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Table 3 Exemplar quotes

From: Burden of mental health symptoms and perceptions of their management in in-centre hemodialysis care: a mixed methods study

Theme

Sub-topics

Quote

Theme 1: Potential identification and management of mental health concerns through PROM use

PROM use had the potential to identify mental health concerns

“[The PROMs] are helpful. It’s a good guidance. I'm sure it helps other [people], because they like to express, ‘This is my issue and I've been dealing with this issue for this long’… A lot of people don't have the willpower, the drive to ask [about mental health]. There's a lot of reasons. I've seen so many people in such horrible shape because of not being able to talk and open up about it.” (Patient/540/Interview)

“Interviewer: So, is it fair to say that any concerns you have, you’ll bring up on your own with the nurse?

Respondent: Me, personally, yes. But I do think other people, no. So, I do see the value in it.” (Patient/535/Interview)

“There were a couple [of patients] that did say that they were [experiencing depressive or anxious symptoms on the PROM] and it kind of took me off guard a little bit. So, in those instances, yes, it was helpful for stuff that we’re not really going to ask them unless they’re expressing their concern or unless I notice a change in them or something right?” (Nurse/21/Interview)

“RN said there could be value in patients filling out the pain/discomfort and anxiety/depression questions, implying these were issues that she may not be able to physically observe.” (Observation/5)

Limited potential for PROM use to identify mental health concerns

“[The PROMs are] asking silly questions, the same questions that [the nurses] already ask every morning and they write it down. Everything’s on a piece of paper stating exactly how we feel and what’s going on with us; our blood pressure, our moods…everything’s there.” (Patient/20/Interview)

“I usually am pretty good at knowing what's going on with my body so the survey really doesn't do [anything] for me. Because I pay attention anyways… As soon as something is off, I do say something to the nurse and then I usually talk to the doctor about it too.” (Patient/536/Interview)

“I don't necessarily think that [the PROM] helps us gather more information for our patients because most of them are pretty open to us, and they tell us lots of stuff, regardless of the survey…When we're hooking patients up they're very talkative to us, and they will talk to us about their symptoms or any problems that they're having, and we ask them, before we even hook them on, like any new issues since your last run, like itchiness, and whatnot. So, they're pretty open and they'll just tell us things, regardless of us asking them [PROM] questions.” (Nurse/11/Interview)

“[Patients] started just telling us, ‘Do we have to do this? I’d rather not do this’ and ‘[We] will [tell] you if we have a problem but you guys are always asking us anyways every day when you do your assessment about many of these things and we know we can come to talk to you if there’s a challenge and that you’ll help us’. So, [the PROM] feels like a forced homework assignment rather than a natural conversation… I think using good therapeutic conversation as the patient wants it and then moving forward with that.” (Nurse/13/Interview)

PROM use prompted some, albeit limited, management of mental health symptoms

“I really liked the information in the [decision supports], once you go through the anxiety levels and then you’ve got the anxiety and the depression [screens] where you go into further assessments.” (Nurse/13/Interview)

“If there’s depression we ask them. We try to interact with them and gather more information about that and then ask if they want [management]. So, we discuss the handout and [the questions] on the [PHQ-9], if they still score high [compared to the PROM], we ask if they want to be referred.” (Nurse/543/Interview)

“I often bring up the social worker [for mental health management]. We had one social worker that was quite involved in our unit and she called all the time [unprompted] and she seemed to be very involved with the [patients].” (Nurse/12/Interview)

See content analysis in Fig. 3

Theme 2: Varying opinions whether mental health is within scope of dialysis care

Mental health within scope of dialysis care

“Depression is going to be high too because you're not right-minded and you got that dialysis fog again and then the anxiety amplifies that and your wellbeing.” (Patient/538/Interview)

“'Talk to me'. I hate to be alone and lonely.” (Patient/161/Survey)

“You see a lot of psychological issues working with dialysis patients. From the non-compliance [of dialysis] all the way through. Because it’s a big change in life for many people. You know, the long-term plans. Like if some people end up on dialysis, let’s say [they were] going to retire and travel. Well, guess what?” (Nurse/534/Interview)

Mental health has limited role or outside scope of dialysis care

“I went to ask [a patient] if we could work through some of [the mental health scores] and I was trying to just be really subtle [with] my back towards the other patients and not really using the words out loud that were on there like ‘anxiety’ and ‘depression’ but just kind of quietly trying to get them to see if [the patient] was interested in working through the surveys a little bit more to help identify what his needs were and he immediately told me, ‘I do not want to talk about this here.’”(Nurse/13/Interview)

“Interviewer: You said [patients] don’t want to discuss some issues. Which issues?

Respondent: I’d say [depression] is the big one, maybe anxiety, they kind of fall-in together. Those would be the two big ones… [Patients] learn to say on the depression [question to] put a zero in so maybe they don’t have to discuss it and you don’t bring it up.” (Nurse/12/Interview)

“I did have a conversation about [the mental health symptoms] but some patients won’t tell you right?… I myself am not sensitive to it of course being the nurse. I’m not uncomfortable talking about anxiety or depression with my patients because I want to help them but some patients, specifically maybe the Aboriginal population, it’s not really something that they want to talk about a whole lot but there are times where they do kind of give me an opportunity to ask them, “Oh are you doing okay? How are you feeling mentally?” or whatever. But they’re not as open to it as, say, if they’re having pain or they’re itchy or they have restless legs or problems sleeping or what have you.” (Nurse/21/Interview)

“Some [patients] say when they come to dialysis that they don’t want to think about some of these things, they just want to come and [get dialysis] and have peace” (Nurse/12/Interview)

“The nurse said that a man who scored a 9 or 10 on the anxiety/depression [item] said that he did not want to talk about it” (Observation/10)

Evidence from content analysis (Fig. 3) of patients pursuing mental health management outside of dialysis care or who declined mental health management from their dialysis nurse

Theme 3: Inadequate mental health resources

Lack of access to resources for mental health management

“That ties back into the depression thing. Honestly, I think it’s just more of an assessment of an individual rather than just circling [a numerical score] on the [PROM]…Actually talking to someone would nail down that mental health situation and I think alleviate a lot of those problems that people do have… But in terms of the interaction with the nurses, I just kind of [felt like there was] no point asking. I don't even know if there was a psychologist available to talk to. I didn't even ask. It is what it is.” (Patient/538/Interview)

“Well I have to say the depression one, and I know [another colleague] and I have discussed this, I just don’t know what to do for them sometimes, like you try and suggest things and you know that they’re depressed but you just don’t know how to help them. Yes, you look at the handout and you give them suggestions [but] there’s really no one for them to talk to I feel in [the renal program]. Maybe there is in the city but not in the rural areas. We do have people I know but it’s hard to get into; there are waiting lists. I know at the health unit you don’t have to pay [but] there’s issues there with calling and getting in; you could be waiting months to see someone. Our social worker is not on site; our social worker seems to change a lot for our site so we’ll usually use somebody out of [another town].” (Nurse/12/Interview)

“Being a satellite unit, involving the physician in the process at least so they’re aware but many times they’re not, they’re sending it back and saying, ‘Well send them to their family doctor’ because they don’t necessarily want to deal with all of that either.” (Nurse/13/Interview)

Lack of knowledge for nurses in mental health management

“I felt I didn’t really have a great understanding of what [the PROM] was accomplishing. It just felt like it was maybe a lot of work initially and I didn’t understand, I was really scared about trying to capture something and being inaccurate where I chart it so I felt quite overwhelmed doing that…I mean I don’t mind having the information that’s in [the decision supports] on the anxiety and depression but it’s way over my head to be dealing with medications in that regard and I would not feel comfortable recommending anything, especially over the phone with the nephrologist about those things.” (Nurse/13/Interview)

“[We need] some more resources or some more tools or even a bit more education around [mental health management]” (Nurse/21/Interview)

“Interviewer: If patients were to tell you that they do have concerns with their mental health, do you feel that you would be equipped to deal with that?

Respondent: No, not at all, no. I wouldn’t [know where] to send them or anything. Except their own GP again, right?” (Nurse/534/Interview)

Lack of privacy for mental health management

“It’s interacting [and] discussing within the open area, right. Do you know what I mean? Like say they don’t want to discuss something because they don’t want everybody hearing.” (Nurse/12/Interview)

“Some patients, because they know each other so well, are less likely to voice concerns. [The nurse] explained that there's no privacy on the unit, so patients aren't likely to bring up issues, like depression, or wait around after dialysis to talk about it privately.” (Observation/6)

“RN told us that privacy was the biggest barrier with [PROMs] assessments. She said that patients do not want to discuss their symptoms out in the open in the dialysis setting where their neighbours will hear. RN said the setting is completely inappropriate for her to be discussing symptoms with her patients (anxiety and depression in particular) because the setting is not private. She said that patients are on the same dialysis schedule and they get to know their neighbours. They do not want to discuss sensitive topics in front of their neighbours. RN said, ‘it's their dignity’.” (Observation/10)

“More privacy.” (Patient/167/Survey)

“It would be nice to have privacy.” (Patient/71/Survey)

“Have nurse not discuss other patients in front of us.” (Patient/106/Survey)