Psycho-Oncology Psycho-Oncology 23: 578–584 (2014) Published online 28 November 2013 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3451
Support needs and resources of sexual minority women with breast cancer Laurie B. Paul1*, Dulcinea Pitagora1, Brienne Brown2, Adrian Tworecke1 and Lisa Rubin1 1 2
The New School for Social Research, Clinical Psychology, New York, NY, USA Seton Hall University, Counseling Psychology, South Orange, NJ, USA
*Correspondence to: The New School for Social Research, Clinical Psychology, New York, NY, USA. E-mail: [email protected]
Received: 15 May 2013 Revised: 14 October 2013 Accepted: 21 October 2013
Abstract Objective: The current paper utilizes qualitative methods to better understand the support needs and resources of sexual minority women (SMW) breast cancer patients. Methods: Thirteen semi-structured interviews were conducted with SMW, who were recruited from community-based organizations and had undergone mastectomy for treatment of breast cancer. Interviews explored support needs and resources. Data were analyzed using thematic analysis. Results: Three key domains emerged: support groups, family of origin support, and partner support. Participants emphasized the value of cancer support groups and resources tailored to SMW while stating that other dimensions of identity or experience, particularly age and cancer stage, were also important. Participants noted the dearth of social support resources for same-sex partners. Family of origin and partners were typically participants’ primary sources of tangible and emotional support; participants often engaged in protective buffering to mitigate caregivers’ distress. Single women faced the greatest challenges in terms of support needs and resources. Former partners were often key sources of support. Conclusions: SMW and their partners have many shared and unique support resources and barriers. Heteronormativity that is implicit in the structure of support resources can serve as a barrier to support for SMW and their partners. Flexibility in relationship roles enabling some SMW to include former partners as significant means of support may be a source of resiliency, particularly for unpartnered SMW cancer patients. Support needs and resources of SMW are best understood through an intersectionality framework that considers sexual orientation, relationship status, cancer stage, age, healthcare access, and other important identities and experiences. Copyright © 2013 John Wiley & Sons, Ltd.
Introduction In a recent report on the health of lesbian, gay, bisexual, and transgender (LGBT) people, the Institute of Medicine [1] called for increased research investigating the role of social structures and support on the lives and health of LGBT populations. Understanding the support needs and resources of sexual minority women (SMW) affected with breast cancer is crucial, particularly given evidence of elevated rates of breast cancer among SMW as compared with heterosexual women [2]. SMW encounter institutional and social barriers that can impede access to many of the social support resources that heterosexual women benefit from during illness [3–6]. These barriers are particularly salient, as some types of social support may impact psychological and physical health outcomes among people affected by cancer and other major illnesses [7–10]. Although research indicates little or no difference in sexual minority and heterosexual women’s overall depression and anxiety in response to newly diagnosed breast cancer [11], researchers have identified noteworthy points of resilience among SMW. Compared with heterosexual women, SMW tend to report fewer problems during treatment with body Copyright © 2013 John Wiley & Sons, Ltd.
image [11], a tendency to be less fatalistic [11], less cognitive avoidance [11], greater likelihood to express anger [11], and greater social support from partners and friends [11]. The current study draws on qualitative interviews with a sample of SMW with breast cancer to identify sources of social support, support needs, and support barriers in this patient population. Social support is defined as a social network’s provision of psychological and material resources intended to benefit an individual’s ability to cope with stress; it can be provided by a partner, child, other family members, friends, caregivers, or community social groups [12]. A number of different types of social support—including support groups and family of origin and partner support—have been found to impact breast cancer patients’ experiences.
Support groups Breast cancer patients who participate in support groups may experience fewer emotional disturbances and traumatic stress symptoms [13], and improvements in energy [12,14], quality of life, affect, and coping [8]. However, research on SMW indicates that support groups comprised predominantly of heterosexual women can remind SMW of their ‘otherness’ [15].
Support needs and resources of sexual minority women
SMW may experience stress related to disclosing sexual orientation or feel excluded by heteronormative values and assumptions. Multiple sources have reported that SMWspecific cancer support groups are rare [15,16]; yet, SMW who participate in these groups report an increased level of safety and comfort [6], better psychological adjustment, including reduced emotional distress, thought intrusions, and avoidance, and improved coping [11,17].
Family of origin and partner support Greater psychological adjustment among breast cancer patients has been shown in women with stronger family of origin cohesiveness [18]. However, research suggests that SMW tend to be in less frequent contact with, feel less close to, feel less at ease talking to, and seek less help from family of origin as compared with heterosexual women [11,19]. Diminished family of origin support may be related to rejection and alienation due to their sexual minority status, and as research indicates, SMW may be more likely to rely on friends and partners for support [11]. Strong partner support among cancer patients has been linked to improved outcomes post-treatment, including fewer sexual difficulties [20,21] and less anxiety, depression, and maladjustment to cancer [22]. However, institutional barriers—such as those resulting from a lack of legal recognition of same-sex relationships—can result in limited access to health insurance and benefits of the Family and Medical Leave Act [4], and restrictions on hospital visitation and medical decision-making rights for partners [23]. Furthermore, in a study exploring perceptions of the medical care system, SMW reported feeling less satisfied with the extent to which providers included their same-sex partners in treatment discussions [11]. These institutional and social barriers create significant challenges for SMW in the context of a major stressor such as cancer and may prohibit SMW from receiving the full benefits of partner support. The few studies specifically examining psychosocial concerns of SMW with breast cancer suggest that some of their support needs may differ from those of heterosexual women, albeit in ways that are not yet fully understood [3,11,17,24,25]. The current paper seeks to clarify SMW breast cancer patients’ support needs and resources by focusing on their experiences in support groups and with partner and family of origin support.
Methodology The sample was composed of 13 lesbian and bisexual women living in New York City who underwent single or bilateral mastectomy for the treatment of breast cancer. Participants were recruited through a newsletter of a New York City-based organization serving lesbians, bisexual women, and transgender people affected by cancer and their caregivers, and through an online community board Copyright © 2013 John Wiley & Sons, Ltd.
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for women affected by breast cancer that includes an ongoing discussion thread on lesbian, bisexual, and transgender topics. Interested participants contacted the senior author to schedule their interviews. Inclusion criteria specified that participants self-identify as lesbian, bisexual, gay, or queer. Participants who reported having been diagnosed and treated for breast cancer self-referred to the study. The interview protocol addressed support needs and resources, as well as questions concerning decision making about breast reconstruction. Inclusion criteria specified that participants’ breast cancer treatment incorporated single or bilateral mastectomy after implementation of the Women’s Health and Cancer Rights’ Act in 1999. In-person interviews lasting approximately 1 h were conducted by Dr. Lisa Rubin (n = 8) or by one of three female doctoral students involved in her research group. Interviews took place in a private room in a university building or in an alternative private location chosen by the participant. Interviews were audio-recorded, and participants were compensated $50. Data were collected from July 2007 through September 2008. Although the original study focused primarily on decision making regarding breast reconstruction, important themes regarding support needs and concerns were ubiquitous across interviews. Therefore, a separate qualitative analysis was conducted to systematically analyze these emergent themes using thematic analysis [26]. Initial transcripts were reviewed by the authors, who developed an initial set of codes, which were modified and elaborated into a set of key domains and themes through the constant comparative method. Support groups, family of origin support, and partner support were three key domains that emerged from the data (see Table 1 for domain themes and subthemes). Themes regarding breast reconstruction decision making have been published elsewhere [27]. Pseudonyms were used to protect patient privacy.
Results Participants The sample was composed of 13 women who ranged in age from 29 to 56 years and identified predominantly as lesbian and White. All participants reported at least ‘some college’ education; eight reported holding a graduate or professional degree. While participants’ median total annual family income was $70–89,999, there was a diversity in range. Seven participants were involved in a ‘long-term committed relationship’, five were single, and one was divorced from her long-term female partner. Participants’ cancer stage ranged from zero (noninvasive breast cancer) to IIIB, with nine participants affected with early stage (0–II) breast cancer, three with stage III or higher, and one who reported that she was never informed of her stage. The median time since mastectomy was 17 months Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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Table 1. Domains and related themes and subthemes Domains
Themes
Table 3. Participant age, cancer stage, and relationship status Age (years)
Cancer stage
Janice Sara Helen Amy June Maura Dana Maria Cyndie Caroline
36 29 52 48 52 53 49 56 37 42
III IIB I 0/DCIS IIIb I II Unknown I II
Jeannie Rebecca Jessica
47 37 52
III 0 IIIB
Subthemes Pseudonym
Support groups Effects of demographics on comfort level Benefits
Shortcomings
• Age • Type/stage of cancer • Sexual orientation • Received support • Giving support • Identification with others • Meeting others • Lack of lesbian/bisexual/queer awareness • Judgment/pressure • Did not feel safe • Mismatch
Partner support group Family support Levels of involvement
Negotiating family dynamics
• Tangible support • Emotional support • Patient supporting family • Exacerbating dysfunction • Overcoming dysfunction
Relationship statusa • Married • Partnered • Partnered • Divorced • Partnered • Partnered • Single • Widowed • Single st • 1 cancer occurrence: single nd • 2 cancer occurrence: partnered • Single • Relationship dissolution st • 1 cancer occurrence: single nd • 2 cancer occurrence: married
a Same-sex marriage was not legally recognized in New York State at the time of the interviews; however, some participants were married elsewhere or recognized their relationship as a marriage, regardless of state law.
Partner support Tangible support
Lack of support
Shift in dynamics Emotional support
• Attending appointments/ arranging logistics • Advocate/caregiving • Break up • No partner/single • Inconsistent support • Lack of acceptance of new physical self • Increased support • Acceptance of new physical self • Silent support • Caring/nurturing
(range = 7–82 months). Eleven of the 13 underwent breast reconstruction, and two did not (see Tables 2 and 3 for sample demographics).
Support groups Twelve of the 13 women reported participating in support groups. The data reveal a complex range of experiences, with SMW’s multiple social locations—including sexual Table 2. Sample demographics N = 13 Mean age Age range Race/ethnicity Relationship status
Income
Copyright © 2013 John Wiley & Sons, Ltd.
43.9 29–56 92% White, European-American 62% Jewish 54% long-term committed 38% single 8% divorced 15% 50,000
orientation, cancer stage, relationship status, and age— defining their support group needs. Many participants perceived a lack of lesbian/bisexual/ queer awareness among members of predominantly heterosexual support groups, which decreased their comfort level and the benefits they felt they could derive from the group. Despite these challenges, some participants found such groups beneficial, provided that group members shared other important commonalities. Janice (lesbian/ bisexual, age 36, Stage III) explained that she identifies more as a ‘young survivor than a lesbian survivor’. Although she would have preferred to attend a lesbian support group, the age range of group members was significant in her choice of support group. Conversely, Sara (lesbian, 29, Stage IIB) attended a support group for young adults with cancer of varying stages and types, and reported that she felt she had little in common with the other group members and found it difficult to talk. She wanted ‘something more substantial’ in terms of support and was excited about the possibility of finding an SMW-specific support group. Some participants noted challenges in support groups with members diagnosed at different cancer stages. Helen (lesbian, 52, Stage I) reported that after hearing from women with Stage IV cancer, ‘none of the rest of us want to talk because we feel that anything we say is going to sound stupid compared to the fact that they already have metastasis.’ Amy (lesbian, 48, Stage 0/DCIS) described her reaction when support group members with later stage cancer called her lucky: ‘You know what, it didn’t feel lucky.’ June (lesbian, 52, Stage IIIb) noted that although she felt isolated at her stage of treatment and wanted support from others with metastatic cancer, being in a cancer support group with lesbians and bisexual women took precedence. Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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Dana (lesbian/bisexual, 49, Stage II) attended a support group at her workplace, where she did not disclose her sexual orientation because she ‘just didn’t feel safe’. She found her group to be helpful and expressed conflict about disclosure issues: ‘I definitely thought about that frequently. Was that really important to me? And I thought it really wasn’t […] I’m a woman, just like them, and live in this society […] with all the social norms of being a woman, so in large respect my sexual orientation had nothing to do with it.’ Several participants reported positive experiences in SMW-specific support groups. Helen reported attending a lesbian support group and noted increased cohesiveness among group members: ‘…we discussed our relationships with our partners. We discussed our sex lives. We discussed everything, so we became a lot closer […].’ Maria (lesbian, age 56, Stage unknown) noted that she was not aware of any SMW-specific cancer support groups but that she would have liked to join one. Several participants who were in relationships during their treatment spoke about issues they encountered when seeking support groups for their female partners. Most participants complained of a lack of availability of partner support groups. Many participants noted that when partner support groups were available, they felt what was offered might not provide a safe or helpful environment for their same-sex partners. Some participants, such as Sara, feared that in a partner support group, her female partner might be ‘discriminated against, and feel uncomfortable, or less accepted’ and be ‘automatically outed and vulnerable’ as the only woman in a group of husbands.
Family of origin and partner support Many participants described the ways in which their families of origin and partners interacted with them in order to provide tangible and emotional support, as well as instances in which participants supported their families. Although most participants described their families as ‘supportive’, their interview data revealed a more complicated and nuanced picture. Seven participants described ways in which their relationships with partners were either disrupted or dissolved over the course of their treatment, and ways in which their relationships improved when current and former partners increased their support. Younger single women often relied on their parents as their main supporters. For example, Cyndie (lesbian, age 37, Stage I) temporarily moved into her elderly parent’s home during treatment and described her family (parents and siblings) as a primary source of support. Despite feeling ‘grateful’ of their care, she revealed her concerns about the limits of their support when she disclosed in the interview that neither her parents nor several of her siblings knew her sexual orientation. Copyright © 2013 John Wiley & Sons, Ltd.
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Caroline (bisexual, 42, Stage II) discussed the contrast in attending doctor appointments with her mother during a previous cancer experience versus with a partner during her current episode. Although she appreciated her mother’s support, attending appointments with her mother was an acute reminder of the support she did not have from a partner. Women who were single and middle aged or older reported the least support overall. Some reported that they relied on siblings or former partners as their main supporters. Although not a common theme, one participant relied on her adolescent daughter for support. Dana, who was single throughout her diagnosis and treatment, described her deep disappointment in her brothers, her primary family support, whom she experienced as ‘pulling away rather than coming towards me’, during her treatment and recovery. Jeannie (lesbian, 47, Stage III) had broken up with her long-term partner a year before her diagnosis and was under-employed and without insurance when she began treatment. Of her parents, who lived some distance away from her, she explained, ‘they were there to listen and they love me’ but were ‘really not able to help me make some of my harder choices’. For Maria, who was widowed and disabled, multiple minority stressors exacerbated her challenges in securing support. She described herself as ‘isolated’ in general and during her cancer treatment. She felt alienated from her Puerto Rican community as a result of her sexual orientation and disconnected from the LGBT community. She was the sole study participant who had not participated in a support group of any kind. Seeking emotional and tangible support from former partners was a common theme among single women. Rebecca (lesbian, 37, Stage 0) reported that her ex-partner provided a great deal of emotional support throughout her treatment, noting, ‘[…] We had been together for fourteen years and I was chatting about everything with her.’ Seeking emotional and tangible support from former partners tended to be most common among single women who had previous long-term relationships. It is not within the scope of current study to compare the experiences of single SMW and heterosexual women; however, the current study’s data do highlight a unique aspect of SMW’s experience in that they might have an avenue of support in their former partners that may be less available to heterosexual women. Five participants who had partners at the time of their cancer treatment noted that their relationships were disrupted during the course of treatment, and two reported that their relationships ended. Three reported that they were able to navigate these shifts in dynamics when partners increased their support. Caroline explained that before her diagnosis, she and her partner were thinking of separating, however, they decided to stay together because of the diagnosis. She explained, ‘It was a little Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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hard for both of us to kind of shift gears and say, “This is on the forefront now and figuring out our relationship is going to have to wait.” ’ Jessica (lesbian, 52, Stage IIIB) was in the process of ending a 23-year relationship and looking for a place to live before her diagnosis. Once diagnosed, she and her partner decided that she would continue living in the house they owned together until after the treatment. While some participants received support from partners despite relationship disruption, others did not. Amy expressed that her partner distanced herself from the relationship during her treatment, and the relationship eventually ended. Amy explained that her partner’s brother had recently died, and she wondered if her partner had distanced herself because the prospect of another loss was too difficult to take. Rebecca noted that she made reconstruction decisions based on the assumption that she and her partner of 14 years would stay together. She explained, ‘I wasn’t at all concerned about what is it going to be like to go out dating without breasts and without even having any nipples and having these two big scars across my chest.’ Rebecca stated that their relationship ended during the course of her treatment. While many participants’ relationships were disrupted by cancer, some participants reported that their partners provided strong emotional and tangible support. Amy noted that, despite growing emotionally distant, her partner actively sought out doctors, and scheduled and took her to appointments. Janice reported that her partner was a ‘quite assertive’ advocate; that she ‘assessed the situation’ and interacted directly with the nursing staff to ensure that Janice felt comfortable with their care. Some participants noted that their partners supported them by accepting their post-treatment bodies. Caroline noted that her partner never expressed dislike for her body, and felt that being in a relationship with a woman gave her ‘an edge over heterosexual women’ in terms of quality of partner support.
Discussion The purpose of the current study was to better understand the experiences of support groups and family of origin and partner support in SMW. Consistent with previous research [15], this study found that some SMW may prefer SMW-specific cancer support groups and experience discomfort and isolation in predominantly heterosexual groups when they perceive a lack of lesbian/bisexual/ queer awareness [28]. A Canadian study [28] reported that SMW were reluctant to join predominantly heterosexual support groups because of expectations of homophobia. While none of the participants in the current study reported resisting joining groups for that reason, several reported feeling uncomfortable coming out in predominantly heterosexual groups, and one woman left her group Copyright © 2013 John Wiley & Sons, Ltd.
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after coming out because she felt excluded. Consistent with the current research, several studies have reported that SMW may experience increased comfort and significant psychological benefits from SMW-specific cancer support groups [17,25]. According to previous research, some SMW may experience support groups as emotionally encouraging even when the group does not recognize their sexual orientation [15]. In the current study, while sexual orientation was a significant factor in determining some women’s comfort in support groups, others did not mention sexual orientation or noted that other identities (e.g. age and cancer stage) were equally or more important. Thus, while the importance of sexual orientation should be acknowledged in cancer care, so should the intersectionality of multiple identities in order to treat the whole person and avoid stereotyping. In addition, many participants complained of a lack of availability of partner support groups of any kind, consistent with other studies [15,28]. In the current study, reliance on family of origin as one’s primary support varied by participants’ age and relationships status. While younger, single women tended to rely on family of origin as their main source of support, participants who were middle aged and older were less likely to do so. This is foreseeable, as younger adults are more likely to have parents and siblings who are alive and able to provide such support. When family of origin or partners were not available, participants sought support from friends and former partners. The flexibility in relationship roles enabling former partners to provide support can be seen as a strength of the SMW population. This additional social support may aid in SMW cancer patients’ emotional resilience despite the many challenges they face. Single women, particularly those middle aged and older, appeared to have the least support overall and described more challenges in garnering both emotional and tangible supports than participants who had partners to rely upon. These stressors may be exacerbated for women with multiple minority statuses as a result of disability, immigration, or poverty. Indeed, lower socioeconomic status has also been linked to higher depression scores among SMW breast cancer survivors [29]. Many participants reported relationship disruption or dissolution during the course of their illness. At the time of data collection, federal marriage equality did not exist, and only one participant reported being legally married to her partner. Some participants’ experiences may demonstrate how institutional barriers to marriage imposed by the recently overturned Defense of Marriage Act may have made SMW’s relationships more vulnerable than many heterosexual marriages in the context of a stressor such as cancer. Without marriage equality, there is less structural support for relationships in the time of challenge. Indeed, legal marriage has been found to provide Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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protection from anxiety in SMW with breast cancer [29], and strong partner support in general has been linked to lower disruption of the couple’s sexual relationship [11,20]. However, institutional and social barriers, which persist in many parts of the USA and globally, can make accessing the full benefits of partner’s support more challenging for SMW [4,15,23]. Further research is warranted to examine the impact of access to marriage on psychosocial and medical outcomes in cancer.
Recommendations, limitations, and conclusions Because the sample was younger than the median age for breast cancer diagnosis [30], and predominantly White, majority Jewish, and living in New York City—one of the largest and most diverse gay-friendly cities in the world—the current study’s findings may not be directly generalizable to other groups. Further research is warranted to explore the experiences of SMW who are also racial and/or ethnic minorities or disabled, as SMW with multiple minority statuses may be more disconnected from resources within the mainstream SMW community. These women are likely underrepresented in the sample, given that participants were recruited from mainstream SMW-specific breast cancer support organizations, newsletters, and online discussion boards. Finally, family of origin and partner support may look different for SMW across time and place depending on issues such as attitudes towards same-sex relationships and marriage equality policies. The methodology of the current study precludes drawing conclusions about the support needs of SMW in comparison with those of heterosexual women. However,
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findings suggest that some SMW may perceive their support needs as differing from those of heterosexual women. Greater efforts should be made in cancer care to acknowledge the intersectionality of identities, including sexual orientation, which may influence patients’ experiences of support groups. The data suggest that single women, in particular, may benefit from increased support during cancer—a need that could be addressed in SMW-specific support groups. It is important to note that training is available to support therapists and lay health advisors develop awareness and cultural competence regarding LGBT health issues through organizations such as the National LGBT Cancer Network [31]. Sexual minority women with cancer continue to encounter multiple institutional and social barriers that prevent them from accessing many of the social supports that heterosexual women have traditionally benefitted from during illness. Preliminary evidence of the effects of these barriers has been documented in previous research [29] and is further exposed by the current study. Despite multiple challenges, many participants displayed significant courage and resilience in seeking alternatives and making the best of accessible resources. Further research is warranted to document the disparities in cancer care experienced by SMW in order to support policy changes to protect this relatively understudied and invisible population.
Conflict of interest The author(s) declared no potential conflicts of interests with respect to the authorship and/or publication of this article.
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Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
Support needs and resources of sexual minority women with breast cancer Laurie B. Paul1*, Dulcinea Pitagora1, Brienne Brown2, Adrian Tworecke1 and Lisa Rubin1 1 2
The New School for Social Research, Clinical Psychology, New York, NY, USA Seton Hall University, Counseling Psychology, South Orange, NJ, USA
*Correspondence to: The New School for Social Research, Clinical Psychology, New York, NY, USA. E-mail: [email protected]
Received: 15 May 2013 Revised: 14 October 2013 Accepted: 21 October 2013
Abstract Objective: The current paper utilizes qualitative methods to better understand the support needs and resources of sexual minority women (SMW) breast cancer patients. Methods: Thirteen semi-structured interviews were conducted with SMW, who were recruited from community-based organizations and had undergone mastectomy for treatment of breast cancer. Interviews explored support needs and resources. Data were analyzed using thematic analysis. Results: Three key domains emerged: support groups, family of origin support, and partner support. Participants emphasized the value of cancer support groups and resources tailored to SMW while stating that other dimensions of identity or experience, particularly age and cancer stage, were also important. Participants noted the dearth of social support resources for same-sex partners. Family of origin and partners were typically participants’ primary sources of tangible and emotional support; participants often engaged in protective buffering to mitigate caregivers’ distress. Single women faced the greatest challenges in terms of support needs and resources. Former partners were often key sources of support. Conclusions: SMW and their partners have many shared and unique support resources and barriers. Heteronormativity that is implicit in the structure of support resources can serve as a barrier to support for SMW and their partners. Flexibility in relationship roles enabling some SMW to include former partners as significant means of support may be a source of resiliency, particularly for unpartnered SMW cancer patients. Support needs and resources of SMW are best understood through an intersectionality framework that considers sexual orientation, relationship status, cancer stage, age, healthcare access, and other important identities and experiences. Copyright © 2013 John Wiley & Sons, Ltd.
Introduction In a recent report on the health of lesbian, gay, bisexual, and transgender (LGBT) people, the Institute of Medicine [1] called for increased research investigating the role of social structures and support on the lives and health of LGBT populations. Understanding the support needs and resources of sexual minority women (SMW) affected with breast cancer is crucial, particularly given evidence of elevated rates of breast cancer among SMW as compared with heterosexual women [2]. SMW encounter institutional and social barriers that can impede access to many of the social support resources that heterosexual women benefit from during illness [3–6]. These barriers are particularly salient, as some types of social support may impact psychological and physical health outcomes among people affected by cancer and other major illnesses [7–10]. Although research indicates little or no difference in sexual minority and heterosexual women’s overall depression and anxiety in response to newly diagnosed breast cancer [11], researchers have identified noteworthy points of resilience among SMW. Compared with heterosexual women, SMW tend to report fewer problems during treatment with body Copyright © 2013 John Wiley & Sons, Ltd.
image [11], a tendency to be less fatalistic [11], less cognitive avoidance [11], greater likelihood to express anger [11], and greater social support from partners and friends [11]. The current study draws on qualitative interviews with a sample of SMW with breast cancer to identify sources of social support, support needs, and support barriers in this patient population. Social support is defined as a social network’s provision of psychological and material resources intended to benefit an individual’s ability to cope with stress; it can be provided by a partner, child, other family members, friends, caregivers, or community social groups [12]. A number of different types of social support—including support groups and family of origin and partner support—have been found to impact breast cancer patients’ experiences.
Support groups Breast cancer patients who participate in support groups may experience fewer emotional disturbances and traumatic stress symptoms [13], and improvements in energy [12,14], quality of life, affect, and coping [8]. However, research on SMW indicates that support groups comprised predominantly of heterosexual women can remind SMW of their ‘otherness’ [15].
Support needs and resources of sexual minority women
SMW may experience stress related to disclosing sexual orientation or feel excluded by heteronormative values and assumptions. Multiple sources have reported that SMWspecific cancer support groups are rare [15,16]; yet, SMW who participate in these groups report an increased level of safety and comfort [6], better psychological adjustment, including reduced emotional distress, thought intrusions, and avoidance, and improved coping [11,17].
Family of origin and partner support Greater psychological adjustment among breast cancer patients has been shown in women with stronger family of origin cohesiveness [18]. However, research suggests that SMW tend to be in less frequent contact with, feel less close to, feel less at ease talking to, and seek less help from family of origin as compared with heterosexual women [11,19]. Diminished family of origin support may be related to rejection and alienation due to their sexual minority status, and as research indicates, SMW may be more likely to rely on friends and partners for support [11]. Strong partner support among cancer patients has been linked to improved outcomes post-treatment, including fewer sexual difficulties [20,21] and less anxiety, depression, and maladjustment to cancer [22]. However, institutional barriers—such as those resulting from a lack of legal recognition of same-sex relationships—can result in limited access to health insurance and benefits of the Family and Medical Leave Act [4], and restrictions on hospital visitation and medical decision-making rights for partners [23]. Furthermore, in a study exploring perceptions of the medical care system, SMW reported feeling less satisfied with the extent to which providers included their same-sex partners in treatment discussions [11]. These institutional and social barriers create significant challenges for SMW in the context of a major stressor such as cancer and may prohibit SMW from receiving the full benefits of partner support. The few studies specifically examining psychosocial concerns of SMW with breast cancer suggest that some of their support needs may differ from those of heterosexual women, albeit in ways that are not yet fully understood [3,11,17,24,25]. The current paper seeks to clarify SMW breast cancer patients’ support needs and resources by focusing on their experiences in support groups and with partner and family of origin support.
Methodology The sample was composed of 13 lesbian and bisexual women living in New York City who underwent single or bilateral mastectomy for the treatment of breast cancer. Participants were recruited through a newsletter of a New York City-based organization serving lesbians, bisexual women, and transgender people affected by cancer and their caregivers, and through an online community board Copyright © 2013 John Wiley & Sons, Ltd.
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for women affected by breast cancer that includes an ongoing discussion thread on lesbian, bisexual, and transgender topics. Interested participants contacted the senior author to schedule their interviews. Inclusion criteria specified that participants self-identify as lesbian, bisexual, gay, or queer. Participants who reported having been diagnosed and treated for breast cancer self-referred to the study. The interview protocol addressed support needs and resources, as well as questions concerning decision making about breast reconstruction. Inclusion criteria specified that participants’ breast cancer treatment incorporated single or bilateral mastectomy after implementation of the Women’s Health and Cancer Rights’ Act in 1999. In-person interviews lasting approximately 1 h were conducted by Dr. Lisa Rubin (n = 8) or by one of three female doctoral students involved in her research group. Interviews took place in a private room in a university building or in an alternative private location chosen by the participant. Interviews were audio-recorded, and participants were compensated $50. Data were collected from July 2007 through September 2008. Although the original study focused primarily on decision making regarding breast reconstruction, important themes regarding support needs and concerns were ubiquitous across interviews. Therefore, a separate qualitative analysis was conducted to systematically analyze these emergent themes using thematic analysis [26]. Initial transcripts were reviewed by the authors, who developed an initial set of codes, which were modified and elaborated into a set of key domains and themes through the constant comparative method. Support groups, family of origin support, and partner support were three key domains that emerged from the data (see Table 1 for domain themes and subthemes). Themes regarding breast reconstruction decision making have been published elsewhere [27]. Pseudonyms were used to protect patient privacy.
Results Participants The sample was composed of 13 women who ranged in age from 29 to 56 years and identified predominantly as lesbian and White. All participants reported at least ‘some college’ education; eight reported holding a graduate or professional degree. While participants’ median total annual family income was $70–89,999, there was a diversity in range. Seven participants were involved in a ‘long-term committed relationship’, five were single, and one was divorced from her long-term female partner. Participants’ cancer stage ranged from zero (noninvasive breast cancer) to IIIB, with nine participants affected with early stage (0–II) breast cancer, three with stage III or higher, and one who reported that she was never informed of her stage. The median time since mastectomy was 17 months Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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Table 1. Domains and related themes and subthemes Domains
Themes
Table 3. Participant age, cancer stage, and relationship status Age (years)
Cancer stage
Janice Sara Helen Amy June Maura Dana Maria Cyndie Caroline
36 29 52 48 52 53 49 56 37 42
III IIB I 0/DCIS IIIb I II Unknown I II
Jeannie Rebecca Jessica
47 37 52
III 0 IIIB
Subthemes Pseudonym
Support groups Effects of demographics on comfort level Benefits
Shortcomings
• Age • Type/stage of cancer • Sexual orientation • Received support • Giving support • Identification with others • Meeting others • Lack of lesbian/bisexual/queer awareness • Judgment/pressure • Did not feel safe • Mismatch
Partner support group Family support Levels of involvement
Negotiating family dynamics
• Tangible support • Emotional support • Patient supporting family • Exacerbating dysfunction • Overcoming dysfunction
Relationship statusa • Married • Partnered • Partnered • Divorced • Partnered • Partnered • Single • Widowed • Single st • 1 cancer occurrence: single nd • 2 cancer occurrence: partnered • Single • Relationship dissolution st • 1 cancer occurrence: single nd • 2 cancer occurrence: married
a Same-sex marriage was not legally recognized in New York State at the time of the interviews; however, some participants were married elsewhere or recognized their relationship as a marriage, regardless of state law.
Partner support Tangible support
Lack of support
Shift in dynamics Emotional support
• Attending appointments/ arranging logistics • Advocate/caregiving • Break up • No partner/single • Inconsistent support • Lack of acceptance of new physical self • Increased support • Acceptance of new physical self • Silent support • Caring/nurturing
(range = 7–82 months). Eleven of the 13 underwent breast reconstruction, and two did not (see Tables 2 and 3 for sample demographics).
Support groups Twelve of the 13 women reported participating in support groups. The data reveal a complex range of experiences, with SMW’s multiple social locations—including sexual Table 2. Sample demographics N = 13 Mean age Age range Race/ethnicity Relationship status
Income
Copyright © 2013 John Wiley & Sons, Ltd.
43.9 29–56 92% White, European-American 62% Jewish 54% long-term committed 38% single 8% divorced 15% 50,000
orientation, cancer stage, relationship status, and age— defining their support group needs. Many participants perceived a lack of lesbian/bisexual/ queer awareness among members of predominantly heterosexual support groups, which decreased their comfort level and the benefits they felt they could derive from the group. Despite these challenges, some participants found such groups beneficial, provided that group members shared other important commonalities. Janice (lesbian/ bisexual, age 36, Stage III) explained that she identifies more as a ‘young survivor than a lesbian survivor’. Although she would have preferred to attend a lesbian support group, the age range of group members was significant in her choice of support group. Conversely, Sara (lesbian, 29, Stage IIB) attended a support group for young adults with cancer of varying stages and types, and reported that she felt she had little in common with the other group members and found it difficult to talk. She wanted ‘something more substantial’ in terms of support and was excited about the possibility of finding an SMW-specific support group. Some participants noted challenges in support groups with members diagnosed at different cancer stages. Helen (lesbian, 52, Stage I) reported that after hearing from women with Stage IV cancer, ‘none of the rest of us want to talk because we feel that anything we say is going to sound stupid compared to the fact that they already have metastasis.’ Amy (lesbian, 48, Stage 0/DCIS) described her reaction when support group members with later stage cancer called her lucky: ‘You know what, it didn’t feel lucky.’ June (lesbian, 52, Stage IIIb) noted that although she felt isolated at her stage of treatment and wanted support from others with metastatic cancer, being in a cancer support group with lesbians and bisexual women took precedence. Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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Dana (lesbian/bisexual, 49, Stage II) attended a support group at her workplace, where she did not disclose her sexual orientation because she ‘just didn’t feel safe’. She found her group to be helpful and expressed conflict about disclosure issues: ‘I definitely thought about that frequently. Was that really important to me? And I thought it really wasn’t […] I’m a woman, just like them, and live in this society […] with all the social norms of being a woman, so in large respect my sexual orientation had nothing to do with it.’ Several participants reported positive experiences in SMW-specific support groups. Helen reported attending a lesbian support group and noted increased cohesiveness among group members: ‘…we discussed our relationships with our partners. We discussed our sex lives. We discussed everything, so we became a lot closer […].’ Maria (lesbian, age 56, Stage unknown) noted that she was not aware of any SMW-specific cancer support groups but that she would have liked to join one. Several participants who were in relationships during their treatment spoke about issues they encountered when seeking support groups for their female partners. Most participants complained of a lack of availability of partner support groups. Many participants noted that when partner support groups were available, they felt what was offered might not provide a safe or helpful environment for their same-sex partners. Some participants, such as Sara, feared that in a partner support group, her female partner might be ‘discriminated against, and feel uncomfortable, or less accepted’ and be ‘automatically outed and vulnerable’ as the only woman in a group of husbands.
Family of origin and partner support Many participants described the ways in which their families of origin and partners interacted with them in order to provide tangible and emotional support, as well as instances in which participants supported their families. Although most participants described their families as ‘supportive’, their interview data revealed a more complicated and nuanced picture. Seven participants described ways in which their relationships with partners were either disrupted or dissolved over the course of their treatment, and ways in which their relationships improved when current and former partners increased their support. Younger single women often relied on their parents as their main supporters. For example, Cyndie (lesbian, age 37, Stage I) temporarily moved into her elderly parent’s home during treatment and described her family (parents and siblings) as a primary source of support. Despite feeling ‘grateful’ of their care, she revealed her concerns about the limits of their support when she disclosed in the interview that neither her parents nor several of her siblings knew her sexual orientation. Copyright © 2013 John Wiley & Sons, Ltd.
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Caroline (bisexual, 42, Stage II) discussed the contrast in attending doctor appointments with her mother during a previous cancer experience versus with a partner during her current episode. Although she appreciated her mother’s support, attending appointments with her mother was an acute reminder of the support she did not have from a partner. Women who were single and middle aged or older reported the least support overall. Some reported that they relied on siblings or former partners as their main supporters. Although not a common theme, one participant relied on her adolescent daughter for support. Dana, who was single throughout her diagnosis and treatment, described her deep disappointment in her brothers, her primary family support, whom she experienced as ‘pulling away rather than coming towards me’, during her treatment and recovery. Jeannie (lesbian, 47, Stage III) had broken up with her long-term partner a year before her diagnosis and was under-employed and without insurance when she began treatment. Of her parents, who lived some distance away from her, she explained, ‘they were there to listen and they love me’ but were ‘really not able to help me make some of my harder choices’. For Maria, who was widowed and disabled, multiple minority stressors exacerbated her challenges in securing support. She described herself as ‘isolated’ in general and during her cancer treatment. She felt alienated from her Puerto Rican community as a result of her sexual orientation and disconnected from the LGBT community. She was the sole study participant who had not participated in a support group of any kind. Seeking emotional and tangible support from former partners was a common theme among single women. Rebecca (lesbian, 37, Stage 0) reported that her ex-partner provided a great deal of emotional support throughout her treatment, noting, ‘[…] We had been together for fourteen years and I was chatting about everything with her.’ Seeking emotional and tangible support from former partners tended to be most common among single women who had previous long-term relationships. It is not within the scope of current study to compare the experiences of single SMW and heterosexual women; however, the current study’s data do highlight a unique aspect of SMW’s experience in that they might have an avenue of support in their former partners that may be less available to heterosexual women. Five participants who had partners at the time of their cancer treatment noted that their relationships were disrupted during the course of treatment, and two reported that their relationships ended. Three reported that they were able to navigate these shifts in dynamics when partners increased their support. Caroline explained that before her diagnosis, she and her partner were thinking of separating, however, they decided to stay together because of the diagnosis. She explained, ‘It was a little Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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hard for both of us to kind of shift gears and say, “This is on the forefront now and figuring out our relationship is going to have to wait.” ’ Jessica (lesbian, 52, Stage IIIB) was in the process of ending a 23-year relationship and looking for a place to live before her diagnosis. Once diagnosed, she and her partner decided that she would continue living in the house they owned together until after the treatment. While some participants received support from partners despite relationship disruption, others did not. Amy expressed that her partner distanced herself from the relationship during her treatment, and the relationship eventually ended. Amy explained that her partner’s brother had recently died, and she wondered if her partner had distanced herself because the prospect of another loss was too difficult to take. Rebecca noted that she made reconstruction decisions based on the assumption that she and her partner of 14 years would stay together. She explained, ‘I wasn’t at all concerned about what is it going to be like to go out dating without breasts and without even having any nipples and having these two big scars across my chest.’ Rebecca stated that their relationship ended during the course of her treatment. While many participants’ relationships were disrupted by cancer, some participants reported that their partners provided strong emotional and tangible support. Amy noted that, despite growing emotionally distant, her partner actively sought out doctors, and scheduled and took her to appointments. Janice reported that her partner was a ‘quite assertive’ advocate; that she ‘assessed the situation’ and interacted directly with the nursing staff to ensure that Janice felt comfortable with their care. Some participants noted that their partners supported them by accepting their post-treatment bodies. Caroline noted that her partner never expressed dislike for her body, and felt that being in a relationship with a woman gave her ‘an edge over heterosexual women’ in terms of quality of partner support.
Discussion The purpose of the current study was to better understand the experiences of support groups and family of origin and partner support in SMW. Consistent with previous research [15], this study found that some SMW may prefer SMW-specific cancer support groups and experience discomfort and isolation in predominantly heterosexual groups when they perceive a lack of lesbian/bisexual/ queer awareness [28]. A Canadian study [28] reported that SMW were reluctant to join predominantly heterosexual support groups because of expectations of homophobia. While none of the participants in the current study reported resisting joining groups for that reason, several reported feeling uncomfortable coming out in predominantly heterosexual groups, and one woman left her group Copyright © 2013 John Wiley & Sons, Ltd.
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after coming out because she felt excluded. Consistent with the current research, several studies have reported that SMW may experience increased comfort and significant psychological benefits from SMW-specific cancer support groups [17,25]. According to previous research, some SMW may experience support groups as emotionally encouraging even when the group does not recognize their sexual orientation [15]. In the current study, while sexual orientation was a significant factor in determining some women’s comfort in support groups, others did not mention sexual orientation or noted that other identities (e.g. age and cancer stage) were equally or more important. Thus, while the importance of sexual orientation should be acknowledged in cancer care, so should the intersectionality of multiple identities in order to treat the whole person and avoid stereotyping. In addition, many participants complained of a lack of availability of partner support groups of any kind, consistent with other studies [15,28]. In the current study, reliance on family of origin as one’s primary support varied by participants’ age and relationships status. While younger, single women tended to rely on family of origin as their main source of support, participants who were middle aged and older were less likely to do so. This is foreseeable, as younger adults are more likely to have parents and siblings who are alive and able to provide such support. When family of origin or partners were not available, participants sought support from friends and former partners. The flexibility in relationship roles enabling former partners to provide support can be seen as a strength of the SMW population. This additional social support may aid in SMW cancer patients’ emotional resilience despite the many challenges they face. Single women, particularly those middle aged and older, appeared to have the least support overall and described more challenges in garnering both emotional and tangible supports than participants who had partners to rely upon. These stressors may be exacerbated for women with multiple minority statuses as a result of disability, immigration, or poverty. Indeed, lower socioeconomic status has also been linked to higher depression scores among SMW breast cancer survivors [29]. Many participants reported relationship disruption or dissolution during the course of their illness. At the time of data collection, federal marriage equality did not exist, and only one participant reported being legally married to her partner. Some participants’ experiences may demonstrate how institutional barriers to marriage imposed by the recently overturned Defense of Marriage Act may have made SMW’s relationships more vulnerable than many heterosexual marriages in the context of a stressor such as cancer. Without marriage equality, there is less structural support for relationships in the time of challenge. Indeed, legal marriage has been found to provide Psycho-Oncology 23: 578–584 (2014) DOI: 10.1002/pon
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protection from anxiety in SMW with breast cancer [29], and strong partner support in general has been linked to lower disruption of the couple’s sexual relationship [11,20]. However, institutional and social barriers, which persist in many parts of the USA and globally, can make accessing the full benefits of partner’s support more challenging for SMW [4,15,23]. Further research is warranted to examine the impact of access to marriage on psychosocial and medical outcomes in cancer.
Recommendations, limitations, and conclusions Because the sample was younger than the median age for breast cancer diagnosis [30], and predominantly White, majority Jewish, and living in New York City—one of the largest and most diverse gay-friendly cities in the world—the current study’s findings may not be directly generalizable to other groups. Further research is warranted to explore the experiences of SMW who are also racial and/or ethnic minorities or disabled, as SMW with multiple minority statuses may be more disconnected from resources within the mainstream SMW community. These women are likely underrepresented in the sample, given that participants were recruited from mainstream SMW-specific breast cancer support organizations, newsletters, and online discussion boards. Finally, family of origin and partner support may look different for SMW across time and place depending on issues such as attitudes towards same-sex relationships and marriage equality policies. The methodology of the current study precludes drawing conclusions about the support needs of SMW in comparison with those of heterosexual women. However,
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findings suggest that some SMW may perceive their support needs as differing from those of heterosexual women. Greater efforts should be made in cancer care to acknowledge the intersectionality of identities, including sexual orientation, which may influence patients’ experiences of support groups. The data suggest that single women, in particular, may benefit from increased support during cancer—a need that could be addressed in SMW-specific support groups. It is important to note that training is available to support therapists and lay health advisors develop awareness and cultural competence regarding LGBT health issues through organizations such as the National LGBT Cancer Network [31]. Sexual minority women with cancer continue to encounter multiple institutional and social barriers that prevent them from accessing many of the social supports that heterosexual women have traditionally benefitted from during illness. Preliminary evidence of the effects of these barriers has been documented in previous research [29] and is further exposed by the current study. Despite multiple challenges, many participants displayed significant courage and resilience in seeking alternatives and making the best of accessible resources. Further research is warranted to document the disparities in cancer care experienced by SMW in order to support policy changes to protect this relatively understudied and invisible population.
Conflict of interest The author(s) declared no potential conflicts of interests with respect to the authorship and/or publication of this article.
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