Finding information for parents and carers of young trans and gender-diverse people

For most parents and carers we talked to, finding information was very important for supporting their children. In this section, you can find out what they said about:
  • Sources and quality of information;
  • Websites and social media;
  • Online support groups and forums;
  • Magazines, books and television programmes; and
  • Reading international guidelines.

Sources and quality of information

Kate talked about lack of information and how information should be easier to access.

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I don’t think there’s a lot of information so, you know, you have to go and kind of try and find stuff out for yourself. And so, I know that there is loads that I don’t know. Absolutely loads that I don’t know. And information that might be helpful to me and therefore to him and to the people around us that, you know, with my husband and my other son. So, I do think that’s a problem. I do think having to, you know, not saying things like Mermaids. They should absolutely exist, but that shouldn’t be your primary source of information. You know, if you, if you were accessing healthcare for another reason, you wouldn’t have to go to a support group or an interest group or something like that to get information. And so I do think that that is, I do think that is a difference with accessing trans care for trans kids.

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Most parents had used different sources of information including: websites, YouTube videos, books, podcasts, magazines and talking to other parents and trans people. VM said that they had ‘trawled through’ lots of websites in search of information and this had been a ‘poor’ experience. Some parents talked about wanting different types of information. VM said she didn’t want to read information and instead wanted to talk to a person.
Parents often spent a lot of time looking for information, especially when they first found out that their child was trans or gender diverse. Looking for information could be a long and ongoing process, as Adele explained: ‘it wasn’t just a one off thing… it was over sort of weeks, you know, days, weeks, months and continuing going back to it.’ Similarly, Kate said: ‘I know that there is loads that I don’t know.’
The parents and carers we spoke to had concerns about the quality of information available. Some thought that there was lack of balanced information available. For that reason, they described it as sometimes difficult to trust the information that is out there. A couple of parents talked about having access to academic research articles about trans issues and health. One of these parents thought that reading research articles can be confusing, as there are many different opinions about trans issues. Elijah talked about having to ‘shop around for a different point of view’, and Lesley also wanted to get information ‘from as broad a view as possible’.
Many also thought that there was not enough information available to them on various NHS websites and that there was need for more reliable resources online.  However, other parents and carers we spoke to thought that there is not enough information on the official NHS and Gender Identity Development Services (GIDS) websites. For some, like Kate, the information that was there was too general: ‘I tried… [NHS.UK]… And there’s not a great deal.’
For some parents and carers looking for information online was a distressing experience, because they learnt about discrimination and violence against trans people and worried that this might happen to their children.

VM said she found it upsetting to look for information online because there was a lot of information about discrimination and violence against trans people.

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Obviously, I went to lots of websites and trawled through some websites.

How was that experience?

Poor, really. Because you just read loads of things. I mean, I think Ive sat down and read lots of things. And then I got very, very upset. And then I called, I found a support group and so Ive got to talk to someone. I’m not [sighs] I’m not [laughs] I don’t want to read and assimilate information. I want to talk to someone about it. I’m better with one to one or in a group talking about it than I am about sitting down just, you know, reading stuff. So that’s, that is the way I did it, really.

So what was upsetting about finding the information online?

Oh, there was just lots of things. How long people would wait or how, I mean there is lots of stuff out there about how people trans people are discriminated against. How, you know, violence against them. There’s lots of that stuff out there. It does make you depressed. You do think to yourself, you know, this is not a life I envisaged for my child. And how tough is this going to be? So I think that’s looking online can make you do that.

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Leigh worried about a group she felt was anti-trans and the information that they give out. She shared: ‘There’s a lot of work out there that looks legit… There is a group of anti-trans adults out there who have created their own toolkits, basically saying, don’t support the child in their preferred gender, keep ’em as their birth gender, you know, and it looks very professional. And the scary thing is, if schools access this they’ll think it’s the right thing to do.’
Some parents thought that with so many different sources of information online, it was easy to find something that reflected their own beliefs and views. E said that the kind of information that somebody finds depends on their point of view on treatment for trans children. In her words: ‘It depends on your point of view as well… It depends… if you’re more critical of the kind of current direction of you know, the whole gender issue and treatment issues. And… you look at different things… People have different views on it.’

Websites and social media

Lesley talks about finding a broad range of information on trans issues.

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Where do you get information about gender identity and being trans and the care that’s there?

Where do I get it? Well, I get it from the World Professional Association for Transgender Health. Because of my professional role, I’ve been able to become a member myself. I get, I get first hand access to all of that. There are a lot of academics who are trans or trans friendly on Twitter. They often will link into their, give access to their work and because of because I’m both an academic and a student. I have access to Athens and all of the, I can get past the pay wall and not have to pay for the, to access to the journal articles and stuff like that. Plus there’s loads of really good books out there by people who are trans or—I read quite a lot of I speak to parents, other parents who’ve experienced a variety of different services as well. And I link into Mermaids and their residentials and their forums. I try to get it as from as broad a view as possible.

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The most important source of information for parents was the internet. Many parents we spoke to praised the website of the charity Mermaids. Andrew explained, ‘If you go on the Mermaid’s website, there’s lots of information’
Some parents followed and participated in debates on social media (such as Twitter) on trans issues and health. Other parents watched YouTube videos made by trans young people, listened to podcasts and read blogs about trans issues. Elijah had read some blogs written by therapists. With YouTube videos, Lesley said that she found being able to see a real person talk about their experiences of being trans very reassuring. The parents and carers we spoke to often looked for information from many internet sources to get a more ‘balanced view.’

Adele thought watching YouTube videos by trans people was informative, realistic and reassuring.

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I mean it wasn’t just a one off thing. I did it, you know, it was, it was over sort of weeks, you know, days, weeks, months and continuing going back to it. Just sort of thinking back it was the thing I ended up doing quite a lot of actually was looking at examples of other people who were transitioned, so obviously trans men, cause that was the, to kind of really understand from their own experience and their own voices. And to put my mind at rest as well that actually you being trans it wasn’t this kind of this life of you know, misery or bullying or whatever. It was really, it was really, really reassuring to me as a parent to be able to see those positive stories. But also, you know, real, realistic you know, and talking about things that I wasn’t even kind of aware of. I mean there was, you know, YouTube, I ended up kind of on YouTube and I think that’s really important, because you actually see the person. It isn’t just reading something of a faceless person. And Alex Bertie YouTube videos were kind of like a godsend to me. But they were, they were really truthful as well. They were talking about the bad and the positive, but actually, you know, talking about his journey. But it was really good to see somebody who was kind of going through that, you know, a few stages ahead of where my son was. So I found that useful. I found it really difficult, I suppose, finding a lack of official resources and there wasn’t really any kind of guidance at all for parents. And I think there still isn’t, you know, really.

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Online support groups and forums

Parents and carers also got information from talking to other families online. Many said that they particularly valued finding out about other people’s experiences through online forums and support groups for parents and carers , such as the one run by the charity Mermaids. They found it helpful to read or hear about the experiences of other parents.
The forums were also a place where parents and carers could ask questions and get advice from others. Online forums provided practical information that many parents thought was less available from the official websites of GIDS and the NHS. Describing the Mermaids forum, one father (Ross) said: ‘all the information I needed was on the forums. I would ask and within ten minutes, three or four people would reply.’

Oonagh talked about a range of online sources of information that she found useful.

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I must say that the main, the main resource that’s still Mermaids and still the parents that post on the forums. So, I’m a member of the Facebook group and the forums on there are the best, the best information you can get for a practical, practical support, because you can read as much as you want on the in articles and research, but if you want practical advice on different ages of children and what’s happened to people and what’s, you can find out so much more through the forum. So I mean, they are the main support, the parents and getting to know if youve got any questions you can go and ask the other parents, you know, has anybody got any experience of this Little things like does anybody know where to get good underwear, you know, for children, trans girls, that sort of thing. There’s nothing like that anywhere, apart from asking other parents and getting recommendations, swimwear, you know, a child wants to go swimming, youve got a whole other dimension to think about. Youve got all these things to think about. If theyre confident about going in the swimming pool then theyll be, theyll like, they can go swimming. Swimming costumes is an important aspect of that to be able to do it. It’s like all these things. But you don’t get that sort of practical support anywhere else. So I would say the parent forums on Facebook are the most, on the Mermaid’s forum, are the most important place. But then if you want, if you want background information about the research that’s been done then yeah, there’s research papers. But that can be confusing as well, because youve got so many conflicting papers about and you hear things quoted that you cant necessarily rely on and so there should there are organisations like Gendered Intelligence and there’s another one, I cant remember there’s a few different organisations that you can rely on and Stonewall even you can rely on for good information. So I would go to those organisations probably first and then look at their resources of what they recommend to read.

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Lisa talks about information she got from Mermaids.

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The best information I had come from Mermaids. They had a, when I first contacted them they had a package, a sort of ready-made package of information that they sent to me. The reason why it was so helpful is because the remit was wide. It was easy to find its way around. So, it was sort of in organised in sections. It was available to me quickly, literally, I had it within a couple of hours. And it was helpful in that it signposted me to legislative provision to, you know, policy to, it was really, it was really helpful. And it gave me a really good head start in loads of different areas. And I could then take what I needed from that and develop my learning and read around whichever given subject matter was relevant to us at that time. There does tend to be a bit more information available now on the internet, but it’s kind of watered down a little bit. It seemed, but compared to any other condition’ for want of a better word that would be treated by the NHS there still is very little information, very little objective information available.

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A couple of people expressed concern about relying mainly on information from organisations like Mermaids though. Elijah said he disagreed with the organisation and felt ‘you should look at broader and different points of view.’ Richard didn’t feel that he got any new or additional information from these websites other than what he knew already. Kate felt that although Mermaids “should absolutely exist”, but that people should not have to rely on charities and support groups for information. She felt official sources such as NHS should provide more complete information.

Magazines, books and television programmes

Other sources of information about being trans or gender diversity that people talked about included magazines, books and TV programmes. Lesley found books helpful. Georgina thought the documentaries she had watched were easy to understand. Having printed copies of magazines meant she could show them to other people too.

Magazines and TV programmes were a source of information about gender identity for Georgina.

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There’s a couple of really, really good documentaries as well that I watched very early on, which really helped me to understand, not that I needed to accept, but I did need to understand what [participant’s child’s name] was going through to help him. One of them was the National Geographic which happened to come out in the January after he came out. So there were two magazines and then the company programme that Katy Corrick did and I think it was called, The Gender Revolution. So the magazines and the programme combined were really informative. There’s loads of information and detail in there about the spectrum. Different countries having different things. And it really made me realise that it’s both, is it a, are we called, Westerners, we are arent we. Our idea of gender is very different to most of the rest of the world. And that was a bit of a revolution to me, cause I was like, oh, oppression, I get it, you know [laughs]. I didn’t really understand before. I’m one of those people that doesnt really watch the news and I’m not really up on current affairs. It just confuses me and upsets me, so I just kind of ignore it. Which has meant that Ive not really, it’s passed me by this kind of stuff until now.

So those programmes and those magazines were fantastic. And I always think things that you can hold and read and look back on are really useful. The magazines were great, cause, you know, Ive still got them. And it means that I can show them to other people and say, have a quick look at this, if you’re not getting it. If I’m not explaining it right just have a quick look and see if this helps. But it was written really well, it wasnt all, it wasnt jargoned, you know. I’m not a jargony person. I don’t understand jargon. So, I found that very useful. There was also, I think there was a programme Louis Theroux did, and I think he was in America, and it was very balanced.

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Reading international guidelines

A few people talked about finding information online from countries outside the UK. This allowed them to compare things like the services and support available. One parent said she read websites and guidelines from other English-speaking countries. Elijah said he tries to avoid American websites though, as they could be quite extreme and religious in tone.
Parents and carers used the internet to find and access official guidelines from the NHS and other health services around the world and resources such as World Professional Association for Transgender Health (WPATH) standards of care.
Trans healthcare and how it is delivered is different across the world. Some people found reading trans healthcare guidelines from other countries helpful. Reading about guidelines in other countries, some parents and carers thought that the NHS model of care for trans and gender diverse children and young people was not affirming enough. Not everybody we talked to felt that way though: Elijah who does not accept his child’s gender identity, felt the NHS website material was ‘stacked very much on the affirmative side’ and should, in his view, be ‘more balanced.’

Interview 1 thought the NHS model of trans healthcare was not affirmative enough.

I started doing that and started looking at what’s been published. Started looking at guidance from the NHS and also looking at guidance from healthcare services in other countries. Looked at what American healthcare services were saying. Looked at what Australian healthcare services were saying just looked very thoroughly at what was being recommended and what was the evidence base underpinning it and kind of looked down at the small number of academic publications that were underpinning some of the recommendations and it was clear that there were different recommendations coming from different health services and so I really wanted to spend the time looking at what, why there is that difference between different health services and for me, that difference was really, really critical cause we were at a point where we had a seriously depressed child and the advice that that was available from the American healthcare system was at odds with the advice from the UK healthcare system The things that have helped me most have been clear guidance from medical professionals clear reassuring trans positive guidance from medical professionals and so particularly the, there’s a healthcare guide from the American Academy of Paediatrics which is written for parents and families and it’s written in very clear reassuring, friendly language and that resource was really useful to me and I wish there were something similar in the UK. And more recently there’s an Australian healthcare resource about for supporting trans children and adolescents. And again, it’s very trans positive, it’s very accessible and it’s very clear and it’s very affirmative.

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Getting information was important to parents and carers, as was finding sources of support.