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| Skills, qualities, and attributes that promoted communication between the young women and healthcare professional | Evidence in everyday language taken from the transcripts of the young women to highlight both positive and negative experiences of communication with healthcare professionals. |
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| Knowledge about DSD | Grace shared her engagement with one professional that developed over time “She has come across the worst in people and the best in people…[she was] someone who tried to explain it with very little words because the more shock you are in the less focus time you have.” Martha explained that as a result of sharing knowledge professionals “have changed the way I think about myself [by explaining it]…I see myself as more confident and more relaxed about things and I can count on the health professionals they have always had time to talk to [me] and it has always made a good change.” |
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| Being well-known to the young person | “We just had a good friendship. It wasn’t just like when you go to the doctor and you sit down and you tell him what’s wrong and they’re like - ‘ok you take this medicine and you’ll be fine’ - type of thing. It was more than that. You could sit and have a conversation with him about anything and he wouldn’t dodge or judge you” (Florence). Contrary to this experience Louise described her “worst experience was talking to someone I had just met.” Harriet explained her frustration, “you get used to the doctors and then they all change.” |
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| Active listening and good verbal skills and good nonverbal communication | Evelyn described her school nurse as “a good listener because she was the one who sorted me out” she continued to recall experiences with nurses when she had surgery, “Just their whole attitude towards you, their body language…I’ve seen adults going into hospital and they don’t use eye contact, and they are just get it over and done with stuff, but they [nurses] actually like look you in the eye and they smile at you and it’s nicer.” “They don’t interrupt you and they just sit and listen and they let you speak…ask if you have any questions, make you feel comfortable and speak to you, have eye contact with you, they tell you the same story and not mixed up stories” (Brenda).
Annie recalled that “it’s like the tone of his voice” that would scare her and [the doctor] “never asked if we’ve got any questions.”
Florence recognized times when sharing and listening were incongruous “You can tell if someone’s speaking really, really fast about something and they’re like talking, talking, talking, and then they’re like - right do you get it? You’re like - Mm yes, but really you don’t, and they’re like - right ok. Then they just keep talking. That’s how I can tell, you really don’t, and you’re not that interested.” |
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| Trust | “[That professional] took it all in and gave me good advice” resulting in Harriet feeling more at ease, she continued to offer, “I think trust is either there or it’s not there to be fair.” Trust is very important since it is core to engagement as Grace shared “I just won’t speak openly unless I think I can trust them.” Dina talked of her disengagement and how she would just “nod and smile” when she felt “a small fear of judgment” since she felt clinic could be “nerve racking…frustrating and embarrassing.” While Evelyn recalled feeling angry when “some of the people didn’t believe me [that I was in pain]” which left her feeling “angry and a bit annoyed.” |
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| Skill in checking out understanding and providing a safe space | Katherine recalled “I didn’t really understand at the time why I was having the operation and how big it was going to be.” This left her unprepared and in pain emotionally and physically she wrote about no one asking her if she understood what was going to happen. Imogene shared that “when people explain things to me clearly I stop being scared…I expect people to talk to me in a way that I can understand, medical words don’t mean anything to me.” “[Some professionals] explain things but I just don’t understand a word of it. They come out with all the technical words and stuff and I just don’t understand it so I just say ‘yes.’ I don’t say - ‘can you explain that so I can understand it’? I don’t say that, I just say ‘yes.’” (Harriet). Martha had thought about this and suggested that “to improve [my understanding] they should do a survey on what they have just been talking about to make [me] more knowledgeable.”
Grace recognised the importance of feeling safe “It [clinics] can’t be all scary for the kid, it’s got to be sort of quite chilled and mellowed out, not all shirts and ties because when you are in the hospital and you see the big brown boots with the shine on them, the tie, the belt, that’s it! You don’t want to be there.” |
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| Providing privacy and maintaining confidentiality | Evelyn explained that “it’s a bit embarrassing to speak about it…you still need a bit of privacy, you don’t want everyone knowing your business about the problems you have.”
Grace recalled it took time for her to build confidence in others; she recalled one professional and how this developed over time, “She had a way with me, she found out what I liked to do most and then she went and took me out to do them before she started speaking to me. Now that I think about it she was rather clever.” |
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