Background
Method
Design
Inclusion and exclusion criteria
Data collection
Data analysis
Stage of Thematic Analysis [37] | |
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1 | Familiarisation and immersion in the data; including transcription and repeated reading of the data, looking for patterns and meaning. |
2 | Generating initial codes that appeared interesting and organising the data into meaningful groups at a semantic level. All data was coded at this stage. |
3 | Searching for themes and re-focusing the analysis at a broader level. Considering how codes may combine to form an overarching theme. |
4 | Reviewing and re(defining)the themes at a latent level, returning to the raw data, discussing with the research team and modifying/merging themes as necessary to develop a thematic map. |
5 | Defining and naming themes and creating a consistent and coherent ‘story’. |
6 | Reporting the outcomes and linking the themes to the research question. |
Position of the researchers
Rigour
Results
Sample
Sample characteristics
Participant characteristic: Women with direct experiences of postpartum psychosis | ||||||||
ID | Age range | Highest level of education | Work status | Relationship status | Child-ren | Time since onset | Treatment provider | Mental health history |
W1 | 25–34 | High school | Part-time | Relationship | 1 | 1–3 years | MBU, general psychiatric, home treatment, perinatal team | Depression, anxiety before and after PP |
W2 | 35–44 | University | Part-time | Relationship | 2 | 12 years + | MBU, general psychiatric, home treatment | Depression, anxiety after PP |
W3 | 25–34 | University | Self-employed | Relationship | 2 | 0–6 months (Most recent) | First managed at home, second MBU, home treatment | Depression after PP |
W4 | 35–44 | University | Self-employed | Relationship | 2 | 6–12 months | MBU (readmitted), perinatal team | Depression, anxiety before and after PP |
W5 | 45–54 | University | Self-employed | Relationship | 2 | 12 years + (Most recent) | General psychiatric for both, MBU second | None (Bipolar diagnosis given but does not relate to this) |
W6 | 35–44 | Training | Part-time | Relationship | 2 | 3–6 years | General psychiatric | None |
W7 | 35–44 | College | Un-employed | Relationship | 2 | 1–3 years | MBU | Bipolar disorder |
W8 | 35–44 | University | Part-time | Relationship | 1 | 1–3 years | MBU (readmitted), home treatment, perinatal team | Panic attacks before PP. Depression, anxiety after PP |
W9 | 35–44 | Post-graduate | Part-time | Relationship | 2 | 3–6 years | A&E, no immediate follow up. | None |
W10 | 45–54 | Post-graduate | Full-time | Single | 1 | 9–12 years | None | Depression, anxiety before PP. Bipolar after PP |
W11 | 25–34 | University | Full-time | Relationship | 1 | 3–6 years | MBU, general psychiatric, home treatment. | None |
W12 | 45–54 | College | Part-time | Separated | 1 | 12 years + | General psychiatric. Later admitted to MBU. | Bipolar after PP |
W13 | 35–44 | Post-graduate | Part-time | Relationship | 1 | 6–9 years | MBU, general psychiatric, community mental health team, IAPT | Depression, anxiety after PP |
Participant characteristic: Family members of people with direct experiences of postpartum psychosis | ||||||||
Age | Education | Employment | Relationship status | Child-ren | Time since onset | Treatment | Relationship | |
FM14 | 65+ | University | Retired | Relationship | 2 | 1–3 years | MBU (readmitted) home treatment, perinatal team | Parent |
FM15 | 35–44 | College | Full-time | Relationship | 2 | 3–6 years | A&E, no immediate follow up | Sibling |
FM16 | 65+ | High school | Retired | Relationship | 4 | 12 years + | MBU, general psychiatric, Intensive home treatment | Parent |
FM17 | 35–44 | College | Full-time | Relationship | 4 | 1–3 years | MBU | Partner |
FM18 | 65+ | College | Retired | Relationship | Not stated | 12 years + (Most recent) | General psychiatric for both, MBU second | Parent |
FM19 | 65+ | High school | Retired | Relationship | 3 | 6–9 years | MBU, general psychiatric | Parent |
FM20 | 35–44 | College | Part-time | Relationship | 1 | 1–3 years | MBU (readmitted) home treatment, perinatal team | Partner |
FM21 | 35–44 | College | Full-time | Relationship | 1 | 1–3 years | MBU, general psychiatric | Partner |
Experience of mental health and psychological intervention
Reported intervention | Totala | |
---|---|---|
Immediate intervention | MBU | 13 (81%) |
General Psychiatric Unit | 9 (56%) | |
Home Treatment team | 5 (31%) | |
General Hospital | 1 (6%) | |
ECT | 2 (12%) | |
Total hospital admission | 15 (94%) | |
Mental health provision | Community perinatal mental health team | 4 (25%) |
Community mental health team (CMHT) | 3 (19%) | |
Total under secondary care | 7 (44%) | |
Psychological input | CBT – accessed CBT – referral, but not accessed due to reported delays | 2 (12%) 2 (12%) |
CBT for anxiety group | 2 (12%) | |
Access to Psychologist within community perinatal team | 4 (25%) | |
EMDR | 1 (6%) | |
Psychotherapy (two accessed privately) | 2 (12%) | |
Counselling (two accessed privately) | 3 (19%) | |
Total offered/accessed formal psychological input | 11 (69%) | |
Other input accessed | Alternative therapy (Acupuncture, hypnotherapy) | 2 (12%) |
Art therapy | 2 (12%) | |
Online self-help for managing Bipolar disorder | 1 (6%) |
Findings from the thematic analysis
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). |
Theme 1: seeking safety and containment
Subtheme 1.1: “What is wrong?”
“My husband…his mother, my mother-in-law, were doing so much. They were hounding the staff in the psychiatric ward saying she needs a diagnosis like what is going on? and if she is going to a mother and baby unit, WHY? What is wrong?” (Woman 1).
“I was like you don’t even know me and yet you’re telling me that I’m going to be going home soon, well how do you know that, where’s that come from? If you don’t tell me what’s wrong, then how can you be telling me that I’ll be better in a bit” (Woman 6).
Subtheme 1.2: “My greatest hour of need”
“Well I think particularly the [first] 36 hours and how I was treated and the fact there was nobody in my greatest hour of need to help me... it was all very, very disempowering, I mean none of it could be helped, you know, the actual, umm condition… but umm that I felt very upset and let down by the response to what happened … I just felt that, well nobody could help me really, there was nobody there to hold me and help me when I needed it” (Woman 9).
“I felt like she was just sort of, labelled a crazy lady in A&E, that’s, that’s how I felt, and I felt like I was screaming and nobody was listening to me” (Family member 15).
Subtheme 1.3: “Ploughing through fog” – Need for hope and reassurance
“She was a bit like the frog climbing out the well, she’d, you know, would climb up a bit, then slip back into the well, a bit like that, but she didn’t see that, she didn’t perceive that she was getting better for a long-time” (Family member 14).
“There wasn’t anything that WE could do to make her better. It would be time and it would be medication and it would be the experience of the staff, that would make her better. WE could not do anything, other than to provide her with hopefully healthy snacks and umm... try and take her out and talk about something that wasn’t her illness” (Family member 14).
Theme 2: Recognising and responding to the psychological impact
Subtheme 2.1: “It wasn’t me” – Externalising the experience
“Cos you think, well I must have done something to make, you know, make myself ill, ‘cos why would I get ill and not somebody else, sort of thing, obviously you start thinking it’s your own fault for being ill, or that you’ve done something, not done something, erm, that kind of thing, and I think it takes a while to realise well actually it’s just, that’s, it’s just something that happened, that it’s just unfortunate that it happened, but it’s very difficult to get your head round that” (Woman 13).
Subtheme 2.2: “Somebody else has got through this”
“I think it’s helped me not to feel like I’m alone because... reading things from umm, action on postpartum psychosis [APP] and talking to the other women on the ward where I was, we all had different things, some people had had psychosis, 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 2.3: validation – Recognising and responding to the emotional impact
“At the time, it felt that those things were really happening, that I felt that I really did experience the death of all of my family members and err... I wouldn’t have been able to speak like this about that, you know maybe even a year ago, I don’t know. Umm, err, it was hugely traumatic” (Woman 9).
“CMHT’s you know, you don’t fit this tick box now, you don’t fit that tick box. But you are left with this life that is destroyed.... I needed, I needed something, I needed some kind of psychological support. I needed trauma therapy, I needed somebody to understand that these things were REAL TO ME” (Woman 7).
Subtheme 2.4: making sense and processing memories
“I remember this, she wasn’t a very nice nurse that was on there and she seemed to take great pleasure in telling me that I was sectioned and I, and I, just, it really sort of frightened me so much when I heard that, umm and I think that was the horrible thing, it was like the power and control was taken away from [me] completely” (Woman 12).
“I just unravelled as a person and was needing 24-hour support, for months, probably about 6 months really. Umm err and that I couldn’t enjoy my children because of it, you know, like I lost all of that really, I lost the ability to breast feed, all manner of things, more than just, and the shocking, the shocking departure out of my own home with police and ambulance and the whole street out, you know like, it’s very traumatic to process, particularly you know, if you’re able to, you know, have been, quite, you know, well-functioning up until now” (Woman 9).
Subtheme 2.5: managing changing relationships
“They [family] were totally invaluable, we wouldn’t have been able to still, be functioning as a family if they hadn’t have dropped everything at that time” (Woman 9).
Theme 3: planning for the future
Subtheme 3.1: “Too good to be true”
“One of the things that was really bothering me, was when [partner] would say things like ‘are you feeling ok?’ if I was saying something, or you know, just look at me, really concerned, sort of, yeah just, it just made me feel, like it would always, like really shook me, because I’d be like ‘oh gosh, am I not ok?’, because I had no, no, umm self-awareness before anyway, it made me just think ‘OH MY GOD, maybe something’s wrong with me again’ and I just can’t even tell” (Woman 11).
“So the first year you’re given all the support... and then after that, where I believe that every single person that I have ever spoken to with postpartum psychosis, says yes, that first year is hideous, but WHAT about that second year” (Woman 7).
Subtheme 3.2: “It lives with you”
“It lives with you… for a long time, and then obviously we’re thinking you know, potentially about more kids, and then well, is it going to come back and you know, so, it affects more than just you’re ill and you get better from it… you’ve got to deal with this for the rest of your life” (Family member 21).
Subtheme 3.3: contributing and giving back
“If something positive can come out of it, it’s, it’s done good, hasn’t it, if, you know, she’s not gone through it in vain” (Family member 16).
“How do I make sense of it now, I do all the, I raise awareness, I do the talks because I had no control, I had no power and because of the area in which I live, and only because of where I lived, I believe I lived. Had I have been in a different postcode without a specialist team I wouldn’t be alive and [that’s] how I gained control over that” (Woman 7).
Subtheme 3.4: Recognising internal resource and seeking acceptance
“I just used to really miss, how I used to feel… I felt like I was quite a confident person and... umm nothing phased me and... I just felt like I wasn’t that person anymore and umm… in more recent years I’m closer to my old self than I ever have been, but umm, but I suppose I have to accept that I’m never going to feel like that again” (Woman 12).
“I had this massive, massive moment where I knew I was back and some, and I looked around and I watched all my family laughing and my daughter, she had a couple of her friends and there were her cousins, all mucking about and I thought ‘my god’ this would never have happened if I had died… But because I had good treatment, I looked around and just thought I am the luckiest person in this world” (Woman 7).
Discussion
Strengths and limitations
Clinical implications
Subtheme | What is needed? | How should this be delivered? | ||
---|---|---|---|---|
Women | Family | Professionals | Service/policy | |
1. Seeking safety and containment | ||||
“What is wrong?” | Prompt assessment and recognition of postpartum psychosis (PP) | Support to boost their understanding of PP, signposted to credible information, such as APP literature | Complete timely assessment and provide factual information regarding prognosis once diagnosis is made | Specialist training for staff in how to respond and manage PP and increased awareness e.g., through antenatal classes and midwife |
“My greatest hour of need” | Emphasis on feeling safe and supported. Ideally inpatient care provided in an MBU | To be involved in decision making and informed of treatment plan | Emphasis on building a relationship and devising a care plan | Need for local MBU provision and specialist community mental health team input |
“Ploughing through fog” - Need for hope and reassurance | To be given optimistic and realistic messages about the future | Existing strength and resource recognised and utilised within the family | Need to promote hope, drawing on prognosis literature | Clear clinical pathways. Clarity about how to involve family |
2. Recognising and responding to the psychological impact | ||||
“It wasn’t me” - Externalising the experience | Support to develop a balanced understanding of PP | To enhance women’s understanding e.g., through own reading and involvement in acute phase | Develop psychoeducation with woman and family. Help to externalise experience and reduce self-blame | Ensure provision of specialist knowledge available in services e.g., through perinatal team |
“Somebody else has got through this” | Connecting with peer networks to help normalise experiences | Linking to other family/partners, share experiences and coping | Help to build up confidence and address potential barriers to peer connection | Develop links with wider peer networks e.g., APP |
Validation – Recognising and responding to the emotional impact | Emotional impact of PP recognised, utilise both formal and informal support | Family consider their own emotional needs e.g., liaising with MBU staff, GP and personal networks | Complete a flexible and holistic assessment, drawing on biological, psychological and social aspects | Ensuring streamlined clinical pathways, including increased access to psychological therapies |
Making sense and processing | Have someone who is knowledgeable about PP to talk to and to make sense with. Allow time to do this | Be guided by the woman e.g., if they want to create a timeline, fill in gaps, then support this process | Recognise long term impact. Promote techniques to enhance coping skills, self-care, self-compassion and acceptance | Ensure pathways consider all areas of need, including access to psychological therapies |
Responding to changes in the relationship | Opportunity for joint input to talk through any concerns | Professional guidance, including best ways to support, when to withdraw | Provide guidance to family, help allay their fears and anxieties | Consider family intervention, drawing on evidence-based approaches |
3. Planning for the future | ||||
“Too good to be true” | Information regarding symptoms to monitor and how to manage | Support how to respond, e.g., when experiencing increased stress | Provide relapse prevention planning – identify triggers and early warning signs | Future plan for when perinatal team withdraws one year postpartum |
“It lives with you” | Opportunity for pre-conception counselling | To be involved in counselling, opportunity to share own concerns | Pro-actively offer advice to inform decision making | Further develop clinical guidelines re: pre-conception counselling |
Contributing and giving back | When appropriate, utilise opportunities to ‘give back’ and share story | Facilitate involvement and incorporate into service development, e.g., developing peer support networks | ||
Recognising internal resource and seeking acceptance | Strengthening resource, facilitated in earlier stages | Utilise therapeutic approaches that draw upon pre-existing strengths – acceptance and compassion based approaches could be considered. |