Communication about sexual orientation and gender between clinicians, LGBT+ people facing serious illness and their significant others: a qualitative interview study of experiences, preferences and recommendations

Overview

Three main themes were generated: (1) creating positive first impressions and building rapport; (2) enhancing care by actively exploring and explaining the relevance of sexual orientation and gender identity; and (3) visible and consistent LGBT+ inclusiveness in care systems. Exemplary quotes are presented for each theme, with additional quotes from across the populations sampled in online supplemental 2.

Theme 1: creating positive first impressions and building rapport

Some routinely used terminology and practices can feel excluding to LGBT+ people. Using appropriate terminology was important for all stakeholder groups. For clinicians, this was underpinned by fear of offending. Although positive experiences were described, many service users shared negative experiences, often linked to incorrect assumptions, which caused distress and unnecessary emotional labour.

[T]hey’ve quite often asked if [my partner’s] my husband or just assume, err ‘Oh your husband let me in’ and I said ‘Oh I haven’t actually got a husband’ (laughter) and they said ‘Oh the man.’ I say ‘No that’s not a man, that’s a lady.’ Yeah, so I’ve had to explain that situation quite a few times. (Patient, lesbian female, cisgender, in her 50s)

Incorrect assumptions about LGBT+ identities negatively impact relationships with clinicians and force LGBT+ people to decide whether to correct the clinician or allow the assumption to stand. Either choice can provoke anxiety and undermine trust.

If I’d said, ‘And, is your partner working? Is he working?’ to a woman, […] I mean I’m very conscious not to, […] that would be one of those hiccups because the patient might just choose to answer, ‘No they’re not,’ and avoid giving gender but would take that mental note of [pause] you know, ‘She’s assumed I’m heterosexual’ you know and whatever emotion that stirs up for them. The ‘Do I— [pause] Is it safe to disclose or not?’ You know that, that constant ‘Do I have to come out? Do I want to come out?’ (Nurse, in her 50s)

In response to these challenges, participants across the stakeholder groups described simple ways to achieve inclusive communication.

Using neutral language

All three populations advocated avoiding heteronormative and cisnormative assumptions. An effective approach was to use neutral language until relationships and identities are established. For example, using neutral references to gender (eg, ‘they’) avoids assumptions about sexual orientation or gender identity.

… a lot of the time the hospital sends letters to the GP and it’ll be like ‘I met this lovely young lady’ and that just really annoys me […] that’s not who I am, and I feel like it springs up this image in people’s minds that isn’t me. So that kind of makes me uncomfortable. Those certain phrases whereas if they were just gender neutral I’d be a lot better with it. (Patient, queer non-binary person, assigned female at birth, in their 20s)

Listening and echoing terminology

Within a consultation, a clinician should use the words that patients and significant others have chosen to describe themselves and their relationships.

[U]sing the language that the patient uses, so not changing say pansexual into bisexual or, you know not making assumptions […] and if you’re gonna note it down, note it as that, if you’re gonna carry on a conversation then carry it on like that. (Patient, pansexual male, transgender, in his 20s)

Not paying attention to language can be distressing, as it implies the clinician either is not listening, or objects in some way.

[My partner] gets frustrated when people, when she says ‘partner’ and they say ‘boyfriend’ or ‘husband’ or— And I’m like ‘No it’s my girlfriend.’ Or sister, or— I’m everyone but ‘girlfriend’ when I’m there. (Significant other, lesbian female, cisgender, in her 30s)

Considering non-verbal signals

Awareness of non-verbal signals is vital to LGBT+ inclusiveness. Shifts in body positioning or facial expressions after a disclosure can be interpreted as discomfort or negativity.

[W]hen I say, ‘lesbian,’ […] I’ll look for a little micro-expression behind the eyes, a twitch or—, to see how sensitive they are to it. […] I can almost read, okay, you’ve taken that on the chin, I respect that. […] you didn’t make me feel bad. (Patient, gender non-conforming lesbian, assigned female at birth, in her 60s)

Tone, pitch and volume of speech also warrant attention, as they can be suggestive of clinicians’ views surrounding a topic.

[I]t’s not necessarily what they say, but just their tone, […] they react as if they’ve heard it all before. It’s when they ask as if it’s nothing as well […] which makes me feel more relaxed about answering it honestly. (Patient, gay male, cisgender, in his 20s)

Theme 2: enhancing care by actively exploring and explaining the relevance of sexual orientation and gender identity

Participants gave divergent views on discussing LGBT+ identities. Sensitive exploration of preferences for disclosure is an important first step.

[I]f someone’s in a relationship that they haven’t traditionally been able to be open about, then that may affect how they can communicate with healthcare, or had bad experiences with healthcare professionals in the past, or had assumptions or more old-fashioned societal rules. (Doctor, in her 40s)

While discussions about LGBT+ identities were viewed as appropriate for holistic, person-centred care, some participants saw these as sensitive topics, and clinicians sometimes avoided initiating discussions.

[Y]ou do ask sometimes like ‘How would you describe your sexual orientation?’ There are times maybe where I miss it out because I’m not sure how to ask. […] I know this is maybe not great, but where you kind of think someone might not be straight, you’re more likely to ask. But that’s not good practice. (Doctor, in his 30s)

Some clinicians considered broaching these topics a potential threat to relationships and rapport, particularly with limited time to build relationships.

[Y]ou do in hospice care but you don’t always outside of that, get that time to build a relationship where people will trust you. So, it can be very hidden and that means that people may not always get appropriate support because they haven’t talked to you about that. (Social worker, in her 50s)

While apprehension may cause avoidance of discussion, incorrect assumptions and absence of early candid discussions create subsequent difficulties for all stakeholder groups.

[T]he longer you leave it the harder it is to ask and the harder it is to tell definitely. (Significant other, gay female, cisgender, in her 40s)

Communicating relevance of LGBT+ matters as part of high-quality, person-centred care

There was widespread agreement that explaining the relevance of questions about LGBT+ identities can increase acceptability.

[I]t should come from the healthcare professionals because in a way that would inform their treatment of the person […], but also it would inform any decisions that they might make on behalf of their patient […] I think a lot of people probably in a similar way to me, probably wouldn’t necessarily know if it was safe to bring it up themselves, or whether they’re just gonna get dismissed or scoffed at. (Patient, queer non-binary person, assigned female at birth, in their 20s)

When asking patients questions about LGBT+ identities, providing a rationale for the questions, an opportunity not to respond if preferred and asking permission to record information enables informed disclosures.

I would always make it clear why I’m asking […] ‘If I’m going to look after you this is something I might need to know, to help me look after you’ […] I don’t want anyone to think that sometimes we’re prying and asking things we don’t need to know about or I might you know give the person the option of actually not answering the questions. (Doctor, in his 50s)

Respecting gender

Use of incorrect pronouns is distressing for the individual and impacts on relationships with clinicians.

It is better to ask me ‘What pronouns do you use?’ rather than call a woman a man, or address a woman with masculine pronouns […] any sort of doubt at all, don’t be afraid to ask which pronouns you’re using. (Patient, bisexual female, transgender, in her 50s)

Being referred to as ‘trans’ immediately discloses a person’s gender history. As such, clinicians need to understand how to frame questions about gender history where relevant to the care they provide.

[P]eople sort of ask ‘When did you transition?’ […] it’s a common way to talk about it but it is essentially meaningless. Because, my transition started long before any form of medical intervention happened and its gonna carry on for the rest of my life. […] Do you need to know when I started on hormones? Do you need to know about any surgeries that I’ve had? Like these are the things that I think you are trying to ask but actually you need to ask them specifically, because they are scattered over a number of years. (Patient, queer non-binary woman, transgender, in their 30s)

Additional sensitivity and attention are required in discussions about anatomy in the context of treatment.

[I]f that person has said to you ‘No I identify, as female’ […] and they’re talking about their genitals then there is nothing wrong with saying, you know ‘her penis’. (Patient, pansexual male, transgender, in his 20s)

Including significant others and sexual orientation appropriately

Participants across the samples noted the importance of identifying significant others.

If I haven’t met them but I’ve met the patient […] I’ll say ‘Who’s most important to you? Can I contact them to offer support?’ and most people are grateful for you to do that. (Social worker, in her 40s)

Understanding the depth and nature of a relationship helps clinicians to appropriately include significant others in decision-making and care.

[T]here are a lot of people who aren’t able to or don’t feel comfortable being open about their relationships […] and that may affect their symptom management or their experience of end-of-life care or the ability of their loved one to be there and supportive to them. (Doctor, in her 40s)

Both language and behaviours are important in involving significant others appropriately.

[M]y partner’s like [pause] like the kitchen team on the ward would […] try and get into conversation, ask how they are. Really include them, and so would, like the nurses and everyone […] talking, directly to them. I’ve never really had that even with sort of family members, even if they sit with me in consultation, I'll just be focused on. So, I’ve never had issues with partners or anything, ever. (Patient, lesbian female, cisgender, in her 20s)

LGBT+ patients who commence new relationships during their care may also feel anxious about involving new partners if clinicians are unaware of their sexual orientation.

I don’t have a long-term partner. And when I was dating, and I was trying to take people with me, there always was that thing of like, this is something that I’m going to have to add to my appointment. You know, that extra level of stress. Yeah. Because we’ve never had that real, like, declarative conversation - ‘This is me’ - coming out to the whole department. (Patient, gender-fluid gay person, assigned male at birth, in their 30s)

Some participants felt it beneficial to explicitly include sexual orientation in care-related discussions at the outset.

[S]exual orientation, I feel like, yeah, they should know this about me. […] If it’s recorded at that stage, at the beginning […] and then they’ve got it on record, then it can be acknowledged because then you know you’ve given that information. (Patient, gay male, cisgender, in his 20s)

Considering the environment and who else is present

Many participants described the artificial nature of drawing curtains around patients in a ward and the potential threat to confidentiality and personal safety.

I think environment is really key, isn’t it? So, like, clinic room; you’re on your own. Curtains on a ward; not soundproof. […] I might be very cool about it, and try and be very cool about it, but you don’t necessarily want to out someone to a ward of strangers that they are staying with. [pause] I think that puts them in a very vulnerable position [pause] really. Um, for any, kind of, orientation. And then, I think particularly for trans individuals. That’s a huge problem [pause] really. (Doctor, in his 40s)

Stakeholders also raised the importance of who is with a patient and recognising that patients may not have shared their sexual orientation or gender history with friends or family members present.

I wouldn’t say it outside of the hospital. I wouldn’t say it to my workmates, I wouldn’t say it to my family although I—, some of them may know already […] but they’ve never approached me directly. […] I would speak about it with health professionals yeah but not outside. (Patient, gay male, cisgender, in his 60s)

Theme 3: visible and consistent LGBT+ inclusiveness in care systems

Participants valued visible, clear and consistent LGBT+ inclusiveness within health systems and resources, while clinicians noted the lack of specific training within curricula.

[O]ne section of a one hour lecture at medical school in the genito-urinary medicine block probably where certain elements of sexual practice were touched upon. No. No more than that. […] I haven’t sought out courses in that field, so I have no other formal training. (Doctor, in his 40s)

Standardising the approach to LGBT+ related discussions

Routine inclusion of sexual orientation and gender identity in care processes may provide a structure to support clinicians.

I think when you aren’t meeting lots of LGBT+ people then, it’s not normalised to ask it, and then it becomes scary and it becomes awkward, and quite a lot of that is you as a health professional, and actually, normalising it within the NHS processes as questions that everybody is going to ask takes away the fear of offending anybody. (Doctor, in her 40s)

The use of routinely applied questions may reassure service users that they are not being selected for, or omitted from, such discussions.

I think pronouns are quite often used as a, a sort of Trojan horse to ask someone about their gender history […] ‘Ooh I think this person might be transgender.[…] we’ll ask pronouns,’ and it is very noticeable when you walk into a room and nobody asks anybody’s pronouns and then they go up to the trans person and they want to be all woke and pretend they’re a good ally; ‘What are your pronouns?’ ‘My pronouns are this’ and it’s like, cool, I can see what you’re doing there but also you were just saying like, ‘Hi trans person’. (Patient, queer non-binary woman, transgender, in their 30s)

Assumptions regarding social, cultural and religious background were identified as barriers to LGBT+ inclusive practice. Clinicians and service users described hesitation when considering discussion of sexual orientation and gender identity with people from some demographic groups, including older people, people with religious beliefs and people from black, Asian and ethnic minority backgrounds.

I know that culturally, you know sort of black and ethnic minority people, it’s very difficult for them to be gay, and it can be very, very taboo. […] we have a lot of African patients, and I would find that quite a difficult question. […] I would do it and I would ask because […] if they've got someone who appeared to be a same sex partner I’d want to know. […] you can't kind of just let that influence your practice and not do it, and be like ‘Oh okay, my belief is that African people find it very difficult to talk about being gay’, and actually they might not. They might be a person who’s really fine with it. (Nurse, in his 40s)

Establishing inclusive processes

For participants who were comfortable sharing such information, standardised recording was considered useful for avoiding repetition, assumptions and mistakes.

So it should be ‘Are you gay? Are you straight?’ ‘Yes’ that’s it. Just get it out in the open […] you don’t want to have to go through the thing every time so just get it on the record. (Patient, homosexual male, cisgender, in his 60s)

Transgender participants described systems’ inability to accurately capture gender identity (titles, names and pronouns) without amending sex on their medical record.

I said ‘Can you please call me under the name Karen (surname)?’ ‘Okay fine’ and they put a note on the notes […] and the receptionist comes to call me ‘(birth name)’ […] I totally ignored her and they called three times and I ignored them every time and then after about 10 or 15 seconds, […] I stood up, I walked over to her and said ‘I did ask’. (Patient, straight female, transgender, in her 60s)

However, service users and clinicians recognised that changing recorded sex may impact on the individual’s ability to receive appropriate healthcare resulting in a conflict between use of affirming communication and access to appropriate healthcare.

[T]he NHS has a huge, a blind spot in regards to those because those calls for scanning and screening are based on your gender in your documents. So, if you change your gender identity to female because you’re a trans woman, you won’t get called for prostate screening. (Doctor, in his 40s)

Several participants described concerns regarding information sharing within clinical teams, and the need to explain who can see that information.

[H]e was a gay man in a same-sex relationship and he didn’t want that disclosed. […] He talked to me about that but he didn’t want anyone in the team to know because he’s worried about how they might view him and he was very worried about receiving services. (Social worker, in her 50s)

Markers of inclusiveness

Markers of inclusivity (eg, LGBT+ inclusive images, indicators of relevant training delivered, inclusive policies, lanyards or badges in relevant colours) were reassuring to patients, signifying that clinicians welcome discussion of these aspects of identity.

[M]aybe just having a little bit of visibility around hospital for patients. […] you have all the pictures up of all the staff who’ve done really well, like, advertising the hospital. Like, one of them could have a rainbow lanyard on. I don’t know if they do. I haven’t actually seen. Like, just something small like that. You know. ‘‘Cause it only takes something small for people to think ‘Cool, that’s me [pause] That’s me there.’ And like, when I come next month, I know that there’s people here who are gonna understand me, on a level that I need you know, when you’re in care. (Patient, gay genderqueer person, assigned female at birth, in their 20s)

Recommendations for LGBT+ inclusiveness in clinical communication

The recommendations based on the data are presented in box 1 in line with the three main themes from study findings.

Box 1 Recommendations for LGBT+ inclusiveness in clinical communicationCreating positive first impressions and building rapport

Use neutral language , such as neutral pronouns or neutral terms for significant others . Neutral pronouns such as they/them, and neutral terms like ‘partner’ or ‘person’.

Use the words your patients use to describe themselves and significant others . If your patient refers to a significant other as ‘they/them’ or as a ‘partner’ or ‘friend’ use the same words.

Consider the messages your non-verbal signals might send . When discussing sexual orientation and gender identity, be mindful of the impact of potential non-verbal signals of discomfort. For example, your facial expression or volume/tone of voice may be suggestive of surprise/disapproval, or physical expressions such as shifts in posture/eye contact may be suggestive of discomfort.

Enhancing care by actively exploring and explaining the relevance of sexual orientation and gender identity

Create a safe space by making your questions about sexual orientation and gender relevant to care . Explicitly state why you are asking these questions, and give an option not to answer, so that patients can make an informed choice. This will vary depending on clinical specialty, for example, you may be asking to ensure they are receiving required screening invitations, or because you want to ensure patients’ significant others are being included appropriately.

Respect gender . Routinely introduce questions about gender identity and pronouns into your practice so you provide opportunity for patients to share and ensure you refer to them correctly. You could try saying ‘I want to make sure we are using your names and pronouns correctly. My name is XXXX and my pronouns are YYY/yyy. What about you?’. Only ask about gender history in private, using specific, justified questions.

Incorporate significant others and sexual orientation appropriately . Ask about significant others inclusively, with neutral language. You might say ‘So I can look after you the best I can, can you tell me who’s important to you?’. If asking about partners or spouse, avoid gendered terms (such as wife or boyfriend). Instead, you could ask ‘Do you have a partner?’.

Consider your surroundings and who else is there . Ensuring that patient preferences are known before discussing sexual orientation and gender identity where other people, including significant others, might overhear is vital.

Visible and consistent LGBT+ inclusiveness in care systems

Standardise how LGBT+ related discussions are approached . Asking LGBT+ related questions consistently, regardless of social, cultural, religious and political backgrounds, makes discussions easier and more acceptable.

Having LGBT+inclusive processes and systems in place . Digital clinical records are central structures which, when designed inclusively, can bolster care for LGBT+ people. With patients’ consent, recording sexual orientation and gender identity in clinical records avoids repetition and prevents mistakes in correspondence.

Visual markers of LGBT+ inclusiveness . LGBT+ inclusive policies, inclusive organisational materials and indicators of relevant training received should be in place, visible and easily accessed. Wearing a badge/lanyard in LGBT+ related colours shows inclusiveness and offers additional comfort.

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