Background
Methods
Design of the study
Sampling
Procedures
Analysis
Results
Participants
Gender | Female n (%) | Male n (%) |
Patients | 15 (48%) | 16 (52%) |
Carers | 20 (91%) | 2 (9%) |
Clinicians | 17 (52%) | 16 (48%) |
Age | Mean (standard deviation) | |
Patients | 43 (12.3) | |
Carers | 51 (15.8) | |
Clinicians | 40 (10.4) | |
Carer relationship to the patient | N (%) | |
Mother | 13 (59%) | |
Father | 1 (5%) | |
Wife | 2 (9%) | |
Partner | 1 (5%) | |
Sister | 2 (9%) | |
Daughter | 2 (9%) | |
Sister and daughter | 1 (5%) | |
Diagnosis | N (%) | |
Psychotic disorders | 7 (23%) | |
Mood disorders | 12 (39%) | |
Personality disorders | 1 (3%) | |
Missing | 11 (35%) | |
Experience of working in acute mental healthcare in years | ||
Mean (standard deviation) | Missing n (%) | |
Clinicians | 9.5 (9.3) | 10 (30%) |
What should carer involvement entail
The right time for involvement
“That’s where the carers come in, doesn’t it? Initially the first, second, third day, that’s where the carer’s voice should be heard more than being pushed aside.” (Carer - C17)
“I think straight away or even within a day because it’s very important when someone’s unwell for them to be, you know, comforted and supported from their families and loved ones” (Patient - SU20)
“I think there are more important things to deal with in the meantime, like especially if a patient comes in really unwell, and say they're secluded or something.” (Clinician - P32)
“It takes me at least a week proper week to realise everything. I don’t realise where I am, I don’t realise nobody, I can’t remember the doctors’ faces.” (Patient - SU22)
“They could be dosed up and completely out of it. They might be still deluded or whatever you know (C5: not settled), yeah, and till they’ve really set to realise where they are… because often they don’t realise where they’re until they’ve had medication and a bit of therapy or whatever.” (Carer - C1)
Providing carers with information
“I wish my parents had a better understanding about my illness (SU10: same here) and my family around this ‘cause they have no insight about it at all (SU8: no). They think it’s just (SU8: you playing up). You playing up (SU8: mmm) (SU10: attention seeking) yeah.” (Patient - SU9)
“I think they should they, the carers, should have more education on mental health, so that they don't judge you or-or treat you differently.” (Patient - SU30)
“It’s really important for me I’ve been very frustrated, you know, ripped apart in a way because I had no information.” (Carer - C12)
“When I went on the ward I didn’t know anything. You’re just left in the dark. Nobody talks to you. It just felt isolated and lonely. You’re so worried about your loved one who is not all there and you want to get all the information.” (Carer - C17)
“I think it reduces the stress of the carers as well, if you get it right, because I think a lot of the time they can feel a bit pushed out of things, like ‘This is the medication your son or daughter is taking.’ That's it, you know? And they come with all of these worries and they're not always addressed, so I think when they are, it helps them as much as it helps the patient.” (Clinician - P32)
“They should be informed on what medication you're on and its possible side effects. Because I mean you know you can have some side effects where it might make you a little bit aggressive demeanour or something and they can take it personally and then they don't want to care for you, you know what I mean? (Patient – SU30)
“… why they’ve chosen it [the medication] over others ‘cause there are so many different ones they obviously have to choose from <…> so we know what the decision making was that was involved in that (C11: also possible side effects so you know what to look out for).” (Carer - C15)
“I think also it’s quite good when you get feedback on the things that they’ve been involved when they’ve been in hospital. Another thing that would be helpful I think knowing who the people (professionals) are, their names, their roles, what their job is.” (Carer - C11)
“My child was transferred to [hospital] without my knowledge although that very day they had a ward round nobody told me that (C3: mm) um he was going to be transferred (C3: yeah, it happened to me) to another hospital.” (Carer – C5)
“Mental Health Act - I haven’t got a clue what that’s all about. I know there are a lot of acts there. I don’t know my rights or my wrong, and tribunal, and all that lark. So those things, not being told…just have to go and Google it myself and educate myself. That’s what I’ve been doing all this time is educating myself.” (Carer - C17)
Involving carers in all the aspects of care planning and discharge
“At the end of the day I’d like to be involved in everything ‘cause s/he’s not in my care, s/he’s not at home, s/he’s in a hospital.” (Carer – C2)
“So of course they need to be a major part of ward round. They need to be told what is happening, what’s the next step where we’re going from here, they have to be part of the discharge planning, they need to know exactly everything that’s happening with the patients.” (Clinician – P17)
“I think the assessment that you have prior to being released, I think it's a good point for them to get involved (Mod2: discharge planning?). That's right, ‘cause then they know about the medication, they know about your moods and it just gives them an idea of when you come out, what they're gonna have to... (SU26: deal with) Deal with, yeah.” (Patient - SU28)
“There’s a ward round coming up.’ I get a phone call from [ward name] saying, ‘Can you be in at…’. I’m not saying it happens all the time, but it has happened. It’s been left to the last minute. By the time I’ve got a bus up here and I’ve got myself ready, it’s on its way and s/he’s been done and dealt with.” (Carer - C21)
Adopting a supportive approach towards carers
“It’s scary when they go in and they’re really unwell and what I found very helpful was very calm staff that are really reassuring and if you could have that at that stage in a meeting like that, I think that would help everybody’s anxiety.” (Carer - C11)
“Some work around validation of their experiences is extremely important as a starting point” (Clinician – P6)
“I was actually asked how I was by the staff on the ward and that was new experience, really positive thing. Generally concerned and interested, which was lovely.” (Carer – C11)
“It would be nice for perhaps her/him to... (SU26: get...) get some support (SU26: yeah). Even if it's once a year, you know just somebody to just see how s/he is.” (Patient - SU28)
“There’s always an assumption that, “oh they’ve got a carer, we must do a carer’s assessment. Oh they’ve got a carer, we must offer them some support”. I’m much more minded to say, well, if you are carer, do you want support? Let’s have a discussion rather than just automatically assume you must have it” (Clinician - P28)
Valuing the personal knowledge of carers on patient’s condition
“The knowledge the carer brings to that, I think, including someone in that sort of decision making and care planning has to acknowledge that they bring knowledge and expertise themselves.” (Clinician - P12)
“They know you, they know your likes, your dislikes, your triggers. They’ve been around you so they’ve gone through the process of you going from being well to getting unwell, so they they’re kind of experts around your care.” (Patient – SU7)
“Sometimes you don’t have the chance to tell them what’s your view, what’s happening and they don’t want to listen to you. They just put you back in the background (C11: yeah). They just tell you to shush, you know.” (Carer – C12)
“I’ve had recent experience where I have been listened to and it was fantastic the impact on my daughter because the care was so good and the way I was listened to was huge – she got better quicker.” (Carer – C11)
Practical challenges of carer involvement
Identifying carers
“If you’ve got somebody coming on the ward with a bunch of flowers to just say ‘hi’ to that patient we’ve got on the ward, we are not going to assume they are a carer unless the patient, service user or client says it, do you know what I mean? I don’t think we assume that they are a carer. A service user defines who is their carer as opposed to just us. We are going to have to be guided by them.” (Clinician - P28)
“First and foremost is to speak to the service user and who they identify. Because you’d be surprised sometimes, it’s not the immediate family, sometimes it’s not even their partner.” (Clinician – P22)
“I think if the person like I was really unwell so how would I actually identify who I want to be involved in my care? How would I be able to voice… because I was so unwell I didn’t know…I was in a psychotic state so how would I be able to inform you that I want so and so involved?” (Patient – SU7)
“Some of it is inferred by generally the people who have turned up when the patient is admitted, the people that come to the ward and visit the person.” (Clinician – P28)
“Then also at the same time we need to be very very, you know, vigilant to be sure that this so called carer is not asked to take any benefit or in any way abuse the vulnerability of the… of the patient because some, you know how people can take advantage of people” (Clinician – P19)
Problems in assessing and obtaining patients’ consent
“I don’t want them knowing everything that I do because it just hurts them.” (Patient – SU8)
“I don’t have a very good relationship with my family at the moment. I think they intervene too much. (Patient – SU9)
“I didn't involve anyone at all, and that was through embarrassment <…> (SU25: stigma, isn’t it?)” (Patient – SU24)
“But they have the choices, and I do respect the choices if they don’t want us to be involved. You have to have a bit of respect for them, even though they’re not well and they’re ill, you still have to sort of respect the choices and listen to what they’re saying.” (Carer – C17)
“It's their choice and their rights.” (Clinician – P33)
“I think it should be the individual that decides and the choice should be given to them.” (Patient – SU28)
“I suppose the obvious one is that due to the health condition, they might be too distressed or lack the capacity to make the decisions.” (Clinician – P24)
“Let’s not forget. Let’s say, at the time of admission they are disorientated. My son/daughter, s/he blames me for going to hospital. So if you ask her/him, s/he’s going to say, ‘I don’t want my mother involved’.” (Carer – C19)
“You can make a plan when they’re well so they know well actually I do want these carers involved but when I’m unwell I might become… I might say no to this but you know to actually discuss it when they’re well.” (Carer – C11)
Complexities of information sharing
“I came with an ambulance to A&E psychiatric with my partner and since I couldn’t answer the questions the psychiatrist was talking to my partner and s/he said, “but are you aware that s/he committed suicide in [year]?”, and it’s not something that I especially wanted to share. (Patient – SU12)
“If someone was talking about me, I'd like to know what they're saying. And as I say I - if you know someone's talking about you, what are they saying? And then, that can also make you- (SU25: - paranoid) yeah, revert back (Patient - SU24)
“I probably would get angry and frustrated with them talking about me in the room. I couldn’t bear that.” (Patient - SU8)
“I’d personally probably go back to the service user and say, “I spoke to your mum about that and that”, so involve them as much as possible (P13: mm) ‘cause you’re trying to re-connect the families establish communication and it wouldn’t be helpful if you did something behind their back.” (Clinician – P10)
“As long as they are aware of that’s happening I think as well. They don’t necessarily have to take part but are kept in the loop sort of thing (SU12: Yeah, otherwise, like they’re talking behind your back).” (Patient - SU15)
“It is a delicate one because my son/daughter used to… s/he’s in the room and s/he’s like, oh God I’m not a nurse or anything, s/he might penalise me, you know… I might get into trouble.” (Carer – C2)
“We had to call hospital before and we’ve asked how is s/he, “sorry, due to data protection we can’t actually tell you”. Are you joking?! This is my sister/brother! You can’t tell me how s/he is? “We can confirm that s/he’s present in our ward”, you know, that kind of robotic response. It’s not helpful when you’re already going through trauma yourself and then being told they can’t tell you how s/he’s doing.” (Carer – C15)
“I think we need to think about the way we speak to the family members when the patient doesn’t want them involved in the care because I’ve seen people on the phone like staff talking to relatives and stuff in a way that don’t know just… (P8: they just don’t give away too much). Yeah, “sorry we can’t give information” and we’re not very helpful and it’s we’ve got to understand that these people are really worried about their family, so we’ve got to try and find that balance.” (Clinician – P7)
“I think sometimes you find that when someone's quite unwell, often they don't want their family or carers involved, which makes it really difficult when the family do want to be involved, and then you're limited in how much you can actually involve them because you have to respect the wishes of the service user. And that can be really hard, because that's really upsetting for the carer. And then you have to try and find a way to balance both needs, and that's really hard.” (Clinician - P31)
Difficulties with engaging carers
“If they’re working, maybe, you know, they might have other priorities, you know, they have to follow their job role, emergencies. Sometimes it could be, you know, loads of things - they’re busy, they’ve got children, they can’t get childcare, so lots of stuff.” (Patient - SU20)
“If they have relatives, like I said, up north, they are not going to come down for this meeting.” (Clinician - P29)
“Language barriers, especially like [language] patients when you don't understand and their mum's a bit… I've had a few mums that get quite annoyed that I don't understand what they're saying, and it helps when you do have a [language] speaking person on the ward. That does help. But other times it is a bit… you're trying to communicate something to somebody that you can't always get across, and you can see that anxiety.” (Clinician - P32)
“We've got so many different communities different cultures and different understanding about mental health. Say for example, somebody is not happy with having an arranged marriage and that is causing a lot of their problems. For them to sit down is going to be difficult. And then getting people from different communities to talk, you know?” (Patient - SU28)
Systemic and organisational constraints
“Once you're on the ward you get sucked in (P30: That's it.) to everything that's going on. It's really difficult (P30: yeah) to get away.” (Clinician - P32)
“Quite often we may be too stretched or busy to even be thinking on that level, ‘cause we're just, you know, running through sort of tasks” (Clinician – P30)
“Overall, I don’t know, is there difficulty with them in terms of staff level, staff numbers, that they don’t have somebody to, obviously, attend to us? I don’t know.” (Carer – C19)
“I think there's a lack of clarity as to whose role it is. I mean, on some wards there's an allocated nurse who is the carers' specialist if you like, who will run a programme and sort of arrange meetings. So, if that isn't in place, and other members of the team aren't clear on who, where, what, when.” (Clinician - P30)
“You can't just have one person put in charge of this. That's horrible to be like the only person put in charge of something” (Clinician – P32)
“We could provide a service… if it was more flexible (Several: yeah).” (Clinician – P26)
“I think it’s lack of accessibility for them to us. Services aren’t necessarily geared up to be the most supportive to carers. It’s not flexible enough for a carer to access help.” (Clinician - P28)
“And train them quite a bit on this I think ‘cause you may have to meet a potentially complex patient or complex family.” (Clinician – P1)
“You have to be quite skilled to do that because it’s very easy to get involved in rather very difficult conversation where the family will be offloading their distress and their anger and so forth. So if you meet with all of them, you have to handle that in some ways and it is maybe very difficult.” (Clinician - P5)