Table 2.
Potential PREM items informed by the conceptual model of lived experience of hearing loss.
| Conceptual category | Description of category | Quotes (supporting evidence from qualitative interviews) | Potential PREM items (examples) |
|---|---|---|---|
| Individual responsibility (core category) | The sense of individual responsibility for the management of hearing loss that falls to the patient. | It's down to you to learn to deal with things and it's your problem (hearing loss), not anybody else's. (participant 43, age range 30–49 years) | I feel the burden of my hearing loss is all on me |
| The onus is on that one individual in a social situation, where I don't know the other people, it is absolutely on me. (participant 17, age range 30–49 years) | I feel I have to manage my hearing by myself | ||
| Individualised auditory lifeworld | The level of isolation experienced. | If you don't hear everything, you tend to cut off. You go in your own world. (participant 34, age range 50–79) | I feel so on my own when I can't hear and others can |
| It's isolating. It's a community (hearing world), I am sort of left out, a bit removed from things. I can't hear what he's (young son) hearing or I can't really talk to him. (participant 21, age range 30–49 years) | There are certain situations where I feel really left out | ||
| You can feel a bit cut off, because some times I've missed a particular punchline or whatever, which I find really annoying. Someone's telling a joke and the punchline's right at the end and I miss it, sometimes they don't make it very clear or rush it, but I know I have to ask some. (participant 24, age range 80+ years) | |||
| Individualised auditory lifeworld | The sense of concern or fear for the future of their hearing loss. | It's like, is it going to get any worse, because I asked the audiologist, obviously, because the left one's gone worse than the right now. (participant 45, age range 30–49 years) | I worry my hearing will get worse in the future |
| I do think about it (how hearing might progress in the future) and I do worry about it. I have asked that audiology appointments about it and they never can tell me anything. I always feel like I'm having to say, you can see that I'm younger than your average person, so that's why I'm interested in this question and they don't really necessarily seem to think it's obvious. (participant 47, age range 30–49 years) | A healthcare professional has talked to me about how my hearing might progress in the future | ||
| Social comparison and support | The level of social support with hearing loss (broader societal, but also family and friends type support). | My friends are really good. I go out with them regularly and two friends, in particular, they've learnt the best way to sit which is if they both sit opposite me and I sit so I can see them to lip read. (participant 30, age range 50–79 years) | I feel lonely when I can't hear and others can |
| My wife and my daughters and the grandchildren, they'll say something at the wall and I just hear something and I say, ‘I can't hear what you're saying’, so what they do is raise their voice, and I said, ‘Look, turn around, then I have got a chance of understanding what you're saying, lipreading and things.’ (participant 36, age range 50–79 years) | There are certain situations where I feel really left out | ||
| Social comparison and social support | The sense of belonging individuals have to social groups (in hearing and deaf communities) | I miss out on the chit‐chatter, whether it's at a restaurant, whether it's walking down a street with a group of friends, whether it's team away days (at work), you miss out on the general chit‐chat. (participant 10, age range 50–79 years) | My family and friends support me with my hearing |
| It's kind of like a weird niche, isn't it? It's like partially deaf people don't quite fit. If someone was signing hello or whatever to me, I'm just like, “I'm sorry, I don't know that language.” I feel a bit of an alien to that, as an outsider, I fear that I wouldn't feel welcome. I feel that I would be denigrating that effort to like get together as a deaf men's group. (participant 46, age range 30‐49 years) | Medical/healthcare professionals support me with my hearing | ||
| l | |||
| Individualised patient‐centred care | Negotiating healthcare encounters (seeking help, interaction with healthcare professionals) | So, one of the audiologists was also a lip‐reading teacher and had lived experience, had hearing loss herself. And if I call with questions or problems, I can go to them and they are accessible.participant 17, age range 30–49 years) | I feel confident communicating my concerns and needs to healthcare professionals |
| iNobody sits down and say it's OK. You know this is going to be really difficult and there was not health professional I had access to that I could talk to about hearing loss. (participant 31, age range 50‐79 years) | I am confident that healthcare professionals will listen to my point of view | ||
| Individual agency and capability | The level of information and knowledge they have to assist with decisions. | So, by this time, I have been struggling with a major hearing loss for eight months. I don't know what to ask for. I don't know what's available. I have no idea and you trying to help me when you don't have any idea and I don't have any idea and I feel stupid because I don't know if this is temporary or permanent. My husband has stopped talking to me. It's a waste of time to talk to you. You can't hear. You know, I'm feeling phenomenally isolated and it must be my fault because it's my hearing that has gone. Can't possibly be anybody else's fault. (participant 31, 50–79 years) | I know the different things that can help me with my hearing like devices and support |
| It would be helpful to be directed to services that can help my hearing such as lip‐reading classes, groups or hearing therapy | |||
| Individual agency and capability | The sense of frustration in communication. | And they don't understand you feel frustration, you know, they think, ‘why isn't he listening to me? Or I told him that just now’. You know, (participant 23, age group 80+ years) | I am frustrated by my hearing problems |
| I find it really difficult and frustrating and upsetting, I guess when people like, if you do mishear something or you do, you don't hear something and you ask someone to say like say it again and they say ‘ohh, don't worry’, you know or kind of dismiss it. (participant 12, age range 16–29 years) | I find it hard to communicate with services because of the difficulty hearing them (e.g., companies, organisations, GP surgeries, etc.) | ||
| Individual agency and capability | Doing the work of hearing loss (cognitive, emotional and physical efforts) | I had a training course for work. I was knackered afterwards. I do get very tired (with my hearing). My brain is completely fried, my ears and my eyes just don't want to know at all. So, I just usually sit and watch telly to unwind and calm down. But, it takes me a few days to really recover. (participant 13, age range 50–79 years) | Trying to hear can be exhausting |
| I would say having a hearing impairment, because you get tired with your concentration, it's a bit like speaking a second language. So, the challenges of processing and you know hearing and interpreting processing, they're similar to somebody with a second language. (participant 11, age range 30–49 years) | I have to concentrate more because of struggling to hear |