New Research Study on Partner Experiences.

Men’s experiences of having a partner who requires Mother and Baby Unit admission for first episode postpartum psychosis.

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Perinatal mental health services and organisations such as APP are becoming increasingly aware of the need to support and involve partners of women who have experienced postpartum psychosis (PP). However, there has previously been little academic research into the needs of partners during this time. A recent study has focused on the experiences of seven men whilst their partner and baby were admitted to a Mother and Baby Unit (MBU) for treatment of PP. The author of the paper has written a piece for APP to tell us more about the findings of the study and how this could affect how services work with partners in future.

Research has told us that PP can have a life changing impact on women’s experiences of motherhood, relationships and sense of self. Their partners also often need to adjust to understanding the condition and support recovery. Perhaps understandably, the vast majority of perinatal health research and clinical practice has previously been focussed on the wellbeing of the mother and baby. Whilst dads are being increasingly recognised it is often in their capacity as a partner who is supporting the mother, rather than as a person in their own right. In the research, it remains unclear how dads are affected by the severe and sudden nature of PP and by the separation from their partner and baby during their admission to an MBU. This study aimed to explore dads’ experiences of early fatherhood and relationships during their partner’s admission for their first episode of PP, to help improve our understanding of their needs and how services can work with families during this difficult time.

How was the study conducted?

Seven fathers were recruited from two UK MBUs. For all participants, this was their first child with their partner. All of the men’s partners were inpatients on an MBU at the time of being recruited but were nearing discharge after having some periods of home leave. The men took part in interviews, which were analysed using an approach which focuses on making sense of how people understand their individual experiences.

What were the main findings?

The participants’ stories reflected the natural uncertainty surrounding the birth of a child, which was amplified by the unexpected onset of a severe mental health problem. There were two main themes within these fathers’ stories which are detailed below and illustrated with quotes from the interviews. All names used are pseudonyms to protect the participants’ anonymity.

Main theme 1: What the f**k is going on?

This theme reflects the lack of understanding surrounding PP and its treatment. Frustration and anger were common, perhaps due to feeling helpless, loss of control and fearful. Most men found it difficult to recognise the early stages of PP, as they were not sure what is normal for a new mother. For most, this was their first child and their first direct experience of a mental health difficulty.

I… didn’t really see the… signs because A. I’m not experienced in them and B. I knew there was something up but I put it down to her being absolutely over exhausted. (James)

As symptoms progressed to the more acute stages, men expressed a range of emotions such as shock, confusion and embarrassment. Experiences of seeking professional help were varied. Health professionals (e.g. GP’s or A&E staff) didn’t always know about PP which sometimes led to a delay in treatment and frustration for partners. Most of the participants didn’t know what PP was when the diagnosis was first given, although having a name for their partner’s difficulties often seemed to give some sense of understanding and hope. Some found the internet useful for finding more information, including personal stories from other families on the APP website.

At the time, if I remember rightly, I didn’t even hear the postpartum… it was just psychosis… So I didn’t even relate it to any giving birth…. It was just, my wife’s gone psychotic. (Neil)

Following diagnosis, all participants wanted to be involved in their partner’s care; however not feeling heard or valued by professionals was common. Many felt their concerns were dismissed and not taken seriously. There was lots of frustration with confidentiality procedures and the priority seemed to be on mother and baby, not dads. Some were comfortable in challenging this and asking for information, others were less so. When done well, information sharing and involvement helped dads’ understanding of what was happening for their partner.

For the first five days, all I got was, ‘you’re not married, your son’s not registered, you’ve got no right to know where they are or what’s going on’. And that’s all I got, from everybody. So all I knew was, my son had disappeared, my girlfriend had disappeared. (Tim)

I think I might have got on the doctor’s nerves a little bit. Because [the doctor] was…

like, ‘well, this is about me and your partner’, but obviously [my partner]… might not

even think of the questions that I think of. (Neil)

Main theme 2: Time to figure out how your family works

This theme captures the impact of PP on the roles, relationships and identity within the family.

Most participants felt more responsibility to care for both their partner and baby as PP symptoms progressed. Many dads felt pushed to their coping limits and appreciated help from family and friends. Some women were first admitted to general inpatient units which were not felt to be very helpful or appropriate. MBU admission was usually a relief and gave permission for dads to look after themselves. Many trusted the MBU staffs’ expertise and saw it as an opportunity for learning and growth. However, handing over caring responsibility was difficult for some.

We were doing the right thing… It was a relief that somebody else was going to look after her and the medication.... I could come in, give her… all my attention for… a few hours in the morning, a few in the afternoon, a few in the night… And I knew the baby was being taken care of. But then I’d go back and have time to… recharge my batteries. (Michael)

Most dads felt a huge loss for their relationship and partner during this timeMany felt alone; the shared experience of starting a family with their partner had taken very separate pathsSome went through a grieving process as their partner’s identity seemed to have been changed by PP. For others PP was seen as something external ‘taking over’ their partner.

She was here but I thought her personality was dead, so my relationship with her personality is dead … My personality clicks with her personality, yeah and if she’s not there… our relationship isn’t there… it felt like she was dead. So when I was at home I felt like I was single. I felt like I’d lost everything. (Ashley)

Men tended to feel less loss around the separation from their child; this relationship was often seen as more stable and positive. Many had started to reconnect with their partner as they started to recover, but the long-term impact was unclearMost did not want more children because of future risk of PP.

It’s just not worth… the risk… to my partner. And obviously the baby would be there as well. That’s… one of my concerns… she might never have a brother or sister… I’ve got a brother and he’s my best mate... My child won’t have that and I feel guilty about that, for her. But… I just don’t think, well, at this point in time anyway, that it would be an option. (Michael)

PP delayed adjustment to being a family, which was often made worse by large distances between home and the MBU. There were lost opportunities to do ‘normal’ activities with the baby and some expectations of parenthood were not met.

You feel, a bit deflated…. Because you’ve got two weeks off from work, you have all these plans to do these great things and bed down and suddenly that two weeks is gone. Because you’re in hospital. And then you… need to go back to work but we haven’t had time to bond at home. (Neil)

For some it was hard to parent the way they wanted to on the MBU but others had more positive experiences. Some were worried about how family life would be when returning home, whilst others saw their family as ‘back to normal’ already.

I don’t want to say it’s made us grow up… but I suppose it has... It’s made us… become my parents… It’s a different life to the one we’d sort of planned, even while she was pregnant. (Matthew)

Recommendations from the research

Whilst only a small number of experiences were reported in this study, some recommendations can be made to try to improve future practice and research in this increasingly important area:

  • Improved awareness of PP is needed, for both health professionals and the public, to allow faster diagnosis, access to the right treatment and less stigma around the condition.
  • Improved access to MBUs is needed. In this study, general mental health services were not viewed as appropriate by dads (previous research has found women feel the same). Many men had to travel large distances to visit their family due to the lack of availability of local units, which created increased stress, separation and financial pressures.
  • Health services need to improve how they work together with fathers. Many felt excluded from their partner and baby’s care, causing more frustration and confusion.
  • The timing and type of support services offer to fathers should be considered; even if men say ‘no’ once they might need help in future. Many of the participants reported not feeling ready to talk about what was happening until the time was right for them.
  • Sometimes services do get it right! Most men had positive experiences of MBUs and saw them as a valuable resource which helped their partner’s recovery and their own ability to support their family.
  • The sample of participants was limited; more research is needed with partners with different backgrounds and family structures (e.g. different cultures, families with multiple children).

The researchers would like to thank all of the men who took part in the study and their partners for consenting to this at a challenging and emotional time for their families. Thanks also go to the staff teams at the MBUs who helped in recruiting for the study.

Kayley's Story - The Spartan Race for APP!

A huge congratulations to Kayley Easterbook for taking on the huge challenge of the Spartan Race last week. 

"The event was brilliant, I really enjoyed myself." said Kayley who is raising money after her experience of PP. 

Kayley endured the mud and obstacles after her hard work and training for the event:

"The white APP shirt got totally covered in mud but I wore it around nonetheless".

Thank you so much for doing this Kayley. 

Please support her amazing effort by clicking here.

Kayley's amazing triumph
Kayley at the finish line, an amazing triumph!

 

The Spartan Sprint Shirt and Medal, what an achievement!
The Spartan Sprint Shirt and Medal, what an achievement!

The Impact of the Eastenders Storyline on Women with PP - Lewis Roberts reports at The UKIMS Conference 2016

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Lewis Roberts, a Medical Student researcher working with APP to understand the impact of the EastEnders storyline on women with experience of PP, presented his findings at the UK and Ireland Marcé Society (UKIMS) last week. Lewis tells us about the experience….

On Sept 15th, I attended the UKIMS annual meeting in central London. The day was led by a mixture of perinatal academics and practitioners, presenting a wealth of emerging research in the field of perinatal mental health. Topics ranged from paternal PTSD to the impact of antenatal antidepressant treatment. I was very fortunate to be given the opportunity to present my research project at this event. The experience was a real privilege and something that I won’t forget.

The work that I presented investigated the impact of the recent EastEnders storyline, where the character Stacey experienced postpartum psychosis, on women with experience of the condition. After carrying out individual in-depth interviews with nine women recruited via APP, who had recovered from postpartum psychosis, five key recurring themes were found. The EastEnders portrayal impacted upon: ‘public education’, ‘stigma’, ‘personal disclosure’, ‘reassurance’ and ‘family relationships’. I briefly summarised each theme during my fifteen-minute talk, before highlighting some of clinical implications this work may have. These implications include identifying the significant impact that improved public understanding of postpartum psychosis has on women who have experience of the condition, aiding recovery and communication and decreasing stigma. The study highlights the potential benefits achievable, and risks to be aware of, for organisations like APP when collaborating with script writers in the production of future mental health drama storylines.

This was my first experience of presenting this work outside of university, and while I was excited at this prospect, I was very nervous about delivering a talk to an audience of eighty people. However, although I was unable to prevent my legs from trembling as I stood at the front of the conference room, I feel that I delivered this talk to the best of my ability, and couldn’t have asked for any more. The presentation was received well by the enthusiastic and inquisitive audience, and a few individuals approached me with questions about the research during the coffee break which followed my talk.

It was inspiring to spend a day amongst such an engaging group of professionals who were so passionate about perinatal mental health, and it has definitely encouraged me to pursue further research in this field of healthcare. I am extremely grateful to the Marcé society for giving me the opportunity to present this research, and I hope that I can build on this valuable experience by presenting this work to future audiences.

Postpartum Psychosis Stories Nominated for Mind Media Awards

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The shortlist for this year's Mind Media Awards features four powerfully told stories of postpartum psychosis. They are: 

Mind's CEO, Paul Farmer said, "The media we consume, whether through TV documentaries, print news, digital blogs, radio or film, has a huge impact on people’s attitudes towards mental health problems." 

We believe that all four of these sensitively told PP stories go some way to raise awareness of the symptoms, help reduce the stigma surrounding this mental illness and help those who develop Postpartum Psychosis get diagnosed and treated more quickly.

The winners will be announced on 14th November. 

APP Trustee To Help Shape Ten Year Strategy for Mental Health Research

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Congratulations to APP trustee Clare Dolman who has been invited to take part in the development of a national ten-year strategy for mental health research. 
 
The recently published Five Year Forward View for Mental Health recommended that the Department of Health, working with others, should set out a ten-year strategy for mental health research. The work has been divided into different areas to cover Basic Research, Translational Research, Population and Health Services Research and Children and Young People.  

Clare, who lectures at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London on service user research, often referring to examples from her own experience of bipolar disorder and postpartum psychosis, has been asked to be Deputy Chair of the Population and Health Service working group. Clare said,
 
“I’m very pleased to have been asked to take part in this important exercise, especially as it enables me to represent people using mental health services, particularly perinatal services”. 

Overseen by Professor Chris Whitty, the government’s Chief Scientific Adviser, these groups will meet over the next few months with a view to publishing recommendations next year.

This week also saw the launch of a paper written by Clare on on decision making in pregnancy for women with bipolar (see photo) which you can find here. Double congratulations!

Kayley and Debbie are in Training for APP

Kayley in training
Kayley in training

We're delighted that two supporters are taking part in two different races to raise money for APP this October.

On 1st October, Kayley is taking part in the Spartan Sprint in Windsor Great Park. Spartan races are full on, featuring over 15 obstacles such as a rope climb, fire jump, tyre drag, wall climb and more over 5-6k. Kayley has been in serious training, lifting weights and getting Sprint fit.

Please wish her well and increase her motivation by sponsoring her amazing effort. All funds raised will go towards raising awareness of Postpartum Psychosis. We're hugely grateful to Kayley not only for signing up to this physical challenge but also for distributing our patient information guides in her local health services and sharing her personal story

A few weeks later, Debbie takes on the Great South Run in memory of her cousin Rosy. It's a fast and flat 10 mile course through Southsea and Portsmouth. She's also been in training, running rain or shine and just got her APP vest and flyers in the post. 

Please support Debbie's amazing efforts to raise vital funds to help keep our peer support and information services available to everyone who needs them.

Find out more about APP's work and read personal experience stories on our website. We provide the only PP peer support network in the UK. 

Huge Thanks To Helping Hands

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Warm thanks go to a charitable group of women from Swadlincote who collectively call themselves "Helping Hands" for their recent support of APP. 
 
A table top sale and two further sales managed to raise the fantastic sum of £1280.09. 
 
The group worked so hard for APP this summer as did their friends, who not only donated items for the sale but also: all the produce needed for the most delicious of homemade teas. 
 
Special thanks to Heather Jane Osborne and the kitchen ladies and also to Janet and the rest of the Helping Hands group"
 
Find out more about our information and peer support services for women and families affected by PP and please help us continue this vital work. 
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Katy's Story Gets APP in the Daily Mail

katytodayCongratulations to APP Media Volunteer, Katy Chachou, who pulled out all the stops to get her story told in a sensitive, informative and positive way by the Daily Mail.

APP was contacted by freelance journalist Jane Feinmann following the paper's recent report on the tragic case of Alice Gibson-Watt

Katy and her husband George were interviewed for the piece and a photographer sent to get pictures of mother and daughter today. Katy even agreed to be contacted while on holiday abroad to make the article happen.

Also included are some great quotes from APP Chair, Giles Berrisford, alongside informed comments from perinatal mental health experts Dr Judy Shakespeare and Dr Carrie Ladd from the Royal College of General Practitioners. 

It's a great piece combining a traumatic personal experience with expert opinion. It demonstrates that PP can happen to any new mother but that full recovery is possible. We hope it will help raise awareness of PP among a large and new audience. Happily, the online article also carries a link to APP's website at the foot and embeds our stigma-busting video. 

Huge thanks to Katy and Giles for their excellent work! 

Helping Hands Grand Sale for APP

A Derbyshire-based group of women who collectively call themselves "Helping Hands" have pledged to support APP this summer by organising sales of clothes, bric a brac , jewellery , children's items and much more besides . 
 
The last of these brilliant events, the "Grand Sale" takes place on Saturday 10th September and these lovely ladies are asking APP trustees , members and friends for contributions of any unwanted items . They are prepared to collect from a wide area including Staffs , Northants, Derbyshire, Cotswolds. 
 
If you can donate please let Heather know ASAP : email heather@www.app-network.org
 
The sale will be a treat for treasure hunters with lots of great stuff to rummage through, some brand new and all very affordable. Tea and cofee and homemade food will also be for sale. See you there! 
 
Warmest of thanks go to "Helping Hands " for supporting APP this summer . 
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Perinatal Mental Health Toolkit Launched

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The Royal College of General Practitioners has launched a new Perinatal Mental Health Toolkit designed to support GPs and other healthcare professionals as a go-to collation of resources that could support them to deliver the care their patients with perinatal mental health conditions need. 

But the Toolkit isn't just for GPs. It contains plenty of patient and even partner resources including APP's Insider Guides and Peer Support Service. 

Dr Carrie Ladd, RCGP Clinical Fellow for Perinatal Mental Health, and lead on the PMH toolkit, said it "has been developed in consultation with women who have had perinatal mental health problems, and we hope it will give them the confidence to approach health professionals, and be better informed about their choices and what they should expect."

APP Chair, Dr Giles Berrisford gave a keynote presentation at the launch talking about NHS England's strategy for transforming perinatal mental health. Following the hashtag #PMHtoolkit on Twitter showed how positively the Toolkit is being received and a sense of optimism about the future of perinatal mental health services. 

Find out more, take a look at the Perinatal Mental Health Toolkit on the RCGP website