Health Care Experiences of Lesbian Women a Metasynthesis

Marianne Snyder, PhD, MSN, RN

Lesbian women experience discrimination within the health care system that leads many to cautiously navigate a heteronormative system. This metasynthesis offers a richer contextual understanding about lesbian health care experiences. The 4 overarching themes that emerged are: (a) sizing up the provider and the environment, (b) to say or not to say: “paradoxes of disclosure,” (c) reactions to provider’s assumptions, (d) and acknowledging my partner. Lesbian women perceive their health care experiences based on the nature of the relationship with the provider. These women are more likely to seek care from health care providers who acknowledge, afﬁrm, and respect a woman’s sexual identity, cultural beliefs, and family structures. Key words: family health care, focus groups, gay, grounded theory, homosexual women, lesbian health, lesbian health care, narrative analysis, phenomenology, primary care experience, qualitative research, self-disclosure, women health care

ESBIAN WOMEN encounter many chal- ported adverse experiences. The health care L lenges when seeking quality health care. provider’s attitude toward a nonheterosexual Primary health care providers across all identity is important to lesbian women when practice settings provide primary preventive, they choose a provider.1,2,5,6 Lesbian women secondary, and tertiary health care services to view their health care experiences as either lesbian women even when they are unaware positive or negative based on the nature of the patient’s sexual orientation. Many dif- of the relationship they have with their ferent factors affect the perceptions of health provider. Other factors have been shown to care encounters between lesbian women contribute to how lesbian women perceive and their providers. In the past decade, some each health care encounter and a synthesized studies have shown that lesbian women and clearer understanding emerges through who feel free to disclose their sexual ori- the following metasynthesis of qualitative entation contribute to higher satisfaction studies related to lesbian women’s health care and adherence to care,1–3 whereas earlier experiences. research did not support this relationship.4 In Most research about lesbian women’s many of these previous studies, women who health care experiences has been quantita- encountered homophobic practitioners re- tive by design; however, the real essences of these experiences are often best captured in qualitative studies. The purpose of this meta- Author Affiliation: School of Nursing, University of synthesis is to offer an integrative/interpretive Connecticut, Storrs, Connecticut. review of 14 qualitative studies about lesbian The author has disclosed that she has no significant women’s health care experiences. When sim- relationships with, or financial interest in, any com- mercial companies pertaining to this article. ilarity exists between the studies, a metasynthesis evolves through a reciprocal process Correspondence: Marianne Snyder, PhD, MSN, RN, University of Connecticut, 231 Glenbrook Rd, Unit of translating the metaphors, meaning the 4026, Storrs, CT 06269 ([email protected]). phrases, terms, or concepts of each study into DOI: 10.1097/ANS.0000000000000226 the other.7 Through this intermingling, often

the nursing profession to assume a leader- Statement of Significance ship role among all health care providers What is known or assumed to be true to develop and educate others on more about this topic? culturally appropriate approaches to use Lesbian women continue to encounter when communicating and caring for lesbian discrimination when seeking health care women. services from providers who are insensi- During the past 5 years, findings from tive and less educated about their health several qualitative studies have shown that care needs. These women often delay lesbian women continue to receive health seeking health care if they have pre- care services from providers who are insen- viously experienced nonaffirming care. sitive and less educated about their health Many health care providers continue to care needs, while others have had more pos- practice based on heteronormative as- itive experiences compared with previous sumptions. years.5,9–12 Acknowledgment of these more What this article adds? supportive encounters suggests that for some This metasynthesis provides a broader un- lesbian women, tides of change may be occur- derstanding of factors that influence les- ring. This change might indicate that health bian women’s health care experiences. care providers are better educated about the Lesbian women form positive or neg- health care needs of lesbian women and are ative perceptions about the provider’s using more culturally appropriate approaches verbal and nonverbal communication at when caring for them. In contrast to these the first meeting and continue through- recent findings, data from studies conducted out the health care encounter. Creating during the 1980s and 1990s showed that affirming and trusting milieus in which lesbian women had predominantly negative to provide care is essential for lesbian health care encounters and attributed those women to form positive impressions of experiences to homophobia and pervasive their health care experiences. Providers heteronormative assumptions among health who extend an affirming, open-minded, care providers.13–18 and respectful presence during a visit are In the past decade, there has not been a viewed positively by lesbian women. published metasynthesis of lesbian women’s health care experiences. Stevens18 conducted an extensive review of the literature on les- a richer contextual understanding emerges to bian health care research published between extend clearer insight into the phenomenon 1970 and 1990 that included 28 studies. of interest. All of the studies were published in the Gaining clearer insight into lesbian health United States. Nineteen studies addressed les- care experiences accomplishes several aims. bians’ perceptions of their health care experi- First, it educates nursing, with its long history ences, and the remaining 9 focused on the of silence on topics of sexual and gender health care provider’s attitudes toward les- minorities about the psychosocial and phys- bian clients. Of the 19 studies about lesbian ical health care needs of this vulnerable and women’s perceptions, 12 were quantitative marginalized population.8 Next, it increases and used questionnaires, 6 used structured awareness among health care providers about and unstructured interviews, and 1 utilized the importance of creating affirming environ- both approaches. More qualitative research ments to support lesbian women who want concerning lesbian health care experiences to disclose their sexual orientation, discuss has been published outside the United States sexual health issues, or include their partner including Canada, the United Kingdom, Nor- in the health care visit. Lastly, it beckons way, Ireland, and Australia.

METHODS the United States. One study published by McNair et al5 included children of the les- Procedure bian participants; however, only data from The following online databases were participants 18 years and older were used. searched for scholarly, qualitative research Eight studies had participants who identified studies published between 2000 and 2017: as partnered or married to a woman and met Cumulative Index to Nursing and Allied the other inclusion criteria. Health Literature (CINAHL), Medline via PubMed, PsychInfo, SCOPUS, and ProQuest Dissertations and Theses. Databases’ key- Sample words used in the searches were lesbian A total of 14 qualitative studies comprised health, lesbian healthcare, gay, lesbian the sample for this metasynthesis, including women, women healthcare, self-disclosure, 300 lesbian women from 7 countries. Ev- primary care experience, family health ery study addressed lesbian health care ex- care, qualitative research, grounded theory, periences based on encounters with either a phenomenology, narrative analysis, and physician or a nurse who provided care in dif- focus groups. Hand searches were also ferent settings. Five studies were conducted conducted by referring to the references in the United States; however, only 2 were of recent studies about lesbian health care done by nurse researchers in nursing,12,19 experiences. One unpublished dissertation another was in medicine,9 sociology,20 and by Dinkle19 met the inclusion criteria. psychology.21 The study by Dinkle19 was an Inclusion criteria for this metasynthesis re- unpublished dissertation in nursing. In all, 9 quired each study to be of a qualitative de- studies were published outside the United sign and focus primarily on lesbian women’s States, 2 from New Zealand, 2 from Norway, 2 health care experiences during either a pri- from the United Kingdom, and 1 from each of mary care visit or hospitalization with or with- these other following countries: Canada, Ire- out her same-sex partner. The health care land, and Australia. Four studies conducted experience could have occurred in a health outside the United States were in nursing. care provider’s office, clinic, or hospital set- Methodological characteristics of each study ting and reflected the care provided by physi- included in this metasynthesis are shown in cians or nurses. A few studies indicated par- Table 1. Demographic characteristics of participants younger than 18 years; however, ticipants for the studies included in this meta- only data from participants who were at least synthesis are displayed in Table 2. Four dif- 18 years or older were included in this synthe- ferent qualitative research designs were used sis. This process required reading each study in these studies either separately or in com- in its entirety and just using data from partic- bination with another. Phenomenology was ipants who were identified as being 18 years the most common (n = 5),followedbyde- or older. No studies about adolescent lesbian scriptive qualitative (n = 5), grounded theory health care experiences were included. Stud- (n = 2), focus groups (n = 1), and 1 that used ies could be published in the United States focus groups and in-depth interviews (n = 1). or other countries and disciplines other than nursing. The search process resulted in 14 quali- Data analysis tative studies on lesbian health care experi- For this metasynthesis, Noblit and Hare’s7 ences in different health care environments metaethnographic approach was used to that provided care by nurses, physicians, or synthesize qualitative studies about lesbian both. The resulting sample was composed of women’s health care experiences. To ensure studies published by researchers across sev- rigor and transparency of the process, this eral different disciplines inside and outside researcher consulted with a nurse scientist

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. E4 ADVANCES IN NURSING SCIENCE/JANUARY–MARCH 2019 42 37 43 44 47 Van Manan 39 40 46 38 41 45 45 48 49 Malterud open-ended Semistructured Smith et al Design Interview Technique Data Analysis phenomenological Qualitative Research Focus groups StructuredPhenomenology SemistructuredGrounded theory Miles and Huberman Structured Streubert Grounded theoryPhenomenology Strauss and Structured Corbin Unstructured Strauss and Corbin Colaizzi States States Australia States States 2008 Medicine/the United 2009 Public health/Norway2012 Psychology/the UK2005 Descriptive Nursing/the United 20112017 Interpretive Sociology/Ireland2010 The United2008 States Anthropology/Canada Multidisciplinary/ Web-based2016 survey, Phenomenology Descriptive qualitative Nursing/New Zealand2013 Qualitative2000 Nursing/New Zealand Semistructured Descriptive Nursing/the qualitative UK2000 Unstructured Descriptive Sociology/the qualitative United 2007 Semistructured2001 Nursing/Norway Open-ended Hsieh and Semistructured Shannon Focus Nursing/the groups United Dinkins, Thomas Phenomenology Thomas Not speciﬁed In-depth, semistructured Kitzinger Unstructured Ricouer 24 22 21 10 9 5 26 11 20 Methodological Characteristics of Qualitative Studies Included in the Metasynthesis 27 25 19 12 23 Maulterud Cook James et al AuthorBarbara et al Bjorkman and YearCherguit et al Dinkle Discipline/Country Duffy Ejaife and Ho McNair et al Munson and O’Neill et al Platzer and Scherzer Spidsberg Williams-Barnard McIntyre et al Table 1.

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Health Care Experiences of Lesbian Women E5 1 Native American Anglo Indian 2 Aboriginal; 8 European; 2Asian;1Latino 2 Latinas; 2 Multiracial Not specified 6white;1Asian 8 European descent 3white;1AfricanAmerican; 67% bachelor’s/master’s, 5% unknown 1 did not complete 2 master’s degree 2master’s Not specified 11 Anglo-Australian; Not specified Not specified Some college, University studies 6 diplomas; Not specified Not specified 20 children focus groups; 2 mixed gay/lesbian group single biological mothers; 1 biological and nonbiological mother with partner; total of 8 children ages 6 wk to 4 y 80% partnered; 26% single 28% primary/secondary, 2 nonbiological mothers; 5 3 in relationship; 3 living + 50 Not specified Not specified Not specified 40s Age > to late specified Range, y Relationship Status Education Race/Ethnicity 417 23-50 24 3 partnered; 1 44-55 single 1 Not married; specified 56 partnered; 1 8 Not specified 23-47 Early 30s 4 lesbian; 2 bisexual Not specified8 5 completed Not university specified 6Not 18-21 6 lesbian; 24 Not bisexual Black specified 18-23 4 some college, 3 Not high specified school, Undergraduate students 4 white, non-Hispanic 32 24-65 Not specified1015 33-51 Partnered comothers Not specified36 Not specified 29-62 36 lesbian parents; 22 white; 6 African American; 35 7 white; 1 Welsh; 1 British; 1 16-74 23 interviewed; 10 lesbian 128 18-60 Size Sample 10 25 27 24 22 21 9 5 26 11 20 Demographic Characteristics of the Participants for Study Included in the Metasynthesis 19 12 23 et al Cherguit et al Study Barbara et al Bjorkman and Malterud Dinkle Munson and Cook Scherzer Spidsberg Ejaife and Ho McIntyre et al McNair et al O’Neill et al Platzer and James Williams-Barnard Duffy Table 2.

who has expertise in conducting qualitative each study was created and compared with research. Table 3 outlines the steps used to the other studies. This iterative process re- synthesize the data in this study. Metasynthe- vealed many similar metaphors between the sis is used to deepen our understanding of studies to support the process of reciprocal a phenomenon of interest by integrating re- translations. These translations were synthe- search findings from qualitative studies about sized to show that the whole was more than the same substantive aspect.28 The particular the sum of its parts. In essence, a metasynthe- method used to conduct the metasynthesis sis must synthesize interpretations of qualita- depends upon the purpose and end product tive research by “carefully peeling away the of the project.29 Regardless of the technique surface layers of studies to find the hearts and employed, the process of synthesizing inter- souls in a way that does the least damage to pretations of findings across studies sculpts a them.”29(p370) newer conceptualization than the original results revealed. Noblit and Hare consider reciprocal translations, meaning similarity among RESULTS study findings, a unique form of synthesis that involves translating study metaphors, in Four overarching themes emerged from other words, the phrases, terms, or con- the reciprocal translations. Table 4 displays cepts into one another because they “pro- the result of how the metaphors of the tect the particular, respect holism, and enable 14 studies were translated into each other comparison.”7(p28) and resulted in the following themes: (a) siz- The challenge lies in the ability to carefully ing up the provider and the environment, (b) balance the analysis of study metaphors to to say or not to say: “paradoxes of disclo- provide sufficient detail without losing sight sure,” (c) reactions to provider’s assumptions, of the original interpretations.7 Each study and (d) acknowledging my partner (see the was read several times to more fully under- Figure). These 4 themes (see Table 4) identify stand and identify the various metaphors to phases of a health care encounter that lesbian describe lesbian women’s health care expe- women must cautiously navigate. There is an riences. Then, a list of metaphors used in opportunity for the health care provider to

Table 3. Steps of Noblit and Hare’s Metasynthesis Process

(a) Identify a phenomenon of interest to study.7 (b) Decide what qualitative studies pertain to the phenomenon of interest.7 (c) Read the qualitative studies and repeat the process as needed to give full attention to the metaphors of each study.7 (d) Determine the interrelatedness of the selected studies by creating a list of the study metaphors and juxtapose them to make assumptions about one of 3 possible relationships between them. “(1) the accounts are directly comparable as ‘reciprocal’ translations, (2) the accounts stand in relative opposition to each other and are essentially ‘refutational’; or (3) the studies taken together represent a ‘line of argument’ rather than reciprocal or refutational translation.”7 (e) Translate the study metaphors into one another in an adequate manner to “maintain[s] the central metaphors and concepts of each account in their relation to other key metaphors or concepts in that account”.7 (f) Synthesize translations in a manner to show that the whole is more than the sum of the individual parts. There is potential for 2 levels of translations. The translations as a whole are considered 1 level. A second level of synthesis is formed when different metaphors can be incorporated into others.7 (g) Express the synthesis through text, music, video, or drama.7

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Health Care Experiences of Lesbian Women E7 ) continues ( Partner : Refused request : Partner referred to Acknowledging My for partner presence by name allowing partner into examination when requested Positive N/A Negative : Incomplete : Preconceptions, : No assumptions : Lack of negative Assumptions sexual history; asking heteronormative based questions having to justify self; was asked heterosexually focused health questions about sexual identity or history, nonjudgmental approach asking about sexual history asking direct questions comments, explicit support by provider Reactions to Provider’s Positive Negative Positive Negative : Fear, anxiety; lie : Being told lesbian : Provider facilitates Disclosure” “Paradoxes of To Say or Not to Say: about sexual activity; lie on intake form; fear abandonment after disclosure orientation is a phase disclosure process; opportunity to disclose on own Negative Positive Negative : Prejudicial : Uncertainty, : Maintaining : Open attitude, attitudes unanswered questions; attributing physical and psychological illness to sexual identity eye-to-eye contact; available relevant health information; prefer lesbian or gay practitioners; nonbiased intake forms supportive, nonjudgmental, knowledgeable about health condition and the Environment Sizing Up the Provider Positive Negative Positive Negative 9 10 Individual Study Metaphors as Linked to 4 Overarching Themes Malterud Bjorkman and Study Barbara et al Table 4.

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. E8 ADVANCES IN NURSING SCIENCE/JANUARY–MARCH 2019 ) continues ( Partner : Discriminated : Feeling invisible : Being treated as an Acknowledging My against when partner present, partner’s presence ignored and excluded due to organizational heteronormativity that did not recognize comothers equal parent; health care providers’ implicit Positive Negative Negative : Maintaining low : Assuming : Paved a path to Assumptions ) expectations of the health care system in an effort to protect self from the effect of negative experiences heterosexual identity; questioning virginity during pelvic examination; feeling violated, and raped visibility within the health care in an effortbe to role models for future lesbian parents Reactions to Provider’s Positive Negative Negative Continued : Ambivalent : Inhibited; fear : Focused on : Open disclosure, Disclosure” “Paradoxes of To Say or Not to Say: feelings at times when searching for an identity as a mother repercussions; guarded fear disparaging remarks during pelvic examination, disclose if partnered, let provider assume sexual identity self-acceptance and confidence of self within the health system; felt more accepted when they disclosed their relationship at the beginning live honestly with self; disclose when asked; identify partner on intake form Positive Negative Positive Negative : Innate fear of the : No safe zone : A perception of : Skilled health care system despite some positive experiences; anticipated prejudice and discrimination symbols—triangles; no pictures of same-sex couples in waiting room having a positive experience was often based on a comparison to the experiences of other lesbian families’ negative experiences communicator; competent, caring committed; open to diversity, affirming signs posted in office; respectful safe, private, trustworthy holistic care, can navigate the health care system limits referrals and the Environment Sizing Up the Provider Positive Negative Positive Negative 22 Individual Study Metaphors as Linked to 4 Overarching Themes ( 19 Dinkle Study Cherguit et al Table 4.

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Health Care Experiences of Lesbian Women E9 ) continues ( Partner : Feeling alone; : Inviting partner Acknowledging My vulnerable; frightened during hospitalization, refused allowing partner to stay into examination when requested; involving in care Positive N/A Negative N/A Denied a Pap test : Assuming : Being minimized Assumptions ) virginity after denying history of sexual intercourse with a man or dismissed as an individual; providers viewing sexual health as the ability to get pregnant; stereotype of black lesbians being hypersexual after denying history of sexual intercourse Reactions to Provider’s Negative Negative Negative: Continued Forced to Empowered; : Alienated; : Assumptions and : Provide an option Disclosure” “Paradoxes of To Say or Not to Say: substandard care; disclosure not treated conﬁdentially prejudices of health care providers of the patient based on race, gender, and sexual orientation ability to advocate for own health disclose, provider insists on need for pregnancy test to not disclose sexual orientation Positive: Negative: Negative Positive Negative : Patient-centered : Opportunity to health service; asking whether I want someone to stay with me during the examination disclose sexual orientation on an intake form rather than being ﬁrst asked in an interview; addressing sexual orientation when relevant to treatment and the Environment Sizing Up the Provider Positive Positive N/A 24 21 Individual Study Metaphors as Linked to 4 Overarching Themes ( 23 Ejaife and Ho Study Duffy McIntyre et al Table 4.

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. E10 ADVANCES IN NURSING SCIENCE/JANUARY–MARCH 2019 ) continues ( Nonbirth mother Partner Acknowledging My rendered invisible, excluded from decision-making withholding information, feeling vulnerable when son was hospitalized N/A Negative: Discomfort when Vulnerability Prior positive Feeling safe; more Assumptions ) encounters with health care providers were more likely to positively influence future encounters not asked about sexual orientation when provided health information; navigate with uncertainty likely to disclose when relationship with provider perceived positive enabling assumptions to prevail, resort to deception regarding relationship; feeling dishonest Reactions to Provider’s Negative: Positive: Negative: Positive: Continued Difficult to Passive approach Positive Private strategy, Disclosure” “Paradoxes of To Say or Not to Say: experiences after having disclosed sexual orientation; developed a tolerance to encountering less than ideal care predict future, positive experiences with new providers when disclosing sexual orientation choosing intentional silence to protect partner and children; disclose to promote honesty; avoid confusion; role model attitudes for children, proud approach “present a united front” forced into silence during homophobic social contexts; increased vulnerability for nonbirth mother Negative: Negative: Positive: Positive: Standard Presence of forms :Affirming, documentation focused heterosexual women that acknowledged sexual orientation across a continuum; posters about safer sex for lesbian women open-minded, respectful, and validating; convey sense of normalcy about family and the Environment Sizing Up the Provider Negative: Positive Positive: 5 Individual Study Metaphors as Linked to 4 Overarching Themes ( 25 Cook Study McNair et al Munson and Table 4.

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. Health Care Experiences of Lesbian Women E11 ) continues ( Reference to Partner Acknowledgment Acknowledging My of both women as parents without reference to one as the “daddy”; safe and comfortable with nonjudgmental health care providers sleeping with a man so that the children would know who the father is; failing to acknowledge the couple or lesbian identity Negative: N/A Positive: N/A Feeling like a Humiliated, Erode barriers, Assumptions ) provide biomedical and holistic care services, empowered to negotiate own health desexualized and discounted when health care providers assume only one member of the relationship is the parent embarrassed; judgmental, negative attitudes; questioned about sexual practices during pelvic examination Reactions to Provider’s Negative: Positive: Negative: Continued Emotionally Fear judgment Having to balance Empowered to : Disclosure” “Paradoxes of To Say or Not to Say: fully disclose sexual orientation at the ﬁrst health care encounter to avoid assumptions of heterosexuality exhausting to constantly have to decide whether or not to disclose sexual orientation to health care provider about sexual practices, marginalized, stigmatized, loss of voice vulnerability with maintaining self-esteem; awkward silences after disclosure Positive Negative: Negative: Negative: Encountering a Ignorance of Proactively sought Attentive to nurse who was not sensitive or friendly toward the lesbian couple health care professionals who were afﬁrming and sensitive to needs of lesbians; encountering empathetic staff emotional needs and well-being; feeling connected with health care provider health care provider about health needs and concerns; homophobic responses by provider and the Environment Sizing Up the Provider Negative: Positive: Negative: Positive: 26 20 Individual Study Metaphors as Linked to 4 Overarching Themes ( 27 James Study O’Neill et al Platzer and Scherzer Table 4.

Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited. E12 ADVANCES IN NURSING SCIENCE/JANUARY–MARCH 2019 Ignoring partner’s Partner Acknowledging Acknowledging My my partner presence; not introduced at antenatal classes Negative: Positive: N/A Paranoid Fear substandard Create and Conﬁdent about Provided Assumptions ) self during interactions regarding provider communication; sexual identity becoming the focus instead of pregnancy; withdrawing support after learning my sexual identity information care would occur if provider learned sexual identity perpetuate barriers to care; power struggles; physical and emotional trauma, disrespect, abuse Reactions to Provider’s Negative: Negative: Positive: Positive: Negative: Continued Keeping closeted Stressful living Being open, yet Emancipatory Disclosure” “Paradoxes of To Say or Not to Say: not overly assertive due to feelings of vulnerability, not knowing medical rights feeling; promotes a better relationship with provider secretive life; history of bad experiences; pervasive feelings of guilt, “living this lie”; distrust of medical profession prevents disclosure Negative: Negative: Positive: Positive: Noncaring Treating me as an Insensitive to my Open-mined; Asking for seeking attitudes, referring to my baby as a “donor child” “object” rather than normal human being; initially questioned about birth control having a lesbian health care provider; most encounters with midwives care; being informed about lesbian health issues sexuality; judgmental attitudes and the Environment Sizing Up the Provider Negative: Negative: Negative: Positive: Positive: 11 Individual Study Metaphors as Linked to 4 Overarching Themes ( 12 et al Williams-Barnard Study Spidsberg Table 4.

scribing lesbian women’s health care experiences. Examples of positive and negative impressions appear throughout the descriptions of each theme.

Sizing up the provider and the environment Thirteen of the studies included metaphors to suggest this theme. Lesbian women who anticipate a health care visit frequently em- ploy protective measures to help minimize adverse or uncomfortable situations during a visit. Our health care system and its providers often reinforce the barriers that vulnerable and marginalized people struggle to negotiate.20 Research has shown that a significant number of lesbian women do not seek traditional health care services because of prior negative encounters.9 Some lesbian women preferred to see a provider who was openly gay or lesbian because they believed that a heterosexual provider would demon- Figure. Patient-provider balancing of perceptions strate prejudice toward them.9 To minimize during lesbian women’s health care experiences. Les- the chance of a negative encounter, some bian women and their health care providers begin women contacted different providers’ offices forming perceptions of each other when they first to determine their receptiveness to treating meet. These perceptions continue throughout the en- 11 tire visit. Women form positive or negative percep- a lesbian patient. For example, one lesbian tions about the provider’s verbal and nonverbal com- couple who relocated to another town dur- munication when they first enter the practitioner’s ing their antepartum desired an open-minded office that continues throughout the encounter. The provider who was willing to care for them for 4 themes of this metasynthesis are represented by the the remainder of their pregnancy. They ref- blocks on the left side of the figure and represent lesbian women’s perceptions. The blocks on the right erenced a telephone directory and shared the side represent the health care practitioner’s behavior following account, “And then we just listened and communication with the women and their part- without making a concrete decision . . . be- ners when present. The point at which the patient’s cause nobody would say in a direct manner and provider’s perceptions merge creates a common that they were against it. But we listened to ground for shared understanding. their voices, and finally, we picked out a medical office.”11(p480) Women in Barbara et al’s9 demonstrate culturally affirming communi- studysharedthattheyassessedaproviderat cation and behaviors during each of these the beginning of a visit for certain nonver- phases. In synthesizing the translations, it was bal behaviors such as maintaining eye contact clear that lesbian women formed either posi- when obtaining a health history. The follow- tive or negative impressions of each visit. The ing represents a similar situation: “When I was nature of the interactions with a health care looking for a primary care physician, I would provider and the environment in which they go and hope that there would be an eye to received care influenced the women’s impres- eye interview, and the test would be, when I sion of the visit. The following descriptions came out to the doctor, what their reaction provide greater insight into the 4 themes de- was.”9(p54) Nonverbal communication also

included the appearance of the office envi- flashes, fatigue, anemia; she switched it to ronment such as posted safe zone signs, pink saying that being a lesbian had to be very triangles, or rainbow stickers to indicate an hard . . . I changed doctors.”10(p241) When affirming environment.30 Women who used the woman left the visit feeling uncertain these more proactive approaches strived to about her care or having unanswered ques- mitigate anxiety and fear before meeting a tions, she formed negative impressions about new provider. her experience. Another participant in Bjork- Lesbian women had more positive im- man and Malterud’s study shared a slightly dif- pressions of their visit when asked whether ferent perspective of her provider when she someone would be accompanying them described the following encounter: to the appointment and whether they wanted the person present during their I was very physically ill without understanding that examination.23 These practice environments I was mentally exhausted . . . doctor that I came were more patient-centered and affirming. to understood quickly that my physical illness was Providers who extended an open-minded caused by something other than a virus, and she and respectful presence during a visit were gave me a close and good follow-up. She was ac- viewed positively by lesbian women. The tually the first one to put into words emotions and following statement illustrated a sense of nor- difficult things linked to identity.10(p241) malcy for a lesbian family: “I’m [the physician] so glad I met you because I’ve never known In contrast to this experience, a woman a lesbian family before and I would have had all these terrible ideas . . . I can see you really from another study shared a different perspective on a positive experience when she love your child.”5(p98) In Scherzer’s20 study, women expressed that feeling connected explained the following story: with their health care provider was an important aspect of a positive health care en- I went to a pretty good doctor this time, she was counter. Other women positively perceived really nice . . . She actually talked more about some providers who were informed about their of my emotional things, like are you getting enough health condition and who explored the basis rest, and has anything changed . . . my menstrual for presenting symptoms rather than relating cycle had been a little funky, so she had asked me all physical and psychological illness to sexual about my sleeping habits my eating habits, and was orientation.10 Participants in Dinkle’s19 study anything new in your life, and I told her about all this new stuff, so I got to talk to her, I felt good identified the following 7 characteristics of an about that, that was good.20(p96) ideal provider: skilled communicator, competent, open to diversity, caring, committed, respectful, and created a safe and trusting In all 3 of these examples, the women iden- environment. tified either the presence or absence of an at- Women perceived the health care en- tentive provider to their concerns. In the first counter negatively when the provider made situation, the woman thought the provider prejudicial and homophobic remarks. Some very quickly assumed that her sexual orienta- women expressed concern when a provider tion was the cause of all her worries. In the was uninformed about their health needs or second scenario, the woman was receptive to seemed disinterested in them as a person.27 the idea that her mental exhaustion might be This demeanor created communication barri- linked to her sexual orientation. In the third ers between the women and their provider circumstance, the provider listened and fo- during the visit. A dramatic quote by one cused less on the woman’s lesbian identity as woman demonstrated one provider’s dismis- the basis for her presenting symptoms. This sive mannerism when she said, “No matter holistic approach made a positive impression what I wanted to bring up; migraine, hot on the woman.

To say or not to say: “Paradoxes of One woman expressed the following senti- disclosure” ment that reflected the view of other par- The paradoxical nature of self-disclosure ticipants: “It just stops seeming so bad, and or “coming out” has shown that what one you start seeing the good things. [Coming woman identifies as a positive reason to dis- out] was a really wonderful feeling, I just felt close her sexual orientation another woman really emancipated . . . in control . . . inde- 12(p133) may view as negative. All of the studies in this pendent . . . big freedom.” Women in 11 metasynthesis addressed varying viewpoints Spidsberg’s study believed that a positive ap- of self-disclosure to a health care provider. proach to self-disclosure was to be open but This range of perspectives suggests that the not overly assertive. Those who were com- “coming out” process for women is highly fortable disclosing to a health care provider individualized, and based on either previ- wanted to live their lives as openly and hon- 19,23 ous positive or negative encounters with estly as possible and to remain free of providers. A woman’s decision of what ap- the incarcerating effects of internalized homo- proach to use is influenced by her worldview, phobia. Such conviction is rooted in a strong knowing herself, and past experiences with sense of knowing oneself. health care providers.5,11,20,23,24–26 Dinkle19 The women in this sample who chose a identified 4 categories of disclosure among passive approach to disclosure were less con- the women she interviewed that included no cerned about health care providers knowing disclosure, only disclosing when asked, allow- their relationship status and sexual orienta- ing the provider to assume without verifying, tion compared with women who used pri- and disclosing by referencing the partner vate or proud strategies. In fact, some women on the intake form. Many different factors were so reticent that they did not correct er- influenced women’s decisions to disclose roneous provider assumptions. As one couple their sexual orientation, including previ- in McNair et al’s study candidly shared the fol- ous homophobic encounters, occupation, lowing belief: physical and psychosocial contexts, partner Jo: No one ever asks. They probably just assume status, and perceived social and spiritual . . . and if they assume I’m Mum [Mom] that’s fine. support.19 I don’t feel any great need to say, “Well, actually McNair et al5 found women used private, I’m not his Mum,” but . . . proud, or passive strategies when disclos- Bridget (birth mother): Because in that situation ing their sexual orientation to a health care you are, you know. provider. Lesbian women used more private Jo: Yeah, I’m his parent.5(p104) strategies when they did not believe that their sexual orientation was pertinent to the visit. In this situation, it felt safer for the couple One woman declared, “Straight people don’t not to correct the assumptions because they have to justify their story, and I don’t have understood that the nonbirth mother had no to justify mine.”5(p101) Women who used a legal right to make health care decisions con- proud strategy wanted to be honest and au- cerning the child. thentic to themselves and their children yet Lesbians describe their “coming out” as ei- realized doing so exposed them to poten- ther positive or negative depending on how tial discrimination.5 Some women echoed a their health care provider reacted after learn- proud approach in several studies of this ing this information. Women who felt unin- metasynthesis.11,12,19 hibited when disclosing their sexual orienta- 24 Often, women who were comfortable dis- tion felt empowered, whereas those who closing their sexual orientation felt more were guarded remained fearful of negative 9 emancipated and believed that this feeling repercussions by their provider. aided them in having a more positive ex- A participant in Barbara et al’s study experience with their health care provider.12 pressed her reluctance to disclose when she

said, “For a long time I would sort of lie when talking, moving around the examina- . . . when I was asked about sexual activity.” tion room while women were speaking, or 9(p53) Another woman from the same study quickly changing the subject of discussion expressed similar sentiments when she said: when the woman asked a question related to her sexual orientation.27 I mean, it’s just horrible to think that women have Some women feared being told that being to continue going to the doctor and be afraid with 10 the doctor about who they are because I think a lesbian was merely a phase. After hearing there’s just too many things that impact on us. And such a comment women felt dismissed and having that freedom, that ability to talk about who invalidated and attributed the remark to the you are is very important.9(p53) provider’s lack of understanding about sexual orientation. In other instances, women de- 5 One lesbian couple in McNair et al’s study scribed feeling abandoned by their provider had chosen intentional silence regarding dis- after they disclosed their lesbian identity. It is closure and viewed this strategy positively be- unethical for a health care provider to aban- cause they believed it protected them and don his or her patient when providing care, their children. In contrast to this silent ap- yet this occurred to one woman during an of- proach, another couple observed their life to- fice visit when she described the following gether in a more open manner. This couple dialogue: described the following health visit they had during the antenatal period: They said, “Do you think you could be pregnant?” I said, “No.” He said “Are you sure?” It got to the Ella: I think we have a charmed experience of point where he was very annoying. I said, “I am a lesbian parenting. lesbian, ok.” He turned around very upset and left the room. Then, another doctor came back and Sally: Even in the hospital we never had any prob- finished the examination.9(p52) lems whatsoever. The different pathways to disclosure are Ella: It was never a problem. fluid and do not imply that one approach Sally: We were “bang” out there straight away. is better than another. Ultimately, women chose strategies for disclosure they perceived Ella: Before the nurse even sat down in her seat, it limited their vulnerability and risk of being was like, “Hi, I’m Ella, and this is Sally. Sally is the one giving birth.” stigmatized. Lesbian women were more apt to shift between different strategies based Ella: . . . That was the spiel, and I think, really, after on past and present circumstances and their the third nurse, they all knew we were lesbians . . . value system. For most lesbian women, the 5(p103) We had heard similar stories. act of “coming out” is individualized rather Women who felt more negative or anx- than scripted and is regulated by temperance. ious disclosing their sexual orientation feared being marginalized and stigmatized by homophobic practitioners.6,9,19 Others thought Reactions to provider’s assumptions they regularly had to balance vulnerability In all of the studies, women shared ex- with maintaining their self-esteem when de- periences where they had to cope with dif- ciding to disclose.27 When a health care ferent provider assumptions during a health provider demonstrates specific impertinent visit. Most of the assumptions these women activities during an office visit, women inter- described centered on questions about mari- preted the actions as rude and thought that tal status, use of birth control, sexual history, the provider was uncomfortable discussing and habits. The manner in which providers the topic of sexual orientation. Activities that asked questions often conveyed a heteronor- lesbian women found disrespectful included mative view. When this perspective influ- shuffling papers, not maintaining eye contact ences questioning, it leaves few options for

lesbian women to respond and frequently re- this person to you?” They just didn’t make any as- sults in negative perceptions about the ex- sumptions. They asked some really basic questions. perience. In one situation, a woman felt as Every one of them surprised me . . . And it was though she had been violated during a pelvic such a joy to think that they had really taken the time to think that I wasn’t widowed or divorced, examination when she described the follow- 9(p56) ing conversation with a physician: or that I did have a partner.

One thing that he did is asked me if I was a virgin at Other women also perceived the health the time . . . and I said yes, and he said, um “well I care experience positively if the practitioner thought so, I could barely get three fingers in.” I’m refrained from making negative comments going what the fuck are you doing and why was when the women shared personal events in that . . . I didn’t feel safe at all . . . I had already theirlives.AwomaninBjorkmanandMal- been, felt like I had been raped.19(p61) terud’s study expressed how appreciative she When providers assume that a woman is was after visiting her general practitioner: sexually active exclusively with men and asks I saw my GP during a difficult period in my pri- 9,23 about birth control, or tells a woman that vate life, among other things the breakdown of a having a Pap smear is unnecessary when she relationship with a male partner, and starting a re- denies being sexually active with a man,24 it lationship with a girl. I wanted to praise the GP for leaves lesbian women feeling they have to dis- an open attitude and understanding. It was impor- close their identity when they might not feel tant for me to feel accepted and he was open about ready. Disclosure under these circumstances the issue.10(p241) often results in negative impressions of the visit. One woman had a physician who ad- vised her against having a Pap smear when Acknowledging my partner she shared the following: Seven of the studies discussed including I knew a fair amount about the HPV virus and stuff the woman’s partner during a health visit. like that. I’ve never had sex with men so I mean Women positively perceived acknowledg- that, when she [doctor] said that [I didn’t need a ment of their female partner when communi- Pap] I just kind of thought well it makes sense but cated in a professional manner. For example, I really didn’t think much more about it.24(p891) calling a partner by her name9,11 and offering the patient the option to invite her partner This example raises issues of self-advocacy into the examination,5,9,23 and validating the and the importance of lesbian women to feel role of the birth mother11 were seen as af- empowered to question provider recommen- firming measures that some providers used to dations relevant to their health. When women create safe environments for their patients. are forced to disclose their sexual orientation Women in Spidsberg’s11 study described be- under vulnerable circumstances, they are less ing in caring hands as they described positive likely to return and subject themselves to sim- experiences throughout their pregnancy. Sim- ilar negative encounters. ple gestures as shaking hands with both part- Women described positive experiences ners, and congratulating them on a healthy when they encountered practitioners who pregnancy conveyed support and validation made no assumptions and created a safe en- for both women.11 One couple was pleased vironment for them to disclose. Examples in- when the nurses in the intensive care unit cluded asking questions on the intake forms placed a heart-shaped sign on their infant that were more neutral and nonassuming. son’s cot labeled with both their names as One woman shared how joyful she was in the mother.11 In another situation, a nonbirth the following experience: mother recanted the following conversation I mean, from the very beginning with the forms, she had with the pediatrician about breast- they asked, “Do you live with someone?” “Who is feeding the baby:

Looking into my eyes he says, “are you going to was conducted in Ireland,23 similar events oc- breastfeed?” Just like that, like it was the easiest curred in the United States prior to the federal thing in the world, that both of us nursed the baby. legislation in January 2011 allowing same-sex And then he continued, “Men can breastfeed too, couples to decide who they wish to have vis- . . . it’s just not that common.” I must say, it came ited them and to make health care decisions as a shock to me, I wasn’t quite there. He was so on their behalf. Prior to this legislation, same- incredibly engaged in the thought of me breast- feeding too.11(p482) sex couples could be refused the right to visit their partner during hospitalized in the United Negative experiences resulted when States. providers ignored the woman’s partner,11 denied a request to have the partner present,9,23 discriminated against the partner when she DISCUSSION was present,19 and invalidated the role of the nonbirth mother.5 One woman described a The 4 themes to emerge from this metasyn- frustrating and deplorable experience when thesis of 14 qualitative studies offer a more the hospital staff denied her request to have comprehensive understanding of the health her partner with her in the hospital emer- care experiences of lesbian women and pro- gency department: vide direction for clinical practice and fur- But they refused to let her go back while I was be- ther research. The themes of sizing up the ing treated. And, I complained, but I was also very provider and the environment, to say or not sick at the time too. It was much harder for me to say: “paradoxes of disclosure,” reactions to be pushy about it. After the episode was over, I to provider’s assumptions, and acknowledg- received a questionnaire from the ER asking about ing my partner identify important periods my care. I let them have it about how deplorable I during a health care encounter when lesbian thought that was . . . We have each other’s health women are likely to form positive or nega- care power of attorney. But in emergency situa- tive impressions of the experience after in- tions, you don’t always carry the paperwork with teracting with their provider. With a broader you everywhere. I felt like we had to go above and understanding of factors that influence these beyond what would normally be required of people in order for me to have the support of her being women’s health care experiences, practition- by my side.9(p57) ers can use more culturally affirming communication techniques to mitigate negative per- Other women in this sample described sim- ceptions. Providers are encouraged to reflect ilar circumstances like this that left the part- on each of the themes in this metasynthesis, ner feeling insignificant and invisible. One and question whether they exhibit behaviors participant in Duffy’s study shared how iso- that contribute to negative or positive health lated and terrified she felt during a hospital- care experiences by lesbian women. ization knowing that she had no immediate Many studies have identified factors that relatives who could visit or stay with her: influence lesbian women’s health care expe- . . . I was absolutely terrified and very, very ill . . . riences and include issues regarding disclos- and I had told them that Finnesech was my partner ing sexual identify, navigating heteronorma- and put her on my form as next of kin. I was told tive assumptions, and encountering providers that she couldn’t come in with me . . . it was a very who are not well informed about lesbian frightening experience to be stuck on my own, . . . women’s health care needs.1,2,18,31–33 Results just having nurses not really wanting to treat me 23(p340) from this metasynthesis support these find- . . . let alone touch me. ings and identify circumstances when these Not having her partner present during this factors hinder or facilitate positive percep- frightening hospitalization marred any oppor- tions of provider interactions and the care tunity for the health care provider to make provided. Based on the overarching themes a positive impression. Although this study from this metasynthesis, recommendations

are offered to help promote affirming and re- is relevant to providing care, help create more spectful communication between health care affirming and less threatening environments providers and lesbian women. in which to disclose this information.10 When a woman discloses her sexual orientation to the health care provider, the practitioner’s im- Sizing up the provider and mediate nonverbal and verbal response to this the environment information is critical. If the woman perceives Creating affirming and trusting milieus in the provider’s response as negative or disre- which to provide care is essential for lesbian spectful, she is less likely to return or to dis- women to form a favorable impression of their close this information to future providers.11,27 health care experiences. Providers should In fact, some may delay future care because assess the places in which they practice and of such adverse reactions. critically reflect on the following questions. How welcoming is the environment for lesbian women? To what extent do the Reactions to provider’s assumptions reception staff and providers demonstrate af- Heteronormative assumptions continue to firming and culturally appropriate care when dominate most health care environments; interacting with lesbian patients? Are there however, providers are asked to consider the safe zone signs, posters, and literature in the implications of these assumptions during a waiting rooms to convey support for patients health care visit.9,11,27 Lesbian women are of diverse sexual orientation and gender iden- aware of assumptions made in the context tities? These actions will help lesbian women of their care; therefore, the onus of respon- perceive a safe and supportive environment sibility to not assume does fall to the health when they enter the practice environment. care provider. For example, it is preferred to ask a woman in what way she is related to whoever accompanies her to a visit and allow To say or not to say: “Paradoxes her to decide how to respond. Acknowledg- of disclosure” ing a woman’s partner is an empowering and Not all health care providers ask about affirming act for lesbian women. Health care their patient’s sexual orientation; instead, providers are encouraged to critically reflect women convey this personal characteristic on how their heteronormative perspectives themselves.9 Some women have had negative can negatively influence a lesbian woman’s experiences when disclosing their sexual ori- health care experience. entation to a provider and may be more re- Health care providers should understand luctant to share this information with a new the power shifts that occur during interac- provider. Health care providers should ask tions can result in perceived prejudice and all patients about sexual orientation on in- lead some lesbian women to delay or avoid take forms and in the context of conversa- seeking health care. Avoiding or delaying tions about sexual health,34 while remaining health care contributes to health disparities. attentive to a discussion about confidentiality Providers must also realize that some women and privacy.35 Providers who use inclusive have had previously traumatic experiences language on all intake forms and ask rather with providers. These experiences include than make assumptions about their patients hearing unprofessional comments during a are more likely to encounter lesbian women pelvic examination and feeling as though who are more comfortable sharing informa- they were sexually violated during a pap tion about their sexual orientation.2,9,10,36 smear. A lesbian woman who feels respected Practitioners who develop caring and trust- and is asked to share her health concerns ing relationships with their lesbian patients, before being questioned about her sexual and explain why knowing sexual orientation activity and the need for birth control is more

likely to trust her provider. Creating affirm- The point at which the patient’s and ing and trusting milieus in which to pro- provider’s perceptions merge creates a com- vide care is essential for lesbian women to mon ground for shared understanding, mean- believe their provider and form a positive ing there is an opportunity to engage in an impression of their experiences. These ac- affirming and respectful dialogue between tions will also help decrease vulnerability and them. Lesbian women face many barriers stigma. when they enter the health care system. They learn to adapt by cautiously navigating a health care system that is conditioned by Acknowledging my partner heteronormative perspectives. These women It is important for some lesbian women to are more likely to seek health care services bring their partner or spouse to a health care when they encounter practitioners and envi- visit. If she identifies the woman as a “friend,” ronments that affirm their sexual orientation, “partner,” or spouse as in, “she is my wife” cultural beliefs, and family structures. Prac- and requests her presence during the health titioners who are proactive and incorporate care visit, allow her. Reception staff should culturally appropriate practices when provid- also be respectful of this request. Acknowl- ing care to lesbian women help create nurtur- edging a woman’s partner is an empowering ing, patient-centered environments in which and affirming act for lesbian women. Modi- supportive relationships can flourish. Noblit fying the health care environment to convey and Hare remind us that “a meta-ethnography a more welcoming milieu for these women is complete when we understand the mean- will help decrease their vulnerability and fear ing of the synthesis to our life and the lives of of being stigmatized and marginalized. others.”7(p81)

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