Unmet support needs of sexual and gender minority breast cancer survivors

Abstract
Purpose

This study explored sources of stress and support experienced by sexual and
gender minority (SGM) breast cancer survivors and the impact of treatment on
their lives.

Methods
SGM breast cancer survivors were identified through purposive and referral sampling and
invited to participate in a web-based survey containing both closed- and open-ended items.
Sixty-eight SGM breast cancer survivors aged 18–75 years completed the survey between
May 2015 and January 2016.

Results
Bivariate analyses of quantitative data reveal that queer-identified (in either sexual
orientation or gender identity (SOGI)) SGM survivors are more likely to report having
bilateral mastectomy without reconstruction and to think that disclosing SOGI to providers
affected their care. Queer-identified SGM survivors are also more likely to use LGBT-
specific support groups and to report that their current level of social support is below
average. Thematic analysis of qualitative comments revealed themes related to self-disclosure
of SOGI to providers, need for recognition and support of partners, need for appropriate
social supports for patients and partners, and impact of breast cancer treatment on intimate
relationships.

Conclusion
This study provides quantitative and qualitative evidence that many SGM breast cancer
patients face a dearth of appropriate social supports, both from breast cancer survivor
organizations and from within the medical system. These findings confirm the need for
research on the physical and emotional effects of breast cancer treatment on SGM breast
cancer survivors, as well as further exploration of the social support needs and experiences of
SGM breast cancer patients and their partners.

Keywords
Self-disclosure Social support Relationships Mixed methods
Electronic supplementary material

The online version of this article (https://doi.org/10.1007/s00520-017-3941-

z) contains supplementary material, which is available to authorized users.
References
1.Brandenburg DL, Matthews AK, Johnson TP, Hughes TL (2007) Breast
cancer risk and screening: a comparison of lesbian and heterosexual women.
Women Health 45(4):109–130
CrossRefPubMedGoogle Scholar
2.Cochran SD, Mays VM (2012) Risk of breast cancer mortality among
women cohabiting with same sex partners: findings from the National Health
Interview Survey, 1997–2003. J Women’s Health (Larchmt) 21(5):528–533
CrossRefGoogle Scholar
3.Opportunities CO, Populations BO, Medicine IO (2011) The health of
lesbian, gay, bisexual, and transgender people: building a foundation for
better understanding. National Academies Press, Washington, D.C.
Google Scholar
4.Zaritsky E, Dibble SL (2010) Risk factors for reproductive and breast
cancers among older lesbians. J Women’s Health (Larchmt) 19(1):125–131
CrossRefGoogle Scholar
5.Case P, Austin SB, Hunter DJ et al (2004) Sexual orientation, health risk
factors, and physical functioning in the Nurses’ Health Study II. J Women’s
Health (Larchmt) 13(9):1033–1047
CrossRefGoogle Scholar
6.Dibble SL, Roberts SA (2002) A comparison of breast cancer diagnosis and
treatment between lesbian and heterosexual women. J Gay Lesbian Med
Assoc 6(1):9–17
CrossRefGoogle Scholar
7.Boehmer U, Glickman M, Winter M, Clark MA (2013) Long-term breast
cancer survivors’ symptoms and morbidity: differences by sexual
orientation? J Cancer Surviv 7:203–210. https://doi.org/10.1007/s11764-
012-0260-8
CrossRefPubMedGoogle Scholar
8.Seidman S (2002) Beyond the closet: the transformation of gay and lesbian
life. Routledge, New York
Google Scholar
9.Boehmer U, Case P (2004) Physicians don’t ask, sometimes patients tell:
disclosure of sexual orientation among women with breast carcinoma.
Cancer 101(8):1882–1889
CrossRefPubMedGoogle Scholar
10.Roller CG, Sedlak CA, Draucker CB, Veney A, Leifson MA, Sanata JD
(2016) Managing the conversation: how sexual minority women reveal sexual
orientation. J Nurse Pract 12(6):e259–e296.
https://doi.org/10.1016/j.nurpra.2016.02.010
CrossRefGoogle Scholar
11.Boehmer U, Case P (2007) Sexual minority women’s interactions with
breast cancer providers. Women Health 44(2):41–58.
https://doi.org/10.1300/J013v44n02_03
CrossRefGoogle Scholar
12.Boehmer U, White JL (2012) Sexual minority status and long-term breast
cancer survivorship. Women Health 52(1):71–87
CrossRefPubMedGoogle Scholar
13.Mattingly AE, Kiluk JV, Lee MC (2016) Clinical considerations of risk,
incidence, and outcomes of breast cancer in sexual minorities. Cancer
Control 23(4):373–382
CrossRefPubMedGoogle Scholar
14.Quinn GP, Sanchez JA, Sutton SK, Vadaparampil ST, Nguyen GT et al
(2015) Cancer and lesbian, gay, bisexual, transgender/transsexual, and
queer/questioning (LGBTQ) populations. CA Cancer J Clin 2015(65):384–
400. https://doi.org/10.3322/caac.21288
CrossRefGoogle Scholar
15.Malicka I, Kozlowska A, Woźniewski M, Rymaszewska J, Szczepańska-
Gieracha J (2016) The role of social support in women’s health and recovery
processes. Psychol Health Med 21(1):81–91.
https://doi.org/10.1080/13548506.2015.1009378
CrossRefPubMedGoogle Scholar
16.Available at:
http://www.cancer.org/treatment/supportprogramsservices/index. Accessed
October 12, 2016
17.Lesbians and Breast Cancer Project Team (2004) Coming out about
lesbians and cancer. Ontario Breast Cancer Community Research Initiative,
Toronto
Google Scholar
18.Paul LB, Pitagora D, Brown B, Tworecke A, Rubin L (2014) Support needs
and resources of sexual minority women with breast cancer. Psychooncology
23(5):578–584
CrossRefPubMedGoogle Scholar
19.Boehmer U, Glickman M, Winter M (2012) Anxiety and depression in
breast cancer survivors of different sexual orientations. J Consult Clin
Psychol 80(3):382–395
CrossRefPubMedGoogle Scholar
20.Jabson JM, Bowen D (2014) Perceived stress and sexual orientation
among breast cancer survivors. J Homosex 61:889–898
CrossRefPubMedGoogle Scholar
21.Boehmer U, Glickman M, Winter M, Clark M (2013) Breast cancer
survivors of different sexual orientations: which factors explain survivors’
quality of life and adjustment? Ann Oncol 24:1622–1630.
https://doi.org/10.1093/annonc/mdt035
CrossRefPubMedGoogle Scholar
22.Boehmer U, Xiapeng M, Ozonoff A (2011) Cancer survivorship and sexual
orientation. Cancer 2011(117):3796–3804.
https://doi.org/10.1002/cncr.25950
CrossRefGoogle Scholar
23.Biernacki P, Waldorf D (1981) Snowball sampling: problems and
techniques of chain referral sampling. Sociol Methods Res 10(2):141–163
Google Scholar
24.Walters JK, Biernacki P (1989) Targeted sampling: options for the study
of hidden populations. Soc Probl 36(4):416–430
CrossRefGoogle Scholar
25.Engel RJ, Schutt RK (2013) The practice of research in social work. Sage
Publications, Inc., Thousand Oaks
Google Scholar
26.Wilkerson JM, Iantaffi A, Grey JA, Bockting WO, Rosser BRS (2014)
Recommendations for internet-based qualitative health research with hard-
to-reach populations. Qual Health Res 24(4):561–574
CrossRefPubMedPubMedCentralGoogle Scholar
27.Frierson GM, Thiel DL, Andersen BL (2006) Body change stress for
women with breast cancer: the breast-impact of treatment scale. Ann Behav
Med 32(1):77–81
CrossRefPubMedPubMedCentralGoogle Scholar
28.Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual
Res Psychol 3(2):77–101
CrossRefGoogle Scholar
29.Denzin NK (1978) Sociological methods. McGraw-Hill, New York
Google Scholar
30.Quinn GP, Schabath MB, Sanchez JA, Sutton SK, Green BL (2015) The
importance of disclosure: lesbian, gay, bisexual, transgender/transsexual,
queer/questioning, and intersex individuals and the cancer continuum.
Cancer 121(8):1160–1163
CrossRefPubMedGoogle Scholar
31.Barbara AM, Quandt SA, Anderson RT (2001) Experiences of lesbians in
the health care environment. Women Health 34(1):45–62
CrossRefGoogle Scholar
32.Durso LE, Meyer IH (2013) Patterns and predictors of disclosure of sexual
orientation to healthcare providers among lesbians, gay men, and bisexuals.
Sex Res Soc Policy 10:35–42. https://doi.org/10.1007/s13178-012-0105-2
CrossRefGoogle Scholar
33.Boehmer U, Potter J, Bowen DJ (2009) Sexual functioning after cancer in
sexual minority women. Cancer J 15(1):65–69
CrossRefPubMedGoogle Scholar
34.Harbin A, Beagan B, Goldberg J (2012) Discomfort, judgement, and
health care for queers. Bioeth Inq 9:149–160
CrossRef
Dukungan yang tidak terpenuhi kebutuhan korban kanker payudara seksual dan
gender minoritas
Abstrak
Tujuan
Studi ini mengeksplorasi sumber stres dan dukungan yang dialami oleh korban
kanker payudara seksual dan gender minoritas (SGM) dan dampak pengobatan
terhadap kehidupan mereka.
Metode
Penyandang kanker payudara SGM diidentifikasi melalui sampling purposive
dan rujukan dan diundang untuk berpartisipasi dalam survei berbasis web yang
berisi item tertutup dan terbuka. Enam puluh delapan penderita kanker payudara
SGM yang berusia 18-75 tahun menyelesaikan survei antara Mei 2015 dan
Januari 2016.
Hasil
Analisis data kuantitatif bivariat menunjukkan bahwa identitas yang aneh (baik
dalam orientasi seksual atau identitas gender (SOGI)) korban SGM lebih
mungkin melaporkan mastektomi bilateral tanpa rekonstruksi dan untuk berpikir
bahwa mengungkapkan SOGI kepada penyedia layanan mempengaruhi
perawatan mereka. Queer-mengidentifikasi korban SGM juga lebih cenderung
menggunakan kelompok dukungan khusus LGBT dan melaporkan bahwa
tingkat dukungan sosial mereka saat ini di bawah rata-rata. Analisis tematik
terhadap komentar kualitatif mengungkapkan tema yang berkaitan dengan
pengungkapan diri SOGI kepada penyedia layanan, kebutuhan untuk pengakuan
dan dukungan dari pasangan, kebutuhan akan dukungan sosial yang sesuai
untuk pasien dan mitra, dan dampak pengobatan kanker payudara terhadap
hubungan intim.
Kesimpulan
Penelitian ini memberikan bukti kuantitatif dan kualitatif bahwa banyak pasien
kanker payudara SGM menghadapi kelangkaan dukungan sosial yang sesuai,
baik dari organisasi survivor kanker payudara dan dari dalam sistem medis.
Temuan ini mengkonfirmasi perlunya penelitian mengenai efek fisik dan
emosional pengobatan kanker payudara pada bayi kanker payudara SGM, serta
eksplorasi lebih lanjut mengenai kebutuhan dan pengalaman dukungan sosial
dari kanker payudara SGM pasien dan pasangannya.
Kata kunci
Pengungkapan diri Dukungan sosial Hubungan metode Campuran

Referensi
References
1.Brandenburg DL, Matthews AK, Johnson TP, Hughes TL (2007) Breast
cancer risk and screening: a comparison of lesbian and heterosexual women.
Women Health 45(4):109–130
CrossRefPubMedGoogle Scholar
2.Cochran SD, Mays VM (2012) Risk of breast cancer mortality among women
cohabiting with same sex partners: findings from the National Health Interview
Survey, 1997–2003. J Women’s Health (Larchmt) 21(5):528–533
CrossRefGoogle Scholar
3.Opportunities CO, Populations BO, Medicine IO (2011) The health of lesbian,
gay, bisexual, and transgender people: building a foundation for better
understanding. National Academies Press, Washington, D.C.
Google Scholar
4.Zaritsky E, Dibble SL (2010) Risk factors for reproductive and breast cancers
among older lesbians. J Women’s Health (Larchmt) 19(1):125–131
CrossRefGoogle Scholar
5.Case P, Austin SB, Hunter DJ et al (2004) Sexual orientation, health risk
factors, and physical functioning in the Nurses’ Health Study II. J Women’s
Health (Larchmt) 13(9):1033–1047
CrossRefGoogle Scholar
6.Dibble SL, Roberts SA (2002) A comparison of breast cancer diagnosis and
treatment between lesbian and heterosexual women. J Gay Lesbian Med Assoc
6(1):9–17
CrossRefGoogle Scholar
7.Boehmer U, Glickman M, Winter M, Clark MA (2013) Long-term breast
cancer survivors’ symptoms and morbidity: differences by sexual orientation? J
Cancer Surviv 7:203–210. https://doi.org/10.1007/s11764-012-0260-8
CrossRefPubMedGoogle Scholar
8.Seidman S (2002) Beyond the closet: the transformation of gay and lesbian
life. Routledge, New York
Google Scholar
9.Boehmer U, Case P (2004) Physicians don’t ask, sometimes patients tell:
disclosure of sexual orientation among women with breast carcinoma. Cancer
101(8):1882–1889
CrossRefPubMedGoogle Scholar
10.Roller CG, Sedlak CA, Draucker CB, Veney A, Leifson MA, Sanata JD
(2016) Managing the conversation: how sexual minority women reveal sexual
orientation. J Nurse Pract 12(6):e259–e296.
https://doi.org/10.1016/j.nurpra.2016.02.010
CrossRefGoogle Scholar
11.Boehmer U, Case P (2007) Sexual minority women’s interactions with breast
cancer providers. Women Health 44(2):41–58.
https://doi.org/10.1300/J013v44n02_03
CrossRefGoogle Scholar
12.Boehmer U, White JL (2012) Sexual minority status and long-term breast
cancer survivorship. Women Health 52(1):71–87
CrossRefPubMedGoogle Scholar
13.Mattingly AE, Kiluk JV, Lee MC (2016) Clinical considerations of risk,
incidence, and outcomes of breast cancer in sexual minorities. Cancer Control
23(4):373–382
CrossRefPubMedGoogle Scholar
14.Quinn GP, Sanchez JA, Sutton SK, Vadaparampil ST, Nguyen GT et al
(2015) Cancer and lesbian, gay, bisexual, transgender/transsexual, and
queer/questioning (LGBTQ) populations. CA Cancer J Clin 2015(65):384–400.
https://doi.org/10.3322/caac.21288
CrossRefGoogle Scholar
15.Malicka I, Kozlowska A, Woźniewski M, Rymaszewska J, Szczepańska-
Gieracha J (2016) The role of social support in women’s health and recovery
processes. Psychol Health Med 21(1):81–91.
https://doi.org/10.1080/13548506.2015.1009378
CrossRefPubMedGoogle Scholar
16.Available at:
http://www.cancer.org/treatment/supportprogramsservices/index. Accessed
October 12, 2016
17.Lesbians and Breast Cancer Project Team (2004) Coming out about lesbians
and cancer. Ontario Breast Cancer Community Research Initiative, Toronto
Google Scholar
18.Paul LB, Pitagora D, Brown B, Tworecke A, Rubin L (2014) Support needs
and resources of sexual minority women with breast cancer. Psychooncology
23(5):578–584
CrossRefPubMedGoogle Scholar

19.Boehmer U, Glickman M, Winter M (2012) Anxiety and depression in breast

cancer survivors of different sexual orientations. J Consult Clin Psychol
80(3):382–395
CrossRefPubMedGoogle Scholar
20.Jabson JM, Bowen D (2014) Perceived stress and sexual orientation among
breast cancer survivors. J Homosex 61:889–898
CrossRefPubMedGoogle Scholar
21.Boehmer U, Glickman M, Winter M, Clark M (2013) Breast cancer
survivors of different sexual orientations: which factors explain survivors’
quality of life and adjustment? Ann Oncol 24:1622–1630.
https://doi.org/10.1093/annonc/mdt035
CrossRefPubMedGoogle Scholar
22.Boehmer U, Xiapeng M, Ozonoff A (2011) Cancer survivorship and sexual
orientation. Cancer 2011(117):3796–3804. https://doi.org/10.1002/cncr.25950
CrossRefGoogle Scholar
23.Biernacki P, Waldorf D (1981) Snowball sampling: problems and techniques
of chain referral sampling. Sociol Methods Res 10(2):141–163
Google Scholar
24.Walters JK, Biernacki P (1989) Targeted sampling: options for the study of
hidden populations. Soc Probl 36(4):416–430
CrossRefGoogle Scholar
25.Engel RJ, Schutt RK (2013) The practice of research in social work. Sage
Publications, Inc., Thousand Oaks
Google Scholar
26.Wilkerson JM, Iantaffi A, Grey JA, Bockting WO, Rosser BRS (2014)
Recommendations for internet-based qualitative health research with hard-to-
reach populations. Qual Health Res 24(4):561–574
CrossRefPubMedPubMedCentralGoogle Scholar
27.Frierson GM, Thiel DL, Andersen BL (2006) Body change stress for women
with breast cancer: the breast-impact of treatment scale. Ann Behav Med
32(1):77–81
CrossRefPubMedPubMedCentralGoogle Scholar
28.Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res
Psychol 3(2):77–101
CrossRefGoogle Scholar
29.Denzin NK (1978) Sociological methods. McGraw-Hill, New York
Google Scholar
30.Quinn GP, Schabath MB, Sanchez JA, Sutton SK, Green BL (2015) The
importance of disclosure: lesbian, gay, bisexual, transgender/transsexual,
queer/questioning, and intersex individuals and the cancer continuum. Cancer
121(8):1160–1163
CrossRefPubMedGoogle Scholar
31.Barbara AM, Quandt SA, Anderson RT (2001) Experiences of lesbians in
the health care environment. Women Health 34(1):45–62
CrossRefGoogle Scholar
32.Durso LE, Meyer IH (2013) Patterns and predictors of disclosure of sexual
orientation to healthcare providers among lesbians, gay men, and bisexuals. Sex
Res Soc Policy 10:35–42. https://doi.org/10.1007/s13178-012-0105-2
CrossRefGoogle Scholar
33.Boehmer U, Potter J, Bowen DJ (2009) Sexual functioning after cancer in
sexual minority women. Cancer J 15(1):65–69
CrossRefPubMedGoogle Scholar
34.Harbin A, Beagan B, Goldberg J (2012) Discomfort, judgement, and health
care for queers. Bioeth Inq 9:149–160
CrossRef