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UNIVERSITY OF BOLTON SCHOOL OF HEALTH AND SOCIAL CARE MODULE: HLT 7059 Research Dissertation LEVEL: HE7 ASSIGNMENT: 15,000 research dissertation WORD COUNT: 16,500 TITLE: A study to explore Tranâ€&#x;s women experiences of prostate cancer information, support and services Project submitted as partial fulfilment of the MSc. Professional Development - Public Health Practice Pathway STUDENT ID: 0904023 MODULE LEAD: Sue First MODULE SUPERVISOR: Martina Kirlew SUBMISSION DATE: 10th June 2016
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Contents Page
Contents Page ........................................................................................................... 2 List of tables / figures ................................................................................................. 5 Acknowledgements .................................................................................................... 6 Glossary ..................................................................................................................... 7 Abstract .................................................................................................................... 11 Chapter 1 ................................................................................................................. 14 Introduction ........................................................................................................... 14 Aims and Objectives ............................................................................................. 22 Chapter 2 ................................................................................................................. 24 Literature Review .................................................................................................. 24 Search Strategy ................................................................................................. 24 Review of the literature ...................................................................................... 26 The need for new research ................................................................................ 26 Education and Training ...................................................................................... 33 The challenges of ensuring the appropriate provision of prostate cancer awareness, treatment and aftercare for Trans Women ...................................... 40 Awareness and Early Detection ......................................................................... 40 Diagnosis and Treatment ................................................................................... 43 Living with and beyond (LWBC)......................................................................... 45
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Chapter 3 ................................................................................................................. 48 Methodology ......................................................................................................... 48 Philosophical Approach ..................................................................................... 48 Triangulation ...................................................................................................... 51 Online Survey .................................................................................................... 54 Interviews .......................................................................................................... 56 Data Analysis ..................................................................................................... 61 Sampling and Sampling Strategy....................................................................... 63 Ethical Considerations ....................................................................................... 64 Chapter 4 .............................................................................................................. 66 Data Results and Analysis .................................................................................... 66 Online Survey .................................................................................................... 71 Interview Findings .............................................................................................. 75 Chapter 5 ................................................................................................................. 82 Discussion............................................................................................................. 82 The case for new research and re-evaluation of the current prostate cancer picture for Trans women .................................................................................... 83 Gender Identity monitoring as common practice in the UK health service ......... 86 Education for our health care work force and Trans women .............................. 88 Chapter 6 ................................................................................................................. 92 Conclusion and Recommendations ...................................................................... 92 Bibliography ............................................................................................................. 97 3
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Appendices ............................................................................................................ 116 Appendix 1 – Literature Search Strategy ............................................................ 117 Appendix 2 – Selected Papers ............................................................................ 120 Appendix 3 - RE1 Ethics Checklist (RE1) ........................................................... 124 Appendix 4 – Participant Information Sheet ........................................................ 133 Appendix 5 – Informed Consent Form ................................................................ 138 Appendix 6 – Recruitment Flyer .......................................................................... 140 Appendix 7 – Interview Guide ............................................................................. 142 Appendix 8 – Online Survey................................................................................ 145 Appendix 9 – Table showing demographic quantitative data analysis of complete sample ................................................................................................................ 154 Appendix 10 – Interview data .............................................................................. 156
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List of tables / figures Table 2.1 Prostate cancer cases encountered in male-to-female Trans subjects receiving oestrogen treatment (Gooren and Morgentaler 2014) ............................... 32 Figure 2.2 Normal Urinary Bladder and Prostate .................................................... 35 Figure 2.3 Approximate Location of Neo-Vagina in Normal Male…………………….35 Figure 2.4 Neo-Vagina after prostatectomy……………………………………………..36 Figure 4.1 Chart to show quantitative analysis of data collection methods .............. 67 Figure 4.2 Chart to show stage in transition of whole sample .................................. 68 Figure 4.3 Chart to show age range of whole sample .............................................. 69 Figure 4.4 Chart to show sexual orientation of whole sample .................................. 70 Table 4.5 Responses to online survey question 5 ................................................... 72 Table 4.6 Online survey responses to question 13 .................................................. 73 Figure 4.7 Interviewee responses to Question 9 ...................................................... 75 Figure 4.8 Chart to show interviewee responses to question 6 ................................ 76
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Acknowledgements I would first like to thank the ladies, who took part in this study; who embraced it in anticipation that their stories would provide insight to drive improvements in current prostate cancer services for other Tran‟s women. My partner Dom for believing in me, encouraging me to continue, looking after our children whilst I studied, and making me numerous cups of tea and hot vimto. I‟m sure the phrase “it‟s getting there” will haunt him forever more. Thanks to Martina Kirlew, my supervising tutor at the University of Bolton who has listened, advised and expertly guided me throughout the entire process. To the LGBT Foundation and LGBT Cancer Support Alliance for all their support and positive encouragement.
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Glossary Cisgender
People whose gender identity and gender expression align with their assigned sex at birth (i.e. the sex listed on the birth certificate) (Levitt 2015)
LGBT
Lesbian, Gay, Bisexual and Transgender
Gender Identity
Gender identity is understood to refer to each personâ€&#x;s deeply felt internal and individual experience of gender, which may or may not correspond with the sex assigned at birth, including personal sense of the body (which may involve, if freely chosen, modification of bodily appearance or function by medical, surgical or other means) and other expressions of gender, including dress, speech and mannerisms (Bishop and LGBT Foundation 2013). Although there is the presumption that this sense of identity with evolve along binary lines and be consistent with the sex appearance, it does not do so in all people (GIRES, 2009)
Trans
The term used to capture experiences of being gender variant in behaviour and preference, as well as social and legal gender change or transformation (Kessler and McKenna, 2000)
Transgender
Transgender has had different meanings over time and within different societies (Fish, 2007). It is used as an inclusive term describing all those whose gender expression typically falls outside the typical gender norms (GIRES, 2009) Similarly, it is an alternative umbrella term used as a policy term to describe those people who live part or all of their lives in their preferred
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gender role – they may use hormonal treatments to change their body form, but will generally not seek to undergo gender reassignment surgeries (Witten and Whittle,2004) Transsexual
Describes those people who want to live full time in the opposite gender. Some seek gender reassignment treatments, including genital reconstructive surgery where possible (Witten and Whittle, 2004).
Although, The gender Recognition Act
(2004) allows an individual to obtain the legal recognition in their acquired gender In the U.K with or without gender reassignment surgery. Transsexualism
The condition in which a person with an apparently normal somatic sexual differentiation is convinced that he or she is actually a member of the other sex.
This conviction is
accompanied by the desire to live as the other gender: somatically,
psychosocially
and
legally
(Gooren
and
Morgentaler 2014) Intersex
Refers to a person whose reproductive organs and/or chromosomes do not fit usual patterns (e.g. being born with ambiguous
genitalia
pattern/Klinefelter
or
having
syndrome)
an
(Intersex
XXY
chromosome
Society
of
North
America 2008) Gender Dysphoria
A recognised medical condition in which the distress caused by a mismatch between biological sex (birth assigned sex) and the gender a person feels them self to be, causes clinically significant distress or impairment in social, occupational, or
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0904023 other important
areas of
functioning (Bishop
& LGBT
Foundation 2013) Transition
Altering oneâ€&#x;s gender presentation is not a one-step procedure: it is a complex process that occurs over a long period of time. Transition includes some or all of the following cultural, legal and medical adjustments, telling oneâ€&#x;s family, friends and/or coworkers, changing oneâ€&#x;s name and/or sex on legal documents; hormone therapy and possibly (though not always) some form of surgical gender affirmation (Bishop and LGBT Foundation 2013).
Gender
Under the Equality Act 2010, a person has the protected
Reassignment
characteristic of gender reassignment if they are proposing to undergo, are undergoing or have undergone a process (Bishop and LGBT foundation 2013). Surgery is chosen to bring the sex characteristics of the body more in line with the gender identity (GIRES 2009).
Hormone
Aims to achieve complete androgen depletion and at the same
treatment/therapy
time introduce oestrogen.
(male to female)
usually 18-36 months, surgical sex reassignment may take place.
In the course of the treatment,
Oestrogen therapy continues irrespectively as it
contributes to the female phenotype and reduces the risk of long-term sex steroid deprivation such as osteoporosis (Gooren 2011) PSA
Prostate-specific antigen (PSA) is a protein produced by prostate cancer cells. A blood test, the PSA test, measures the
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level of PSA and may help to detect early prostate cancer. (Macmillan cancer Support 2015) Pan Sexual
Pansexual is a term that has been growing in recent years as a way for people to better identify their sexual identity. The word Pansexual is derived from the Greek prefix pan, meaning "all". The
term
is
reflective
of
those
who
feel
they
are
sexually/emotionally/spiritually capable of falling in love with all genders. Therefore, pansexuals have the capability of attraction to others regardless of their gender identity or biological sex. A pansexual could be open to someone who is male, female, transgender, Homophobia)
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intersex,
or
agendered/genderqueer.
(Stop
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Abstract It is estimated that 1% of the UK population are expected to have experienced some degree of gender non-conformity, and most remain invisible (GIRES, 2013). Tran‟s people have a diverse set of needs and experience varying levels of discrimination and barriers to accessing health care (DoH, 2007).
General health promotion
awareness on modifiable lifestyle factors such as smoking, alcohol and obesity are likely to be similar for a Tran‟s person as for most adult patients. However, a Tran‟s woman‟s body is complex, and one that UK health professionals are criticised for having little awareness and understanding of (Bishop and LGBT Foundation, 2013). Although the transition process varies on an individual basis; from changes in clothing, adopting a new name, changing sex designation on identity documents to using hormone therapy and/or undergoing medical surgery (APA, 2015), all Tran‟s women without exception, will have a prostate. The Trans body therefore creates complexities for cancer services and many Tran‟s women now find themselves in an age
group
where
prostate
cancer is a
concern
(Weyers
et
al 2009).
Correspondingly, our health professionals continue to be disparaged for failing to meet these specific needs of Tran‟s patients (Bishop and LGBT Foundation, 2013).
The prostate cancer needs of Tran‟s women are evidently one of the aspects of healthcare that require further consideration (Sobralske, 2005). Whilst it is important to ensure Trans people receive universal health promotion advice, treatment and aftercare support; finding a health care provider that is not only knowledgeable about the health needs of trans people as a whole, but the prostate cancer needs of trans women remains uncommon (Levitt, 2015).
Historically, there have been limited
efforts to identify the cancer health needs of Tran‟s people across the entire cancer
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pathway (GIRES, 2009, Donaldson, 2009, Levitt, 2015). This poses a risk of Tran‟s people not receiving appropriate cancer health care support, advice and information (Fish, 2007). The gap in the literature, evidence and knowledge coupled with this lack of acknowledgement of Tran‟s people‟s needs within cancer care services prompted this study.
This study used mixed methods (face-to-face and telephone interviews with an online survey) to gather a holistic perspective of Tran‟s women‟s experiences accessing prostate cancer information, advice, treatment and support. 20 Tran‟s women participated in the study between December 2015 and February 2016. The study gathered basic demographic data and insight into the preferred use of terminology relating to and defining Tran‟s women. Two participants were living with and beyond prostate cancer and had accessed services across the entire cancer pathway pre and post transition. The qualitative data gathered through interviews generated further invaluable insight into the suitability of prostate cancer services for Tran‟s people in the UK today.
The findings of the study demonstrate the positive achievement of partnership working with both the Tran‟s community and Trans‟ support services, such as; the LGBT Foundation and LGBT Cancer Support Alliance in Greater Manchester and Transforum and Prostate Cancer UK. The level of engagement from Tran‟s women in this study has allowed the researcher to build a picture around the appropriateness of current prostate cancer advice, support, treatment and care services for Tran‟s women.
This study has already been the catalyst for
conversations; providing a starting point for future research and good practice guidance for novice researchers embarking on studies with Trans people. It has 12
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been a conduit in the development of prostate cancer resources for Tran‟s women and informed some of the priorities set out in the LGBT Cancer Support Alliance work stream in identifying the cancer needs of Tran‟s people.
In the future, this mixed method explorative study will hopefully be of benefit to Tran‟s women and cancer services in their entirety. Results and recommendations from the research study will be shared with Higher Education Institutes to contribute towards prostate cancer curriculum development and augment previous research into the cancer needs of Tran‟s women. The findings will also be shared with key cancer services, the LGBT Cancer Support Alliance, LGBT Foundation and at the 2016 Sparkle Event for Tran‟s people with the aspiration of starting more conversations and informing 2016/2017 operational and strategic priorities to focus on developing the prostate cancer needs agenda for Trans women.
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Chapter 1
Introduction
This dissertation is a study that explores Tran‟s women‟s experiences of prostate cancer services.
It examines whether the Tran‟s women community do in fact
experience inequality when accessing prostate cancer services, and explores the impact that these experiences may have had on the individual‟s quality of life and health and well-being (Sanders, 2003).
„Trans‟ can be an umbrella term used to capture experiences of gender variant behaviour and preference, and the social and legal gender change or transformation (Kessler and McKenna, 2000), and this is the definition of Trans that the researcher will use throughout this study. Developed in a political context, the terms Trans is used to define a diverse community of people ranging from part-time cross dressers to transsexual people who undergo gender reassignment surgeries (Fish, 2007). Under the umbrella of „Trans‟ exists various other terms, such as transgender, transsexual and intersex. There appears to be no universally agreed acronym to represent this community (Age UK, 2011). Historically, culturally and individually, terms have changed and remain changeable (Fish, 2007, Arundel, 2013). Labels like transvestite, transsexual and transgender are 20th Century inventions (Arundel, 2013). Alternative terms are often used to describe the population as whole or specific groups within the community (Gwendolyn et al, 2015). For the purpose of this study, the term Trans women is used to define individuals who live as a woman full time; who are on, have a desire to, or have completed the transition process and
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want to have, or have legal recognition as a woman in the UK. The reason the researcher is defining the chosen terminology is because not all Trans women choose to use hormones (e.g. oestrogen) to help create a balance between gender identity and appearance. Not every Tran‟s women will choose to undergo gender reassignment surgery, but all may still want legal recognition as a woman and to live as a woman all or some of the time (Gooren, 2015). Without exception, every Tran‟s woman will still have a prostate. Prostatectomy is major surgery with significant long term health risks, such as urinary incontinence and sexual dysfunction (Gooren et al, 2013). The Trans body creates complexities for cancer services and many Tran‟s women now find themselves in an age group where prostate cancer is a concern (Weyers et al, 2009).
Only within the last century have we seen a real differentiation made between sexual orientation and gender identity (Arundel, 2013).
Literature and research still
includes, and continues to include Trans with studies with lesbian, gay and bisexual (LGBT) people (Fish, 2007). These studies have tended to achieve small samples and consequently provide limited insight into the needs of the Trans population and proove difficult to generalise to the wider Tran‟s population (Fish, 2007, Gwendolyn et al, 2015). LGB refers to a person‟s sexuality. Sexuality includes being content with the gender someone was born with (Sobralske, 2005). Tran‟s people can be heterosexual, lesbian, gay, bisexual or intersex. This is one of the reasons why research that includes Trans with LGB has achieved smaller sample sizes. Although there are some similarities in the nature of discrimination faced by LGB and T people when accessing health services (Scottish Needs Assessment Programme, 2001, Margolies, 2014); it is often reported that Tran‟s people often face the most severe
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health disparities and forms of discrimination (Macmillan, 2014, Stonewall, 2015). As with other marginalised groups, Tran‟s people require sensitive and informed healthcare, particularly in relation to Tran‟s women accessing prostate cancer information, support and services. For these reasons, the researcher will be exploring the needs of Tran‟s women in isolation.
Although there remains a persistent assumption that there are only two genders (male and female) and that one‟s gender is assigned from birth and cannot be changed (Kessler and McKenna, 2000, Fish, 2007), political discourse into the Tran‟s community is evolving. The Gender Recognition Act (2004) provided some clarity and more importantly, transsexual people with the option to obtain the legal recognition in their acquired gender, irrespective of whether they have undergone gender reassignment surgery or not (UK Trans Information, 2004).
Under the
previous law, Tran‟s people were not able to obtain this legal recognition. They could obtain some official documents in their new name and gender, but not a birth certificate or marry in their acquired gender (Trans Info UK, 2004). Subsequent to the Gender Recognition Act (2004) was the Equality Act (2010) which included gender reassignment as one of the protected characteristics requiring equal treatment in access to employment, private and public services. This discourse is undoubtedly raising political awareness, but in turn highlighting where there remains a lack of awareness of Trans needs. This is particularly pertinent in health and social care services (DoH, 2007, Stonewall, 2015), and more specifically, cancer services (Macmillan 2014).
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Society has seen a long procession of media stories and articles about Tran‟s people recently. Laverne Cox, star of the Netflix comedy Orange is the New Black, and Caitlyn Jenner, the Olympic medal winner, once known as Bruce Jenner have been recent media interests. However, Transgender has a long history with personal, societal and political complexities in raising awareness (GIRES, 2009).
It is
important to acknowledge that although Tran‟s people may now be collectively increasing their visibility in society (Alergria, 2011), this has been progressive. The risk of discrimination, bullying and hate crime Tran‟s people can be exposed to can create feelings of vulnerability (GIRES, 2009). Historically many Tran‟s people did not want to be seen as Trans and wanted to be accepted as the gender they feel they should have been born. They would therefore go to great lengths to hide their Tran‟s identity (Arundel, 2013) and not feel able to share their voice. The first known male-to-female sex reassignment surgery was reported in Germany in 1930s. Christine Jorgensen, a former American GI was later „outed‟ by the media in the 1950s for undergoing reassignment surgery. She continued as a strong advocate for the rights of transgender people for many years (Whittle, 2012). More recent and in the UK is Grayson Perry; an artist, mainly known for his creative vases and crossdressing. He used his art as a medium for communicating his ideas about gender and society.
Collectively, but not exclusively these individuals have raised
awareness of the Trans community and the diversity against the social, cultural and political adversity and stigma (Margolies, 2014).
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However, the acknowledgement of Trans needs within our political and social world is not replicated within cancer care services (GIRES, 2009, Donaldson, 2009, Levitt, 2015). The new National Cancer Strategy for England 2015-2020 was published by the Independent Cancer Taskforce in 2015. Representing a cross section of the cancer and health community, this report highlights that “The number of people diagnosed and living with cancer each year will continue to grow rapidly”.
Our
national population is ageing, living longer and more advanced cancer treatments mean that cancer is fast becoming a long term condition. This report sets out a series of recommendations designed to drive earlier NHS strategies aimed at improving cancer care and outcomes that make no reference of supporting marginalised groups, such as Trans.
Integral to the new strategy is the notion that anyone who has had a diagnosis or concerns about cancer should ideally have access to a variety of healthcare professionals to provide the most appropriate care, support and advice. This will include GPs, nurses (district, community, specialist or palliative) and a variety of hospital staff from clinicians to reception and administrative staff. We know from recent strategies (NHS Cancer Outcomes, 2015, Independent Cancer Taskforce Report, 2015) that cancer care is variable and fragmented across the country. Some groups of people may not get the same level or quality of care, support and information as others.
Tran‟s people are one of these groups and can have
disproportionately poorer health outcomes as a result of discrimination and oppression from society (Margolies, 2014). Similarly, with growing acceptance of Tran‟s since legal recognition in 2004, increasing number of Tran‟s women will be finding themselves in an age group where prostate cancer is a health concern
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(Gooren et al, 2015). Our healthcare providers appear to be striving to provide equitable cancer services across the entire cancer pathway, but more needs to be done to be a catalyst for a review into existing prostate cancer care and support services for Tran‟s women and new research.
This study aims to provide
commissioners and cancer service providers with insight into the specific prostate cancer needs of Tran‟s women and some of the challenges in cancer care and survivorship for this group of people to raise awareness and implement change through a series of recommendations (Margolies, 2014).
This dissertation specifically explores the barriers and experiences Trans women (who live as a woman full time; who are on, have a desire to, or have completed the transition process and want to or have legal recognition as a woman) have had in pursuit of receiving prostate cancer advice and care in the UK. Without exception, every Tran‟s woman irrespective of whether an individual chooses to initiate hormone therapy or undergo gender reassignment surgery, will have a prostate (Sobralske, 2005).
In addition to this, Tran‟s women will have significant
physiological differences compared to a female body (Van Kesteren et al, 1996, Sobralske, 2005, Weyers et al, 2008, Gooren, 2015, Levitt, 2015). The question is how far our services and health care professionals understand these differences and complexities to ensure they provide the most accurate and appropriate advice, care and support?
At the time of this study, the researcher was in a unique position; having previously worked in the field of cancer for several years and then in a role with a leading cancer charity supporting primary care to develop initiatives to improve cancer outcomes, raise awareness and increase early diagnosis. The researcher was also 19
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a member of the LGBT Cancer Support Alliance, a cross-cutting group of health care professionals, patient/carer and representatives from third sector organisations. The aim of this group is to work collaboratively to support and improve services for LGBT individuals affected by cancer in Greater Manchester and Merseyside, and to lead on the development of patient information resources, campaigns and collate research in this area. In 2015, the group focussed on prostate cancer. The LGBT Foundation and LGBT Cancer Support Alliance partnered up with Prostate Cancer UK to host the first event of its kind in the U.K. „Out with Prostate Cancer: Focussing on Gay and Bi Men and Transwomen affected by prostate cancer.‟ The event showcased some of the many projects underway across the U.K which is beginning to be more inclusive of LGBT people‟s needs around cancers. However, the event highlighted the lack of evidence and awareness of the specific needs of the Trans women population in relation to prostate cancer.
In addition to the researcher‟s professional network, the LGBT Cancer Support Alliance and its members fully supported this research and remain committed to contributing to the wider dissemination of the findings and recommendations across their networks and all key cancer partners and charities. The recommendations are expected to provide a starting point for conversations, further research and the development of prostate cancer resources for Tran‟s women.
A literature review looked at existing policy and legislative papers and examined the extent to which previous literature, legislation and policy had looked at the cancer care of Tran‟s people.
A cross-sectional analysis of the literature from leading
public, private and voluntary cancer information and support organisations, created specifically for the Trans community provided some insight into the current provision 20
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A traditional literature review was completed to look specifically at
papers relating to Trans womenâ€&#x;s experiences of cancer services and, where available, prostate cancer services.
The literature was analysed and themes
identified. These themes combined with the data derived from the study informed a set of recommendations for policy change, education and training, further research and information resources.
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Aims and Objectives
Aim
The aim of the research was to explore the experiences of Tran‟s women of prostate cancer services. Evaluating the extent of how Tran‟s women awareness and needs were recognised across the prostate cancer awareness, treatment and survivorship pathway.
Findings from this study were expected to build a picture of current prostate cancer advice, support, treatment and care provision for Tran‟s women; providing a starting point for future research, the development of resources for Tran‟s women and informing the work necessary to ensure that health professionals are better equipped to meet the needs of their Tran‟s women patients.
Objectives
To undertake a literature review to identify themes relative to Tran‟s women and prostate cancer.
To analyse existing and available population data relating to Tran‟s women and cancer to provide numerical context, greater clarity and validity about this population.
To create an on-line questionnaire for Tran‟s women to collate general demographic information and perceived experiences of prostate cancer services to add further rigour and insight to augment currently available data.
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To develop a discussion guide to use in face-to-face or telephone interviews with a sample of Trans women that will; o Enable the exploration of an individual‟s experience of prostate cancer services across the entire diagnostic, treatment and aftercare pathway. o Explore what impact these experiences have on an individual‟s quality of life and health and well-being.
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Chapter 2
Literature Review
Search Strategy
A „traditional‟ literature search was undertaken using search engines and databases available at the University of Bolton. The software enabled a search of the most appropriate health and social care databases; ProQuest, including ProQuest Central. All Ebsco databases, including CINAHL. ScienceDirect, Scopus, Taylor and Francis online, Wiley Interscience, Credo, Oxford Reference Online, Royal College of Nursing Journals Sage Journals, Medline, PubMed, Embase, Google Scholar. The Key
search
terms
used
were;
Trans,
Transgender,
Transexual,
Gender
reassignment, Prostate cancer, Cancer care, Patient experience.
Papers were limited to English, western language only papers as the purpose of the research is to explore recent national attitudes and perceptions from 2000 to 2015. 22 published academic articles were selected for further analysis. Papers were further examined and included based on their relevance to the research question. Table 1 in Appendix 1 shows the search strategy used and Table 2 in Appendix 2 lists the selected papers with rationale for their inclusion. The initial literature search identified thousands of papers, most were looking at Trans with LG&B people and weren‟t specific to cancer and Trans women. Many papers focussed specifically on the sexual health needs of the Trans population and in particular Human Immunodeficiency Virus (HIV).
Additional subject terms were applied; cancer,
prostate cancer, transgender, transgender people and health. 24
This identified a
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number of papers relating to breast and cervical cancers in Trans men.
No further
limitations were applied and 12 papers were selected. In addition to the traditional literature search, the information and literature provided by key cancer services and organisations offering support to Tran‟s people was reviewed and 13 relevant publications, information and resources were included for review. This highlights the limited studies and literature available on this topic.
The search presented several challenges; 2 papers identified in the initial search were too recent to be available on the University‟s database system. The researcher applied via the inter-loans library system to request copies. Searches that included the key term „trans‟ listed papers relating to „trans fats‟, otherwise known as artificial trans fat and specific research studies carried out to assess the causal effects on some cancers. The vast majority of academic papers discussed Tran‟s as part of the LGBT community which may be relevant for some health inequalities and barriers to accessing healthcare services, but were not specific enough to this study.
The following themes were identified throughout the selected papers, and will be presented as such in the following section;
The need for new research
The role of Education and Training into Transgender awareness for health and social care staff
The challenges ensuring the appropriate provision of Prostate cancer awareness, treatment and aftercare for Trans Women
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Prostate Cancer information resources
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0904023 Review of the literature
The need for new research
The principal theme that emerged throughout the literature was the need for specific research into Tran‟s health in relation to cancer. Cancer incidence rates amongst the Trans community are largely unknown (GIRES, 2009, Levitt, 2015). Transgender people remain difficult to count, as many have and will not reveal their gender variance to their GP or seek medical treatment (GIRES, 2009). In addition to this, the vast majority of research reviewed was either medical research focussing on hormone therapy or studies where Tran‟s needs were included in studies with the wider lesbian, gay and bisexual community (Gwendolyn et al, 2015, Margolies, 2004, Macmillan, 2013).
It is worth noting that the terms „lesbian, gay and bisexual‟
typically define someone‟s sexuality or sexual orientation which is separate to an individual‟s gender and sense of gender (Fish, 2007).
Sexuality includes being
content to the gender someone was born with (Sobralske, 2005). Tran‟s people can be heterosexual, lesbian, gay, bisexual or asexual. They will also be from various socioeconomic backgrounds; combined with ethnicity, race, culture and whether someone is disabled can, when scrutinised reveal additional inequities in access to and distribution of health resources (Donaldson, 2009).
Notwithstanding, LGBT people, as with other marginalised groups, require sensitive and informed healthcare; similar barriers in accessing services were reported, such as fear of discrimination (Levitt, 2015). However, in a briefing for the Department of Health, Fish (2007) highlighted how research studies, that included Trans with LGB (LGBT) in their study tended to achieve small samples and limited insight into the 26
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diverse needs of the Trans population (Fish, 2007, Gwendolyn et al, 2015). For this reason, this study looked to explore the experiences of Tranâ€&#x;s women in isolation, focussing on those who want to legally live in the opposite gender assigned at birth.
Some of the literature acknowledged similarities in experiences of discrimination in access to health care services within the LGBT community, such as improper use of pronouns and moral disapproval from a health professional (Fish, 2007, Scottish Needs Assessment Programme, 2001). However, it was reported that transgender people often face the most severe health disparities and forms of discrimination, often creating caution (Lambda Legal, 2001, Macmillan, 2014). A Gender Variance report published by GIRES in 2009 detailed how trans people are exposed to a risk of discrimination, bullying and hate crime for revealing their gender variance. More distressing is that this risk is reported to sharply increase if an individual makes themselves publicly visible when embarking on transition to a new gender role. This is believed to make the Trans community highly vulnerable and may be indicative of a greater need for social and medical care (GIRES, 2009).
A 2011 National Transgender Survey was completed in America with 6,500 transgender and gender-nonconforming people.
The survey revealed how
respondents were often denied equal treatment across the healthcare pathway. 24% or Trans women and 20% of Trans men reported being refused treatment altogether. Fear of stigmatisation or previous negative experience was ranked the highest for accessing healthcare, with 28% of this sample postponing accessing care or presenting late with symptoms when sick or injured as a result (Grant et al, 2011). In 2011, the UKâ€&#x;s Government Equalities Office launched an online transgender survey with 1,275 people responding. 49% put health as the top area of concern, 27
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with 40% reporting delays in accessing treatment for transgender health issues, and half saying that ignorance was the most important factor contributing to challenges accessing services. A second survey was launched in 2011 and received a lower response rate of 485. However, 75% of respondents reported experiencing delays accessing health services.
Almost half of the respondents (47%) thought
awareness-raising of transgender issues (including the reassignment process itself) would be most important to GPs. The lack of Tran‟s awareness was reported as the greatest challenge for many Tran‟s people, with 24% having had their treatment for gender dysphoria refused altogether.
Clearly this is a global issue. It was reported that in the UK alone, around 650,000 people (which is 1% of the population) were estimated to have experienced some degree of gender non-conformity and most remained invisible (GIRES, 2013). The internet, stronger laws, more visible support groups and increasingly responsible media reporting inadequacies in health care are contributing to a rapid growth in the number of Tran‟s people feeling more confident in being visible (2013). This growth is set to continue, and strengthens the case for further research into general and specific trans health needs to define how our health services need to change (GIRES, 2013).
Whilst the literature acknowledged that groups within the LGBT population have a diverse set of needs and experienced varying levels of discrimination and barriers to accessing health care (DoH, 2007), the Trans community itself are not simply one homogenous group of people. Sobralske (2005) made a valid point that in general, the health promotion awareness and health screening for a Tran‟s person will be similar to most adult patients. For example, if a patient smokes, or is obese due to 28
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poor nutrition and lack of exercise, then the same brief intervention advice approaches should be used. Yet, a 2013 survey of Trans‟ Patients‟ experiences of their GP Surgery (Bishop & LGBT Foundation, 2013) reported inconsistencies in the provision of on-going and wider health care.
The findings produced 7
recommendations aimed at informing the work required to insure that GPs and primary care staff are better equipped to recognise and meet the health needs of their Trans patients. However, the survey received only 70 responses and was kept open much longer to encourage a higher response rate. The researcher therefore, ensured that where appropriate to this study, questions were asked that could add further rigour to existing studies such as this 2013 patient survey.
There are evidently aspects of healthcare approaches that require further consideration, such as cancer (Sobralske, 2005). So, whilst it is important to ensure Tran‟s people receive universal health promotion advice and support, there also appears to be wider acknowledgement that further research is required into the specific cancer needs of Trans people (Gwendolyn, 2015). Finding a healthcare provider who is knowledgeable about the needs of the Trans community was reported as uncommon (Grant et al, 2011, Lombardi, 2010, Sanchez, Sanchez and Danoff, 2009). Finding a healthcare worker or provider with knowledge about the cancer needs of a Tran‟s woman was less common still (Levitt, 2015). A study by Levendag (1990) revealed that there had been limited efforts to identify the cancer health needs of Tran‟s people across the entire cancer pathway from prevention, early diagnosis, treatment, survivorship and end of life.
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Whilst there remains a risk of health professionals holding polarised views of Tran‟s people, there is still a risk of Tran‟s people not receiving appropriate health care (Fish, 2007). A paper by Eyler and Whittle (2001) identified that Tran‟s men are rarely included in breast screening programmes in America, and Tran‟s women are often excluded from prostate screening.
Although in England, the NHS has legal
responsibility to acknowledge someone‟s preferred gender by self-definition, irrespective of whether they have legal recognition, there are still inadequacies in NHS systems that mean Trans men and women are not receiving regular cancer screening (Whinnom, 2005). An NHS report into the „Treatment and support of transgender and non-binary people across the health and care sector‟ was published in 2015 in response to the widespread problems relating to the treatment of transgender and non-binary people and disproportionate health inequalities faced by this population. This report highlighted a number of inadequacies in existing NHS systems and failures to address the complexities and long-standing issues, such as lengthy waiting times for gender identity services.
The task and finish groups
shaping this report were made up of members from various transgender and nonbinary networks. A key recommendation from this report was the need for the NHS to acknowledge the systemic inequalities experienced by Trans and non-binary people, and to commission and publish research on how to tackle this; Cancer screening is an example of this and how existing cancer screening protocols are excluding trans people because the process of inclusion is based on a male and/or female gender marker (NHS, 2015).
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Historically, much of the research into Tran‟s people‟s health has been related to medical needs specific to gender dysphoria surgery techniques and hormone use (Sobralske, 2005, Weyers et al, 2009, Gooren et al, 2013, Gwendolyn et al, 2015); there remains little comparative research relating to the cancer care needs of the Trans population. Table 1, on the next page provides detail on the 7 cases studies of Trans women with a prostate cancer diagnosis from 1975 to 2013 identified throughout the literature (Gooren and Morgentaler, 2014). Sequentially, a literature review by Gwendolyn et al (2015) found no available studies across cancer sites other than breast and prostate.
An additional search into NHS England, Public
Health England, The Department of Health and National Institute for Clinical Excellence (NICE) identified few papers relating to Tran‟s health. As departmental and non-departmental bodies providing a combination of strategic and clinical leadership to improve health outcomes for people in England, 4 papers were discovered and only one selected for review, all which dated back to 2007. Similarly, this highlighted the lack of published research into prostate cancer amongst Tran‟s women and supported the need for new explorative research to shape the future of our cancer service from prevention and early detection to end of life (Gwendolyn, 2012).
31
64
LUTS
27
Adenocarcinoma
+
Not
Treatment
Mortality Incomplete data
52
Radiotherapy
+
53
Estramustine
Clinically
known
(1994) Van
Incomplete data
known
d (1975) Thurston
48
treatment
Not
Of hormone
+
Age at start
Gleason
Incomplete Data
Metastases
Type
PSA ng/ml
Symptom
Age 54
Presenting
Reference Marklan
Score
Date of submission: 10th June 2016
0904023
63
Haarst
Weight loss,
>100
Adenocarcinoma
+
Not known
bone pain
stable
et al (1998) Miksad
60
Haematuria
240
Adenocarcinoma
+
8
19
et al
Radiotherapy,
Clinically
antiandrogens
stable
Radiotherapy,
Clinically
Chemotherapy/
stable
(2006) Dorff et
78
Haematuria
177
Adenocarcinoma
+
9
52
al (2007)
docetaxel Molokwu
60
LUTS
No
et al
value
(2008)
present
Incomplete data
+
Not
19
Antiandrogen
Incomplete data
known
ed Turo et
75
LUTS
13.5
Adenocarcinoma
+
al (2013)
7
45
Estrogens/ chemotherapy
Incomplete data
Table 2.1 Prostate cancer cases encountered in male-to-female Trans subjects receiving oestrogen treatment (Gooren and Morgentaler 2014)
More recently in September 2015, NHS England Specialised Commissioning Directorate published a paper that made a call for NHS England to develop a fiveyear research strategy for trans and non-binary people „involving academia, to include the production of high quality, independent research articles published in peer review journals.â€&#x; The same report stressed the need for the NHS to gather data on this population across all NHS services and including the national patient survey. These recent recommendations together with previous literature within this theme provided a robust rationale for this study. The following section presents the
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literature relating to education and training, of both health professionals and Trans women.
Education and Training
The literature consistently reported how Tran‟s people were disproportionately affected by discrimination (Lambda Legal, 2001, Bishop, 2013, Macmillan, 2014, Levitt, 2015). This included, but was not limited to; the use of gendered language and documentation, a health professionals‟ lack of knowledge of Trans specific issues, gender-segregated systems and insensitive care (Vogel, 2014, Unger, 2014, Levitt, 2015).
Similarly, Trans women included in studies within the literature consistently reported finding a healthcare provider who is knowledgeable about the needs of the Trans community as uncommon (Grant et al, 2011, Lombardi, 2010, Sanchez, Sanchez and Danoff, 2009). Finding a healthcare worker or provider with knowledge about the cancer needs of a Tran‟s woman was less common still (Levitt, 2015). A study by Levendag (1990) revealed that there had been limited efforts to identify the cancer health needs of Tran‟s people across the entire cancer pathway from prevention, early diagnosis, treatment, survivorship and end of life. More concerning, is the notion that Trans people are collectively increasing their visibility (Algeria, 2011) and health services are not equipped to cope with their needs. The Gender Recognition Act (2014) has given Tran‟s people the right to obtain legal recognition in their acquired gender, and paves the way for a new group of mature Tran‟s women with general and specific healthcare needs just like the rest of society (Algeria, 2011, Gooren, 2011). The literature questioned how our healthcare services and workforce 33
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had adequate knowledge to care for their Trans patients without access to appropriate training and education (Rondahl, 2009, Sanchez, Sanchez and Danoff, 2009, Alegria, 2011).
The literature made reference to the significant physiological differences in a Tranâ€&#x;s woman body (Van Kesteren et al, 1996, Sobralske, 2005, Weyers et al, 2008, Gooren, 2015, Levitt, 2015).
These researchers felt that this physiological
difference warranted the need for specific education and training at both an undergraduate medical level through to registered GPs and primary care clinicians. Where Tranâ€&#x;s women have had Gender Reassignment Surgery (GRS) the GP needs to be conversant with urinary problems following Penectomy and consequent changes to the lower Urinary Tract (Weyers et al, 2008).
Similarly, where a
vaginoplasty had been performed there may be problems in performing a digital rectal examination and the examination may have to be performed via the vagina. Figures 2.2-2.4 show how scar tissue as a result of vaginoplasty has the potential to cause problems in performing a rectal digital examination (Meyer et al, 2008).
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Figure 2.2 Normal Urinary Bladder and Prostate
Figure 2.3 Approximate Location of Neo-Vagina in Normal Male
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Figure 2.4 Neo-Vagina after prostatectomy
A 2013 survey of Trans‟ Patients‟ experiences of their GP Surgery (Bishop & LGBT Foundation, 2013) reported inconsistencies in the provision of on-going and wider health care.
The survey received 70 responses, which resulted in 7
recommendations that largely focussed around the need for education and training for GPs and primary care staff. Tran‟s awareness training in general and specific training to GPs to up skill them on the protocols for referral to gender identity services were discussed. Similarly, a National Transgender Discrimination Survey (Grant et al, 2011), sampled 6,500 transgender and gender-nonconforming people and half reported having to teach their healthcare providers about transgender care. These findings were supported in a recent NHS England Report that included recommendations such as; the need for further education to create a cultural shift amongst NHS staff, training and education for GPs and Royal Colleges awarenessraising for all around treatment for trans and non-binary people in relation to somatic
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condition and informed choice (NHS, 2015). The literature highlights that there is an acknowledgement nationally that health professional‟s need generic Tran‟s awareness training and education. Therefore, if it is difficult to find professionals who understand Trans needs in general health care, then it is likely to be even more difficult to find health professionals who are aware of the needs of trans people in relation to cancer services (Fish, 2007).
A report by Roehr (2015), evaluated the success of a new integrated multidisciplinary service for Transgender people in California, America.
America is
different to England and operates a private health care system where health care facilities are largely owned by private organisations. As a result, medical expenses can be high so many people seek private medical insurance. However, medical insurance only covers the costs for conditions and/or treatments listed in their policy document, which up until 2010, did not include hormone treatment or gender reassignment surgery. In addition to this, some health insurance plans still do not include cover for gender transition and gender specific care (e.g. gendered cancers, such as prostate cancer) are denied (Unger, 2014). Unsurprisingly, social and economic marginalisation had been reported by Tran‟s people in America as one of the main barriers in accessing healthcare services and support (Roehr, 2015).
In
2010, the government implemented a patient protection and affordable care act that required health insurance providers to review their quality and coverage of their products. This expansion of insurance cover for both public and private services meant that Tran‟s people were able to access a specialist clinic for the first time (Roehr, 2015). This enabled Tran‟s patients to access expert advice and support, not only about gender reassignment surgery, but holistic health and social care
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support and advice. Tran‟s men could access cervical screening, and Tran‟s women prostate cancer screening in a neutral environment (Roehr, 2015).
Like everyone in society, Transgender people want local services for both routine and speciality care. In England, there are currently 7 gender identity clinics, located at Charing Cross, London, Exeter, Leeds, Newcastle, Northampton, Nottingham and Sheffield. A report by Trans Info into the current waiting times and patient population for NHS England gender identity services (2014) requested data from all 7 services. They combined the waiting list data with current patient lists and in August 2014 alone, 7,799 patients were recorded as accessing these services and the average waiting time regularly exceeded 18 weeks (UK Trans Info, 2014).
The report
summary stated that the “length of time patients have to wait for their first GIC appointment is, in most cases, unacceptable”.
The Gender Variance report by
GIRES (2009) emphasised the need for policy makers to be aware of the uneven demographic dispersion of Tran‟s people in the UK. Prevalence was reported to vary by some 35 per 100,000 across the country with no general correlation between population density and incidence of gender dysphoria.
Interestingly, this report
attributes this variance to cultural factors and asks that policy makers consider what needs to be done to create a more supportive environment for Tran‟s people. This concept is particularly pertinent to the rationale for this study and attempting to understand the demographic dispersion by asking relevant questions as part of the online survey and interviews. Similarly, to gain insight into the experiences that Tran‟s women had of prostate cancer support and services to improve the evidence base and inform a set of recommendations of how prostate cancer services (from
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primary care through to LWBC) need to change to be more appropriate to the needs of trans women.
In the US, the lead physicians at the American Gender Identity clinic, explored Roehr‟s 2015 report and concluded that the most cost effective and simplest way to ensure transgender people have access to local services that recognise their diverse needs outside of gender reassignment surgery is „cultural competency‟.
They
believed that training and education for all health and social care staff (from receptionists through to consultants) in Tran‟s awareness will motivate a culture shift in health and social care staff attitudes and how services are delivered. A challenge of this of course is having access to training materials and financial resource. The UK‟s current health and social care system is under financial pressure to deliver existing services with significant cuts to funding.
Moreover, services and
infrastructure are devolving; primary and secondary care have and continue to be affected by lack of capacity within the workforce and time to participate in mandatory training and education. The New Cancer Strategy for England (2015-2020) supports this view.
It emphasises how the success and continuous improvement of our
cancer services depends on the culture and attitude of healthcare professionals in embracing partnership and working with patients and seeing them as equals in decisions about their treatment and care.
Cancer services are faced with a number of challenges to ensure the continuous improvement of cancer care in the UK. The following section explores in more detail the specific challenges raised throughout the literature in ensuring our cancer services appropriately meet the needs of Trans Women.
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The challenges of ensuring the appropriate provision of prostate cancer awareness, treatment and aftercare for Trans Women
The researcher separated this theme into the three main areas of the cancer pathway as identified throughout key national cancer guidelines, policy and legislation (National Cancer Strategy 2015-2020):
Awareness and Early Detection (including cancer screening)
Diagnosis and treatment
Living with and beyond cancer
Awareness and Early Detection
The literature implied that there remain numerous unanswered questions with regards to the diagnosis and management of prostate cancer in Tran‟s women. It is apparent from the literature that the endocrinological factors in the induction, growth and reduction of Prostate Cancer have a long history. Sequentially, Orchiectomy (removal of the testes), oestrogen therapy and more broadly Androgen Deprivation Therapy (ADT) have made some important developments from the 1940s onwards (Preston et al, 2003, Ockrim et al, 2006, Morgenteler, 2009). Current research is making the situation much more complicated with many other biochemical factors emerging. This includes the effects of oestrogen in stimulating growth of Stromal Cells in the prostate (Preston et al, 2003, Sobralske, 2005, Ockrim et al, 2006, Turo et al, 2013, Gooren, 2015) and the counter indications this then creates for the awareness, diagnosis of prostate cancer in trans women.
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What is apparent from the literature is that the Trans woman‟s body is complex (Ockrim et al, 2006, Turo et al, 2013, Gooren, 2015). The prostate gland is not removed in Tran‟s women irrespective of whether an individual chooses to initiate hormone therapy or undergo gender reassignment surgery. Albeit the prostate gland is smaller from the effects of oestrogen (Sobralske, 2005), and older research has always considered androgen deprivation (which occurs during hormone treatment in Tran‟s women) as further protection against prostate cancer.
However, new
emerging reports of prostate cancer in Tran‟s women merits re-evaluation (Van Kesteren et al, 1996, Sobralske, 2005, Gooren, 2015, Levitt, 2015).
Turo et al
(2013) therefore suggested the need for further research before a definitive answer could be derived; and asked the question whether Tran‟s women should be offered routine monitoring of their prostate-specific antigen (PSA) levels? What he, and other studies advocate is the need for prostate cancer screening in Tran‟s women before starting hormone treatment to rule out signs of the disease (Turo et al, 2013 and Gooren, 2015, Morgentaler et al, 1996, Morgentaler & Rhoden, 2006). Cancer screening for Trans people may require a modified approach (Levitt, 2015); Such as routine digital examination (Gooren et al, 2014). The reduction of testosterone, which is a consequence of hormone therapy in Trans women has been linked to a risk of a positive prostate biopsy and an increased PSA level (Morgentaler et al, 1996), therefore Gooren (2014) recommends that any PSA level greater than 1.0 ng/ml should be further investigated (PCUK suggest „normal‟ PSA level for men aged 5059 years as 3ng/ml). Similarly, low testosterone levels have been related to poorer prognosis in men with prostate cancer prior to treatment (Garcia-Cruz et al, 2012, Hoffman et al, 2000), but all studies acknowledge that recommendations and
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thresholds embedded are monitored and may require revising with the availability of new evidence.
In response to the above, the researcher designed this study to provide Trans women with the opportunity to provide qualitative insight, rigour and validity to the procedures mentioned earlier. Through an exploration of the views of Tranâ€&#x;s women in more detail; the researcher aimed to understand and clarify the accuracy and relevance of information Tranâ€&#x;s women have had and continue to receive in relation to prostate cancer risk, awareness and early detection irrespective of whether they choose hormone therapy and/or gender reassignment. What was clear was the need for cancer services to provide tailored information, guidance and support since many Tranâ€&#x;s women found themselves in an age group where prostate cancer was a concern (Weyers et al, 2009). Yet the literature provided little insight to shape this need. Current evidence states that the risk of developing prostate cancer increases from 50 onwards (PCUK, 2015). Prostate cancer is the second most common cancer in the UK (CRUK, 2013). 47,300 new cases of the disease were diagnosed in 2013, with more than half (54%) diagnosed in men aged 70 and over (CRUK, 2011-2013). In the last 10 years, the incidence of prostate cancer has increased by 5% (CRUK, 2013). With the Gender Recognition Act (2014) giving Trans people the right to obtain legal recognition in their acquired gender, it is clear that a new group of mature trans women with general and specific prostate cancer healthcare needs just like the rest of society will emerge (Algeria, 2011, Gooren, 2011).
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0904023 Diagnosis and Treatment
Some of the literature selected for review discussed studies of cases where prostate activity persisted in Tran‟s women who had begun hormone treatment and were therefore unaffected by the reduction of androgens (Morgentaler, 2012); and other cases where prostate cancer had begun to grow in a Tran‟s women before starting hormone treatment (Gooren, 2015 and Turo, 2013).
Albeit, the evidence was
limited; only seven case studies of Tran‟s women with prostate cancer were available for review as part of Gooren‟s 2015 study (table 1) (Markland, 1975, Thurston, 1994, Van Haarst et al, 1998, Miksad et al, 2006 Dorff et al, 2007, Molokwu et al, 2008, Turo et al, 2013).
It is evident that it remains difficult to
understand morphological changes and how the tumours developed, changed and were affected by androgen depletion, thus meaning that treatment and follow-up for these patients was and continues to be a challenge. This proposed study with Tran‟s women not only aimed to capture their experiences of the entire prostate cancer care pathway, but also provide more clarity around prostate cancer incidence and prevalence in Trans women.
Meyer et al (2008) assessed the feasibility and diagnostic competencies of prostate examination through transvaginal palpation and transvaginal ultrasound in 70 transsexual women. This study concluded that overall, digital vaginal examination, speculum examination and transvaginal ultrasound were both feasible and well accepted by the group.
However, several anomalies were identified between a
transvaginal ultrasound and digital vaginal examination protocols such as; a smaller sized speculum and probe were necessary in 93% of patients.
This detail and
information is currently not routinely shared with undergraduate medical students 43
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and/or existing GPs and Primary Care professionals. Meyer et al 2008, therefore suggested that this information is embedded within exiting guidelines for the monitoring and aftercare of Trans women in primary care. This recommendation was adapted from the „Primary Care Protocol for Transgender Patient Care‟, by the Centre of Excellence for Transgender Health, 2011.
In 2006, Gooren presented the first set of systematically obtained data regarding the prostate cancer risk in the Trans women population from a large gender reassignment clinic in Amsterdam. 2306 men who underwent gender reassignment surgery were studied from 1975 to 2006.
One case of prostate cancer was
diagnosed in this cohort (Prostate cancer rate of 0.13%).
The individual was
diagnosed at 63 years of age; 10 years after starting hormone treatment.
The
patient presented with bone pain and weight loss and following medical investigations, they were diagnosed with prostate cancer, administered palliative chemotherapy and survived three years post diagnosis (Van Haarst et al, 1998).
Turo et al (2013) eluded to two large randomized control trials into the successful use of specific chemotherapy drugs to treat Tran‟s women after prolonged use of the female hormone, oestrogen (Small et al, 2001 and Tannock et al, 2004). The literature presented conflicting views in the risk of prostate cancer in Tran‟s women; some of the research reported a minimal risk for a Tran‟s women developing prostate cancer after starting oestrogen (Sobralske, 2005), and others supported the notion that there is an evident risk to a Tran‟s woman in developing prostate cancer even after oestrogen therapy (Small, 2001, Tannock et al, 2004, Gwendolyn et al, 2015). This not only paved the way for this study and further discussion, but also raised a number of questions about the follow-up status assigned to a Tran‟s women 44
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during and after hormone treatment and the provision of the most current information and advice for prostate cancer; signs, symptoms and treatment that promote informed choice. Furthermore, even with proven successful treatments available, whether prostate cancer screening should be considered and discussed routinely with Tran‟s women before they start hormone treatment and irrespective of whether they chose to undergo reassignment surgery? (Gwendolyn, 2015).
Living with and beyond (LWBC)
The literature fundamentally highlights the incidence of prostate cancer in Tran‟s women as low to very low (Turo et al, 2013) or largely unknown (Levitt, 2015). In most cases, this is attributed to the few reported cases and the number of cases when a patient‟s disease is defined as castrate resistant. This means that the cancer has metastasised and spread to body parts beyond the prostate and continues to grow despite using hormone therapy (ASCO, 2014). Another possible explanation is that of all the studies included for review, sampled Tran‟s women who had at least completed hormone replacement therapy. We therefore know very little about how many Tran‟s women are living with and beyond a prostate cancer diagnosis (Turo et al, 2013); consequently, the researcher has included in this study anyone who identified as a Trans woman irrespective of medical intervention, to determine a more accurate picture of prostate cancer incidence amongst Trans women. This exploration of experiences allowed the researcher to provide insight and validity that shaped a set of recommendations about the support and care Trans women require across the entire prostate cancer pathway.
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As previously mentioned; the literature did not acknowledge those Trans women who may not have chosen to use hormone therapy or have gender reassignment surgery and posed the question as to how much health professionals and our health services are aware of this?
Although the literature identified 7 reported cases of Trans
women diagnosed with prostate cancer (table 1) (Markland, 1975, Thurston, 1994, Van Haarst et al, 1998, Miksad et al, 2006 Dorff et al, 2007, Molokwu et al, 2008, Turo et al, 2013) it is worth noting that; all of these cases had started or completed hormone therapy. Four of these cases were over 48 years old when they started hormone therapy. It is inconclusive as to how far the prostate cancer was affected by the presence of androgens, oestrogens, or was in fact already there before starting hormone therapy (Gooren et al, 2014).
There appeared to be multiple factors contributing to explanations for the low incidence of prostate cancer amongst Tranâ€&#x;s women. Hormone therapy became available in the 1970s and prostate cancer is predominantly a disease affecting men over the age of 50 years old (Parkin et al, 2005). Even without the societal and cultural attitudes limiting an individualâ€&#x;s confidence to come out as a Tranâ€&#x;s woman; they may not have reached the age when prostate cancer is most prevalent, or have initiated or completed hormone therapy within a time frame that allows it to be significantly linked to a diagnosis of prostate cancer (Gooren et al, 2014).
Irrespective of whether a Trans woman is using medical intervention or not, they will have a prostate and, like the rest of the population with a diverse set of needs, should ideally have access to a variety of healthcare services (from awareness and early detection through to living with and beyond a diagnosis) and professionals who are able to provide the right and help and support (Markland, 1975, Thurston, 1994, 46
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Van Haarst et al, 1998, Miksad et al, 2006, Dorff et al, 2007, Molokwu et al, 2008, Turo et al, 2013). Therefore, this study aimed to clarify the current situation to determine whether there is a need for cancer services to change their offer to ensure they are better equipped to meet the prostate cancer needs of Tranâ€&#x;s women from awareness and early detection through to living with and beyond a cancer diagnosis.
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Chapter 3
Methodology
This chapter provides insight and explanation for the paradigm of enquiry and its intentions. The research requires a methodology that provides the fullest picture; with alternative perspectives to facilitate a complete exploration of the perceived experiences, thoughts and feelings of Trans women living with and beyond prostate cancer.
Philosophical Approach
A paradigm is the theoretical framework that influences the way knowledge is studied and interpreted (Mertens, 2005; Bogdan & Biklen, 1998). It sets the intent, motivation and expectations for the research. Therefore, an exploration of the researcherâ€&#x;s philosophical approach or paradigm adopted for this study is required to define the researcherâ€&#x;s methodological approach (Lincoln & Guba, 1985).
A number of theoretical paradigms are used across the discourse. The methodological approach that this study used resonates in the constructivist paradigm.
Constructivist researchers believe that the many truths and multiple
realities of the social world can be found through studying the holistic perspective of the person and their environment (Cohen et al, 1994).
However, in isolation this
does not adequately address the issues of social justice and marginalised individuals (Crewswell, 2003), such as the Trans population. Dissatisfaction with this and other dominant research paradigms facilitated the evolving of the transformative paradigm 48
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during the 1980s and 1990s (Mertens, 2005). Transformative researchers believed that much sociological and psychological theory underpinning traditional research paradigms “had been developed from white, able-bodied male perspective and was based on the study of male subject” (Mertens, 2005:17).
The
constructivist
paradigm
generally
operates
using
qualitative
methods
(Silverman, 2000; Wiersma, 2000; Bogdan & Biklen 1998; Mertens, 1998; Burns, 1997; Cohen & Manion 1994; Glesne & Peshkin 1992), whereas, the transformative approach utilises both qualitative and quantitative data and analysis methods. The transformative paradigm offers a framework to support the researcher in raising questions about the assumptions that underpin this research; and the contribution it could provide in enhancing the patient experience and provision of prostate cancer services and support for this population in the future (Mertens, 2007).
Through the use of multiple methods, and interweaving the inquiry with politics and political agenda, the transformative researcher analyses data to provide a catalyst for change. This change may be to individuals‟ lives or institutional (Creswell, 2003). The qualitative element will gather the perspectives of Tran‟s women accessing prostate cancer services. Therefore, the data collection method needed to recognise the potential challenges when recruiting participants, as some Tran‟s women may have felt apprehensive in taking part or lack trust in the researcher and their understanding of Trans needs (Turo et al. 2013).
Sequentially, the quantitative
element provided the opportunity to demonstrate that the findings and subsequent recommendations have credibility amongst both the Tran‟s community and key cancer partners (Mertens, 2007).
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What the literature fundamentally highlighted was the significant lack of data and knowledge of the Tran‟s population; partly due to the lack of routine monitoring of sexual orientation and gender identity (GIRES, 2009, Guasp & Taylor, 2012). Although studies have been done with the Tran‟s women population and prostate cancer in isolation of each other, this was the first study of this kind in the UK. The researcher therefore approached this study and its design as a starting point for the education of health and social care and future research, and forecast that the sample size is unlikely to be generalisable to the larger Trans women population. Obtaining Trans participants in general is difficult. Fear of discrimination or disapproval are only some of the reasons reported to prevent a Trans person from engaging in a study (Lambda Legal, 2001, GIRES, 2009, Macmillan, 2014).The job of the researcher was to ensure data collection methods were structured and delivered in such a way that alleviated concerns around representativeness and generalizability and replaced with a compelling evocation of each individuals experience (Seidman, 2005). The researcher was reliant upon the experiences of Tran‟s women to build and explore perceptions and provide a starting point for discussions and future research and used a more flexible approach in order to provide greater validity (Denzin, 1970, Blaxter et al, 2009, Bowling, 2009). The following sections outline the various elements to, and rationale for this study design.
The researcher used multiple data collection methods to mitigate the fact that it is not always possible to generalize findings from a single method study.
However, a
challenge was how Lesbian, Gay, Bisexual and Tran‟s populations have not been included in international cancer registries or national Department of Health datasets, the UK Census, or the majority of Office for National Statistics surveys (Public Health
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Outcomes Framework, 2012) and this limited the amount of cancer data specific to the Tranâ€&#x;s people.
Triangulation
Combing multiple methods is a critical part of the transformative research model (Mertens, 2007). This methodological approach insists that the researcher acquires a depth of understanding of the cultural issues involved with the sample population being studied, such as discrimination and marginalisation (Mertens, 2007).
This
requires data collection methods that are flexible and offer options for this population to engage, ensuring opportunities are opened for those whose voices have been traditionally excluded (Mertens, 2007).
Therefore, three data collection methods
were used: collation and analysis of existing demographic data (quantitative), data obtained from the on-line survey (quantitative and qualitative) and in-depth interviews by telephone or in person (qualitative).
This is otherwise known as
„triangulationâ€&#x;. Triangulation can be used between methods or within a method. Using this method allowed the researcher to shape the interview questions from the online survey responses. It also allowed the researcher to remain flexible to capture the diverse experiences of the Trans women who took part (Mertens, 2007).
This study adopted different methods to use with the same subject (betweenmethods) (Denzin, 1970, Bowling, 2009). An online questionnaire was combined with interviews (face-to-face or via telephone). Using a multiple method approach to data collection and analysis also supported the transformative researcher within the constructivist paradigm.
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Quantitative data methods resonate within the positivist paradigm and utilise scientific and numerical data methods to understand human behaviour (Parahoo, 1997). Initially, the researcher reviewed the available demographic data of Tran‟s women included within the studies selected as part of the literature review (Fish, 2007, GIRES, 2009, Levitt, 2015, Gwendolyn et al, 2015). The researcher also incorporated closed questions within an online survey to collate quantitative information (Creswell, 2003) that could be augmented with existing prostate cancer incidence in Tran‟s women data. It was anticipated that analysis of this data would add rigour to existing research and contribute to policy development and frame legislation, recommendations, service planning or implementing change (Brannen, 1995). Furthermore, the interpretation of existing and new quantitative data provided context, greater clarity and validity about the Tran‟s women population living with and beyond a prostate cancer diagnosis (Seidman, 2005).
However, a challenge of these quantitative data collection methods was how far findings could be generalised to the population being studied (Mitchell, 1983). Small samples and restricted or highly variable ranges were possible in a sample with lowincidence of prostate cancer. This introduced challenges related to rigorous data analysis (House, 1998).
The uniqueness of this population also created problems
with attempts to replicate findings. “Replication makes an assumption that similar people in similar circumstances can be used to demonstrate the generalizability of results” (Seidman 2005, pp 51-52). By employing multiple methods the researcher was able to add further rigour and validity that built a more comprehensive understanding of the multiple perspectives of the social world surrounding the Tran‟s
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population and prostate cancer services (Somekh & Lewin, 2005, Mertens, 2005, Silka, 2005).
The researcher considered the evidence within the literature reviewed, and took into account the factors that may have influenced a trans womanâ€&#x;s willingness to participate (Levitt, 2015, Gwendolyn et al, 2015, Fish, 2007) such as; previous experiences of discrimination, fear of discrimination, not wanting to reveal their gender variance, in proper use of pronouns, feeling judged by a healthcare professional (Lambda Legal, 2001; GIRES, 2009; Bishop, 2013; Macmillan, 2014; Vogel, 2014; Unger 2014; Levitt 2015). The researcher therefore believed that a multiple method approach to this study would be most appropriate to the Trans women population and the exploration of their experiences of prostate cancer services (Burgess, 1984, Brannen, 1992). Combining both the data from the on-line survey and semi-structured interviews allowed for an understanding of “greater diversity of values, stances and positionsâ€? (Somekh & Lewin, 2005, p.275).
Consequently, the researcher used interviews in an attempt to learn about the social world to contribute knowledge that could be of use to understanding a social position or change. This type of data is qualitative (Silverman, 2011). Qualitative data is usually collected within a natural setting from spoken or written word.
It uses
interviews, questionnaires and observations as a preferred method of inquiry to understand the social world (Creswell, 1994, Silverman, 2011).
The use of
qualitative data within this research provided a greater understanding into the Trans women experiences of prostate cancer services.
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This use of a multiple method design is not without criticism. Whilst many theorists believe triangulation to enhance validity (Denzin, 1989, Webb et al, 1996, Bowling, 2009), other researchers feel this belief is naïve (Fielding and Fielding, 1886, Bryman, 1988).
However, no research method is without bias (Bowling, 2009).
Multiple methods had been chosen for this study to reduce, as much as is possible, the „personal biases that stem from single methodologies‟ (Denzin, 1989) and be empathetic to the barriers and fear trans women may face when sharing experiences (Bishop and LGBT Foundation, 2013). The researcher augmented the data from the on-line surveys with data from studies included for review and qualitative data from the interviews to create a new arena for future discourse around the cancer needs of Tran‟s women.
Online Survey
The researcher developed an on-line survey using „survey monkey‟ software. The survey included a mixture of closed and open questions to gather both quantitative and qualitative data. Closed questions were presented (Blaxter, et al, 2010) with multiple choice options about a participant‟s age range, preferred gender definition, sexual orientation, ethnicity and how they rated elements of their care and support; from information resources to trans awareness amongst health professionals (appendix 8, questions 1-5 & 13). These questions were designed to generate conclusive data,
and allowed the researcher to easily code and categorise
responses to provide some statistical significance and context to the phenomenon being explored (Bruce, Pope & Stanistreet, 2008), particularly in relation to preferred terminology and where an individual lived. Questions 7 onwards within the survey were open ended questions with comment boxes provided for participant answers. 54
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The use of both open and closed questions created additional complexity for this survey (Blaxter et al, 2010).
The researcher was keen to avoid ambiguous or
imprecise questions, or language that assumed the participant had specialist knowledge (Munro et al, 2004). Tranâ€&#x;s women who had no diagnosis of prostate cancer were invited to complete the survey to capture the experiences of those who may have accessed a service for advice or information about prostate cancer to evaluate the accuracy of information and support given.
For this reason, the
researcher made sure the survey included clear instructions when it was specific to prostate cancer care and services accessed. Concurrently, the researcher ensured there were no hypothetical questions included that went beyond the experiences of a participant and could have attracted less accurate responses, not based purely on lived experience (Baxter et al, 2010).
To ensure further validity, the researcher consulted with the Trans project worker at the LGBT Foundation, members of the LGBT Cancer Support Alliance and Trans women to ensure questions were structured and phrased appropriately (Warren & Karner, 2005).
A stand-alone survey could create a less personable situation
(Constantinos et al, 2011) which would not be conducive to the transformative paradigm approach and research that was around a sensitive topic, such as gender identity and cancer. Therefore the researcher also used face-to-face and telephone interviews.
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Interviews
This study used semi-structured face-to-face and/or telephone interviews to explore the experiences of Tran‟s women (who live as a woman full time; who are on, have a desire to, or have completed the transition process and want to or have legal recognition as a woman). Combinations of structured and semi-structured questions were asked with the aim of providing evidence and discourse around the nature of the phenomena being investigated (prostate cancer services).
Interviews are among the most common strategies for collecting qualitative data (DiCicco-Bloom & Crabtree, 2006). There are a number of dilemmas a researcher could be faced with concerning interviews and how to collect and subsequently analyse the data (Silverman, 2001). The positivist researcher is concerned with creating a “pure” or “sterile” interview, using structured interviews questions to facilitate a more true reality of the social world we exist in (Parahoo, 1987). However, many theorists reject this view, suggesting that the use of open-ended interviewing that is as unstructured and as sterile as possible elicits more authentic accounts of a subjective experience (Miller & Glassner, 2011; Harding, 1987; Latour, 1993). The nature of the question being explored with participants that may have been traditionally marginalized by society required a method that ensured optimal opportunities to have their voices heard (Simons, 2006). For these reasons, the researcher used both telephone and face-to-face interviews; and online surveys for those participants who would prefer not to be interviewed.
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However, there are some arguments that the reality of our social world or the phenomenon being studied can‟t be achieved through an interview alone (Lincoln & Guba, 1985). Social constructivist‟s theory suggests that the use of interviews in isolation create bias on the basis that interviews are an exclusive interaction between interviewer and interviewee and the context of narrative is created and constructed by both participants (Silverman, 2001). Other criticisms of this method include observer bias, lack of validity, generalizability and high costs attributed to gather the evidence (Williams, 2014). To ensure validity, reduce bias and the use of leading questions, the researcher completed several workshops in research interviewing and conducted pilot interviews with colleagues (Creswell, 2003). It was also important that the researcher adopted a method that captured the indigenous voices and realities of this group. Consequently, the researcher used a combination of telephone or face-to-face interviews or and an online survey.
To ignore the transformative paradigm for a study with this disenfranchised population would create tensions and not be appropriate to their dimensions of diversity (Mertens, 2005:17). This is a population who are faced with a variety of cultural complexities, discrimination and injustice (Grant et al, 2011). The Gender Recognition Act (2004) highlights the emergence in changes to political and social attitudes towards Tran‟s people. However, there is still a long way to go; Tran‟s people still report experiencing discrimination from health professionals who were insensitive to Tran‟s issues (Fish, 2007). How the interviewee responded was a challenge for the interviewer. How an individual responded was based on a number of factors such as, age, gender, class and race.
This issue could be further
exacerbated by studying a group whom the interviewer does not share membership
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with (Silverman, 2011). This study recruited 20 Tran‟s women irrespective of them not knowing the interviewer. They may not have trusted the interviewer/researcher and/or considered the researcher to not know or understand enough about the challenges and issues faced by Tran‟s women. Participants may not have wanted to/or felt comfortable with a face-to-face interview. Depending on the individual and the context of their life and experiences that exist outside of this study would have influenced their decision whether to take part or not. Some Tran‟s women may not have felt comfortable with how they look, how they sound and therefore, participants were given the option of a face-to-face interview, a telephone interview or an on-line survey to take part (GIRES, 2009).
According to Sanders (1995), a difference exists between how sceptical a researcher can be with information obtained from an interview, and how far they are able to examine and consider the context and situation the information was gathered in/from.
The researcher applied this concept when analysing the information
obtained through the face-to-face and telephone in-depth interviews with participants.
Interviews provided richer data that was less likely to be achieved
through a questionnaire design alone (Brannen, 1992). The primary aim was to generate data that would provide an authentic insight into the experiences of Tran‟s women accessing prostate cancer services. The researcher appreciated that the small sample being studied created challenges and acknowledged the need for objectivity; the experiences reported by participants were not absolute or fundamentally true or representative of this entire population (Dawson and Prus, 1995 p. 113).
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According to Miller and Glassner (2011) in-depth interviews provided the researcher with access to more detailed information that surveys, case studies or focus groups would not allow. A survey design alone would not allow the opportunity to clarify or discuss responses, particularly in relation to the language and terminology used amongst the Tranâ€&#x;s community.
Definitions of Tranâ€&#x;s have varied historically,
culturally and geographically over time, one person or profession to another and contested based on political, geographical or cultural factors (Fish, 2007; GIRES, 2009; Bishop and LGBT Foundation, 2013). A stand-alone survey would create a less personable situation (Constantinos et al, 2011) which is not conducive to the transformative paradigm approach and research that is around a sensitive topic, such as gender identity and cancer. Similarly, focus groups is a method which would be more suited to explore issues such as dissatisfaction with a certain topic, or investigations of the social structure within a community, and does not allow the researcher to delve as deeply into individual social and personal matters (Chilban, 1996; Johnson, 2002; Rubin & Rubin, 2005).
The nature of the phenomenon
investigated was emotive; there was the potential for the participant to move the discussion to experiences un-related to the research question (Seidman, 2006). The assumption that all members of the group shared an experience of the phenomenon being studied would have been ill-judged (Webb et al, 2001). Similarly, some people may have felt more comfortable on a one to one basis to have their say and express their opinions and feelings than in a focus group setting, were there may be a risk of feeling intimidated to agreeing with the majority (Warren & Karner, 2005).
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Semi-structured interviews allowed the researcher the opportunity to explain and elaborate around any questions that the participant may not have understood (EMANS, 1986). It allowed greater scope to explore and assess what impact the individual experiences of prostate cancer services had on Tranâ€&#x;s women feelings and perceptions about those services (Burns, 2000, Miller and Glassner, 2011). The researcher however, was aware that the visibility in a face to face interview could lead to disturbing interviewer effects, for example, if the interviewer guided with his or her behaviour the interviewee in a special direction (Burke et al, 2001). The researcher was aware of this and hoped to diminish this risk by using an interview guide and completing additional formal training in qualitative interviewing. Augmenting and comparing the data from both interviews provided clarity and insight into the most appropriate method.
Open ended question design with prompts from a discussion guide (appendix 5) allowed the participant time and scope to discuss their experiences and perceptions (Morse and Richards, 2002).
Although the discussion guide predetermined the
open-ended questions, other questions emerged from the dialogue between interviewer and interviewee (Barbour, 2001). The use of interviews was expected to facilitate discussion and provided evidence and insight that informed the findings and recommendations for health professionals in cancer services. The researcher used broad, open-ended questions to build a rapport with the participant (Barbour, 2001). To ensure validity, reduce bias and the use of leading questions, the researcher consulted with employees from the LGBT Foundation and members of the LGBT Cancer Support Alliance to ensure the most appropriate use of terminology and phrasing of questions (Warren & Karner, 2005).
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Data Analysis
Multiple methods (triangulation) were used to explore the same subject. The researcher chose to use this approach to optimise chances of recruiting as broad a range of participants for this study as possible within the relatively short time scale (Denzin, 1970, Bowling, 2009).
The emergence of themes following the transcribing of the interviews was presented following Collaizziâ€&#x;s (1978) thematic analysis (Parahoo, 1997).
This is one of a
number of strategies used to interpret narrative data about peopleâ€&#x;s everyday lived experiences through analysing, extracting and organising the data (Shosha, 2012). There are a number of approaches to interpreting and analysing data studying a phenomenon or phenomenology.
Gearing (2004), assumes the method of
bracketing whereby, the researcher is requested to declare their personal bias and assumptions in order to put them to one side (bracket). This is in an attempt to keep what is already known about the phenomenon from narrative obtained from the interview (Ahern, 1999; Gearing, 2004; Speziale & Carpenter, 2007). This method was rejected by the researcher as the purpose of this study was to provide a starting point for future research about the prostate cancer healthcare needs of the Trans women community; that could lead to recommendations for policy changes and educating service providers and commissioners. As it was difficult to generalize because of the smaller sample size and limited literature to analyse; the researcher anticipated the use of Collaizziâ€&#x;s seven stepped approach would be more suited to the data and extract clusters or themes from the narrative.
This is a popular
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Participants had the option to take part either via a semi-structured, face-to-face interview, a semi-structured telephone interviews or an on-line survey through Survey Monkey. Participants were required to read the participant information sheet (appendix 4) and complete the consent form (appendix 5) in line with ethical guidelines before an interview was arranged. Each interview lasted between 45 to 90 minutes and was conducted by the main researcher. Colaizzi‟s seven step process for analysing the data was used (cited in Sanders, 2003; Speziale & Carpenter, 2007). This approach was also selected to provide additional rigor, strength, reliability and validity (Speziale & Carpenter, 2007; Vivar, McQueen, Whyte & Armayor, 2007); and enabled the collection and analysis of rich data to highlight the essential nature of the phenomenon being studied (Nuttall, 2006). The approach also provided greater depth to the findings than quantitative analysis alone (Bowling, 2001) and enabled full exploration of participants‟ perceived experiences of prostate cancer services and the impact of these experiences on the individuals quality of life and health and well-being (Sanders, 2003).
It was difficult to assess how far the findings were biased by the researcher‟s own opinions, and much of this relied in the skill of the interviewer (Shils, 1959). As a novice, the researcher completed a two day post graduate workshop in qualitative interview techniques to minimise potential bias and increase their practical interviewing skills (Patton, 1999). The researcher listened to each interview twice, taking note of the individual‟s tone of voice, pauses, etc; and transcribed verbatim (word for word reproduction of verbal data) (Indian Scribes, 2009) before using Collaizzi‟s (1978) seven steps theory of data analysis to draw out themes.
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Sampling and Sampling Strategy
The researcher used a purposive sampling method of transgender women with a current or past diagnosis of prostate cancer (Patton, 1990). This method was more appropriate as the sample size was likely to be too small for generalization. As GIRES (2009) emphasised, transgender people remain difficult to count as many still do not feel confident revealing their gender variance. Historically, there has been little research into Tran‟s people‟s needs; and any research has tended to be medically focussed or within wider studies with sexual minorities, such as lesbian and gay (Gwednolyn et al, 2015; Margolies, 2004; Macmillan, 2013). To reduce selection bias (Shenton, 2004) and avoid data saturation, the researcher deliberately sought to include „outliers‟ usually discounted in qualitative approaches (Barbour, 1999) and utilized the processes most appropriate to this study as a starting point for education and future research. The LGBT foundation advertised the research within their weekly bulletin in June 2015 and distributed a flyer (Appendix 4) within their internal support networks. This was important to the study; in enabling the trust of participants to obtain valid data by portraying an awareness of the cultural values and practices in the population being studied (Chilisa, 2005). The researcher utilized the Community Involvement Manager at the LGBT Foundation to advertise the study across their internal and external networks. Each individual was be given a participant information sheet (Appendix 2) that provided more information about the study along with a consent form (Appendix 3).
The researcher followed up with a
telephone call one week later to offer the participant the opportunity to ask any questions (Wiles et al, 2007) and recruited 5 Tran‟s women. The small sample size was chosen deliberately to allow the researcher enough time to transcribe and
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analyse narrative from the interviews and to ensure a broad range of perceptions and experiences can be captured (Seidman, 2006).
Ethical Considerations
The researcher had the responsibility to ensure research was conducted in an ethical manner and that each individual felt safe (Corti et al, 2000). The study had to protect a participant‟s confidentiality and respect the ethical principles of beneficence, non-maleficence, fidelity, justice and veracity (Beaucamp & Childress, 2008). It was imperative that each participant understood that their involvement was participatory and they had an informed choice to withdraw from the study at any point (The Economic and Social Research Council (ESRC) 2010). This study incorporated various measures to ensure it complies with ethical requirements and the Data Protection Act 1998.
The researcher initially applied to the University‟s Ethics committee before starting to recruit participants (Appendix 1). The RE1 form was necessary to ensure each study complied with the University Code of Practice on Ethical Standards for Research Involving Human Participants. Each participant was asked to complete an informed consent form (Appendix 3) after they had been given time to read the participant information sheet (Appendix 2).
This was to ensure the participant
understood the aims, objectives, purpose and anticipated benefits of the research study to make an informed decision about whether to participate.
Gathering
informed consent illustrates the researcher‟s commitment to respecting the participant‟s autonomy (Kelman, 1977). Although the small sample size of this study cannot guarantee definitive autonomy, this was explained to the participant within the 64
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initial information leaflet and consent form (Seidman, 2006).
The World Health
Organisation (WHO) recommendations (2014) state in their „Recommended format for a Research Protocolâ€&#x; that informed consent is an important document in ensuring that the participant is explicitly made aware of what to expect from the interview, informed consent is a process during which the researcher may exchange information with the participant on a regular basis (Melnyk and Morrison-Beedy, 2012).
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Chapter 4
Data Results and Analysis
This chapter will present the data from the study and provide an analysis using a themed approach. This approach has been selected over data analysis software due to the nature of the data being collated. As this data is from a small sample and concerned with individual experiences and feelings the data analysis needed to adopt an approach that allowed the transformative researcher to focus on the depth and meaning of the data captured. Concerns regarding the use of data analysis software include increasingly deterministic and rigid processes. Furthermore, the time it would take the researcher to assess the various software packages and then feel confident in using them would create a further strain on resources (St John et al, 2000). Although the speed of handling the data and ability to re-code categories may be quicker through a computer based data management and analysis package, it would have been a greater expense to the researcher. As a novice researcher, this method could lead to other complications and errors, such as loss of data and feeling out of control (Laws et al, 2003).
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Figure 4.1 Chart to show quantitative analysis of data collection methods
Data Collection Method
20% 5% Online survey
Face-to-Face interview 75%
Telephone interview
A total of 20 Trans women participated in this study; 1 via a Semi-structured in-depth face-to-face interview, 4 via semi-structured telephone interviews and a further 15 participants through an online survey between December 2015 and February 2016. The participants were given the option of a telephone interview or face-to-face at the LGBT Foundation in Manchester City Centre for its Central location, close to transport links with confidential, comfortable counselling rooms (Shenton, 2004, Robson, 2011).
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Figure 4.2 Chart to show stage in transition of whole sample
Stage of transition across whole sample
15%
15%
5%
pre-op transitioned
20%
15%
Post op (5-9 years) Post op (10 years +)
30%
Completed minus GRS No answer provided
Although the total sample was relatively small, it was representative of the Trans population in general when we consider the challenges of trying to access them as participants due to the geographical spread of the community (Stonewall, 2015). 2 of those interviewed had an existing diagnosis of prostate cancer. However, the sample represented a broad demographic range of Tranâ€&#x;s women in terms of age, sexual orientation and stage in the transition process. The above chart shows where participants were in the various stages of their transition (table in appendix 9 provides this detail on each of the 20 participants). This study was an exploration of national experiences and 2 participants were living outside of the UK (Hong Kong and Spain). 19 participants were from white/British ethnicity and 1 African.
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Figure 4.3 Chart to show age range of whole sample
Age distribution of whole sample 75+ 60-74 45-59 30-44 18-29 0
2
4
6
8
10
The above chart shows the age distribution of the whole sample. The majority of people were aged 60-74 (9) and 45-59 (6). This is particularly relevant as current research reports the mean age of all UK prostate cancer diagnoses as 70, with an increased risk of developing the disease from 50 onwards (PCUK, 2015); 75% of the total sample was representative of this age group. Improvements in early diagnosis and treatment of cancer mean that the disease is quickly becoming a long term condition (Macmillan, 2015).
This data supports the view that with the Gender
Recognition Act (2014) giving Trans people the right to obtain legal recognition in their acquired gender, we are sure to see a new group of mature trans women with general healthcare needs for long term conditions just like the rest of society (Algeria, 2011, Gooren, 2011). This increased prevalence of Trans women aged 50 years plus, puts this group of people at risk of a variety of long term conditions such as; hypertension, obesity and diabetes. The concern is whether our health service is
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equipped to deal with the complexities that a Tran‟s woman‟s body can present (Gooren, 2011, GIRES, 2015).
Figure 4.4 Chart to show sexual orientation of whole sample
Sexual orientation of whole sample 6 5 4 3 2 1 0
The above chart shows the sexual orientation of the whole sample. Participants were a diverse mix between heterosexual/straight (5), bisexual (5) and lesbian (6). 1 participant defined themselves as pan-sexual, 2 preferred not to say and 1 selected homosexual/gay. This supported the literature where it is noted that sexuality or sexual orientation is separate to an individual‟s gender and sense of gender (Fish, 2007). The Trans population are not one homogenous group of people and future research needs to move away from including Tran‟s needs with the wider lesbian, gay and bisexual community (Margolies, 2004, Gwendolyn et al, 2015).
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0904023 Online Survey
Online survey development software called Survey Monkey was used to create the online survey and collate the responses.
A secure web link was emailed to
participants that took them straight to the survey, which included a mixture of open ended and multiple choice questions totalling 16 (appendix 8). 15 people responded to the survey, 14 were white/British and 1 African ethnicity. 2 of these were from outside the UK, and the remaining were living in UK Counties across the Country from Somerset to Lancashire. 80% of responses were from Trans women aged 4574 and in the age group most likely to be effected by prostate cancer (PCUK, 2015). No participants from this sample had a diagnosis of prostate cancer, but 5 had accessed their GP with concerns about prostate cancer and were able to share their experiences.
All 15 answered the multiple choice questions asking general
demographic information, such as age, ethnicity and sexual orientation.
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Table 4.5 – Responses to online survey question 5
Which term best represents you? didn’t answer Non-binary Woman Trans
Transsexual Tran woman
Transgender woman 0
1
2
3
4
5
When asked „What term best describes you?‟ the responses were varied; 5 participants selected „transgender woman‟ 4 selected „trans woman‟, 1 selected „Trans‟ and 1 selected „woman‟, 2 preferred transsexual, 1 didn‟t answer and no one felt non-binary was the best term to describe them. There is no correlation between age range and preferred definition, which would support the view that there appears to be no universally agreed acronym to represent this group of people, and that historically, culturally and individually preferred terms continue to alternate between people, groups and time (Fish, 2007; Age UK, 2011; Arundel, 2013; Gwendolyn et al, 2015).
When prompted to think about their personal needs and experience of cancer support and services, participants were asked to rate information they had received and elements of their experiences across the health care pathway. The next table details all responses to this question. 72
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0904023 Table 4.6 online survey responses to question 13
Thinking about your personal needs and experience of cancer support and services. How would you rate the following? Level of support offered/provided to your partner and/or family
Your aftercare experience
poor
Your Hospital experience
satisfactory
The level of Trans awareness amongst GP and primary care staff
good
The level of Trans awareness amongst healthcare staff and professionals in hospital
excellent doesn't apply
Support you received from your GP
didn’t answer
Support you received from healthcare staff and professionals in hospital Quality of information resources you were given, such as leaflets
0
2
4
6
8
10 12 14
33% of participants consistently didn‟t answer the question or rate elements of the cancer pathway in relation to their personal needs and experience. Similarly, between 2-3 participants felt some of the questions didn‟t apply. However, of those who did rate their experience of cancer support and services; 33% felt quality of information resources, such as leaflets they had been given were „poor‟. Sequentially, 45% of participants rated the level of Tran‟s awareness amongst health care staff in primary and secondary care as „poor‟.
Yet, the level of support
participants received by healthcare staff in primary and secondary care was varied; with 17% rating it as „poor‟, 14% as „satisfactory‟ and 14% as „good‟.
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Question 14 of the survey was one of the few qualitative questions to ascertain the impact of participants‟ experiences. It gave participants the opportunity for additional comments to identify other factors that are a concern for them. The responses received are below;
“I'm already afraid of hospitals and having prostate cancer would be the worst kind of nightmare and not just because of the cancer, but because of how terrified I am of being treated as male by hospital staff” (online survey response from a 30-44 year old transwoman).
“I am a retired GP , my friend died of mesothelioma recently she was a Trans woman and her experiences of Trans phobia and her end of life care we're not acceptable in the 21st century” (online survey response from a 60-74 year old transgender woman)
“I have no idea what I'm supposed to do about cancer screening with my anatomy. My GP will eventually start sending me for mammograms, but I'm not sure the idea of a woman with a prostate is something they ever think about” (online survey response from 30-44 year Tran‟s woman)
These statements and survey responses supported the literature and the reports of how Tran‟s people are disproportionately affected by discrimination, including health professionals lack of knowledge of trans specific issues, gender segregated systems and the use of gendered language (Vogel 2014, Unger 2014, Levitt, 2015). Furthermore, the statements highlighted how there is evidently aspects of current health care approaches that require further consideration and/or modification such as cancer screening (Sobralske, 2005, Levitt, 2015). 74
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0904023 Interview Findings Figure 4.7 Interviewee responses to Question 9
Prostate cancer status of interviewed participants
20%
60%
Living with Prostate Cancer
20%
Living beyond Prostate cancer No diagnosis of prostate cancer
1 face-to-face interview was conducted with 1 Tran‟s woman living with prostate cancer. 4 further telephone interviews were carried out. 3 had no diagnosis of prostate cancer, but had accessed services with concerns about the disease and one participant was living with prostate cancer. All 5 participants were white/British. 1 participant was aged 30-44 and the remaining 4 between 60-77 years old, which places 80% of those interviewed within the age group most likely to be affected by prostate cancer (PCUK, 2015).
Question 5 asked participants their gender identity? 3 said „woman‟ and 2 said „female‟. None made reference to Trans or Transgender, yet the following question asked participants what term they felt best described them from a list of; Trans woman, woman, transgender, male to female transgender, transsexual, cross
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dresser. 2 chose „woman‟, 2 chose „transwoman‟ and 1 chose „transgender‟. This variation in preferred use of terminology and definition is acknowledged throughout the literature and supports the notion that Tran‟s people are not one homogenous group of people. The data from a sample of 20 Tran‟s women illustrates the diversity within this community and how terms remain changeable on an individual/personal basis (Fish, 2007, Arundel, 2013).
Figure 4.8 Chart to show interviewee responses to question 6
Stage of transition across interviewed sample 20%
20% pre-op 20%
40%
transitioned Post op (10 years +) Completed minus GRS
Question 6 of the interview guide was a quantitative question designed to ascertain where participants were in their transition journey. Further quantitative analysis puts 2 (40%) of the participants as post op, and 1 participant (20%) as „transitioned‟, „completed minus GRS‟ and „pre-op‟. This was a good representation of transition pathway (GIRES, 2009). The table in appendix 11 includes full anonymised demographic data set for all interviewed participants. The interview method enabled
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the researcher to gather further narrative around this question and offered further insight into factors influencing where an individual was in the transition process. A 30-44 year old Tran‟s woman explained how they had been living as a woman for 22 months, and was postponing initiating and hormone therapy so that she could have children with her partner who was a Tran‟s man/male. In addition to this, a 60-77 year old Tran‟s woman, living with prostate cancer described how she was unable to have gender reassignment surgery due to the severity of risk following prostate cancer treatment:
“That‟s another point that comes into the trans-woman and prostate cancer health because nobody knew about that initially and I kept asking about it and nobody was able to tell me right until the last moment. I then found out after the treatment that I wouldn‟t be able to have gender reassignment surgery, because it would kill me.” (60-77 year old Trans woman living with prostate cancer).
A study by Levandag (1990) exposed the limited efforts to indentify the cancer health needs of Tran‟s people across the entire cancer pathway. Moreover, participant‟s responses offered further rigour to the researcher‟s rationale for including all those who seek legal recognition in their acquired gender, rather than full completion of gender reassignment surgery. Evidently, not every Tran‟s woman will choose to undergo gender reassignment surgery, but all may still want legal recognition as a woman and to live as a woman all or some of the time (Gooren, 2015). Without exception, every Tran‟s woman will still have a prostate. Prostate cancer treatment can have major implications on an individual‟s gender reassignment options, coupled with potential long term side effects, such as urinary incontinence and sexual
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dysfunction (Gooren et al, 2013). Therefore, the Trans body creates complexities for cancer services that require tailored information, guidance and support since many Tran‟s women now find themselves in an age group where prostate cancer is a concern (Weyers et al, 2009).
“….my major concern is the complete lack of understanding within oncology and neurology services of the whole transgender situation, and specifically the medical implications of the feminisation treatment we‟re receiving.” (60-77 year old Trans LWB prostate cancer)
Similarly, when the 2 participants living with and beyond prostate cancer were asked in interview to explain what information they received from their health care provider about prostate cancer, their responses were reflective of the responses received in the online survey:
“…I had to ask the locum consultant and other consultants about the effects of HRT on my prostate. They hadn‟t a clue if there were any concerns whatsoever………As another parallel, I have a friend in Bristol who is also a Trans woman who is not receiving HRT, same age and we have both been told by the same hospital independently that the staging level of PSA is 2.0. This suggests they have not taken account of whether oestradiol testosterone levels have implications on PSA levels.” (60-77 year old Trans woman LWB prostate cancer).
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“I was taking Finasteride for one thing which really means you should, effectively, as a rule of thumb double it (PSA levels). So that 3.7 should actually have shown up nearer 7.8 or whatever……..he (GP) badly let me down. In 2006 I should‟ve been checked really carefully.” (60-77 year old Trans woman LWB prostate cancer).
These responses support the issues raised throughout the literature.
Sobralske
(2005) agreed with older research reporting that the prostate gland is smaller from the effects of oestrogen.
Older research had always considered androgen
deprivation (which is caused by introducing oestrogen) as further protection against prostate cancer. However, new emerging reports and findings from this study merits re-evaluation (Van Kesteren et al, 1996, Sobralske, 2005, Gooren, 2015, Levitt, 2015).
Similarly, the treatment for prostate cancer is varied depending on the individual, stage and grade of the tumour/disease. Orchiectomy (surgical removal of testes) and hormone therapies are recommended treatments for some types of prostate cancer (PCUK, 2015). Both these treatments have a number of side effects and long term effects for any patient, which have different implications for a male and Tran‟s woman. One participant interviewed explained that the side effect from the hormone medication she had been prescribed was increased breast tissue. Something a male patient is likely to be less pleased with than a Tran‟s woman. Similarly, orchiectomy is something a Tran‟s woman may seek to have as part of their gender reassignment surgery and may want:
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“….when it came to having the orchiectomy because I actually braved myself for that and I thought it‟s actually what I want anyway………another side affect was an increase in breast tissue and something I was rather pleased about” (60-77 year old Tran‟s woman LWB prostate cancer).
Both participants interviewed, living with and beyond prostate cancer accessed information from the internet. One participant had a background in medical science, so library research in the medical world was something they felt at ease with. However, this is not the case for many Tran‟s women and the participant (even with this experience) found this a challenge.
One participant who was living with and beyond prostate cancer shared examples of good practice. Their Cancer Specialist Nurse and consultant had been a valuable support to them throughout their treatment and continue to be:
“I think she (nurse) had done some research and she was also dealing with somebody else who was identifying as Trans but at that point hadn‟t gone full-time and they‟d also got prostate cancer but they were being treated differently…..They‟re fabulous and they look after me.” (60-77 year old Tran‟s woman LWB prostate cancer)
This is inconsistent with the literature and studies where Tran‟s women had consistently reported the challenges in finding a healthcare provider who was knowledgeable about the needs of the Trans community (Grant et al 2011, Lombardi 2010, Sanchez, Sanchez and Danoff, 2009). However, efforts were made by the cancer specialist nurse to learn more about the specific cancer care needs of Tran‟s 80
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women, and supports Levitt (2015) who suggested that specific knowledge about cancer needs of a Tranâ€&#x;s woman is less common across health care staff in general.
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Chapter 5
Discussion
The case for a wider exploration into Tran‟s women‟s prostate cancer care needs went beyond simply an inclination and professional experience when the literature identified so few studies and related articles (GIRES, 2009, Levitt, 2015). Although the findings of this study cannot be considered generalisable due the small sample size, they can be considered indicative and valid in providing a starting point for future research and discourse around the prostate cancer care needs of Tran‟s women.
In general, the methodological approach used proved successful in
exploring individual‟s experiences and perceptions of prostate cancer services. Naturally participants had differing interpretations of their emotions, feelings and language, but the researcher believes that employing a transformative approach, incorporating quantitative numerical data with the narrative added validity and rigour to the research and overall findings (Holloway and Wheeler, 2010). Moreover, using the triangulation method, the researcher was able to shape and adapt the interview questions from the online survey responses and better capture the diverse experiences of the Trans women who took part (Mertens, 2007).
This chapter will present an overall discussion of both the literature and the study findings.
The data collected was analysed into basic themes. This chapter will
discuss these themes in more detail relating to the literature where relevant, and present the case for the future prostate cancer needs of Tran‟s women.
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The case for new research and re-evaluation of the current prostate cancer picture for Trans women Although the small sample size of this study posed challenges for the findings to be generalised to the wider Trans women population; the sample does represent a broad demographic range of Tran‟s women in terms of age, sexual orientation and stage in the transition process. Age distribution of the sample was broad with 10% (2 participants) of the participants living with and/or beyond a prostate cancer diagnosis. The literature consistently highlighted the lack of studies into the cancer care needs of Tran‟s people. Those LGB studies that had included Tran‟s people had tended to achieve small samples and therefore; provided limited insight into the needs of the Trans population. They had also been difficult to generalise to the wider Tran‟s population (Fish, 2007, Gwendolyn et al, 2015). Similarly, a study by Levendag (1990) revealed how there had been limited efforts to identify the cancer health needs of Tran‟s people across the entire cancer pathway from prevention, early diagnosis, treatment, survivorship and end of life. The experiences shared by the Trans women in this study would support this lack of clarity surrounding the cancer care needs of Trans Women:
“I am a retired GP, my friend died of mesothelioma (a type of cancer associated with exposure to asbestos) recently she was a Trans woman and her experiences of Trans phobia and her end of life care we're not acceptable in the 21st century” (online survey response from a 60-74 year old transgender woman)
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Both the literature and responses from this study support the case for new research and re-evaluation of the current prostate cancer picture for Tran‟s women (Levendag, 1990). Both highlight how Tran‟s people are disproportionately affected by discrimination; including health professional‟s lack of knowledge of Tran‟s specific issues, gender segregated systems and the use of gendered language (Vogel 2014, Unger 2014, Levitt, 2015).
Similarly, participant responses and the literature
highlighted how there are evidently aspects of current health care approaches that require further consideration and/or modification such as cancer screening and guidance on acceptable PSA levels for Tran‟s women taking hormone medication (Sobralske, 2005, Levitt, 2015). Although there are a number of uncertainties surrounding it, PSA testing is currently the only test that can lead to a prostate cancer diagnosis and treatment of localised prostate cancer.
According to the
Prostate Cancer risk management programme (2009) there is no evidence that the benefits of a PSA based screening programme would outweigh the harm. This could lead to a degree of ambivalence for health professionals, particularly GPs, which will be discussed as part of the theme „Education for our health care work force and Trans women‟.
Markedly prostate cancer can still develop in Trans women on hormone medication and/or after GRS. Both the literature and findings from this study support his theory and reject older theories that oestrogen therapy was guaranteed to prevent prostate cancer (Levitt, 2015, Gooren, 2015). Physiological complexities of the Tran‟s woman body, such as these create challenges for cancer services (Van Kesteren et al 1996, Sobralske 2005, Weyers et al 2008, Gooren 2015, Levitt 2015). Notwithstanding many Tran‟s women now find themselves in an age group where prostate cancer is a
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concern. The Gender Recognition Act (2014) has given trans people the right to obtain legal recognition in their acquired gender, and paves the way for a new group of mature trans women with general and specific healthcare needs just like the rest of society (Algeria, 2011, Gooren, 2011). The data from this study supports this. The mean age of the entire sample was 56 years old. Current research reports the mean age of all prostate cancer diagnoses as 70, with an increased risk of developing the disease from 50 onwards (PCUK, 2015). Therefore, the sample was representative of this age group.
Both the literature and results from this study emphasize the need for further research before a definitive answer about appropriate prostate cancer awareness, treatment and aftercare for Tran‟s women can be derived. The limited efforts to understand both the physiological complexities of the Trans woman body and the effects of hormone medication on PSA levels support Turo et al‟s (2013) suggestion for Tran‟s women to be offered routine monitoring of their PSA levels. Only then will an evidence base be available to advocate or oppose the case for routine prostate cancer screening in Tran‟s women before starting any hormone treatment to rule out signs of the disease (Turo et al, 2013 and Gooren, 2015, Morgentaler et al, 1996, Morgentaler & Rhoden, 2006). However, although the findings from this study are not generalisable, the two participants living with and beyond a prostate cancer diagnosis may have been diagnosed sooner if this approach had been a standard approach/procedure.
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Granted, what the literature and the responses from this study have indentified is that routine prostate cancer screening for Tran‟s people may require a modified approach (Levitt, 2015). Digital examination (Gooren et al, 2014) and the reduction of testosterone (which is a consequence of hormone therapy) in Trans women has been linked to a risk of a positive prostate biopsy and an increased PSA level (Morgentaler et al, 1996). Gooren (2014) makes recommendations of acceptable PSA levels for Tran‟s women on hormone medication; that any PSA level greater than 1.0 ng/ml should be further investigated (PCUK suggest „normal‟ PSA level for men aged 50-59 years as 3ng/ml). Similarly, some evidence suggested that low testosterone levels have been related to poorer prognosis in men with prostate cancer prior to treatment (Garcia-Cruz et al, 2012, Hoffman et al, 2000). What all studies acknowledge and this study supports is that recommendations and thresholds need revising and ongoing monitoring with the availability of new evidence.
Gender Identity monitoring as common practice in the UK health service In the UK, the cancer story is changing. Currently it is estimated that 2.5 million people are living with or beyond cancer in the UK (Macmillan Cancer Support & Public Health England’s National Cancer Intelligence Network (NCIN), 2015). The new National Cancer Strategy for England 2015-2020 published by the Independent Cancer Taskforce in 2015 highlights that “The number of people diagnosed and living with cancer each year will continue to grow rapidly”. Our national population is ageing, living longer and more advanced cancer treatments mean that cancer is fast becoming a long term condition. By 2030, local cancer intelligence estimates that
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this will rise to 4 million people (Macmillan Cancer Support & Public Health England’s National Cancer Intelligence Network (NCIN), 2015). Cancer incidence rates amongst the Trans community are largely unknown (GIRES, 2009, Levitt, 2015). Transgender people remain difficult to count, as many have and will not reveal their gender variance to their GP or seek medical treatment (GIRES, 2009). The Gender Variance report by GIRES (2009) emphasised the need for policy makers to be aware of the uneven demographic dispersion of Tran‟s people in the UK. Prevalence is reported to vary by some 35 per 100,000 across the country with no general correlation between population density and incidence of gender dysphoria. That said, GIRES (2013) estimated that 1% of the UK population has experienced some degree of gender non-conformity, but most remain invisible. Yet the Office of National Statistics (ONS) do not produce estimates of the number of transgender people living in the UK (ONS, 2009), nor does the NHS ask for this information as part of the Patient Experience Survey, National Cancer Patient Survey or on a local General Practice level. It is therefore difficult to surmise exactly how many Tran‟s women will be accessing our health services with long term conditions in its entirety. However, using Cancer Research UKs statistic that 1 in 3 people are diagnosed with cancer every year (CRUK, 2014), together with currently available statistics, one could estimate that by 2030 over 13,000 trans people could be living with and beyond cancer.
This data and intelligence could provide cancer commissioners and policy makers with the information to build and plan appropriate prostate cancer services for Tran‟s women from prevention through to LWBC. Sequentially, Transgender population data could inform education and training content aimed at health and social care 87
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staff in Tran‟s awareness and ensure it accurately reflects the health and social care needs of this group. When all participants in this study were asked what term they felt best defined them; the responses showed no correlation between age range, stage in transition or sexual orientation. This would support the view that there appears to be no universally agreed acronym to represent this group of people, and that historically, culturally and individually preferred terms continue to alternate between people, groups and time (Fish, 2007; Age UK, 2011; Arundel, 2013; Gwendolyn et al, 2015). For these reasons, both the literature and study findings support the need for further research with Tran‟s people and for gender Identity monitoring to be introduced as common practice in the UK health service.
Education for our health care work force and Trans women This study was small, but nevertheless yields lessons that may be important to in the development of educational programmes for health care staff and Trans women about prostate cancer. Analysis of the data identified a meta-theme around the need for education.
Not education for health professionals in isolation, but for Tran‟s
women on prostate cancer awareness, signs and symptoms.
An online survey
response from one participant highlighted how the complexities of a Tran‟s women body have misconceptions for Tran‟s women and health professionals alike. It would be accurate to suggest that living in a mixed gender body creates challenges for Tran‟s women in understanding cancer screening and which programme applies to their body.
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“I have no idea what I'm supposed to do about cancer screening with my anatomy. My GP will eventually start sending me for mammograms, but I'm not sure the idea of a woman with a prostate is something they ever think about” (online survey response from 30-44 year Tran‟s woman)
Half of the 6,500 respondents to the National Transgender Discrimination Survey (Grant et al, 2011) reported having to teach their healthcare providers about transgender care. This is not appropriate in today‟s society and any education needs to facilitate a cultural shift amongst NHS staff, GPs and Royal Colleges and raise awareness for all around treatment for Trans and non-binary people (NHS, 2015). Further to this, Levendag‟s (1990) study in particular revealed that there had been limited efforts to identify the cancer health needs of Tran‟s people across the entire cancer pathway from prevention, early diagnosis, treatment, survivorship and end of life. This lack of academic insight, together with the unique challenges of the Tran‟s women‟s anatomy and the fact that Tran‟s people are becoming more visible in society (Algeria 2011) substantiates the need for education, training and information for Tran‟s women about prostate cancer.
The Gender Recognition Act (2014) has paved the way for a new group of mature Trans women with general and specific healthcare needs just like the rest of society (Algeria 2011, Gooren 2011). In addition to prostate cancer education for Tran‟s women, we need to support our health and social care work force to ensure they are able to cope with increasing numbers of Tran‟s women and their health needs.
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The respondents in this study endorsed Levitt (2015), who stated that finding a healthcare worker or provider with knowledge about the cancer needs of a Tran‟s woman is uncommon; 45% of participants rated the level of Tran‟s awareness amongst health care staff in primary and secondary care as „poor‟. Sequentially, almost half (47%) of those who responded to the UKs Government Equalities Office Transgender Survey (2011) thought awareness-raising of transgender issues (including the reassignment process itself) is more important to GPs; and ignorance was the most important factor contributing to challenges accessing services. Therefore, if it is difficult to find professionals who understand Trans needs in general health care, then it is likely to be even more difficult to find health professionals who are aware of the needs of Trans people in relation to cancer services (Fish, 2007, Rondahl, 2009, Sanchez, Sanchez and Danoff, 2009, Alegria, 2011).
There needs to be an acknowledgement nationally that health professional‟s require generic Tran‟s awareness training and education.
Respondents from this study
support the suggestion that Tran‟s people are disproportionately affected by discrimination; including health professionals lack of knowledge of Trans specific issues, gender segregated systems and the use of gendered language (Vogel 2014, Unger 2014, Levitt, 2015):
“I am a retired GP , my friend died of mesothelioma recently she was a Trans woman and her experiences of Trans phobia and her end of life care we're not acceptable in the 21st century” (online survey response from a 60-74 year old transgender woman)
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“I'm already afraid of hospitals and having prostate cancer would be the worst kind of nightmare and not just because of the cancer, but because of how terrified I am of being treated as male by hospital staff” (online survey response from a 30-44 year old transwoman).
These statements illustrate that aspects of our current health care approaches, including education and training, require further consideration and/or modification (Sobralske, 2005, Levitt, 2015).
In summary, both the findings from this study and literature have the potential to create new discourse, raising awareness, and highlighting where there remain gaps in meeting Tran‟s women‟s prostate cancer needs.
The following chapter will
conclude this research study and recommend what improvements should be made to support Tran‟s women with prostate cancer.
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Chapter 6
Conclusion and Recommendations
This research study has examined the experiences that 20 Tran‟s women have had of prostate cancer services in the UK from prevention and awareness through to diagnosis and living with and beyond. The study concludes that complexities of the Trans woman body together with the lack of clarity surrounding the risk of, and treatment for prostate cancer in Tran‟s women contribute to the case for our cancer services to change. New investment in future research is an essential part of this change and would act as the conduit for system based approach to change within our health and social care services. This research has demonstrated where there are significant gaps in the current system for prostate cancer information and support for Tran‟s women. Based upon the findings of this mixed method study and the literature, it is recommended that: 1. Our health and social care commissioners and providers need to evaluate how they are currently engaging with Trans people.
Effective patient
engagement is fundamental to identify the specific issues related to both the experience of cancer for Tran‟s people and also around clinical outcomes, where their status as a Tran‟s person might have implications during their acute treatment.
2. We need better monitoring of gender variance in the UK. Realistically, gender identity monitoring at a national level through the national NHS cancer patient survey and patient experience survey may be some years away. However, 92
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gender identity monitoring could be introduced via a bottom up approach at a local level through existing general practice systems.
This data and
intelligence of the Trans population would provide local commissioners and services with a clearer picture and assess where and how local cancer services need to change for Tran‟s women.
3. Similarly, regional level scoping of what, if any, priorities within CCGs include supporting Tran‟s patients affected by cancer would be the start of a gap analysis. Scoping at a regional level within existing cancer networks would create opportunities for collaboration, joint commissioning and pooled resource that are sympathetic to existing health system constraints and challenges outlined in recent strategies by the Cancer Taskforce and NHS Five Year Forward View.
4. Services take steps to ensure new „cultural competency‟ of Tran‟s people‟s needs across our work force. Integral to building new and improving existing services for any group of people is „cultural competency‟ amongst its‟ workforce (Roehr, 2015).
Our cancer health and social care work force
require education and training in Tran‟s awareness and the specific cancer needs of Trans people. The UK‟s current health and social care system is under financial pressure to deliver existing services with significant cuts to funding. Services and infrastructure are devolving; primary and secondary care have and continue to be effected by lack of capacity within the workforce and time to participate in mandatory training and education.
However,
education into Tran‟s awareness and cancer related issues can be embedded
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into existing training platforms and packages such as e-learning web based packages/modules and/or as part of an existing taught module around equality and patient choice.
These „add ins‟ need to be developed in
consultation with Tran‟s patient groups and evidence to ensure robustness and accuracy.
5. Investment into better prostate cancer information and resources for Tran‟s women. We know from the literature and research findings that oestrogen therapy is not guaranteed to prevent prostate cancer (Levitt, 2015, Gooren, 2015). Evidently, prostate cancer can still develop in Trans women after GRS. Moreover, with a mean age at diagnosis of 70 years old, the risk of developing the disease increasing after 50 and the trans population being an aging community like the rest of society; there is a need for educating trans women and health care professionals on these key facts. Wider recognition of this issue is required by key cancer partners and charities.
Resources and
information for Trans women educating them on the key facts about prostate cancer risks, signs, symptoms and support need to be developed by trusted, reputable sources just like the rest of the population and other marginalised groups.
6. Investment into new research.
A key recommendation from a 2015 NHS
report into transgender health was the need for the NHS to acknowledge the systemic inequalities experienced by Trans and non-binary people, and to commission and publish research on how to tackle this; Cancer screening was used as an example of how existing cancer screening protocols are
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excluding trans people because the process of inclusion is based on a male and/or female gender marker (NHS, 2015). In addition to this, there is so little evidence and research with Tran‟s women about prostate cancer and UK cancer charities and services require evidence before generating new or investing in changes to information, resources and services. New emerging reports of prostate cancer in Tran‟s women clearly merit re-evaluation (Van Kesteren et al, 1996, Sobralske, 2005, Gooren, 2015, Levitt, 2015). Suggestions that Tran‟s women should be offered routine monitoring of their prostate-specific antigen (PSA) levels and/or prostate cancer screening in before starting hormone treatment to rule out signs of the disease (Turo et al, 2013 and Gooren, 2015, Morgentaler et al, 1996, Morgentaler & Rhoden, 2006) can‟t be answered in completeness without new research. We know from the literature and study findings that the reduction of testosterone (which is a consequence of hormone therapy in Tran‟s women) has been linked to a risk of a positive prostate biopsy and an increased PSA level (Morgentaler et al, 1996). Therefore, National cancer research bodies need to invest in new quantitative and qualitative research into prostate cancer amongst Tran‟s women.
7. Sequentially, the development of a national database of Tran‟s women living with prostate cancer (with appropriate ethical and confidentiality controls) should be developed and made available for other researchers considering a more medical approach/research into the effects of female hormones on the prostate.
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guidelines for acceptable PSA levels in Tran‟s women based on age and combination of female hormone medication. This research study has already generated interest and started conversations about the distinct needs of the Trans women community for prostate cancer information, support and services.
A number of higher educational institutions have been in
touch with the researcher who has agreed to share the findings from this study with undergraduate clinical and non-clinical health and social care students as part of existing academic modules. The LGBT Foundation will be hosting their first annual study day in July 2016. „Cancer doesn‟t do labels‟ will be a full day event for health professionals made up of a series of workshops focussing on the different types of cancers and the cancer pathway . Tran‟s people affected by cancer will be involved in the workshops and key to facilitating the activities. The researcher will be leading the workshop for Prostate Cancer.
The event aims to provide opportunity for
effective patient engagement that will be fundamental to shaping the priorities of the LGBT Cancer Support Alliance for 2016-2017. The researcher is also in the process of working in collaboration with the LGBT Foundation to develop a good practice guide for researchers looking to embark on a research study with Tran‟s people. The researcher is hopeful that discourse around this topic will continue to evolve and shape new and existing priorities to develop prostate cancer services in the UK.
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0904023 Williams
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http://www.stop-homophobia.com/pansexuality.html
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Appendices
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Appendix 1 – Literature Search Strategy Table 1 – Search Strategy Database Key Search Term Discover@Bolton (ProQuest, 1 including ProQuest Gender reassignment Central. All Ebsco Transgender databases, Cancer including CINAHL. ScienceDirect, Scopus, Taylor and Francis online, Wiley Interscience, 2 Credo, Oxford Male to female Reference Online, Transgender Royal College of Prostate cancer Nursing Journals Sage Journals, Medline, PubMed,Embase) 3 1&2
4 1&2& Cancer care
117
Limits 2000-2016 English language only
Results 2,264
Comments Majority of articles were of gender reassignment & LGBT (but not enough focus on Trans specific needs) Those relating to cancer were not specific to Transgender and/or prostate cancer
2000-2016 English language only
2,003
Not specific to UK population As above, so further limitations applied to subject area (see 3.) Not specific to UK population Lots of articles on LGBT (but not enough focus on Trans specific needs)
2000-2016 English Language only Subject area limitations applied: Medicine Psychology Social welfare Public health Sociology Nursing Education sciences 2006-2016 English language only
1,432
Majority of text focus on cancer and transgender in isolation Not specific to UK population Lots of articles on LGBT (but not enough focus on Trans specific needs)
199
Not specific to UK population Lots of articles on LGBT (but not enough focus on Trans specific needs)
Date of submission: 10th June 2016
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5 4& Gender identity Gender studies
2006-2016 English language only
2006-2016 English language only Transgender Gender reassignment Prostate cancer Patient experience As above & Full text online only 6 with further exclusions 8. 2006-2016 7 with additional subject English Language only limitations: Full text online Cancer Cancer patient
317
9. Trans women Trans female Prostate cancer Patient experience 10. Transgender Cancer Cancer care 11. 9 & 10
Lots of articles on gender dysphoria only Not specific to UK population Lots of articles on LGBT (but not enough focus on Trans specific needs)
6 7.
118
301
Lots of articles listed unavailable in full text Not specific to UK population
47
Some not cancer specific. focussing on sexual health
Too many
6
2 relevant articles. Too recent for full publication to be available via database/University system. Inter-library loan request submitted for full publication
2006-2016 English Language only
128
Not specific to UK population
2006-2016 English Language only
4,886
2006-2016 English Language only
214
Lots on breast and cervical cancer in Trans male patients. A significant number of papers on HIV and AIDS Not specific to UK population Further subject limitations applied. See below
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12. 2006-2016 11 with subject term English Language only limitations: Cancer Transgender Transgender people Transgender persons Transexuals Transexuality Transexualism Health 13. 2006-2016 English Language only 7 & 12
198
Picked up lots of articles about „Trans‟ fats Not specific to UK population
21
Excluded articles that included: Female – to- Male transgender health issues HIV/AIDS Female only cancers Sexual health focus Where main focus was on LGBT (but not enough focus on Trans specific needs) This search did identify one article which highlights the psychosocial and physical effects of gender reassignment. This article is useful for rationale for choosing study design (telephone, face-to-face or on-line survey)
119
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Appendix 2 – Selected Papers Author 1. Macmillan Cancer Support
Year & Location October 2013
–
Title of Article
Journal Details
Description
Purpose
The Emerging Picture on LGBT People with Cancer
A4 booklet report
A collation of the key available evidence about the numbers, needs and experiences of people affected by cancer
Overview of LGBT cancer data (not prostate cancer or Trans women specific) to support context
No one Overlooked – experiences of LGBT people affected by Cancer The Route to Success in End of Life Care – achieving quality for lesbian, gay, bisexual and Trans People Prostate Cancer Awareness Survey
A4 booklet report
Unpublished review/manuscript
Review of prostate cancer resources for Gay, bisexual and Trans people Provides clarity around the PHOF and where they relate to Trans Specific to North West England
Provides rationale for developing prostate cancer resources for specific needs of G,B and Trans Provide additional guidance to commissioners of health care services
2. Macmillan Cancer Support
2012 London
3. Macmillan Cancer Support
2012-London
4. LGBT Cancer Support Alliance and ScholarOne Manuscripts
2015
5. LGF Foundation
2013
LGB&T Public Health Outcomes Framework Companion Document
A4 report/review
6. LGF Foundation
2009
Breaking the Cycle: Supporting the Delivery of sustainable lesbian, gay, bisexual and trans sector in the North West Region
A4 report
120
Key Contributions
Date of submission: 10th June 2016
0904023 7. Department of Health – written by Julie Fish
2007
Tran‟s People‟s Health
Briefing for health and social care staff
8. Susan Pillet
2011-USA
Don‟t ask, don‟t tell? The Unique Needs of GLBT Patients with Cancer
Leaflet
9. Jenny-Anne Bishop, TransForum, supported by the LGF Foundation
2013
Trans Patients‟ experiences of their GP surgery- annual survey 2013
Survey & Recommendations
10. The National LGB&T Partnership
2012
The Adult Social Care Outcomes Framework: Lesbian, Gay, Bisexual and Trans companion Document
Companion document to the NHS Outcomes Framework
11. GIRES
2009
Report
12. Turo, Jallad, Prescott, Cross
2013 – UK
13. Roehr
2015 America
Gender variance in the UK: Prevalence, incidence, growth and geographic distribution Metastatic Prostate Cancer in transsexual diagnosed after 3 decades of estrogen therapy Comfortable in their own bodies: the rise of transgender care
121
-
Journal Article
Journal Article
Briefing paper written as part of the DoH sexual orientation and gender identity advisory groups work programme provides information on the needs of GLBT people with cancer in the U.S Designed to gather information about Trans patients experiences accessing healthcare services from their GP Aims to assist commissioners to respond to their duties to reduce health inequalities in the LGBT community Demographic report on gender variance within trans community Case report
Educate and inform health and social care staff on the needs of Tran‟s people and the prejudice they face across society Makes some valid points
Not specific to cancer, but provides valuable insight and starting point for discussion
Inform the work necessary to insure that GPs are better equipped to recognise and meet the needs of Trans people Brings together existing evidence on the care and support needs of LGBT
Good demographic responders
Feature article in BMJ
Greater numbers of transgender people seeking care for
Highlights types and levels of discrimination Discusses incidence
Not specific to UK
of
Highlights the incomplete picture
Date of submission: 10th June 2016
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gender dysphoria 14. Sobralske
2005 America
-
Primary care needs of patients who have undergone gender reassignment
Journal Article
15. Gwendolyn, Quinn, Sanchez, Sutton, Vadaparampil, Giang, Nguyen, Green, Kanestsky, Schabath 16. Gooren & Morgentaler
2015 Canada
–
Cancer and lesbian, gay, bisexual and transgender/transsexual, and queer/questioning (LGBTQ) populations
Journal Article
2014
Prostate cancer incidence in orchidectomised maleto-female transsexual persons treated with oestrogns
Journal Article
17. Levitt
2015
Journal Article
18. Algeria
2011
Clinical Nursing for Transgender patients with cancer Transgender identity and health care: implications for psychosocial and physical evaluation
19. Margolies
2014
Journal article
20. Weyers, Decaestecker, Vertraelen, Monstrey,
2009
The psychosocial needs of lesbian, gay, bisexual or transgender patients with cancer Clinical transvaginal sonographic evaluation of the prostate in transsexual women
122
Educational paper
Journal article
Journal article to inform practitioners about the primary care needs of trans patients Literature review
Education/information paper
Systematic review & cohort study
Investigate incidence of PCa
Literature review on seven cancer sites that may disproportionately affect LGBT
Paper to educate nurse practitioners on definitions and social influences relating to trans gender Paper to educate oncology nurses
Cohort study to assess feasibility and diagnostic performance of
Highlights need for further research and review of current guidelines for the treatment and care of trans women with PCa
Not enough focus on trans needs in isolation Makes some strong finings and valid recommendations
Medically focussed
Date of submission: 10th June 2016
0904023 Tâ€&#x;Sjoen, Gerris, Hoebeke, Villiers
21. Wasserbug, Gray, Barbara, Trosztmer, Raj, Sinding
123
2007
Experiences transwoman hormone therapy
of with
Journal article
prostate examination through transvaginal palpation and tranvaginal ultrasound Article to describe the experiences of transwoman on hormone treatment
Small cohort indicative of barriers trans women face in participating in research/studies
Small cohort (12)
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Appendix 3 - RE1 Ethics Checklist (RE1)
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Appendix 4 – Participant Information Sheet
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0904023 Participant Information Sheet
23 November 2015 VOLUNTARY
You are being invited to take part in a study. Before you decide whether or not to take part, it is important for you to understand why the study is being done and what it will involve. Please take the time to read the following information carefully. What is this study about? The researcher wants to find out about the experiences of Trans women accessing prostate cancer services, and the impact these experiences may have had on their health and well-being and/or quality of life. Why have I been invited to take part? You are being asked to take part because you identify as a Tran‟s woman. There is little information and resource available about the specific health and social care needs of Trans women. The researcher would like to build this knowledge and an evidence base that can be used to inform future research and develop a set of recommendations for cancer services and health professionals. Do I have to take part? NO - It is up to you to decide whether or not to take part, taking part is voluntary. If you do decide to take part you will be given this information sheet to keep and be asked to sign a consent form. If you decide to take part you are still free to withdraw at any time and without giving a reason. If you have completed the questionnaire or interview and later decide you want to withdraw, you are can request your data to be withdrawn from the study by contacting the researcher. Are you eligible to take part? There are three ways to take part in this study. The table below details whether you are eligible: Questionnaire
Interview (face to face, or by telephone)
Be 18+ years old Be a Tran‟s woman Have access to email and internet Live in the United Kingdom Have accessed a health service for concerns regarding prostate cancer Have or have had a diagnosis of prostate cancer
Be 18+ years old Be a Tran‟s woman Have access to a telephone or be prepared to travel to central Manchester Have accessed a health service for concerns regarding prostate cancer Have or have had a diagnosis of prostate cancer
If require a translator, then unfortunately you cannot take part in the project. What would I have to do?
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If you agree to help with this study, and are eligible to take part then you will be asked to either complete the online questionnaire, meet the researcher for an interview or to have an interview by telephone – this will be your choice. The questionnaire will be an online survey and the link will be emailed to you with instructions on how to complete and how and when to return the questionnaire. The questions will be multiple-choice and ask you some generic information about your age and ethnicity, followed by more specific questions about you as a Trans woman. The interview will last about 60 minutes and will be recorded. During the interview the researcher will ask you about your experiences of prostate cancer services. They may use direct quotes from the conversation in their final report, but they will not be linked to your name in any way. You have the choice to do the interview by telephone or in person at the LGBT Foundation, Richmond Street, Manchester. The researcher will discuss these options and provide you with any information. Who are funding and sponsoring the study? The researcher is self funding this study as their final dissertation for their MSc Public Health Practice. LGBT Foundation and LGBT Cancer Support Alliance are fully supportive of this study. This study has been reviewed by the University of Bolton‟s ethics committee and has full ethics approval. What will happen to the data? All the information that is collected will be anonymous and kept strictly confidential. The researcher will allocate each participant with a unique ID so that they can track your progress. A document with your name and associated unique ID will be stored on the researchers secure work laptop with password protection. The researcher will ask you not to disclose your name and that of other people during the interviews. They also ask that you do not disclose any identifying information regarding people you may know. The researcher will transcribe the interview and will not divulge the contents of the interview except to parties identified and agreed to complete the work. Whilst anonymised quotes will be used in the final report or publications produced, these will not be directly attributable to any individual. Transcriptions of the interviews will be shared with the researcher‟s academic supervisor at the University of Bolton. Any information shared will be done securely via encrypted and password protected electronic files. What happens to the information that is collected? All the data will be kept secure in a lockable filing cabinet at the researcher‟s home, and on password protected files on their personal Laptop, and destroyed at the end of the project. All data will be kept for a minimum of 5 years in line with the University‟s ethical guidelines and will then be destroyed The information you provide will be analysed; and findings will aim to shape the evidence base with regard to the needs of the Tran‟s women population, accessible information, treatment options and support related to prevention, treatment and living with and beyond their prostate cancer diagnosis. 135
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A set of recommendations will be developed to provide a starting point for future research about the healthcare needs of the Tranâ€&#x;s women community; and document some of the specific health care needs of this community that would lead to policy changes and educating service providers and commissioners. What will happen/be discussed in the interview? The Researcher will ask you a series of open questions about your cancer diagnosis and experiences of prostate cancer services. Followed by questions to explore the impact these experiences have had on you. There will be between 5-8 participants being interviewed as part of this research. Will there be a break? The researcher will ensure there is the opportunity to stop for a toilet break at any time if you require. How will I get to the venue for the interview (Face-to-face only)? The LGBT Foundation is allowing use of their private counselling rooms for these interviews. The building is situated on Richmond Street in central Manchester close to Piccadilly and Oxford Road Station. The researcher will liaise with you to arrange a date and time most suitable and provide directions on how to get there. If at any point you would prefer to take part in a telephone interview, the researcher is happy to arrange this with you. What are the benefits to me for taking part in this study? There are probably no direct benefits to you from taking part in this study, but the aim is to begin to build an evidence base that will highlight the disproportionate health inequalities experienced by the Tranâ€&#x;s women community as a whole; and inform the future of cancer resources and services for the transgender community. What are the risks to me from taking part in this study? Some people might get distressed talking about cancer. If any concerns or issues emerge as a result of your engagement with this study, please contact the researcher in the first instance using the contact details provided below. You can get further information about cancer from http://www.cancerresearchuk.org/cancer-help/ or support from the LGBT Foundation from http://www.lgbt.foundation.org or telephoning 03453 30 30 30. What if I want to make a complaint or have concerns about how the study is run? If you have a concern about any aspect of this study, you should ask to speak to the researcher who will do their best to answer your questions. If they are unable to resolve your concern or you wish to make a complaint regarding the study, please contact Dr Martina Kirlew, Lecturer in Health University of Bolton Room T3-36, Eagle Tower 136
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Bolton BL3 5AB Email mk2@bolton.ac.uk Tel. No. 01204 903782
What do I do next? It is important to reiterate that taking part is completely voluntary but I would really appreciate your help. If you would like to participate please return the Consent to Contact Form via the email address below or using the prepaid envelope provided, and the researcher will be in contact with you to explain the project further and make the necessary arrangements. Thank you for taking the time to read this information sheet. If you would like further information on this project please contact the researcher on Natalie.williams@cancer.org.uk or 07983 866 363 Natalie Williams Tel: 07983 866 363 Email: Natalie.williams@cancer.org.uk
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Appendix 5 – Informed Consent Form
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VOLUNTARY Consent Form to participate in a qualitative study to explore the experiences of transgender women living with and beyond prostate cancer of prostate cancer services This consent form will be used at the interviews Consent Form Please initial the appropriate boxes I have read and understood the Participant Information dated I have been given the opportunity to ask questions which have been answered to my satisfaction about the project. I understand that the interviews will be recorded by audio equipment. I understand that my taking part is voluntary; I can withdraw from the study at any time and I will not be asked any questions about why I no longer want to take part. I understand that researchers may use my words in publications, reports, web pages, and other outputs but my details will be anonymized. I understand that relevant sections of data collected during the study may be looked at by responsible individuals from the University of Bolton, from regulatory authorities or from the LGBT Project Worker, where it is relevant to my taking part in the research. I give permission for these individuals to have access to this data. I understand that any direct quotations will be anonymized to be used in publications. I understand that the interviews are confidential and that I must not talk about the people and/or subjects discussed in the interviews with other people. I agree to take part in the project.
Participant Date
Print Name
Signature
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Researcher
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Appendix 6 – Recruitment Flyer
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Appendix 7 – Interview Guide
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Interview guide Interview Guide Introduction:
Welcome the interviewee and thank them for agreeing to take part. Seat the interviewee and put them at ease, offer them refreshments Check that the interviewee is ready to begin
My name is... I work for Cancer Research UK as a Primary Care Facilitator and am a member of the LGBT Cancer Support Alliance. I have previously worked for the Strategic Clinical Network in the Greater Manchester Cancer Team. I am self funding this study for my final year MSc dissertation. The purpose of this interview is to find out about you and your experiences of prostate cancer healthcare services from your GP, diagnosis, treatment and living with and beyond prostate cancer; and the impact your experiences have had on you, your quality of life and health and well-being. To make sure I catch everything you say I would like to record the interview – is that ok with you? I will keep these recordings so I can refer back to your answers but they will not be linked to your name. The data I collect from you will remain completely anonymous and confidential. We ask that once recording you do not disclose the names of other people during the interviews. We also ask that you do not disclose any identifying information regarding patients or clients, or voice any professional concerns about other staff members, either internal or external to your organisation When all interviews have been transcribed, the data will be shared with the researcher. I will not disclose any of your personal details. It should take no more than 60 minutes but this will depend on how much you have to say. Because the interviews will be recorded, I will ask you to state your name at the start of the interview to assist the transcribers in identifying you. As far as possible, if we can try to ensure that only 1 person talks at a time & speaks clearly, this will enable me to achieve better transcription results. Is there anything you would like to ask before we begin? 1. Can you first tell me your name and age? 2. What is your ethnicity? 3. What is your sexuality? o Heterosexual o Homosexual/gay o Lesbian o Bisexual o other The next few questions are more specific about being Transgender. 4. What is your gender identity? 5. Which term do you think best describes you? o Trans woman 143
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o Woman o Transgender o Male to female transgender o Transsexual o Cross dresser 6. Where are you in your transition? o Be prepared to clarify. „By transition I mean the process of adopting a social and personal identity that meets your own sense your gender. This may or may not include medical intervention, such as hormone treatment, surgery, etc. changes in legal documents (name and/or sex indicated on identification, birth certificate, etc.), and personal expression (clothing, accessories, voice, body language). 7. How long have you been living as a woman? 8. How much of your time do you live as a woman? (this will only be relevant question to ask for those participants who are at the start of their transition) The next few questions relate to you experiences of prostate cancer and cancer services. 9. Do you currently have a diagnosis of prostate cancer? (If yes, continue. If no skip to next question) o Where are you in your cancer care pathway? o Were you diagnosed before your transition? o Have you accessed any prostate cancer services as a woman? If yes, move to next question. If no, ask them to explain why this is? o Could you explain in as much detail as possible your experiences of those services and health professionals you met? 10. Have you ever had concerns about prostate cancer that has resulted in you accessing your GP or a cancer information and support service? o Can you please tell me about that/those experiences?
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Could you explain to me the impact your experiences have had/had on you?
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Appendix 8 – Online Survey
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Appendix 9 – Table showing demographic quantitative data analysis of complete sample
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Participant
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County of residence
Age range
Ethnicity
Sexual orientation
Gender definition
Stage of transition
Past or current Diagnosis of prostate cancer
1
Hong Kong
60-74
English/ Welsh/ Scottish /Northern Irish/British
Bisexual
Transgender woman
Post-op (10 years +)
No
2
England
60-74
English/ Welsh/ Scottish /Northern Irish/British
Bisexual
Transgender woman
Transitioned
No
3
Wales
30-44
English/ Welsh/ Scottish /Northern Irish/British
Lesbian woman
Trans woman
No
4
UK
45-59
English/ Welsh/ Scottish /Northern Irish/British
Heterosexual/straight
Transsexual
Completed minus GRS Full GRS in July-16
5
UK
30-44
African
Lesbian woman
Trans woman
Post op (5-9 years)
No
6
UK
45-59
English/ Welsh/ Scottish /Northern Irish/British
Heterosexual woman
Transgender woman
No answer given
No
7
UK
45-59
English/ Welsh/ Scottish /Northern Irish/British
Lesbian woman
Transsexual
Post op (5-9 years)
No
8
45-59
English/ Welsh/ Scottish /Northern Irish/British
Asexual
Trans woman
45-59
English/ Welsh/ Scottish /Northern Irish/British
Bisexual
Trans woman
10
Herefordshire
60-74
English/ Welsh/ Scottish /Northern Irish/British
Heterosexual/straight
Trans
Completed minus GRS Completed minus GRS No answer given
No
9
South Gloucester UK
11
Spain
60-74
English/ Welsh/ Scottish /Northern Irish/British
Bisexual
Transgender
Post op (5-9 years)
No
12
Dorset
49-55
English/ Welsh/ Scottish /Northern Irish/British
Lesbian woman
Trans woman
Post op (10 years +)
No
13
Wales
60-74
English/ Welsh/ Scottish /Northern Irish/British
Gay
Trans woman
Post op (10 years +)
No
14
UK
18-29
Any other white background („other‟ not specified)
Heterosexual/straight
No answer given
No answer given
No answer given
15
Lancashire
60-74
English/ Welsh/ Scottish /Northern Irish/British
Heterosexual/straight
Woman
Post op (10 years +)
No
16
30-44
English/ Welsh/ Scottish /Northern Irish/British
Bisexual
Trans woman
Pre-op
No
17
County Antrim Somerset
60-74
English/ Welsh/ Scottish /Northern Irish/British
Lesbian
Woman
Post op (10 years +)
No
18
Midlands
75+
English/ Welsh/ Scottish /Northern Irish/British
Lesbian
Transgender
Pre-op
Yes
19
Midlands
60-74
English/ Welsh/ Scottish /Northern Irish/British
Pan-sexual
Trans woman
Yes
20
Somerset
60-74
English/ Welsh/ Scottish /Northern Irish/British
No answer given
Woman
Transitioned as far as possible (cancer treatment prevented full GRS) Post-op (10 years +)
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No
No No
No
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Appendix 10 – Interview data
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Participant
1
2
3
4
5
Interview method
Telephone
telephone
Face-to-face
telephone
telephone
County of residence
County Antrim
Somerset
Midlands
Midlands
Somerset
Age
30-44
60-74
75+
60-74
60-74
Ethnicity
White/British
White/British
White/British
White/British
White/British
Sexual orientation
Bisexual
lesbian
lesbian
Pan-sexual
Lesbian
How would you describe your gender Preferred term
Pre-op trans woman
Woman
female
female
woman
Trans woman
Woman
Transgender or transsexual „pronoun – she‟
transwoman
woman
Point in transition
Coming up to 2 years living as a woman (no legal recognition). In relationship with trans man. Not starting HRT as want to have children first 22 months
11 years post op. Full GRS 11 years ago in Thai Land
Awaiting GRS
HRT – can‟t have neo-Vagina surgery due to long term effects of cancer treatment
Several years post op
Post op (10 years +)
Post op (5-9 years)
Post op (10 years +)
Post op (10 years +)
No
Yes
Yes
No
NA
No. Father died at 63 with PaCa so this is a concern NA
Surveillance
Living with on medication
NA
NA
NA
yes
No
NA
pathway
of
How long have you been living as a woman? Current prostate Ca diagnosis Where are you in your Ca care pathway? Were you diagnosed before your transition?
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