Table 3 Table of themes

Theme 1: Physical effects of xerostomia

Intra-oral sensation and location

“It’s as bad as blotting paper soaking out” (P15)

“Would you understand if I said dirty? You know…rough” (P21)

“It’s very unpleasant because my teeth are stuck to the inside of my mouth.” (P26)

“I think the tongue is kind of stuck to the roof of my mouth.” (P26)

“It’s down in my voice box and it’s very very dry and it seems to work its way up.” (P6)

“It makes my lips on the inside sore and I feel like they’re swollen on the inside.” (P30)

Theme 2: Daily activity effects of xerostomia

Effects on speech and voice

“Definitely it affects the speech ………Slurred like as my daughter said two or three drinks.” (P8)

“It sounded like I was somebody talking with no teeth in.” (P28)

“It really affects my speech. It makes me go th, th, th. It’s horrible.” (P33)

“I get hoarse and if I was talking to someone on the phone they couldn’t understand what I’m saying .” (P40)

Effects on swallowing, diet, and taste

“ Because everything sticks, everything kind of sticks to my mouth inside. I don’t know if it sticks but I have to keep drinking, you know, when I’m eating…. I don’t eat chocolate any more…….It’s like it sticks to my mouth around it, it’s horrible like, it’s hard to eat it.” (P1)

“P: I couldn’t eat a biscuit in the morning, there’s no way.

R: And what would happen?

P: When I have tried it all will be in balls. I can’t even swallow it.” (P12)

“P: (In relation to chewing) It seems to be drying up…….I just can’t describe it. It gets really horrible and in the finish often I spit or put it in a tissue.” (P20)

“I’d be complaining of the wife’s dinners….oh, that’s horrible and what not….yet she’d cook the same thing the day after and it’s lovely and she’d go that’s the same thing ….when I get that it just like, everything in the mouth just tastes horrible…it doesn’t matter what it is….it could be cooked by Gordon Ramsey and I’d still find it’s just not…it’s horrible and then as I said ….next day, same thing cooked and it’s perfect.” (P23)

Effect on sleep

“But when I’d wake up then, I’d just have to stop it was like my teeth were stuck to my mouth” (P9)

Effect on kissing

“And I can’t kiss even like this (demonstrates kiss on back of her hand).” (P1)

Effects on denture wearing

“I think it’s because of an old plate and the dentures that’s causing this dry mouth and the plate inside gets dry ….both inside and outside gets quite dry” (P27)

Theme 3: Psychological effects of xerostomia

Mild level of bother

“Yerra, it only aggravated me really.”(P7)

Moderate level of bother

“I would get dry mouth alright from that and it’s not the greatest thing because I feel I have to keep drinking water. It’s like an unquenchable thirst and then that’s not great for the dialysis either then so I am restricted to so much fluid a day, less than a litre so, am, I just feel thirsty most of the time.” (P23)

P: “I think it’s the inconvenience and to some extent the embarrassment if you’re out walking, you meet someone. And yeah, it’s easier now with masks on like in this environment, and you want to talk to them. And all of a sudden you realise, you aren’t always aware you’ve got the dry mouth, but when you start to want to talk, want to use your lips, use your mouth, use your tongue, it’s difficult. And you have to take some water, at least I do, before I can have an easy conversation.” (P29)

Severe level of bother

“It’s just horrible, it’s just there the whole time.

even while I’m talking to you now my lips are starting to stick to my teeth again. ……and that seems to be the main thing about it, it’s just a constant annoyance.” (P38)

Rinse it around and still no good two seconds later tis as bad as ever again, my lips are stuck together nearly, on the inside of my lips.….’Tis a severe dose.” (P2)

Specific feelings about xerostomia

P: When I wake up in the morning my teeth would be clung to my mouth and my palate and you could hardly open the mouth……. I remember when the doctor would come I’d find I couldn’t talk, I used to take it easy rather than say what’s wrong with you……It’s scary like, you don’t know whether you are going to suffocate or what like there is nothing on your tongue so you have to have water nearby.” (P9)

“You think it’s a trivia and you have to put up with it” (P15)

“You don’t think anybody will understand” (Tearful). (P20)

“The dry mouth… I think it’s the inconvenience and to some extent the embarrassment.” (P29)