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Table 2 The postnatal journey

From: Living beyond placenta accreta spectrum: parent’s experience of the postnatal journey and recommendations for an integrated care pathway

Superordinate theme: “Living beyond PAS”
Subordinate themes 1. Living with a different body
  Mother: “When they tell you all this stuff at the start, you're like, I'll do anything. You know, I just want my baby and whatever to go to the plan and I'll do whatever they say. At the time it's all about this baby, this pregnancy. But then it's not as easy as you think after the hysterectomy, so that's that part of my life over.” (PAS01M)
  Mother: “I think I'm on the right path, but it's still hard and I still kind of find there’s not much you can do to help your tummy, I feel like a hard lump right at my belly. I don't like the feel of it. Like I know I won’t don't go around in shorts or anything like that!” (PAS03M)
  Mother: “It’s upsetting because we’ll never be able to do this again, I got rid of my maternity clothes rather than keep them just in case. I have zero libido, I look disfigured. I just try to not be conscious because, you know, again, I'm lucky to have my two babies and everything else, but definitely affects me in terms of how I feel about myself and moving forward with everything” (PAS05M)
  Mother:I would never have had sex again if it was left behind I’d be so worried, it took about six months to get back to normal” (PAS16M)
  Mother: “It took me a long time to come to terms with having a hysterectomy…. I haven’t admitted to friends I had a hysterectomy. I don't know why, but I'm not ashamed of it. It's just, you know, because I kind of find when you tell people you get I think it is just because you just get a real pity party when you do tell people and that doesn't do anything.” (PAS06M)
  Mother: “I can talk about the accreta but I stop at the hysterectomy part…they happen to older women…it’s the stigma. I didn’t feel like a woman anymore.. I knew nothing about this- one day you’re fine and the next day it’s all taken from you…He didn’t know this was happening…. So does that mean I can’t have kids anymore? I’m still in denial” (PAS09M)
  Mother: “I was so young to have a hysterectomy. I actually was a bit more upset about that. And I was embarrassed. I was really embarrassed saying that to people” (PAS21M)
  2. Impact on relationships
  Mother: “People expect you to just forget everything, seeing your baby and saying “it’s all worth it”, once you’re home people thing you’re grand…I’m still going through this now. I don't think we're at the point that we would even survive a discussion about it. I think we just need to kind of get better. He's moved on because he had to move on.” (PAS03M)
  Mother: “And I just needed that space and to heal and even just be away from people” (PAS21M)
  Father: “It's over. It's done. I just don't like to dwell too much on this because I get stuck kind of unhappy. I think you're trying to deal with the difficult issue which brought us closer. I'm not very good at talking in general about anything that's serious.” (PAS01F)
  Father: “We don’t talk about it now…it all just comes back” (PAS04F)
  Father: “Its tough road (she) has been down she has had flashbacks…I didn’t have time to think about it, I just had to be strong… the good days are few and far between” (PAS10F)
  Father: “… it was traumatic. It was awful what we went through. But you just got to get on with it and make the best of a bad situation. She was carrying the trauma around, what she had gone through…like an elephant she keeps coming back to things… I think you have to put it away…I think it threatened us as she wasn’t coming to terms with it”. (PAS15F)
  3. Coping strategies (postnatal)
  Mother: “I'm just like using whatever coping mechanisms I can, like, you know, I used to listen to music, I used to sing in a lot of choirs when I was younger and I used to listen to, like, this particular choral work. And it just kept me calm. And I would just like focus on that and just listen to that and just keep calm” (PAS06M)
Mother: “I would never have done it without my mom. I have to say, my mom was amazing. She came every day and helped me and, you know, cooked me dinner. So I don't know how anyone can do it without having that extra support” (PAS21M)
  Mother: “So just even to talk to people on the phone or to see them when I was feeling up to it, that helped. And also the kids, you know, the smiles on their faces, that will help” (PAS20M)
  4. Posttraumatic growth
  Mother: “I was very lucky because that bond has been amazing through all of this. And I think it's made me just very, very grateful for being well now. And I feel very lucky now, I swim. I don't think I'd ever thought I'd be able to do what I can now back then.” (PAS21M)
  Mother:Yeah, and I'm stronger than I thought I was. So I'm just so grateful every day to have my baby and to have my own life and for health” (PAS20M)
  Mother: “It definitely humbled me. So many people get caught up in this rat race of trying to get bigger and better all the time. I do not take anything for granted now, I have more faith now. So it really humbled me in many ways.” (PAS19M)
  Father: “Like I would say, we're both huge changed, you know? Changed much for the better” (PAS02F)
  Father: “I want to be able to look back at baby pictures and say how far we have come not to look and be thrown back into that fear… I didn’t want her to worry about me or for her to see me break”. (PAS23F)
  5. Challenges with normal care “lack of specialist review”
  Mother: “I got a letter reminding me to get a smear, but I have no cervix….” (PAS06M)
  Mother: “But nobody tells you how to cope with that afterwards. It's not like not only on the cosmetic end of it, but like the practical side of it, like, you know, the jeans will be uncomfortable…” (PAS19M)
  Mother: “I find it hard to believe you are never looked at again” (PAS22M)
  Father: “We needed more medical back up in the early weeks.. we didn’t know where to get help. … it was like having a sick person back in the house, not like someone who has just given birth. You think she’ll bounce back, but this is different.” (PAS17F)
  6. What needs to change
  Mother: “I think that would be helpful, that kind of general information, you know, that everyone could read or that you could just hand somebody that that would be really good” (PAS 21 M)
  Mother: “There was no debriefing…no specialist review. There needs to be more follow up, recommend 6 week, 6 month and 12 month follow up … it’s so rare that it’s challenging to find information” (PAS09M)
  Mother: “And women who have a complicated delivery subjected to the standardized normal delivery, I think there should be more and more of training in how they care for women who've gone through hysterectomy. The standard care does not apply to us!” (PAS18M)
  Father: “Follow up 6 weeks, months one year and build in counselling … should be a standard level of aftercare… shouldn’t be cut off…. Specialist care (level of knowledge)… lack of sources of information. It was difficult,I probably wasn’t going to go for counselling. Men need to be encouraged to get support” (PAS08F)
  Father: “she had to have some counselling I think it helped a lot… there could have been a lot more information. Every man is so different… some may open up? Men struggle to open up…give them more information its quite a traumatic experience.” (PAS15F)
  Father: “I was doing some research trying to find out about placenta accrete and there didn't seem to be like a lot of information readily available that was quite clear and concise, so it was a learning curve.” (PAS17F)