Oncology Essentials
Ellen R. Carr, RN, M S N , AO CN® — A sso ciate E ditor
The Psychosocial Needs o f Lesbian, Gay, Bisexual, or Transgender Patients W ith Cancer Liz M argo lie s, LCSW
Because o f d iscrim in a tio n and secrecy, lesbian, gay, bisexual, and tra n sge n de r (LGBT) people have poo re r health outcom es, w hich include an increased risk fo r certain cancers and a d d itio n a l challenges in cancer tre a tm e n t and su rvivorsh ip . The o n co lo g y nurse also should be aw a re o f issues o f LGBT se xua lity and th e im p a c t th a t o n co lo gy tre a t m e n t m ay have on th e LGBT p a tie n t's im m e diate and lo n g -te rm sexual fu n c tio n in g . Liz M a rg o lie s , LCSW , is th e f o u n d e r a n d e x e c u tiv e d ir e c to r o f th e N a tio n a l LGBT C a n c e r N e tw o r k in N e w Y ork, NY. T he a u th o r ta k e s fu ll re s p o n s ib ility f o r th e c o n te n t o f th e a rtic le . T he a u th o r d id n o t re c e iv e h o n o ra ria fo r th is w o r k . N o fin a n c ia l re la tio n s h ip s re le v a n t t o th e c o n te n t o f th is a rtic le h a v e b e e n d is c lo s e d b y th e a u th o r o r e d i to r ia l s ta ff. M a rg o lie s c a n b e re a c h e d a t liz .m a rg o lie s @ g m a il.c o m , w it h c o p y t o e d ito r a t C J O N E d ito r@ o n s .o rg . K ey w o r d s : le s b ia n ; g a y ; b is e x u a l; LG BT D ig ita l O b je c t Id e n tifie r : 1 0 .1 1 8 8 /1 4 .C J O N .4 6 2 -4 6 4
eople who identify as lesbian, gay, bisexual, or transgender, termed “LGBT,” differ from the general public because of their sexual orientation and/or gender identity. These are iden tity terms—not descriptions of behavior. Many people who have sexual interest in or experiences with people of the same sex do not identify as LGBT. Xu, Stern berg, and Markowitz (2010) studied men (aged 18-59 years) in New York City who reported having sex with men in their past and found that 45% self-identified as homosexual or gay, 19% as bisexual, and 35% as heterosexual or straight.
P
Discrimination and Health Discrimination against LGBT people results in multiple health disparities. Many of the disparities can be traced to the stress of living in the United States as gender and sexual minorities. For example, LGBT peo ple use tobacco at nearly twice the national average and its initial use can be traced to early experiences of discrimination, bully ing, and internalized homophobia in LGBT youth (U.S. Department of Health and Human Services [USDHHS], 2013). Any 462
lingering doubt about the health conse quences of discrimination was addressed in Garcia’s (2014) study, which found that LGBT people who live in communities with high levels of antigay prejudice have a reduced life expectancy by 12 years. Studies document that multiple barriers keep LGBT people from engaging with the healthcare system for care. LGBT peo ple are more likely to be uninsured than their heterosexual counterparts (Krehely, 2009). Nineteen percent of transgender patients report having been denied care because of their transgender status (Grant et al., 2010). Indeed, studies show that medical education about the health needs of LGBT people is lacking (Obedin-Maliver et al., 2011).
human papillomavirus infection (65% in gay men who are HIV-negative ?nd 95% in gay men who are HIV-postive) (Margolies & Goeren, 2013). When HIV infection is coupled with high tobacco use, the risk increases dramatically for anal and other cancers (Sahasrabuddhe et al., 2013). Although very little has been studied about the cancer risks of transgender people, some researchers suggest that ex ogenous hormone may increase the risk for multiple cancers (New York Depart ment of Health, 2013). Increased cancer risks require hyper-vigilance about can cer screening. However, data are minimal and/or mixed about cancer screening in the LGBT population (UC Davis, 2012). The lower rates for most types of screen ings reflect the barriers to care reviewed earlier (USDHHS, 2012). To date, no cancer registries collect in formation about gender identity or sexual orientation. Without data, the experiences and outcomes for LGBT cancer survivors are buried in valuable SEER data, which other minority populations use for re search, funding, and treatment decisions. For example, although LGBT people use tobacco at rates that are 68% higher than the general population, no evidence is reported about increased lung cancer incidence (King, Dube, & Tynan, 2012).
The Cancer Experience Increased Cancer Risks Multiple studies have provided evi dence of dramatically increased cancer risks in LGBT people. For example, les bians are considered to have the densest cluster of breast cancer risks, w hich include higher rates of smoking, nullipar ity, obesity, and alcohol use (Cochran & Mays, 2012). Gay men have high rates of August 2014
After a history of avoiding the health care system because of lower insurance rates and discrimination, LGBT people may enter the cancer treatm ent world with more wariness than others (Margo lies & Scout, 2013). Getting a diagnosis of cancer is frightening. But, for many LGBT people, the critical questions about treat ment options and recovery are followed
Volume 18, Number 4
Clinical Journal o f Oncology Nursing
100
89.4
80
v Ol ™
c: O)
85.7
73 58.8
60
50.5
a5. 40 20
9.1
0
id I will be refused
Medical personnel
Not enough health
Not enough
Not enough
medical service
w ill treat me
professionals
support groups for
substance abuse
and dislike of
because l a m . . .
differently
adequately trained
people who are .. .
treatment for
people who ar e . . .
because l a m . . .
to care for people
Community fear
people who ar e ...
who are .. . A
Lesbian, gay, or bisexual
Transgender
in
Living with HIV
FIGURE 1. Fears and Concerns About Accessing Health Care N o te .
Based on information from Lambda Legal, 2010.
immediately by concerns about social stigma (see Figure 1). The all-important question of “Will I survive this?” is com pounded by additional worries: “Should I come out to my doctor?” “Will I be safe if I do?” “Will my chosen family be wel come?” and “Will I be offered the informa tion I need to take care of my relationship, my sexuality, my fertility, and my family? ” (Margolies & Smith-Stoner, in press). Difficulties in Conning Out
Patients have better outcomes when they put their whole selves into treat ment. Studies have shown that disclosure of identity and the medical care team’s acceptance of this disclosure is linked to better patient health outcomes (Durso & Meyer, 2013). LGBT patients must repeatedly weigh the benefits of disclosure with the risks of coming out. Cancer care involves dozens of health and social service providers, such as oncologists, nurses, magnetic resonance imaging technicians, and clerical staff. Patients will have to decide multiple times whether they feel safe enough to disclose themselves and their partners to members of the healthcare team. Having a poten tially life-threatening illness, coupled with limited provider options, makes the stakes even higher (Margolies & Scout, 2013). In a study conducted by the National LGBT Cancer Network of more than 300 LGBT cancer survivors, some survivors who were out in other parts of their lives C linical Jo urnal o f O n co lo gy N ursing
chose to stay in the closet during cancer treatment. This left their partners’ support and participation completely out of the hospital setting and healthcare providers’ clinic examinations and treatment visits. However, the survey found that 52% of study participants came out to one or more of their nurses (Margolies & Smith-Stoner, in press) (see Table 1). From the survey, as one survivor explained, “As an alone, aging senior, I am also dealing with fear of rejec tion by being out even though I was very out when younger and in a partnership. There is a big part of the cancer experience that never gets shared with the caregivers or service providers when you are not com fortable letting them know who you really are!” (Margolies & Scout, 2013, p. 14).
from providing care or assisting with medical decision making (see Table 2). As an LGBT survivor said, “It is important to know where it is safe to bring a partner because my family hates me, and even my mother told me right before the surgery that she hoped I would die in surgery and that she wished I had never been born” (Margolies & Scout, 2013, p. 5). Lack of Information
Cancer treatm ent has an im pact on both sexual functioning and interest.
TABLE 1. Healthcare Staff Who Knew Patient Orientation (N = 311) Provider
The Invisibility of Support Systems
Support systems are a critical compo nent of cancer treatment and can have a profound impact on recovery and health outcomes. Although many patients with cancer rely on their family for support, it is not uncommon for LGBT people to be alienated from their family of origin because of their gender identity and/or sexual orientation (Margolies & Scout, 2013). Therefore, LGBT support systems may differ from the m ainstream and may be invisible to healthcare providers, who may not know how to ask about or recognize the importance of key players. These supportive oth ers—crucial for healing—may be inadvertently excluded
V o lu m e 18, N u m be r 4
O n co lo gy Essentials
n
%
Primary care physician
212
88
Oncologist
131
55
Surgeon
137
57
One or more of the nurses
126
52
One or more of the clerical staff or receptionists
99
41
Radiologist
50
21
Social worker
40
17
N o te . Participants could identify more than one healthcare provider.
Based on information from Margolies & Smith-Stoner, in press. N o te .
463
TABLE 2. Emotional Support Team
referring to LGBT identity, an u n d erstan d ing ab o u t d iscrim ination and b arriers to
at the Time of Diagnosis (N = 311)
care, and th e n eed for m ore co m p reh en
Provider
sive outcom e data about th e care of oncol
n
%
230
77
ogy LGBT p atients a n d /o r survivors (w w w Friends Partner at th a t tim e
185
62
Parents
119
40
Siblings
119
40
W ork colleagues
88
30
Other fam ily members
82
28
Ex-partners
47
16
N o te . Participants could identify more than
.cancer-netw ork.org). T he can c e r e x p e ri en ce for LGBT patien ts also is im p acted by w h e th e r th e p atien t is ou t to m em b ers of th e h ealth care team and w h o are k n o w n o r invisible social su p p o rts for th e patient. T he oncology n u rse should also b e aw are o f issues o f LGBT sexuality and th e im pact th a t o n c o lo g y tr e a tm e n t m ay h av e o n LGBT sexual functioning.
References
one source o f support. N o te . Based on inform ation from Margolies
& Smith-Stoner, in press.
N urses receive little tra in in g in ad d ress ing th e sex u al n eed s o f LGBT patien ts. In d e e d , a stu d y o f th e to p 10 n u rsin g jo u rn als in clu d ed only eig h t articles (of 5,000) th a t ad d ressed LGBT h e a lth (Eliason, D ibble, & D ejoseph, 2010). In addition, th e language in m ost p rin t ed m aterials assum es m arriage and h e te ro sexuality. For exam ple, p ro sta te c a n c e r tr e a tm e n t o fte n c o m p ro m ise s e re c tile functioning. To w o rk effectively w ith gay m ale survivors, nu rses n e e d to b e co m p e te n t w h e n d iscu ssin g p o st-tre a tm e n t anal p e n e tra tio n and anal-receptive sex. Few nu rses are ex p o sed to th is inform a tion (Eliason et al., 2010). As o n e gay m an expressed, “I am a gay m ale and a bottom . T h e chem o, horm one, surgery, and radia tion took alm ost tw o years—du rin g w h ich I lost all sex drive and m y p en is shrank. E rectile d ru g s have c re a te d a d iffe re n t erectio n th a n I used to have. I w o u ld have a p p reciated m o re detailed , c o m p re h e n sive inform ation about w h a t to e x p e c t,” (M argolies & Scout, 2013, p. 25).
Conclusion A h isto ry o f d iscrim inatio n an d secrecy h a s led to p o o r e r h e a lth o u tc o m e s in LGBT p eo p le, including in creased ca n c e r risks an d additional ch allen g es in c a n c e r tre a tm e n t an d su rv iv o rsh ip . C u ltu rally c o m p e te n t oncology n u rse s can have an en o rm o u s positive im p ac t o n th e c a re o f th is u n d e rse rv e d p o p u latio n . A fo u n d atio n fo r LGBT c a re n e e d s to include appropriate language to use w h e n 464
Cochran, S.D., & Mays, V.M. (2012). Risk of b reast can cer m ortality am ong w om en cohabiting w ith same sex partners: Find ings from the National Health Interview Survey, 1997-2003 J o u rn a l o f W o m en ’s H ealth, 21, 528-533. Durso, L., & Meyer, I. (2013). Patterns and predictors of disclosure of sexual orienta tion to healthcare providers am ong les bians, gay men, and bisexuals. S exu a lity Research a n d Social Policy, 10, 35-42. E liason, M.J., D ibble, S., & D ejo se p h , J. (2010). Nursing's silence on lesbian, gay, b isex u al, and tra n sg e n d e r issues: The need for em ancipatory efforts. A dvances in N ursing Science, 33, 206-218. G arcia, M. (2014). Study: A ntigay c o m m u n itie s lead to early LGB d eath . Re tr ie v e d fro m h tt p :/ /w w w .a d v o c a te .co m /h ealth /2 0 1 4 /0 2 /1 6 /stu d y -an tig ay -communities-lead-early-lgb-death G rant, J., M ottet, L., Tanis, J., H erm an, J., H arrison, J., & Keisling, M. (2010). N«tio n a l transgender d isc rim in a tio n su r ve y rep o rt on h e a lth a n d h e a lth care. Retrieved from http://transequality.org/ PDFs/NTDSReportonHealth_final.pdf King, B.A., Dube, S.R., & Tynan, M.A. (2012). Current tobacco use among adults in the United States: Findings from the National Adult Tobacco Survey. A m erican J o u rn a l o f P ublic H ealth, 102, e 9 3 -el0 0 . doi:10 .2105/AJPH.2012.301002 Krehely, J. (2009). H ow to close the LGBT h e a lth d isp a ritie s gap. R etrieved from http://www.americanprogress.org/issues/ lg b t/re p o rt/2 0 0 9 /1 2 /2 1 /7 0 4 8 /h o w -to -close-the-lgbt-health-disparities-gap/ Lam bda Legal (2010). W h en h e a lth c a re is n ’t caring: L a m b d a Legal’s su rvey on d is c r im in a tio n a g a in s t LG BT p e o p le a n d p e o p le liv in g w ith HIV. Retrieved from h ttp ://w w w .lam b d aleg al.o rg /p u b lications/when-health-care-isnt-caring August 2014
M argolies, L., & G oeren, B. (2013). A n a l cancer, H IV a n d g a y /b ise x u a l m en. Re trieved from http://w w w .gm hc.org/files/ editor/file/ti_0909.pdf M argolies, L., & Scout, N. (2013). LGBT patient-centered out-comes: Cancer sur vivors teach us h o w to im prove care fo r all. Retrieved from h ttp ://w w w .c a n c e r -n e tw o rk .o rg /d o w n lo a d s /lg b t-p a tie n t -centered-outcom es.pdf Margolies, L., & Smith-Stoner, M. (In press). The experience of being diagnosed w ith can cer by lesbian, gay, tran sg en d er and bisexual patients. J o u r n a l o f O ncology Practice. N ew York D e p artm en t of H ealth. (2013). Ten things tran sg en d er p erso n s should d iscu ss w ith th e ir h e a lth care p ro v id ers. Retrieved from h ttp ://w w w .h e a lth .n y .g o v /d iseases/aid s/co n su m ers/lg b t/ transgender_health_concerns.htm Obedin-Maliver, J., Goldsmith, E.S., Stewart, L., W hite, W., Tran, E., Brenman, S., . . . Lunn, M.R. (2011). Lesbian, gay, bisexual, and transgender-related content in under graduate medical education. JAMA, 306, 971-977. doi: 10.1001/jama.2011.1255 Sahasrabuddhe, V., Castle, P., Follansbee, S., Borgonovo, S., Tokugawa, D., Schwartz, L., . . . W en tz en sen N. (2013). H um an p a p illo m a v iru s g e n o ty p e a ttrib u tio n and estim atio n o f prev en tab le fraction o f anal in tra e p ith e lia l n eo p lasia cases am ong HIV-infected m en w ho have sex w ith men .Jo u rn a l o f Infectious Disease, 207, 392-401. doi:10.1093/infdis/jis694 UC Davis. (2012). LGBT task fo rce finds disparities in cancer screening and care. R e trie v e d fro m h ttp ://w w w .u c d m c .ucdavis.edu/synthesis/issues/fall2012/ lg b t-ta sk -fo rc e -ta c k le s-d isp a ritie s-in -cancer-screening-and-care.htm l U.S. D epartm ent of Health and Human Ser vices. (2012). W om en’s health. Lesbian and biosexual health fact sheet. Retrieved fro m h ttp ://w w w .w o m e n sh e a lth .g o v / publications/our-publications/fact-sheet/ lesbian-bisexual-health.html U.S. D e p a rtm e n t o f H e a lth a n d H um an Services. (2013). H ealthy p eo p le 2020. Lesbian, gay, bisexual, and tran sg ender h e a lth . R e trie v e d fro m h tt p :/ /w w w .h e a lth y p e o p le .g o v /2 0 2 0 /to p ic so b je c tives2020/overview .aspx?topicid=25 Xu, F., Sternberg, M.R., & Markowitz, L.E. (2010). Men w h o have sex w ith m en in the United States: D em ographic and be havioral ch aracteristics and prevalence of HIV and HSV-2 infection: Results from National H ealth and N utrition Exam ina tion Survey 2001-2006. Sexu a lly Trans m itte d Diseases, 37, 399-405.
Volume 18, Number 4
Clinical Journal o f Oncology Nursing
Copyright of Clinical Journal of Oncology Nursing is the property of Oncology Nursing Society and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Ellen R. Carr, RN, M S N , AO CN® — A sso ciate E ditor
The Psychosocial Needs o f Lesbian, Gay, Bisexual, or Transgender Patients W ith Cancer Liz M argo lie s, LCSW
Because o f d iscrim in a tio n and secrecy, lesbian, gay, bisexual, and tra n sge n de r (LGBT) people have poo re r health outcom es, w hich include an increased risk fo r certain cancers and a d d itio n a l challenges in cancer tre a tm e n t and su rvivorsh ip . The o n co lo g y nurse also should be aw a re o f issues o f LGBT se xua lity and th e im p a c t th a t o n co lo gy tre a t m e n t m ay have on th e LGBT p a tie n t's im m e diate and lo n g -te rm sexual fu n c tio n in g . Liz M a rg o lie s , LCSW , is th e f o u n d e r a n d e x e c u tiv e d ir e c to r o f th e N a tio n a l LGBT C a n c e r N e tw o r k in N e w Y ork, NY. T he a u th o r ta k e s fu ll re s p o n s ib ility f o r th e c o n te n t o f th e a rtic le . T he a u th o r d id n o t re c e iv e h o n o ra ria fo r th is w o r k . N o fin a n c ia l re la tio n s h ip s re le v a n t t o th e c o n te n t o f th is a rtic le h a v e b e e n d is c lo s e d b y th e a u th o r o r e d i to r ia l s ta ff. M a rg o lie s c a n b e re a c h e d a t liz .m a rg o lie s @ g m a il.c o m , w it h c o p y t o e d ito r a t C J O N E d ito r@ o n s .o rg . K ey w o r d s : le s b ia n ; g a y ; b is e x u a l; LG BT D ig ita l O b je c t Id e n tifie r : 1 0 .1 1 8 8 /1 4 .C J O N .4 6 2 -4 6 4
eople who identify as lesbian, gay, bisexual, or transgender, termed “LGBT,” differ from the general public because of their sexual orientation and/or gender identity. These are iden tity terms—not descriptions of behavior. Many people who have sexual interest in or experiences with people of the same sex do not identify as LGBT. Xu, Stern berg, and Markowitz (2010) studied men (aged 18-59 years) in New York City who reported having sex with men in their past and found that 45% self-identified as homosexual or gay, 19% as bisexual, and 35% as heterosexual or straight.
P
Discrimination and Health Discrimination against LGBT people results in multiple health disparities. Many of the disparities can be traced to the stress of living in the United States as gender and sexual minorities. For example, LGBT peo ple use tobacco at nearly twice the national average and its initial use can be traced to early experiences of discrimination, bully ing, and internalized homophobia in LGBT youth (U.S. Department of Health and Human Services [USDHHS], 2013). Any 462
lingering doubt about the health conse quences of discrimination was addressed in Garcia’s (2014) study, which found that LGBT people who live in communities with high levels of antigay prejudice have a reduced life expectancy by 12 years. Studies document that multiple barriers keep LGBT people from engaging with the healthcare system for care. LGBT peo ple are more likely to be uninsured than their heterosexual counterparts (Krehely, 2009). Nineteen percent of transgender patients report having been denied care because of their transgender status (Grant et al., 2010). Indeed, studies show that medical education about the health needs of LGBT people is lacking (Obedin-Maliver et al., 2011).
human papillomavirus infection (65% in gay men who are HIV-negative ?nd 95% in gay men who are HIV-postive) (Margolies & Goeren, 2013). When HIV infection is coupled with high tobacco use, the risk increases dramatically for anal and other cancers (Sahasrabuddhe et al., 2013). Although very little has been studied about the cancer risks of transgender people, some researchers suggest that ex ogenous hormone may increase the risk for multiple cancers (New York Depart ment of Health, 2013). Increased cancer risks require hyper-vigilance about can cer screening. However, data are minimal and/or mixed about cancer screening in the LGBT population (UC Davis, 2012). The lower rates for most types of screen ings reflect the barriers to care reviewed earlier (USDHHS, 2012). To date, no cancer registries collect in formation about gender identity or sexual orientation. Without data, the experiences and outcomes for LGBT cancer survivors are buried in valuable SEER data, which other minority populations use for re search, funding, and treatment decisions. For example, although LGBT people use tobacco at rates that are 68% higher than the general population, no evidence is reported about increased lung cancer incidence (King, Dube, & Tynan, 2012).
The Cancer Experience Increased Cancer Risks Multiple studies have provided evi dence of dramatically increased cancer risks in LGBT people. For example, les bians are considered to have the densest cluster of breast cancer risks, w hich include higher rates of smoking, nullipar ity, obesity, and alcohol use (Cochran & Mays, 2012). Gay men have high rates of August 2014
After a history of avoiding the health care system because of lower insurance rates and discrimination, LGBT people may enter the cancer treatm ent world with more wariness than others (Margo lies & Scout, 2013). Getting a diagnosis of cancer is frightening. But, for many LGBT people, the critical questions about treat ment options and recovery are followed
Volume 18, Number 4
Clinical Journal o f Oncology Nursing
100
89.4
80
v Ol ™
c: O)
85.7
73 58.8
60
50.5
a5. 40 20
9.1
0
id I will be refused
Medical personnel
Not enough health
Not enough
Not enough
medical service
w ill treat me
professionals
support groups for
substance abuse
and dislike of
because l a m . . .
differently
adequately trained
people who are .. .
treatment for
people who ar e . . .
because l a m . . .
to care for people
Community fear
people who ar e ...
who are .. . A
Lesbian, gay, or bisexual
Transgender
in
Living with HIV
FIGURE 1. Fears and Concerns About Accessing Health Care N o te .
Based on information from Lambda Legal, 2010.
immediately by concerns about social stigma (see Figure 1). The all-important question of “Will I survive this?” is com pounded by additional worries: “Should I come out to my doctor?” “Will I be safe if I do?” “Will my chosen family be wel come?” and “Will I be offered the informa tion I need to take care of my relationship, my sexuality, my fertility, and my family? ” (Margolies & Smith-Stoner, in press). Difficulties in Conning Out
Patients have better outcomes when they put their whole selves into treat ment. Studies have shown that disclosure of identity and the medical care team’s acceptance of this disclosure is linked to better patient health outcomes (Durso & Meyer, 2013). LGBT patients must repeatedly weigh the benefits of disclosure with the risks of coming out. Cancer care involves dozens of health and social service providers, such as oncologists, nurses, magnetic resonance imaging technicians, and clerical staff. Patients will have to decide multiple times whether they feel safe enough to disclose themselves and their partners to members of the healthcare team. Having a poten tially life-threatening illness, coupled with limited provider options, makes the stakes even higher (Margolies & Scout, 2013). In a study conducted by the National LGBT Cancer Network of more than 300 LGBT cancer survivors, some survivors who were out in other parts of their lives C linical Jo urnal o f O n co lo gy N ursing
chose to stay in the closet during cancer treatment. This left their partners’ support and participation completely out of the hospital setting and healthcare providers’ clinic examinations and treatment visits. However, the survey found that 52% of study participants came out to one or more of their nurses (Margolies & Smith-Stoner, in press) (see Table 1). From the survey, as one survivor explained, “As an alone, aging senior, I am also dealing with fear of rejec tion by being out even though I was very out when younger and in a partnership. There is a big part of the cancer experience that never gets shared with the caregivers or service providers when you are not com fortable letting them know who you really are!” (Margolies & Scout, 2013, p. 14).
from providing care or assisting with medical decision making (see Table 2). As an LGBT survivor said, “It is important to know where it is safe to bring a partner because my family hates me, and even my mother told me right before the surgery that she hoped I would die in surgery and that she wished I had never been born” (Margolies & Scout, 2013, p. 5). Lack of Information
Cancer treatm ent has an im pact on both sexual functioning and interest.
TABLE 1. Healthcare Staff Who Knew Patient Orientation (N = 311) Provider
The Invisibility of Support Systems
Support systems are a critical compo nent of cancer treatment and can have a profound impact on recovery and health outcomes. Although many patients with cancer rely on their family for support, it is not uncommon for LGBT people to be alienated from their family of origin because of their gender identity and/or sexual orientation (Margolies & Scout, 2013). Therefore, LGBT support systems may differ from the m ainstream and may be invisible to healthcare providers, who may not know how to ask about or recognize the importance of key players. These supportive oth ers—crucial for healing—may be inadvertently excluded
V o lu m e 18, N u m be r 4
O n co lo gy Essentials
n
%
Primary care physician
212
88
Oncologist
131
55
Surgeon
137
57
One or more of the nurses
126
52
One or more of the clerical staff or receptionists
99
41
Radiologist
50
21
Social worker
40
17
N o te . Participants could identify more than one healthcare provider.
Based on information from Margolies & Smith-Stoner, in press. N o te .
463
TABLE 2. Emotional Support Team
referring to LGBT identity, an u n d erstan d ing ab o u t d iscrim ination and b arriers to
at the Time of Diagnosis (N = 311)
care, and th e n eed for m ore co m p reh en
Provider
sive outcom e data about th e care of oncol
n
%
230
77
ogy LGBT p atients a n d /o r survivors (w w w Friends Partner at th a t tim e
185
62
Parents
119
40
Siblings
119
40
W ork colleagues
88
30
Other fam ily members
82
28
Ex-partners
47
16
N o te . Participants could identify more than
.cancer-netw ork.org). T he can c e r e x p e ri en ce for LGBT patien ts also is im p acted by w h e th e r th e p atien t is ou t to m em b ers of th e h ealth care team and w h o are k n o w n o r invisible social su p p o rts for th e patient. T he oncology n u rse should also b e aw are o f issues o f LGBT sexuality and th e im pact th a t o n c o lo g y tr e a tm e n t m ay h av e o n LGBT sexual functioning.
References
one source o f support. N o te . Based on inform ation from Margolies
& Smith-Stoner, in press.
N urses receive little tra in in g in ad d ress ing th e sex u al n eed s o f LGBT patien ts. In d e e d , a stu d y o f th e to p 10 n u rsin g jo u rn als in clu d ed only eig h t articles (of 5,000) th a t ad d ressed LGBT h e a lth (Eliason, D ibble, & D ejoseph, 2010). In addition, th e language in m ost p rin t ed m aterials assum es m arriage and h e te ro sexuality. For exam ple, p ro sta te c a n c e r tr e a tm e n t o fte n c o m p ro m ise s e re c tile functioning. To w o rk effectively w ith gay m ale survivors, nu rses n e e d to b e co m p e te n t w h e n d iscu ssin g p o st-tre a tm e n t anal p e n e tra tio n and anal-receptive sex. Few nu rses are ex p o sed to th is inform a tion (Eliason et al., 2010). As o n e gay m an expressed, “I am a gay m ale and a bottom . T h e chem o, horm one, surgery, and radia tion took alm ost tw o years—du rin g w h ich I lost all sex drive and m y p en is shrank. E rectile d ru g s have c re a te d a d iffe re n t erectio n th a n I used to have. I w o u ld have a p p reciated m o re detailed , c o m p re h e n sive inform ation about w h a t to e x p e c t,” (M argolies & Scout, 2013, p. 25).
Conclusion A h isto ry o f d iscrim inatio n an d secrecy h a s led to p o o r e r h e a lth o u tc o m e s in LGBT p eo p le, including in creased ca n c e r risks an d additional ch allen g es in c a n c e r tre a tm e n t an d su rv iv o rsh ip . C u ltu rally c o m p e te n t oncology n u rse s can have an en o rm o u s positive im p ac t o n th e c a re o f th is u n d e rse rv e d p o p u latio n . A fo u n d atio n fo r LGBT c a re n e e d s to include appropriate language to use w h e n 464
Cochran, S.D., & Mays, V.M. (2012). Risk of b reast can cer m ortality am ong w om en cohabiting w ith same sex partners: Find ings from the National Health Interview Survey, 1997-2003 J o u rn a l o f W o m en ’s H ealth, 21, 528-533. Durso, L., & Meyer, I. (2013). Patterns and predictors of disclosure of sexual orienta tion to healthcare providers am ong les bians, gay men, and bisexuals. S exu a lity Research a n d Social Policy, 10, 35-42. E liason, M.J., D ibble, S., & D ejo se p h , J. (2010). Nursing's silence on lesbian, gay, b isex u al, and tra n sg e n d e r issues: The need for em ancipatory efforts. A dvances in N ursing Science, 33, 206-218. G arcia, M. (2014). Study: A ntigay c o m m u n itie s lead to early LGB d eath . Re tr ie v e d fro m h tt p :/ /w w w .a d v o c a te .co m /h ealth /2 0 1 4 /0 2 /1 6 /stu d y -an tig ay -communities-lead-early-lgb-death G rant, J., M ottet, L., Tanis, J., H erm an, J., H arrison, J., & Keisling, M. (2010). N«tio n a l transgender d isc rim in a tio n su r ve y rep o rt on h e a lth a n d h e a lth care. Retrieved from http://transequality.org/ PDFs/NTDSReportonHealth_final.pdf King, B.A., Dube, S.R., & Tynan, M.A. (2012). Current tobacco use among adults in the United States: Findings from the National Adult Tobacco Survey. A m erican J o u rn a l o f P ublic H ealth, 102, e 9 3 -el0 0 . doi:10 .2105/AJPH.2012.301002 Krehely, J. (2009). H ow to close the LGBT h e a lth d isp a ritie s gap. R etrieved from http://www.americanprogress.org/issues/ lg b t/re p o rt/2 0 0 9 /1 2 /2 1 /7 0 4 8 /h o w -to -close-the-lgbt-health-disparities-gap/ Lam bda Legal (2010). W h en h e a lth c a re is n ’t caring: L a m b d a Legal’s su rvey on d is c r im in a tio n a g a in s t LG BT p e o p le a n d p e o p le liv in g w ith HIV. Retrieved from h ttp ://w w w .lam b d aleg al.o rg /p u b lications/when-health-care-isnt-caring August 2014
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Volume 18, Number 4
Clinical Journal o f Oncology Nursing
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