Adolescent Babyloss Experiences

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Its been quite a while since I have blogged because I’ve been busy writing and publishing Grief Demystified: An Introduction, have started drafting a second book, and am working on my PhD research.

My PhD research is exploring the experiences of adolescents who experienced a gestnatal death whilst in secondary school.  Originally we were using the word “perinatal” but due to the fact that it is defined differently in various countries and organisations, I’m unable to use it for research purposes.  Instead we are using the word “gestnatal”, defined as: “The death of a human life from conception to 28 days’ post-birth inclusive.”

Gestational and neonatal deaths can be divided into two groups: biological (miscarriage, stillbirth, neonatal death etc.) and non-biological (abortion, therapeutic termination etc.).  My research is encompassing all gestnatal deaths because we are exploring the grief, social, and educational impact of the event.  My research design is split into two parts; firstly, there is a questionnaire to gather as much broad data as possible and I’d like to extend my deepest thanks to the women to who took the time to complete this questionnaire.

Secondly, interviews are currently undertaken by me to dig deeper into the data summarised following the collection of the questionnaires.

The purpose of this study is to provide information on these experiences so that we can inform policy makers, teachers, medical professionals, school guidance counsellors etc. so that they can better understand and support these teenagers and subsequent women.

And if you are willing to be interviewed by Skype or in person, or whichever way is suitable for you, or if you would like more information on this research, please email me at:  lloydca@tcd.ie

Thank you to all the participants who have completed the questionnaires so far, and to everyone who has volunteered to be interviewed.

The Importance of Stories: Children, Dying and Death

It is my pleasure to host an essay by Dr Rachel Fearnley who is a research consultant specialising in children’s lives when a parent has a life-limiting physical illness.   In my book I introduce the concept of anticipatory grief as the process of grieving before a person has died and the impact of witnessing terminal or degenerative illnesses.  I have also written an earlier blogpost about the language used when referring to cancer.  Dr Fearnley’s work dovetails into my research and has very kindly accepted my invitation to provide an insight into her research and expertise into how children’s lives are impacted as a result of a parent’s life limiting physical illness.

The Importance of Stories: Children, Dying and Death

‘We live in stories, not statistics’ (Gilbert 2002). Anyone who has heard me speak will be familiar with this quote, how it is representative of my career and how the sentiment held within it is core to my values. Stories have always been central to my career starting in the early 80s when I was employed as a nursery nurse. For me story-time at the end of each session was a magical, special time to be treasured. I always enjoyed telling the young children stories which captured their imaginations and took them off on wonderful adventures and to different places and situations. Later as I changed career the emphasis shifted from telling stories to listening to other’s stories and helping them to try and begin to make some sense from what was happening in their lives. Through this role in family support I became increasingly interested in social and emotional aspects of dying and death.

This curiosity led me back to university where I undertook a PhD which explored children’s experiences when a parent is at the end of life. My research was  qualitative, and at its core was the emphasis on listening to children’s stories about their experiences. Within the research process I encountered gatekeepers who wanted to protect children from being exposed to the research. I was told that it would ‘upset’ the children if they started talking about what was happening in their lives and that it was therefore inappropriate to begin to explore with them their thoughts, feelings and stories. However, when I did find people who were willing to engage in and support the research I was overwhelmed with the openness and honesty from the children and young people I met. Yes some were upset talking about what was happening after all it was an emotional and very personal topic. But our meetings were contained in a safe place and were managed by a person who genuinely wanted to listen and take time to try and understand. The participants were engaging and shared their stories willingly and moreover all said how it had been helpful talking to someone who was really interested in their stories and who was prepared to listen without passing judgement.

Their stories often shared a similar theme; they wanted to be involved in conversations about their parent’s illness. However, for many this was not always the situation. There was a sense that adults tried to protect them from the realities of what was happening. There was a view that children were ‘too young’ to be told or that they didn’t need to know because the information would be too distressing. However, the children and young people I met generally held a very different perspective. They all had a ‘knowing’ that something serious was happening in their family, even when this had not been articulated to them. In these situations there was a tendency for them to put two and two together but not make four. They spoke about picking up cues from observations (of their parent’s behaviour and changes in their health) and from overheard conversations. For some young people there was a sense of frustration that they were being ignored and that indirectly they were being given the message that they were not important in what was happening within their family. This, I think, is a sad reflection of how in society there continues to be a need to exclude children from dying and death.

Tony Walter (1996) has written about dying and death from a sociological perspective. Within his work he suggests that an important element following a death is for individuals to be able to talk to others about the deceased person and through this to develop a ‘durable biography’. This durable biography, according to Walter, not only allows them to learn more about the deceased person but also about themselves. He suggests that the process by which this is achieved is through conversations and discussions with others who knew the deceased person. The maintaining of the relationship, Walter argues, is substantially achieved by talking about the deceased person with others who had known them, sharing stories and memories, adding previously unknown information and also challenging previously held assumptions about them. I have built on Walter’s work to suggest that during parental illness, children are ‘writing’ a penultimate chapter (Fearnley 2015) about the illness. This is a prospective chapter and the quality of its content is dependent on the extent to which children are included in conversations and information sharing about the illness. The ‘writing’ of the ‘penultimate chapter’ is important in helping children make meaning from their current lived experience and helps prepare them in the writing of their final chapter about their parent. However, when children are not included in conversations they are then not able to ‘write’ a meaningful penultimate chapter about their lives with their ill parent.

I wonder whether as adults we are afraid to listen to children, are we concerned about what we might hear? Certainly in my research there was a sense that sometimes professionals (mainly from within health care) were concerned that they would be ‘opening a can of worms’ if they started talking to children about the illness. Other worries were that such conversations would take too much time or that they were not qualified to work with children. As one nurse said to me ‘I work with adults not children’.  These findings are congruent with recent research that again highlighted that health care professionals often felt that the children of patients were not their concern (Franklin et al. 2019). I wonder if there needs to be a shift so that professionals who work with adults also feel confident at least talking to children.

Recently my relationship with stories has taken a new and totally unexpected direction. After some years of trying to raise awareness about the importance of supporting children and families during parental life-limiting illness with the feeling of little success, I was encouraged to write a novel as a way of exploring some of the typical issues families and children experience during the illness. Our Family and IT is the story of an ‘ordinary’ family faced with extra-ordinary changes and challenges following the mother’s diagnosis of ‘IT’ an unnamed illness. I did not want to focus on one illness but rather on the social and emotional impact any life-limiting illness has on family life. I carefully considered the ages of the three children for maximum impact within the story; each family member narrates the story of their lives following the diagnosis. I have tried, based on my research findings, to tackle some of the important issues that families typically face during this health crisis. These include communication, identity, emotions, parenting and support. Within the book different dilemmas and challenges are explored, for example do the parents tell their children what is happening, how school and friends manage the situation and what happens to teenage boys when they are not listened to. And so with the publication of the book, I feel my relationship with stories has come full circle.  However, my opinion remains that as a society we still have some way to go before children are included, to the extent they want to be, in stories of dying and death.

For more information on Dr Fearnley please see here:  http://www.rachelfearnley.co.uk/

To buy Dr Fearnley’s book please see here: http://www.rachelfearnley.co.uk/http-www-rachelfearnley-co-uk/

Twitter: @RachelFearnley1

 

References

Fearnley, R. (2015) Writing the ‘penultimate chapter’: How children begin to make sense of parental terminal illness, Mortality20(2): 163 – 177.

Franklin, P., Arber, A., Reed. L., and Ream, E. (2019) Health and Social Care Professionals’ Experiences of Supporting Parents and their Dependent Children During and Following, the Death of a Parent: A Qualitative Review and Thematic Synthesis, Palliative Medicine 33: 49 – 65.

Gilbert, K. R. (2002) Taking a Narrative Approach to Grief Research: Finding Meaning in Stories, Death Studies, 26: 223-239.

Walter, T. (1996) A New Model of Grief: Bereavement and Biography, Mortality, 1(1): 7-25.

 

2018 International Conference on Stillbirth, SIDS, and Baby Survival

I’ve just returned from this conference and wanted to summarise and share some of the information that’s relevant to the baby loss community, and those that that support them.  I tweeted during the conference on the talks I attended and a very short summary of my perception of their talks can be found on my feed @thegriefgeek.  These speakers can be contacted or followed directly, so whilst the overall themes are included, I have not included their talks in detail in my summary below.

Firstly, this conference was dedicated to the prevention of baby loss in the first instance; sharing information on what is known about reducing the risks of stillbirth and SIDS (cot death). Professor Alexander Heazell explained that there are things that expectant mothers can do on a daily basis to decrease their risk. One of them is to sleep on their side. It is estimated that, if all pregnant women in the UK went to sleep on their side in the third trimester, around 130 babies’ lives would be saved annually. Further information was given on not smoking or taking drugs during pregnancy, attending all ante natal appointments, and alerting a medical professional if there is any change in baby’s movements.

With regards to SIDS deaths, the research suggests that it there is a statistically significant increase in child death if a parent smokes and has baby in bed with them to sleep. Baby should also not sleep in a bed with a parent if they have consumed alcohol.

Secondly, the conference shared information and best practice on supporting bereaved parents after these types of losses. The over-riding themes were:

• “No More Silence”
• “Community Support”
• “Listen”
• “Education”
At the International Stillbirth Conference in Cork last year, it was evident that bereavement care should be consistent for all baby loss parents. There was also a concern that medical professionals weren’t receiving enough or adequate (i.e. modern grief theory) training. Whilst the linear stages of grief myth still pervade, it’s important that we educate professionals and the bereaved alike; that even if there are identifiable commonalities to grief, they do not follow a predetermined pattern. We also know a whole lot more about grief from the past 30 years of research! (Read my book! 😊)
There were three further items that I’d like to mention:
1. One of the outputs of my PhD research is the need for an all-encompassing word for all baby deaths. One of the reasons for this was highlighted at this conference: that those who have lost a baby whilst around 20-24 weeks gestation may be categorised has having a “miscarriage” rather than “stillbirth”. This has lots of implications including the issuance of a death certificate (generally; yes for a stillbirth, no for a miscarriage) and the recognition by society of the significance of the loss. A gestation of that age will result in active labour and the birth of a baby, to have that classified as a “miscarriage” causes grief implications for the parents and can be devastating if their social support is absent due to this categorisation. Secondly, we have seen from research that some individuals identify as “parents” as soon as the pregnancy is confirmed. Seeing the ultrasound scans confirms evidence of a “baby” and subsequent parenthood. This can be the realisation or continuation of all of their future hopes and dreams as a family. To some expectant parents, the loss of a self-identified “baby” (foetus, embryo, or baby) is significant and we believe that all baby loss parents who are affected in this way should receive adequate bereavement understanding and support. We have introduced the word “gestnatal” to our research to encompass all embryonic, foetal, and baby deaths from conception to 28 post birth so that we can focus on the impact of the loss and minimise societal hierarchies of grief (i.e. the ‘ranking’ of importance of the loss as dictated by someone else). We know from research that grief is not related to the gestational age of a developing baby.
2. Another theme that was mentioned during the conference is that of gender differences. In some societies men still believe that they are expected to ‘man up’ or be ‘blokey’. There can also be a perception that men are unaffected because the mother is the one that carried the baby and laboured. However, grief in men following a gestnatal death is highly individualised and as such, they may not receive adequate support. Some men are not as affected as women, but some are and that depends on how attached the man was to the baby. In all cases there is only one way to find out: ask and listen! Another point to note is that men can grieve in an instrumental style and women in an intuitive way, both are grieving in the right way for them. Grieving differently does not mean they aren’t grieving or ‘doing it wrong’.
3. Another PhD Researcher, Livia Sani, gave a very interesting talk on the use of YouTube videos for memorialising stillborn babies. Used mainly in the U.S.A., YouTube videos are increasingly being utilised for public sharing of grief and obtaining peer and social support. It is mainly (70%) mothers who are curating the videos that are on average 5 minutes long, they start with the pregnancy story, notable in colour, with the identity creation of “parenthood” and subsequently tell the story post loss, usually in black and white or in a less colourful way. The videos are usually accompanied by music and religiosity. It appears that the videos “originate from an emotional need of the bereaved parent to be able to declare the existence of their child and their grief, keeping [their] memory alive.”
4. Another interesting presentation was a joint project between Margaret Evans (Paediatric Pathologist), Nicola Welsh (CEO Sands-Lothian) and Kate George (Illustrator). Following stillbirths and SIDS deaths the bereaved parents are asked if they would like a post mortem (autopsy) in some cases. Understanding the delicacy of this situation, the team have produced a very gentle animated film explaining the process and how to obtain more information. This film can be used by anyone and is openly accessible here:
https://sands-lothians.org.uk/post-mortem-animation/
In summary, the key messages for supporting the bereaved were 1. The importance of peer and societal support 2. The importance of medical professionals being trained to communicate and treat the baby loss parents with dignity and knowledge 3. To enact policies and procedures that reduce preventable deaths. I am pleased to report that evidence was produced that showed that an incredible amount of work has been done in the past 12 months to further these goals thanks to a multitude of committed and caring professionals.
If you have any questions or comments on any of the content here please email me at: thegriefgeek@yahoo.com
If you would like any further information on: modern grief theory, what to say to the bereaved (and not to say), what complicated grief is, why the death of a child is different, how men and women may grieve differently, how to support grieving children, the implications of the internet for grieving/memorialisation/digital legacy, how to support yourself if you are supporting the bereaved you might like to read my book “Grief Demystified: An Introduction”. An accessible, research-based book written without jargon for those supporting the bereaved and the bereaved themselves. It is available from various booksellers and Amazon worldwide.
Further support can be found from:
http://www.sands.org.uk (stillbirth, neonatal death)
http://www.sudc.org.uk (Sudden unexplained death of a child)
http://www.simbacharity.org.uk (Miscarriage, stillbirth, baby deaths in Scotland)
http://www.pregnancylossdirectory.com (A U.S site signposting to miscarriage, stillbirth and baby loss support organisations in the various states, Canada, Australia, and New Zealand)

As always, please do not use any of this blog without my consent.
All Rights Reserved Caroline Lloyd 2018

Miscarriage: Claiming the Narrative

It is with kind permission that I’m able to recreate the following:

Back in 1983, I found myself in an office toilet cubicle miscarrying a 14 week old foetus.  I had no idea I was pregnant because I was using birth control.  I had visited the doctor four times in the preceding two months, and each examination and consultation had resulted in a prescription for increasingly powerful pain killers.  I was given no ‘diagnosis’ or ‘treatment’ for whatever was ailing me.  Just a piece of paper for pills and sent away to just ‘get on with it’.  Despite the painkillers, towards the end, the pain was unbearable and the blood was uncontainable.

I walked to my workplace from the bus stop with blood running down my legs, thankfully it was winter, so I was wearing a long, heavy, dark coloured skirt.  I went straight to the ladies’ room.  The fact that I was in work, doubled over in pain, in shock, and possibly denial, meant that I just flushed my baby away and went to my desk to work.  This was pre-internet, so I returned to the doctor’s surgery several days later, was examined, and it was confirmed that I’d had a miscarriage.  I was sent on my way with a different prescription for contraceptive pills.

I was dazed and confused and wasn’t sure what to think or feel; it was an unplanned and unkown pregnancy.  When I finally confided in a friend a few months later, I was told it was a “blessing in disguise” because I didn’t have to choose between “ruining my life by having a baby at 18″ or having an abortion.  At that time, within my cultural environment, this was the narrative.  I was also told it was just a bunch of cells.”

I’m observing bereaved narratives on the internet over thirty years later as a PhD researcher, and whilst there are similar stories to the above that can be found, there has been a noticeable change.  Advances in technology have contributed to changing the landscape; home pregnancy tests allow women to find out they are pregnant almost immediately after an absent period.  With ultrasound scans available to prospective mothers as early as 6 weeks’ gestation, it is now common to see the growing foetus in utero.  These tangible factors allow prospective parents to see their baby; to formulate future dreams of what they will look like, what they will be like and what their lives may encompass, from a very early gestational age.  These medical advances, along with the internet (particularly social media), has changed the narrative in Western cultures almost entirely.

From an occurrence that was historically perceived to be the loss of a ‘bunch of cells’ and the common platitude of “you can always try again”, it is now common to post ultrasound scans on social media pages with the ensuing proclamations and public announcements of parenthood. Following a miscarriage, some of these women are now posting photos of their miscarried foetus’ as evidence of their loss, and as such, there is a growing movement to allow miscarriages to be registered as a birth.  The internet has opened up a dialogue where these women can claim their identities as bereaved mothers.  Within their bodies and their imaginations, these children were real, they existed, and their death is impactful.  Social media has enabled them to form support groups online, particularly within Facebook, and there is impactful peer support on Twitter such as #BabyLossHour.

Clearly not all women are online, not all women grieve a miscarriage, not all women welcome the news of an unplanned pregnancy.  But there is something empowering about claiming your own narrative and having peer support available, whatever that narrative may be.

As always, this content is copyrighted and cannot be reproduced without my permission.

Death & the Maiden Guest Blog

Not only does Caroline Lloyd refers to Death and the Maiden as glamorous and cool (thank you Caroline!) she shares her personal and professional journey of grief. Experiences that became the motivation behind her new book: Grief Demystified. The book she wrote that she so desperately wanted when she had disenfranchised grief and had no idea that that was even a thing.

via The Grief Geek — Death & the Maiden

To read my guest blog on the Death and the Maiden website, please click on the link above, or here:

The Grief Geek