak to the President of an international social work organisation who agreed to write the preface. Presenting the findings at these prestigious conferences illustrates the interest in and impact of the project. Presentations were made to two good practice days on the study's methodology of public and patient involvement (PPI); such approaches are under-theorised in LGBT research. The principle of making change happen was the focus of a conference for health professionals in the NHS where the DKP project was the plenary presentation. The project contributed to the goal of making health services equitable and to developing professionals' knowledge about making provision accessible. An indirect outcome of the project was a plenary presentation by Sir Michael Marmot to the Stockholm conference. This raised the profile of the parallel sessions on health inequalities and of my joint paper on social work's contribution. Who these findings impact The project has led to new international collaborations: at the Los Angeles conference a symposium consisting of seven academics will be held which I will co-chair on LGBT health inequalities. The book will bring together 24 LGBT researchers from 10 countries worldwide including Canada, the US, Australia, India, South Africa and Sweden. Academics and researchers such as in cancer, medicine and public health, social work, social policy, sociology of health, psychology and nursing are interested in the ways in which health more widely, and cancer in particular, is mediated by sexual orientation and gender identity. Academics and researchers in health and social work will benefit from of PPI as a methodological innovation. Academics in the Social Work and Health inequalities gave very positive feedback about the curriculum materials. The project led to a subsequent study - Improving the cancer journey for LGB people funded by the cancer charity, Hope against Cancer. Potential future impacts The book with Policy Press will potentially contribute to scientific advances in understanding LGBT health inequalities as embodied health inequalities and to the development of a small network of researchers in this field. I am planning to seek joint funding to produce global curricula materials on social work's role in tackling health inequalities. Further academic publications arising from this project are planned. Unexpected impacts The invitation to Professor Sir Michael Marmot to address 2,000 delegates at the Joint world social work conference in Stockholm in July 2012 raised awareness of social work's contribution to reducing health inequalities and gave impetus to the Social Work and Health Inequalities Network for future work. Limited scientific impacts See above Limited economic impacts The current austerity measures are having an impact on some of the subsequent collaborative work to directly benefit service users which would have been an outcome of this project. |
| First Year Of Impact | 2011 |
| Sector | Healthcare |
| Impact Types | Societal,Policy & public services |
| Description | Public Health Outcomes Framework |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| Impact | Duncan Selbie, Chief Executive of Public Health England said: Given as a health system we are serious about our mission to address inequalities, one group that must demand our attention is the lesbian, gay, bisexual and trans community. The LGB&T Companion to the Public Health Outcomes Framework sets the evidence base related to each public health indicator, and makes clear recommendations for action at local, regional and national levels. I have tasked the Health and Wellbeing Directorate of Public Health England, with its responsibility to lead on health inequalities, to seek ways to support the implementation of these recommendations. http://www.phoutcomes.info/public-health-outcomes-framework#gid/1000042/par/E12000004/ati/102/page/7 |
| URL | http://www.lgf.org.uk/policy-research/the-lgbt-public-health-outcomes-framework-companion-document/ |
| Description | Improving the Cancer Journey for LGBT people |
| Amount | £16,400 (GBP) |
| Organisation | Hope Against Cancer (Rutland and Leicestershire) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 05/2014 |
| End | 04/2015 |
| Description | Macmillan Inclusion |
| Amount | £20,000 (GBP) |
| Organisation | Macmillan Cancer Support |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2017 |
| End | 12/2017 |
| Description | Promoting good outcomes in Lesbian, Gay, Bisexual and Trans (LGBT) cancer care: a qualitative study of patients' experiences and professionals' interactions in clinical oncology. |
| Organisation | Nottingham City Hospital |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Using in-depth interviews with 20 LGBT patients, the study will identify how sexual orientation and gender identity are acknowledged in low-key ways and factors associated with satisfaction with care. |
| Collaborator Contribution | Recruiting participants |
| Impact | none so far |
| Start Year | 2017 |
| Description | Promoting good outcomes in Lesbian, Gay, Bisexual and Trans (LGBT) cancer care: a qualitative study of patients' experiences and professionals' interactions in clinical oncology. |
| Organisation | Palgrave Macmillan |
| Country | United Kingdom |
| Sector | Private |
| PI Contribution | Using in-depth interviews with 20 LGBT patients, the study will identify how sexual orientation and gender identity are acknowledged in low-key ways and factors associated with satisfaction with care. |
| Collaborator Contribution | Recruiting participants |
| Impact | none so far |
| Start Year | 2017 |
| Description | Promoting good outcomes in Lesbian, Gay, Bisexual and Trans (LGBT) cancer care: a qualitative study of patients' experiences and professionals' interactions in clinical oncology. |
| Organisation | The Christie NHS Foundation Trust |
| Department | Christie Medical Physics and Engineering |
| Country | United Kingdom |
| Sector | Hospitals |
| PI Contribution | Using in-depth interviews with 20 LGBT patients, the study will identify how sexual orientation and gender identity are acknowledged in low-key ways and factors associated with satisfaction with care. |
| Collaborator Contribution | Recruiting participants |
| Impact | none so far |
| Start Year | 2017 |
| Description | Promoting good outcomes in Lesbian, Gay, Bisexual and Trans (LGBT) cancer care: a qualitative study of patients' experiences and professionals' interactions in clinical oncology. |
| Organisation | The Clatterbridge Cancer Centre NHS Foundation Trust |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Using in-depth interviews with 20 LGBT patients, the study will identify how sexual orientation and gender identity are acknowledged in low-key ways and factors associated with satisfaction with care. |
| Collaborator Contribution | Recruiting participants |
| Impact | none so far |
| Start Year | 2017 |
| Description | Social work's contribution to tackling health inequalities |
| Organisation | University College London |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | My work on LGBT cancer inequalities informed two meetings between the Social Work and Health Inequalities Network and the International Federation of Social Workers (IFSW) with the Marmot team and led to a plenary of 3,000 delegates addressed by Michael Marmot at the World social work conference in Stockholm on health inequalities and social work July 9 2012. |
| Collaborator Contribution | We made a contribution to the Global Agenda for Social work which included a commitment promoting economic and social equality. We contributed case studies to the European report on health inequialities led by Sir Michael marmot We contributed case studies to the Global Observatory set up by IFSW |
| Impact | Contibuted to the Global Agenda for Social work Contributed to a number of Institute of health Equity resports and the role of social work |
| Start Year | 2011 |
| Description | Addressing LGBT health inequalities |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | Fish, J. Addressing LGBT health inequalities. Research seminar. University of Bradford. Nov 2011. Collaboartions developed with other academics in related fields |
| Year(s) Of Engagement Activity | 2011 |
| Description | Cancer inequality : what have sexual minority women's experiences of breast cancer got to do with it? |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Workshop presentation at Health and Wellbeing day at De Montfort University Itwas an opportunity to showcase the research through a poster presentation and also an oral presentation to members of regional health networks e.g. Primary care trust. There were representatives from Birmingham which led to sharing of information |
| Year(s) Of Engagement Activity | 2011 |
| Description | Coming out about breast cancer : involving users and stakeholders |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presented at University of Leicester Contributed to developing thinking about involving service users in research |
| Year(s) Of Engagement Activity | 2011 |
| Description | Coming out about breast cancer : involving users and stakeholders |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Paper at PPI Good Practice days I contributed to two good practice days in public and patient involvement to an audience of professionals, academics and service users |
| Year(s) Of Engagement Activity | 2011 |
| Description | Lesbian and bisexual women and breast cancer |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The policy briefing was presented by Jane Hatfield, Head of Policy and Research at Breast Cancer Care to the National Cancer Equalities Initiative at a meeting at the Department of Health chaired by Professor Sir Mike Richards. This is an implementation group of the Cancer Reform Strategy. The NCEI is leading the drive in England to address cancer inequalities following the Cancer Reform Strategy. The NCEI is leading the drive in England to address cancer inequalities following the Cancer Reform Strategy. |
| Year(s) Of Engagement Activity | 2011 |
| Description | Making it happen : influencing policy and practice in LGBT health and social care |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Plenary presentation at event titled 'Making it happen: achieving Lesbian, Gay, Bisexual and Transgender (LGBT) equality in the NHS South West' This event took place in the NHS Strategic health Authority in the South West and involved professionals working in the health service, academics and colleagues working in equality and diversity |
| Year(s) Of Engagement Activity | 2011 |
| Description | Social work and health inequalities: |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | As we approach World Social Day 2013, equality is on the global agenda. In today's podcast, Julie Fish talks to us about social work's role in addressing health inequalities and the social determinants of health, and the importance of raising the profession's profile in this area of practice. Julie Fish is joint convener of the Social Work and Health Inequalities Network, an association of over 300 social work academics and practitioners from over 25 countries worldwide, who seek to combat the causes and consequences of unjust and damaging socially created health inequalities. She has conducted research in Lesbian, Gay, Bisexual and Trans health and social care inequalities for 18 years. She has recently completed an ESRC Knowledge exchange project RES-192-22-0111 Developing professional knowledge about breast cancer undertaken in conjunction with Macmillan Cancer Support, Breast Cancer Care and LGBT social care NGOs. She has carried out work for the National Cancer Action team and the NHS Cervical Screening Programme. Prescription for Change, conducted with Stonewall, is the largest health and social care survey of lesbian and bisexual women in Europe. In 2012, her book Social work and lesbian, gay, bisexual and trans people: Making a difference was published by The Policy Press. Her research interests include: Health and Human Rights, The Social Determinants of Health, Social Perspectives on Cancer and Public and Patient Involvement. The Podcasts are available for download and are accessed by professionals, educators and academics |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.podsocs.com/podcast/social-work-and-health-inequalities/ |