Table 4 Additional illustrative quotes

Theme 1: Seeking safety and containment

1.1: “What is wrong?”

“Ye it was a big, ye unexpected, no previous unwellness, no, no fore warning because it’s so sudden, and just, ye, it, umm the unravelling meant a complete loss of functioning really” (Woman 9).

“I just sort of sat on the floor with her and tried to, tried to talk to her, as I would if she was the xx I love and know, erm, but it was very difficult, because, she was obviously very, very ill” (Family member 15).

“These people are much cleverer and know much more about it than I do, so to hear it from somebody who knows what they’re talking about … somebody that you trust to give you the right answer, you know, says something, you think right, that’s what going to happen then” (Family member 21).

1.2: “My greatest hour of need”

“I remembered that I could trust her and I said ‘oh will you promise me something, that you’ll stay by my side and make sure they don’t kill me’. I did drift off to sleep at one point and I woke up and she was sat by my side and that meant so much having her there” (Woman 12).

“I’d met up with the crisis team the next morning, but they said, no she’s fine.. and then my husband went in afterwards and he was, ‘actually she’s not fine, that’s not how she is’” (Woman 13).

1.3 “Ploughing through fog” - Need for hope and reassurance

“Umm, we did umm, mindfulness, so they would have a weekly session where we would do some mindfulness but I also had access to talk to a psychologist and just umm, building relationships with the staff who were there and just being able to share your thoughts and feelings with them, not in a, not in a labelled way, not in a CBT or, you know whatever, but just in a, in a supportive environment of being able, of them being there and being able to just be a friend and be umm, be a support as well” (Woman 4).

“Erm, so we just really all sort of, muddled through, doing the best we could just trying to be as supportive as we could, and, talking amongst ourselves, helping each other. We did find, once we did get to the Mother and Baby unit that that was much better because, there was, you could always find somebody you could have a little chat to, and you could do it unobtrusively sort of thing” (Family member 19).

Theme 2: Recognising and responding to the psychological impact

2.1: “It wasn’t me” - Externalising the experience

“Even over a long period of time that’s [memory] never come back but hmm obviously from my ex describing it and from the doctors as well, because you learn about these things through other people when you’re not quite with it yourself, but it was like I wasn’t even there. I was kind of, it wasn’t me at all. I could have killed everybody you know, in the whole town and I wouldn’t have been aware of it.. you know” (Woman 5).

“I suppose once, I’d sort of looked into, into it [postpartum psychosis], that it, it explained what had been going on, and it certainly explained obviously the, the sort, you know seeing things, hearing things side of it, and, but yeah, it also explained sort of how normal behaviour had sort of turned into something that was disruptive” (Family member 20).

2.2: “Somebody else has got through this”

“Erm, but I remember, well, the one thing that sticks in my mind is, erm, I was, obviously, was looking at information about postpartum psychosis, ‘cos I found a charity, erm, and I managed to speak to somebody who had had postpartum psychosis, and she’d had it twice… suddenly I thought, you know you can, somebody, somebody else has got through this” (Woman 13).

“It wasn’t just me being a bad mum or a failure. Other people have had the psychotic, same type of thoughts and feelings that I’ve had. It wasn’t just me being mad or.. it made me realise that I was very poorly and it wasn’t my fault and I have got better and I got through it” (Woman 2).

2.3: Validation – Recognising and responding to the emotional impact

“You know they would never say to a woman that had been attacked ‘well that’s no big deal’ but people will separate psychosis, because to them it’s not real, to them it never happened, but it did happen to me, something was coming up my hill, it was going to kill my kid and if I didn’t kill myself he was going to die. You know it’s as simple as that, I really believed my baby was going to die and be killed” (Woman 7).

“I said to her [GP], you know, I can’t remember the first three years of my daughter’s life, and she said, well, that’s a grief that you will just carry with you, and I thought, actually, that’s really nice, that somebody acknowledged that” (Woman 10).

“I was worried about [partner] and how he was coping because it was, it was a LOT to deal with and umm… so they [MBU staff] spoke to him about how he was and they’re really caring of the families of people who are suffering on the ward and that, that meant a lot.. umm and it means, it stops me worrying, because I could, they could say to me, whether it was true or not, they could say ‘we’ve got them, don’t worry, you don’t need to worry about their emotions and their needs, worry about you’ and I think that was really helpful” (Woman 8).

Subtheme 2.4: Making sense and processing

“But it [EMDR therapy] was the key to be able to help me put that back into my longer-term memory and, and to get over all of those things that had happened” (Woman 9).

“I really wanted to speak to someone, and I think that’s the problem, I wanted to speak to somebody that kind of under, maybe understood a bit more, or, that counselling type of thing, I don’t know whether that was the best thing to do, but, obviously a lot of times when you’re ill, it’s more about getting the medication right, and not actually… talking about what’s gone on” (Woman 13).

“We’ve spent a long time talking about things like that. I think that’s important, because obviously she wants to. I know she won’t remember it, but she at least wants to know how, her son was born, you know and that, it’s such a huge milestone in your life, how would you not want to know” (Family member 21).

Subtheme 2.5: Managing changing relationships

“So my family, have found it VERY hard to understand my illness, and, er, and, (sigh) and the impact, so for the, the sort of, er, ripple effect, if you like, that goes on after your illness and during your illness is really strong” (Woman 10).

“Since she’s been out [of the MBU], we’ve been very careful about discussing it because we don’t want to upset her, by umm, bringing back the memories of being in there” (Family member 14).

“I think, ye maybe like a family education, so to be able to go look, we now recognise she’s at this particular stage, that means that she’s LOADS better, you know, she’s only just going through this last phase to make sure she’s completely got it out of her system, but you can now start to allow her that freedom to spend a bit of time on her own and all that kind of stuff and they can then start to step away a bit, like feel a bit of relief for them” (Woman 6).

Theme 3: Planning for the future

Subtheme 3.1: “Too good to be true”

“I think the issue that I’m going to hit with it, is the, I’m only under the care of the perinatal team until my daughter’s one and because I was, because my baby was older when I had my psychosis and I’ve had a very long recovery time, that’s going to happen quite soon, and so that is one the limitations of the, of the service here, something, I know I’ve heard them.. talk about. They’re considering whether stopping at one is the right time, but for me that is going to be a real barrier going forward for my recovery” (Woman 4).

“I mean I know the older you get you don’t need as much [sleep], but to her, it’s like, a major thing, ‘cos it makes her, she’s frightened of it making her psychotic….. But, I’ve tried to get over to [Daughter] it’s no big deal, but I have to be careful, because she’ll sort of say to me, “well it’s alright for you, you don’t have to do anything if you don’t want the following day”, which is true… erm, and I’ll say, yeah, but I’m trying to say to you, “don’t let it, you know, take over your life, don’t let it in, don’t let it be, get the better of you” (Family member 16).

Subtheme 3.2: “It lives with you”

“The perinatal psychiatric team saw her throughout her pregnancy and she was given, erm, medication on the night of delivery, and luckily it didn’t happen again, I mean she still at times has, er, periods of anxiety, but whether that would, have happened anyway even if she hadn’t have had postpartum psychosis is something we, we don’t know, but we won’t ever know” (Family member 19).

“I’ll obviously start talking to [child] about it, and… some point down the line, umm then yeah, may be, there may be moments again where I’ll need to… find out a bit more information about what happened to me, umm because, it would be important for xx to know” (Woman 5).

“I think if I’d heard of it, I would probably have thought twice about having children myself (laughs) it’s so horrific, you know. Err I was, it was quite a surprise when she said she wanted another baby, I must admit.. ‘cos I thought, God, surely you don’t wanna go through any of that again, she said, “oh well it’ll all be monitored” and everything else, well it wasn’t done very well. I mean she was put on something but, she could have been sorted a lot better from the beginning, there wasn’t a note at the hospital where she had the baby… It wasn’t good enough, you know, they, they weren’t informed enough I don’t think” (Family member 18).

Subtheme 3.3: Contributing and giving back

“I think she sort of gets, erm, satisfaction from the fact that if she could do anything to stop somebody else having, sort of a severe problem in, in the future, then any research that can be done, anything that can be done to help, I mean she actually, erm, saw your request for help and sort of spoke to me about it and said, erm, would you be willing to do this, and she said, you know, she said, I’ve done quite a few, but would you be willing to contact, erm, this lady and sort of give her your point of view, and you know, and I said, well yes… because, if it could help some other family in the future” (Family member 19).

“I’ve tried to answer people’s questions honestly and try and help, because if, if, say it’s one person from going through what I went through, by being a little bit more honest than maybe I would ordinarily be comfortable with then I’ll do that” (Woman 8).

“I think it’s helped me to process... umm and I think it’s helped me not to feel like I’m alone because… I didn’t know anyone that had had postpartum psychosis so by talking about it, I found out about quite a few people… and knowing I wasn’t on my own umm and that I wasn’t going mad and it was a real thing and… umm, that we would get better, definitely, definitely helped” (Woman 8).

Subtheme 3.4: Recognising internal resource and seeking acceptance

“Ye, ye, ye, and more recently I can think about it much more positively, you know, because I used to think things like, “why on earth did that happen to me?” sort of thing and now, I think of some of the.. you know, it’s made me very strong I think and it’s also helped me to, maybe help other people going through it so I think of it, you know much more positively now” (Woman 12).

“I guess in some ways, we’ve… come out a bit stronger as well, you know there are some positives you can take from it as well. We’ve lived through something and dealt with it as a couple, that a lot of people maybe haven’t or couldn’t so, you know it has, a small, you know positive in it” (Family member 21).

“I, I just think in the grand scheme of things that we, we were, as terrible as it was, and it could have been a lot better, we are lucky that, you know xx made a full recovery, and that, you know, nothing, nothing detrimental happened to her or any of the children” (Family member 15).