Abstract
Patient–clinician communication and experiences of lesbian, gay, bisexual, transgender, and queer (LGBTQ+) older adults, particularly lesbian and bisexual (LB) women, in health care settings have historically been fraught with challenges, including discrimination and lack of inclusivity. This qualitative study, employing a community-based participatory research approach, aimed to explore the experiences and recommendations of LB older women and their chosen care partners in the Deep South. Two focus groups conducted over Zoom revealed seven recurring themes and three sub-themes, highlighting crucial aspects of health care delivery. Themes included the importance of initial interaction, collaboration with patients, effective communication, extended patient–doctor time, equitable treatment, training on bedside manner and self-awareness, and addressing disparities within the health care system. Findings underscore the significance of patient-centered care, shared decision-making, and recognition of patient values in improving health care experiences and outcomes for LGBTQ+ older adults, particularly LB women. Findings highlight the crucial role of initial interaction in fostering trust and cooperation, collaboration in decision-making processes, and allocating adequate time for comprehensive care delivery. Effective communication strategies, including thorough explanation of medical processes, inclusive language, and patient-centered communication, emerged as vital components. The study underscores the significance of recognizing diverse identities and intersectional experiences, particularly for African American LB older women, and advocates for promoting inclusive health care practices to improve health equity and patient satisfaction. Implementing these insights into clinical practice and policy development can lead to more inclusive health care environments tailored to the needs of LB older women.
Introduction
Patient–clinician communication
Experiences of lesbian, gay, bisexual, transgender, and queer (LGBTQ+) older adults, including diverse populations (e.g., race and ethnicity) within the broader community, and in particular lesbian and bisexual (LB) women in health care settings historically have shown to be fraught with challenges, most significantly around discrimination, lack of inclusivity, poor patient–clinician communication, lack of acknowledgment or inclusion of spouses and partners, and failure to collect sexuality and gender identity data leading to a lack of holistic understanding of the patient.1,2 Some resulting mental health-related challenges that have been experienced are depression, anxiety, suicidal ideation, and attempts. 3 African American LGBTQ+ older adults have identified specific issues around the quality of medical care, being under-prioritized, and having to advocate for basic care. 4 Because of these barriers, which continue to affect patient care, several health disparities persist, including obesity, diabetes, chronic heart disease, and many cancers.5,6 Previous research has also identified that improved patient–clinician communication can help bridge these gaps and help address issues around health equity for LGBTQ+ older patients. 7
Intersectionality and goal concordant care for LGBTQ+ older adults
We have experienced in the past decade minor improvements in inclusive, goal-concordant care for LB older women; however, each patient’s unique intersectional identities must be incorporated into their care. 8 The importance of goal-concordant care cannot be overstated; if patients receive care that runs counter to their wishes, or their wishes are not established during the trajectory of their illness, patients may face serious harmful outcomes related to their illness. In addition, both patients and families may experience lower quality of care and less communication which may negatively affect the overall health care experience.9,10 Research on communication between clinicians and diverse LGBTQ+ patients has identified several areas of concern that continue to merit attention. 11 Health care professionals who identify and acknowledge the multiple identities of LGBTQ+ older adult patients—including intersections of race, ethnicity, socioeconomic status, region, and ability—and construct care plans based on patient needs have positive interactions with these patients and those whom patients choose to include in their care (e.g., spouses, partners, chosen family). 12 On the contrary, health care professionals whose understanding of their diverse LGBTQ+ older patient populations and patient needs are lacking, often fail to provide equitable, goal-concordant care or develop positive relationships with their patients. 13 Recognizing important aspects of a patient—such as whom they consider important in their lives and what they want from a health care practitioner—as well as adjusting communication and creating an inclusive environment can improve all aspects of care. Perceived support, positive communication, and equity allow LGBTQ+ older patients to avoid barriers to care, which in turn may affect their experiences during their time in the health care system. 8 In addition, to ensure health equity for LGBTQ+ older women of diverse intersectional identities, it is critical to recognize the history of discrimination faced by LGBTQ+ communities and how it has affected attitudes toward health care. 14
Importance of honoring patient perspectives
In the era of heightened accessibility to health information facilitated by the internet, there is a noticeable shift toward individual accountability and the endorsement of personalized medicine. This transformation aligns with a growing demand for patient-centered care, cultural humility, active patient participation, and empowerment, 15 all of which are deemed crucial for the future of high-quality health care by the National Academy of Medicine, previously the Institute of Medicine. 16 Critics argue that the prevailing paternalistic approach to patient care overlooks patient preferences, fostering dependency (e.g., deferring to the health care professionals without questioning any recommendations). In contrast, a more empowered patient approach could grant older LGBTQ+ individuals greater control over their lives, enabling better integration into society and the workforce.15,16 Adding an intersectional lens to the issues around preferences for African American primary care practitioners and for better cultural understanding than health care professionals of other races and ethnicities allows for a greater understanding of the needs and preferences of African American LGBTQ+ women.
Inclusion of black voices in health care research
Recent research has focused on the perspectives of Black individuals within the health care system 17 as well as provided suggestions as to how to increase diverse perspectives in research.18,19 Here has also been research that has explored clinicians’ perspectives about racism in health care. 20 With the acknowledgment of worse health outcomes for Black patients than their white counterparts, other research has highlighted the importance of taking the perspective of Black patients within the health care system to decrease the deleterious effects of racial bias. 21 Further, researchers and research participants have called for the increased inclusion of Black perspectives in cancer research in the hopes of achieving more generalizable information to be implemented in treatment.19,22
How do LGBTQ+ populations make health care decisions?
Patient-oriented care, grounded in respect for patients’ preferences, needs, and values, emphasizes interaction on equitable terms. 23 This fosters shared decision-making, a pivotal concept in patient empowerment, patient participation, and the culmination of patient-centered care.24,25 For diverse LGBTQ+ patients, research has shown a critical need for clinicians to engage patients in health care decisions, paying close attention to patients’ and loved ones’ beliefs, values, and preferences for care. LGBTQ+ older adults from racially and ethnically diverse backgrounds have noted their reluctance to engage with health care professionals who do not engage in collaboration with patients and thus fail to establish and build trust, a critical concept in decision-making. 26 Shared decision-making assumes that patients are well-informed about therapeutic options and their potential effects on preferred outcomes. This enables patients to actively engage in discussions with health care providers, ensuring treatment decisions align with their personal expectations and values, such as uniqueness and autonomy. Research has shown historical challenges for African American older adults stemming from assumptions by health care professionals that patients lack understanding of medical or clinical information and have limited knowledge of their health outcomes. African American patients feel they may also receive less advanced care based on their race as compared to White counterparts, and while the majority of LGBTQ+ individuals, regardless of race or ethnicity, report experiences with poor treatment by health care professionals, African American LGBTQ+ individuals attribute this treatment to their race as well as their sexuality or gender identity. 27
A review delving into patient values identified seven themes: uniqueness, autonomy, compassion, professionalism, responsiveness, partnership, and empowerment. These values pertain to the individual patient, the expected behavior of health care professionals, and the interaction between patients and health care professionals. 28 Despite these advancements, individuals with chronic illnesses remain heavily reliant on technical medical expertise. Lack of understanding and insight by health care professionals into patients’ experiences, including compassion and responsiveness, may lead to mistrust, feelings of abandonment, isolation, or alienation. 29
Patients with chronic diseases often grapple with existential struggles as they attempt to make sense of their illnesses, sometimes resulting in self-blame. The perception of being a “bad patient” and taking personal responsibility for lifestyle choices can adversely impact their quality of life. 30 Effective communication and understanding between patients and health care professionals are crucial to mitigate these negative effects. 31 Identifying potential disparities between patients’ health care values and what they receive is essential. 32 These discrepancies may stem from differences in prioritizing values between health care professionals and patients, as making sound treatment decisions involves not only scientific evidence but also value judgments. 33
Methods
Design
This descriptive qualitative study employed focus groups to understand the experiences of the participants. We used a community-based participatory research (CBPR) approach wherein community members from the LGBTQ+ community collaborated with academic health care researchers to address health disparities.14,34 CBPR effectively develops and implements community-focused and led studies and seeks to identify improvement in health outcomes for the population. 35 This study is the first in a planned multi-phase approach to ultimately provide training to health care providers to improve the lives of the community members through the suggestions and perspectives of those community members. This research was about what the community members knew and needed.
Participants and recruitment
We partnered with a Community Advisory Board (CAB) which guided the team in all aspects of the project. Ten female-identifying LGBTQ+ older adults comprised the CAB drawn from seniors’ groups in Alabama and Georgia. CAB members lived in the Deep South, identified as either African American/Black or White, and had been patients or caregivers for someone living with serious illness. CAB members participated in 12 meetings. Prior to initiating the focus groups, the CAB met 12 times to create recruitment materials for the study, agree upon the IRB-approved consent form, design the interview guide, and define the strategy for recruitment of participants. Focus group interviews were conducted with LB women living with serious illness and their chosen care partners. All participants lived in the Deep South, identified as women, identified as either African American/Black or White, were at least 50 years of age, and had been either a patient or chosen caregiver for an individual living with serious illness. Focus group facilitators were members of the same sub-group (African American/Black or White) to build trust and encourage open discourse during the interviews. 36
Data collection
The CAB and the academic research team constructed a nine-question, semi-structured interview protocol, and two separate focus groups were conducted over Zoom. The focus groups were composed of 10 White women and 7 Black women, respectively. Additionally, 16 of the women identified as lesbian, and one identified as bisexual. There is evidence for the benefit of conducting online focus groups with marginalized or geographically remote populations, in particular when the research question(s) are sensitive. 37 Each focus group met either four or five times for two hours, allowing all participants the opportunity to voice their opinions, share their experiences, and provide deep, meaningful content for each interview question.
Data analysis
Focus group recordings were transcribed verbatim. Transcribed interviews were imported and coded using Delve Software. We used reflexive thematic analysis to generate initial themes, and researchers followed a semantic and latent approach 38 to create themes identified from the explicit meaning of the interview data. 39 Two raters separately reviewed and coded the data which was then discussed to determine agreement until consensus was reached. To ensure the derived themes accurately reflected the intentions of the CAG and authentically represented the participants’ experiences, the findings were iteratively shared with both groups. Thematic analysis results were presented incrementally, fostering focused discussions on each theme with the CAG and focus group members and incorporating their feedback on language and interpretation. This iterative process enhanced the trustworthiness of the study’s findings. 40 An audit trail and memos were maintained throughout.
Methodological integrity
We established trustworthiness and purposeful implementation of reflexivity, in particular, discussing each coder’s analysis and process (e.g., naming of codes, memoing, theme generation, mind mapping), which aided in establishing reliability, transferability, and validity. 38 Trust was also established through continued engagement with the CAB in order to best understand their perspectives and process, as recommended by Lincoln and Guba, 41 Erlandson et al., 42 and Morse. 43 We recruited from several states within the Deep South in order to engage in site triangulation and because CAB members were represented within multiple communities. We kept a detailed description of all data gathering and documented how such contexts influence data analysis and interpretation in order to conform to transferability expectations. We maintained an audit trail and kept journal entries 44 as well as reflective journals for reflexivity. 38 All measures of trustworthiness were maintained through a shared drive to which all research team members had access to be able to see what each person’s thought process was and how decisions were made. This helped aid us in our peer debriefing discussions.
Rationale for study location and population
According to the latest data, 45 the South continues to have the highest percentage of LGBTQ+ people. Data show nearly 36% of the nation’s adult LGBTQ+ population lives in the South, representing more than 5 million individuals. Despite the South being home to one in three LGBTQ people, having among the most racially and ethnically diverse populations, and communities ranging from some of the largest cities in the United States to many rural enclaves, 45 the Southern region of the United States currently has the most hostile policy climate for LGBTQ residents; the South has fewer positive LGBTQ laws than any other region and more harmful laws than any other.46,47 Although racism is pervasive in all parts of the United States, the South’s history of slavery, 48 lynching, 49 and racism 50 perpetuates systemic and personal racism in all of life arenas, including in health care. 51
Just over half of Black LGBT adults live in the US South, 52 and in reality, race is a key factor that defines the US population’s health, economic state, and freedom. 45 If we are to understand health disparities in groups that have been oppressed on multiple levels, such as LGBT African Americans, we have to begin by recognizing and acknowledging the existence of multiple intersecting identities. 53 A study on LGBT well-being at the intersection of race assessed whether LGBT people of color differ from white LGBT people in several areas of socioeconomic well-being and health. 54 In terms of socioeconomic well-being, many key differences were identified, including that more Black LGBT adults experienced economic insecurity, a higher percentage had a household income of less than $25,000, were more likely to be unemployed, and experience food insecurity (especially pronounced in Black LGBT women), a higher percentage experienced food insecurity, and higher percent living in low-income households (even higher percent among Black LGBT women). A higher percentage of Black LGBT experienced significant financial stress, with almost ¾ not having sufficient money to make ends meet, nearly ½ having experienced a major economic crisis, and ¼ were laid off from a job in the past year. Differences between Black LGBT and white LGBT were also found on several key health indicators including a higher percentage of Black LGBT being diagnosed with depression (even higher percentage among Black LGBT women) and significantly greater odds of being diagnosed with serious health conditions. In terms of access to care, Black LGBT women are more likely not to have health insurance; more Black LGBT individuals have Medicaid as their primary insurance. LGBT adults reported being worried that their sexual orientation or gender identity would affect the quality of health care they received. Although both Black and White LGBT reported experiences with everyday discrimination, a slightly higher percentage of Black adults reported experiencing this. A large proportion of Black LGBT adults also reported experiencing victimization, including 60% reported being threatened with violence (44% had been physically or sexually assaulted, and 43% experienced robbery or destruction of property). The Black LGBT sub-population was found to be more in need of or impacted by policy and service interventions. 54
Results
The thematic analysis of 18 participants’ responses revealed 7 recurring themes and 3 sub-themes, as represented in Table 1. These themes encompassed various aspects of health care delivery, including initial interaction, collaboration with patients, effective communication, extended patient–physician time, equitable treatment, training on bedside manner and self-awareness, and addressing disparities within the health care system. Tables 2–4 present quotes from each of the specific recommendations from the participants. The following are descriptions and discussion of these themes, providing illustrative quotes from our participants.
Recommendations for Health Care System
Themes 1 Through 3
Theme 4: Effective Communication in Health Care
Themes 5 Through 7
Importance of inclusivity, starting at initial interaction
The analysis revealed that an inclusive health care environment, beginning with the initial interaction, is crucial for providing quality care to older LB women. Participants emphasized the need for health care professionals to demonstrate respect, cultural sensitivity, and recognition of diverse identities. The establishment of trust and cooperation was seen as vital in fostering effective patient–provider relationships.
Be willing to collaborate with patient
Collaboration between health care professionals and older lesbian and bisexual women emerged as a key element in improving health care outcomes. Participants emphasized the importance of involving patients in decision-making processes and tailoring treatment plans to their specific needs and preferences. Active collaboration was seen as promoting patient empowerment and improving treatment adherence.
Physician and caregiver being able to spend more time with the patient
Participants expressed the importance of health care professionals having sufficient time to engage with older lesbian and bisexual women. Extended appointment times were seen as crucial for building rapport, understanding patients’ medical histories, and addressing their emotional and psychological needs. This theme highlighted the significance of allocating adequate time for comprehensive care delivery.
Effective communication in health care
Participants discussed the importance of effective communication and described what that looks like through the sub-themes identified.
The first is a Thorough Explanation of the Medical Process, where participants highlighted the significance of health care professionals offering thorough explanations of diagnoses, treatment options, and potential side effects. Clear and comprehensive communication was essential in ensuring patients’ understanding, facilitating informed decision-making, and enabling active participation in their health care journey.
They also suggested clinicians Speak to Everyone in the Room, speaking to the importance of health care professionals addressing not only the patient but also their partners, family members, and caregivers. Participants emphasized the need for inclusive language and involving everyone present in discussions and decision-making processes. This approach fostered a sense of support and inclusivity within the health care setting.
Finally, participants suggested that the delivery of the information was important through Patient and Accessible Communication. Participants stressed the need for patient and accessible communication strategies to meet the diverse needs of LB older women. Health care practitioners were encouraged to use language that was clear, understandable, and culturally sensitive. The creation of safe spaces for open discussions and the active engagement of patients in their care were seen as vital components of effective communication.
Treat each person equitably
Participants emphasized the need for equitable treatment regardless of sexuality. They advocated for the elimination of biases and prejudices within health care settings, promoting fair and unbiased care for all patients. Treating each person equitably was viewed as a fundamental principle for improving the overall health care experiences of LB older women.
Emphasize good bedside manner and self-awareness at the training level
Participants highlighted the importance of health care professionals receiving training on good bedside manner and self-awareness. This training was seen as essential for fostering empathy, cultural competence, and sensitivity to the unique needs of LB older women. The emphasis on self-reflection and awareness aimed to address and minimize personal biases in health care interactions.
Bridge the gap of disparities
Participants emphasized the need to address disparities within the health care system to ensure equitable access and outcomes for LB older women. Collaborative efforts between health care professionals, policymakers, educators, and community leaders were recommended to develop targeted interventions and policies. The goal was to reduce barriers, improve access to care, and address the unique health care needs of this population.
Discussion
In the current health care landscape, calls for patient-centered care16,55–57 that also incorporates cultural competence abound. 58 This approach to patient care underscores essential communication skills, awareness of overarching cultural and social issues, and universal health beliefs, necessitating the recognition and negotiation of diverse communication styles, decision-making preferences, family dynamics, and addressing issues like sexuality, gender, mistrust, prejudice, and racism. 59 This approach is also aligned with feedback given by participants in this current study who indicated the importance of knowing and honoring your audience and not making assumptions based on possible internalized stereotypes or previous interactions with other patients.
Available research indicates mixed findings in regard to LGBTQ+ patient comfort and encouragement in sharing with health care professionals.60–64 A systematic review of patient needs and experiences in palliative care, including communication between clinicians and health care professionals, indicates culturally competent communication significantly influenced patients’ feelings that their beliefs, experiences, and preferences were welcomed by the professionals. This indicated that clinician behavior was influential in either impeding or enhancing patient involvement, including disclosure of sexuality and gender identity in the consultation in terms of asking questions and sharing their perspectives. 2
LGBTQ+ health disparities
It is well known that LGBTQ+ patients globally face disparities in care1,2,7,65,66 such as heteronormative constructs, issues with disclosures, and challenges communicating with health care professionals who do not have adequate education or training in working with LGBTQ+ populations. 66 Our study identified several issues around equity, inclusivity, communication, collaboration, and self-awareness in clinicians that may enhance the quality of care and support for LB older women which mirror current experiences of these populations, in particular around intersectional identities.4,67 The lack of a standard of care curated specifically for LB older women continues to affect the care experience of this patient population; thus, practicing mindfulness around the type of communication, the way partners and other chosen caregivers are included, and willingness to collaborate with patients is tantamount in creating a safe and patient-centered space for LB older women patients.
Because this population has experienced care tailored traditionally to a cisgender, heteronormative White population, it is not unexpected they may approach interactions with health care professionals with a degree of skepticism. Our findings reflect previous research suggesting inclusivity should originate at the first encounter and clinicians should develop strategies based on cultural humility to address issues around discrimination, implicit bias, and stigmatization of diverse LGBTQ+ patient populations. 12 Health care professionals should strive to create an environment of safety, trust, respect, and cooperation and must include chosen care partners during the initial visit. Prior findings indicate that health care professionals struggle with knowing how to initiate a conversation around sexuality or gender identity, 7 and this issue is also evidenced in our study; however, providing training and education around creating an inclusive environment for LGB older adult patients may help alleviate some of those concerns.7,12 Consistent with prior studies, participants felt less invisible when their clinicians made time to engage and acknowledge patients’ decision-making to empower the patient and their chosen care partners as well as made time to know them as a patient with needs related to identifying as a lesbian or bisexual older woman. 68
Inclusion of African American voices
African American LB older women participants provided a further voice to previously identified barriers around patient–clinician communication, collaboration, and decision-making. 69 Our findings also support previous literature positing that multiple social identities (e.g., race, sexuality, gender identity, education, and socioeconomics) overlap within an individual’s lived experience, reflecting compounding, interconnected areas of both privilege and oppression at the social-structural level including racism. 53 In health care interactions, our participants identified that being African American, older, and female may have affected the information they were given, whether the issues they voiced were believed, and whether their decisions and requests were honored. These findings mirror those found in previous literature on perceived discrimination from health care professionals around avoidance of traditional health care environments based on perceived discrimination by health care professionals. 70
The findings of the current study support previous literature encouraging the inclusion of historically excluded voices in health care 71 underscoring the importance of patient-centered care that is culturally relevant to all patients. Our Black participants’ recommendations on increasing the number of medical professionals who represent them in race, ethnicity, sexuality, gender identity, and culture also support research emphasizing more professional intersectional representation in multiple areas of medicine, including both clinical environments and research. 72 This also underscores research noting a need to increase the number of Black individuals who participate in clinical research so the default knowledge of medicine isn’t based on White bodies. 73
Health equity implications
The findings of this thematic analysis underscore the importance of promoting inclusive health care practices for LB older women. By recognizing the significance of inclusivity, collaboration, effective communication, extended patient–physician time, equitable treatment, bedside manner, self-awareness, and addressing disparities, health care systems can enhance the quality of care and support for this underrepresented population. Implementing these findings into clinical practice and policy development can foster inclusive health care environments that meet the unique needs of LB older women, leading to improved health outcomes and overall patient satisfaction.
Footnotes
Acknowledgment
The authors would like to acknowledge the invaluable contribution of their Community Advisory Board and all focus group members; the authors could not have done this project without them.
Authors’ Contributions
S.L.: Co-PI of study, wrote introduction, wrote methods, analyzed data, wrote results, contributed to results and implications, and wrote conclusion. K.V.: wrote introduction, wrote methods, contributed to results and implications, and edited the article. R.E.: Co-PI of study and mentored project and the article.
Ethical Approval
This study was approved by the Institutional Review Board at the University of Alabama at Birmingham (IRB-300004696), and all data were deidentified. All participants gave written informed consent to participate in the study and provided written consent prior to focus group interviews.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This project was made possible by the funding provided by the Palliative Research Enhancement Project at the University of Alabama at Birmingham.
