In total, twenty-one participants were recruited through APP (n = 20) and an MBU (n = 1). An additional 11 individuals expressed interest but did not participate because they had not received a diagnosis of postpartum psychosis (n = 4), did not respond to follow up contact from the lead researcher (n = 3) or recruitment had ceased (n = 4). The final sample comprised 13 women and eight family members. Five of the family members were related to women who had taken part in the research, meaning that 16 unique episodes were captured. To maintain confidentiality, no comparisons are drawn between these family relations in the analysis (44). All family members described themselves as involved in the woman’s life during her postpartum psychosis. Interviews were conducted face-to-face (n = 11) or over the telephone (n = 10) and interview length ranged from 36 minutes to 109 minutes (Mean = 62 minutes).
Full participant characteristics are provided in Table 2. One woman had a prior diagnosis of bipolar disorder and three women were subsequently diagnosed with bipolar disorder. Three participants reported two episodes of postpartum psychosis. In this instance, both episodes were explored during the interview. All women and family members described themselves as White British and 19 were married or in a relationship. Sixteen of the participants were in employment and 17 attended further education. Women ranged in age from 25 to 44 years and their most recent onset of postpartum psychosis occurred between three months and 23 years ago (Mean = six years). Family members comprised four parents, three partners and one sibling. Family members ranged in age from 35 to 65 + years and the most recent episode of postpartum psychosis of their family member occurred between one year and 12 years ago (Mean = five years).
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Experience of mental health and psychological intervention
As shown in Table 3, Women and family members reported a 94% hospital admission rate. Most women were initially admitted to a general psychiatric unit (56%) and subsequently transferred to an MBU, totalling 81% MBU admission. Two women were readmitted to an MBU due to subsequent depression. During their experience of postpartum psychosis, almost half of the women were under the care of either a community perinatal mental health team (25%) or community mental health team (19%). Most (69%) had accessed some form of psychological input, including CBT (24%), counselling (19%), psychotherapy (12%) and Eye Movement Desensitisation and Reprocessing (EMDR; 6%). Four had sought this input privately, either self-funded or through their work. Participants varied as to how useful or comprehensive they had found these interventions.
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Findings from the thematic analysis
As illustrated in Figure 1, 12 subthemes were identified and then organised around three core themes: 1) Seeking safety and containment, 2) Recognising and responding to the psychological impact and 3) Planning for the future. The themes revealed recovery to be a complex process, with a unique temporal element, which commenced during the acute phase of postpartum psychosis but continued far beyond the initial episode. Transition towards recovery incorporated multiple psychological needs that had to be met to facilitate change and promote wellbeing, highlighting the importance of long-term recovery. Because of the overlap found across women’s and family members’ reported experiences, the thematic structure was developed from across the data corpus of women and family members. Each theme is described below and additional illustrative quotes can be found in Table 4.
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Theme 1: Seeking safety and containment
The first theme, comprising three subthemes, captured the unexpected and extreme distress reported by women and their family members during the initial acute phase of postpartum psychosis, which typically lasted a few weeks in duration. Participants did not want formal psychological intervention at this time and reported that practical support, emotional containment and safety were and should be prioritised.
Subtheme 1.1: “What is wrong?”
Participants reported feeling overwhelmed, scared and confused and believed that their lack of knowledge prenatally about postpartum psychosis, contributed to their sense of shock. For instance, a partner reported that antenatal classes often painted a “rosy picture” (Family member 21) and did not adequately prepare women for difficulties that could arise.
Family members often sought help once they reached a crisis point and felt they could no longer manage the women’s symptoms of postpartum psychosis and associated distress. Consequently, family members reported feeling helpless and became more dependent on mental health professionals to provide education, support and guidance. In particular, participants wanted an explanation for the experience which was often achieved through receiving a diagnosis of postpartum psychosis:
“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).
Having an explanation and label could relieve some of the worry and distress experienced. However, delays in being given an explanation and diagnosis exacerbated their sense of fear and uncertainty for the future and risked damaging relationships with health professionals at this critical time:
“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”
During the initial acute phase women reported extreme distress, they worried for their safety and worried about the wellbeing of those close to them, including their baby. As a result, most women were admitted to hospital at this time, where a range of experiences were reported. Women needed support from professionals they could trust in order to feel safe and cared for, which in turn provided reassurance for family members: "But she felt safe [at the MBU] and because she felt safe, we felt safe” (Family member 14).
A few women, however, said they did not feel contained or supported during their initial contact with services, which exacerbated their distress and had a long lasting and detrimental impact on their recovery:
“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).
Similarly some family members reported a delay at this critical time to accessing the help and support required. Barriers to care included staff shortages, poor continuity of care, problems sharing information due to concerns around confidentiality, perceived lack of compassionate care and inappropriate hospital provision:
“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
In the initial acute phase, both women and family described the woman’s presentation as much different to her usual self and expressed a sadness that they had missed out on the expected joys of parenthood. This extreme deviation from their usual character made it difficult for women to imagine a return to their previous wellness and resulted in feelings of hopelessness about the future:
“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).
During this critical time, family questioned if they were doing the “right thing” and likened their experience to “ploughing through fog” (Family member 19). Due to this perceived sense of helplessness, family members’ reliance on professionals often became more pronounced:
“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).
Throughout this period, it was important for participants to receive hopeful messages about the future and for family members to be guided on how to respond, as well as receiving recognition of existing strength and resources. This feedback helped to alleviate some of their concerns and enabled family members to recognise the value of their role.
Theme 2:Recognising and responding to the psychological impact
This theme comprised five subthemes and captured some of the psychological needs and mechanisms involved in recovery. It was important to participants that these needs were appropriately identified and responded to. Recovery was reported to be a slow process, influenced by the wider context including interactions with family, peers and professionals. This process however, was not linear, and sometimes featured relapse or the onset of depression.
Subtheme 2.1: “It wasn’t me” - Externalising the experience
In time, most participants started to view postpartum psychosis as a disorder related to childbirth which was out of their control. This illness representation helped to reduce self-blame and associated feelings of guilt that was associated with an earlier period of causal search:
“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).
Both women and family members sought to enhance their understanding by seeking information about postpartum psychosis. However, some participants, spoke of "horrible stories” (Woman 11) located online and this experience highlighted the importance of being signposted to credible and trusted sources. Information that was particularly valued was that which contained more hopeful and balanced messages about treatment, prognosis and recovery.
Subtheme 2.2: “Somebody else has got through this”
Participants highlighted the value of connecting and relating to others with similar experiences, which helped to dissipate feelings of isolation, normalise their experiences and provided "tangible [evidence]" (Family member 21) that recovery was possible:
“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).
Most women described that they needed to relate to other women with mental health difficulties prior to connecting with mothers or peers more generally. For some, this need was driven by their underlying perception or belief of them being a “bad mum or a failure” (Woman 2) and an associated fear of judgement. Many participants had not experienced mental health problems prior to postpartum psychosis and self-stigma was reported to be a barrier to accessing peer support. As one woman (Woman 11) highlighted: “I had such a stigma ABOUT MYSELF, even ABOUT MYSELF having it [postpartum psychosis]". By comparing themselves to others with similar lived experience, women were able to recognise and address their own stigma, and in time they were able to disclose some of their experiences which facilitated the process of adjustment and acceptance to their altered view of self.
Subtheme 2.3: Validation—Recognising and responding to the emotional impact
Following the acute psychotic phase, women said they were able to rationalise that many of the events they recalled were not accurately based in reality. Nevertheless, the emotional response associated with such traumatic events often remained with them far beyond symptom remission:
“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).
Many women sought psychological input to cope with the emotional impact of postpartum psychosis. Participants valued health care professionals who recognised and validated their experience. However, some women reported significant delays in receiving help and spoke of their frustration towards services which they felt did not incorporate the postpartum aspect or were not equipped to respond to a trauma, associated with a psychotic episode:
“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).
Participants wanted a more individualised approach that incorporated their specific emotional needs, whilst also considering their needs as a parent. To facilitate psychological input, women valued practical considerations, including provision of childcare, flexibility around timing and an option for home visits. Furthermore, women found it helpful to know their family were also being supported, because this enabled them to focus on their own emotional needs and prioritise their recovery.
Subtheme 2.4: Making sense and processing memories
Participants’ memories during the acute period of postpartum psychosis, including their hospital admission, were often described as being extremely distressing and associated with a perceived loss of control over their lives:
“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)
Many women felt they had behaved in ways which represented a significant departure to their usual self, which was difficult to process and make sense of:
“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).
Participants spoke of events in their lives that acted as reminders of these difficult memories, including their child’s birthday, attending hospital appointments and messages on their social media accounts. These memories evoked feelings of fear, sadness and guilt and remained with women for subsequent years, highlighting the profound and long-lasting impact of postpartum psychosis. Further contributing to their distress, women reported significant gaps and uncertainty around which memories were ‘real’ and which ones were part of their psychosis. Most participants said they needed time to talk through, make sense and process these memories on both a formal and informal basis. However, some women reported having had few opportunities for this with healthcare professionals and believed the emphasis was often on “looking forward” (Woman 5) or “getting the medication right” (Woman 13).
As women actively tried to cope with their emotional responses, their strategy use evolved over time, from rumination and avoidance of reminders (e.g., by moving house, deactivating social media), to actively seeking to change their relationship with the past; for example, by focusing on their achievements. Women also sought to fill in their gaps in memory; for example, by reviewing their medical notes, writing down their experiences and spending time with family to create a timeline of their experiences. By utilising these strategies to process their experiences, women were able to develop a narrative of the events, which helped to enhance their understanding and ability to cope.
Subtheme 2.5: Managing changing relationships
Throughout their accounts women and family members highlighted the importance of their relationships within the family to help facilitate recovery. These relationships were reported to evolve over time, in response to the multiple and often changing needs of women recovering from postpartum psychosis. In the early stages some women described feeling overwhelmed and questioned their ability to cope on their own or meet their baby’s needs. As a result, family members often took time off work to provide the practical and emotional support required:
“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).
In time, women sought to regain their independence and develop a routine which meant they needed less intensive support from their family. This was often difficult for family members who were worried about the risk of future relapse and sometimes became overly protective as a result. Participants valued professional input, including psychoeducation to help bolster the family members’ confidence and alleviate some of their worries. In particular, women valued input with regards to expected milestones and guidance as to when the family could “step away” (Woman 6); thereby promoting the women’s recovery and development of self-efficacy.
Further along in the women’s recovery, different coping styles were reported. Family members often believed they had to “move on” (Family member 14) and therefore avoided talking about the experience of postpartum psychosis. This approach sometimes raised further challenges for women who wanted to talk about their experience as a means to process and understand it. These different coping styles highlight the complexity and evolving needs within the familial relationships. Both women and family members reported joint therapy would be useful at this stage in order to openly talk through these concerns together and consider the best way to realign themselves within their relationship.
Theme 3: Planning for the future
The final theme, comprising four subthemes, related to the long-term impact of postpartum psychosis and consideration as to how to maintain and build on the progress achieved during the earlier stages of recovery.
Subtheme 3.1: “Too good to be true”
Due to fear of a subsequent episode or relapse, women and family members reported ongoing monitoring for symptoms or fluctuations which resulted in possible hypervigilance. As postpartum psychosis had occurred “suddenly” (Woman 4) and with “no indication” (Woman 5), women reported that their confidence had been affected and they questioned their ability to detect fluctuations in their wellbeing:
“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).
Participants often worried about the future and believed they needed additional long-term support from mental health services. In particular, those who had received input from a specialist community mental health team reflected on how difficult they had found their discharge from services at one year postpartum:
“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).
These concerns were associated with the feeling that it was “too good to be true” (Family member 15) and increased awareness of the possibility of subsequent relapse. Participants emphasised the need for ongoing professional input, akin to relapse prevention and believed that they needed to be more informed in order to prepare for the future management of their mental health.
Subtheme 3.2: “It lives with you”
Most participants reflected on how the experience of postpartum psychosis had influenced their decision-making regarding subsequent children. Some chose not to become pregnant again, due to the increased risk of a subsequent episode and concerns for the women’s wellbeing. Whilst others felt they needed a more positive birth experience and believed they were more equipped to cope: “it shouldn’t ever get as bad [again]" (Family member 16). Decision making was reported to a complex process that evoked a range of difficult emotions:
“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).
For some, subsequent pregnancies facilitated a more open dialogue between women, family members and professionals about the potential risks and how to minimise these, which was described as “healing” (Woman 2). However, others believed they had been let down by professionals and given the “wrong advice” (Woman 5). Being provided with accurate and timely pre-pregnancy consultation was considered important because it provided an opportunity to discuss any concerns and helped to alleviate some of the stress and worry experienced.
Subtheme 3.3: Contributing and giving back
A common theme in women’s recovery related to sharing their story and trying to turn their experience “into something good for someone else” (Woman 10). Women achieved this in different ways, including sharing their story online, attending talks, visiting MBUs and offering peer support. This often required women to be more open and honest than they would naturally be, but they reported to be driven to do so in order to help others. As one family member described:
“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).
Helping others and raising awareness also enhanced women’s recovery because it enabled them to talk through and process their experience, promoted connection with other women with similar lived experience and helped individuals to feel as though they had re-gained control over their lives:
“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
Over time, women demonstrated more compassion and acceptance towards themselves. To achieve this, women needed to adjust to their new identity; both as a parent and as someone with lived experience of postpartum psychosis:
“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).
Many participants reflected on the inner strength they had demonstrated and many highlighted positive changes as a result of their experiences. This included renewed appreciation for their family, increased “compassion and understanding for mental illness” (Woman 2), enhanced self-belief and gratitude for their child. Many used the word “lucky” when describing their experience and were motivated to live life to its fullest:
“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).
This recognition of renewed strength and resilience was important for many participants and enabled a more optimistic outlook for the future and enhanced their self-belief regarding their ability to cope.