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Table 2 Themes identified in Stage1 with selected supporting quotations from qualitative interviews

From: Planning and designing a self-compassion intervention for family carers of people living with dementia: a person-based and co-design approach

Theme Family carers of people living with dementia Professional stakeholders
Understanding of self-compassion
Unfamiliar concept and word ‘That’s the thing that had me a little bit confused. Self-compassion? I’m compassionate about my wife. I’m compassionate, but self-compassion? That’s the one that beat me.’ (#5 male carer)
‘You need something that is not quite esoterical and not so academic because there’s an awful lot of the population that wouldn’t understand that concept.’ (#14 female)
‘Use language that will make sense to most people, and I don’t know if people recognise the term self-compassion.’ (#1 female, AC/(A/D), social gerontologist)
‘Well, I had actually never heard the term [self-compassion] before, so when my manager sent me this email, I sort of went, oh, what does that mean?’ (#6 female, CSP, educator)
Related to compassion more broadly ‘I reckon in looking after Mum I am looking after myself because I want to do it. Now, to me, that’s nourishing me because I can see the benefit.’ (#2 female)
‘I get care workers and have strangers living in my house from overseas because that helps take care of things around the house that I can or can’t do. And allowing people into your life that do want to be there…to me, that’s a form of compassion.’ (#8 female)
‘I wouldn’t make necessarily a big distinction between self-compassion and compassion in general. I think where people often get stuck is that they assume that compassion for someone else is the only kind of compassion and, hence, why people put the self-compassion on there as well…You know, it’s something to say that, if you want the help, you can get it, and you can get that help by actually looking at where you stand with yourself. Not doing more for the person you care for but being kinder to yourself will lead to a greater capacity of being kind to others…I think it’s embodying the practice. If you want to be a compassionate individual, you can’t do that while taking big chunks out of yourself and berating yourself.’ (#8 male, CSP, counsellor)
Perceptions of self-compassion
Positive perceptions, but with some qualifiers ‘I think that the thing that compassion does give you, is it gives you advocacy for your own voice to finally be heard … But I don’t think self-compassion should ever include the excuse that the behaviour is allowed to continue. I think you need self-compassion to understand that they [the person with dementia] don’t know what they’re doing. They are vulnerable and that they are totally reliant.’ (#8 female) ‘I think the ability to tolerate negative affect and to appreciate that some things can’t be easily changed and that tolerating, you know, an unpleasant situation is sometimes all we can do and that continuing to rail against it is often unproductive. So, I think those lessons are probably worth teaching. But not just by themselves…sometimes it’s reasonable to not continue caring or to engage other people to assist you rather than to tolerate an intolerable situation.’ (#2 male, AC(A/D), old age psychiatrist)
Negative perceptions (resistance) ‘I don’t know whether it’s a bit of self-indulgence…I saw it as, oh no, is this one of those ones where you’re important, well you’re at the centre, so you need to look after yourself.’ (#2 female)
‘Often when you’re thinking about self-compassion you feel that it’s purposefully selfish to be considering that.’ (#3 female)
‘Compassion, they have compassion for others, but self-compassion seemed to be interpreted as self-pity.’ (#7 female, CSP, counsellor)
‘I think there is that sense of self-indulgence… people I’ve spoken to, the carers and things like that, where they’re probably so busy and so focused on their loved one that it would almost seem self-indulgent to focus on themselves even though we know how important that is.’ (#1 female, AC/(A/D), social gerontologist)
Family carer background characteristics ‘I think my generation have always been brought up to show that we’re tough and that we’re the ones running the families and that everyone comes back to us and listens to and takes advice from.’ (#11 female carer)
‘And a lot of it is about what they’re brought up with too…like with cultural expectations or parents who sort of had their parents deal with the grandparents.’ (#14 female)
‘Part of the issue is the expectations, especially those familial expectations…And so often generational expectations, gender expectations come into play and so if you say…you could treat yourself with some more care you could be more compassionate towards yourself and that will help you, that might lead to, well, I don’t need to or that was never taught to me…’ (#8 male, CSP, counsellor)
‘And even to think about myself is selfish, and a lot of folk would say I was raised at a time when you didn’t do that, you absolutely thought of other people.’ (#14 male, AC(C), clinical psychologist)
Realities of cultivating self-compassion
Demands of the caregiving role ‘I think any caring role has to be very, very draining and doesn’t leave a lot of space for self-compassion. And there’s a lot of rhetoric around that and people constantly provide the advice of, oh do take care of yourself. But that is so bloody difficult. It really is. There’s not a lot of time, there’s not a lot of space and there’s very little energy for it.’ (#6 female)
‘[The] time available for carers to come to something like that can fluctuate, can vary, so, because the focus is on the other person they may not, you know, create time for themselves.’ (#9 female)
‘Whether they’ve got time to take care of themselves is another thing, you know. It has to be a priority for them because they find it really hard to be able to do that.’ (#10 female, AC(A/D), mental health nurse)
‘A lot of them [carers] use words like survival and I think that self-compassion is really higher order, and it does require their time and commitment, and I just don’t know if a lot of carers have gotten there yet.’ (#6 female, CSP, educator)
Outward focus ‘I think when you’re caring for somebody with dementia or Alzheimer’s, your focus is on that person in the first instance. And so, thinking about oneself is not the first thing that comes to mind…So it’s external-facing as opposed to looking within.’ (#9 female)
‘You feel like you’re always needing to put the other person first because their needs, whether that be mental or emotional, are always feel greater than your own.’ (#3 female)
‘…self-compassion just doesn’t even come into their head space or just isn’t a thing that they can think of doing…It strikes me that they could be quite outward focused rather than inwardly focused.’ (#5 female AC/(A/D), clinical psychologist)
‘I think, carers are often…very much in automatic pilot. A lot of people [carers] talk about being in a routine, which then stops them from looking beyond that. Like, stopping to look at what it’s like for them.’ (#9 female, CSP, senior management)
Fears of self-compassion
Capacity and willingness to open-up ‘The reason I’m restrained now is because of Mum. We don’t raise our voices, we just don’t. We don’t have any emotions floating around from one end of the house to the other …because when you’ve got dementia, if something’s not right, that can go on for hours and hours, and that’s very damaging. So, I’ve taught myself how to hold onto all that stuff, but I suspect my volcano will explode in the future’. (#2 female) ‘…by self-reflecting and realizing, there’s the potential for, oh my god, this is how I’m feeling…Some people, sort of, are very, very wary of allowing themselves to open up to that…’ (#9 female, CSP, senior management)
‘You may just find people [carers] come into that space saying, look, I really want this, but I can’t. I just can’t do what you want me to do because it’s such a threat.’ (#8 male, CSP, counsellor)
Shame, guilt, and self-criticism ‘People are telling me I’m doing a really good job and I agree. So, there’s that. But, you know, there’s times when I just feel worthless, so it’s a roller coaster.’ (#4 female)
‘Being a carer, you think that you’re suffering, alone, which increases your stress levels and then you sort of self-criticise yourself.’ (#11 female)
‘They often feel guilty about taking a break or they often feel guilty if they have negative thoughts about the person they’re caring for, even though they are very common and probably quite normal.’ (#2 male, AC(A/D), old age psychiatrist)
‘I think it’s hard to talk about compassion without talking about shame…[carers can feel] lesser than the person that’s the priority and that can begin to erode their sense of self…. how do I be compassionate towards myself if the fundamental core of me, I feel ashamed about…We need to look at shame and of the ways out of shame is to look at compassion.’ (#8 male, CSP, counsellor)
Supporting attendance and implementation
Importance of pitch ‘It’s gonna be tricky to sell…I think the problems that you’re going to have is that, especially with long-term carers, is that we’ve got a bit jaded because we go to these things and it’s always, it always becomes academic…So it really needs to be promoted as a, as something for you, this is what you can do.’ (#7 female) ‘Convincing people that this is a good idea. I think that’s gonna be the biggest challenge.’ (#10 female, AC(A/D), mental health nurse)
‘The problem is, I think, trying to pitch it in a way that, we know you’re [carers] busy, we know you’re overwhelmed, we still think you should come along to do whatever.’ (#1 female, AC/(A/D), social gerontologist)
Flexible, responsive, practical delivery ‘Until they can accommodate our loved one, it’s actually creating a burden, which is why a lot of us are doing the courses online… Online is one way, in terms of it being cost-effective.’ (#8 female)
‘As long as there’s flexibility built into it and, of course, best practice would be that the carer comes for those eight weeks for one or two hours a week. But I think, if it’s communicated in a way that if you were to, sort of, dip in and out, then that’s not the end of the world and you’d still get benefit from it. So, if you were to miss a week then you wouldn’t have to completely withdraw.’ (#3 female)
‘So, it has to speak to people about their daily life and experience…I think there’s a lot of value in something that’s really punchy and skill-based so that people can do something with the information right away and the time limited nature of it…people are there to get as much out of it as they can, and they want something useful that they can immediately apply to their lives.’ (#6 female, CSP, educator)
‘…if you are a carer then sometimes you can’t get out of the house or you can make an appointment six weeks ahead…So, I think a model that’s really flexible and responsive’. (#1 female, AC(A/D) social gerontologist)
Skilled facilitation ‘I’ve sat in a lot of them, carers’ forums and things like that, and it’s always difficult to stop the conversation or guide the conversation away from your woes as a carer, or your concerns, and steer back to what the focus is.’ (#3 female)
‘What I met at that meeting [a carer support group], I can’t see that it served any purpose whatsoever. It seemed to be a competition in who had had it worse. To me it was badly regulated.’ (#2 female)
It needs to be well facilitated by people who can sit with what comes up in the room. They have to feel comfortable in allowing people to go where they want to in the session, you know, without it being a counselling session.’ (#7, female, CSP, counsellor)
  1. Note. AC(A/D) = academic clinician (ageing/dementia); AC(C) = academic clinician (compassion); CSP = carer support professional