MUCH ADO ABOUT NOTHING?

As part of my online searches to discover new information about pregnancy loss research, coping strategies and management I stumbled upon an interesting thread of comments.

This comments thread was in response to a news article in The Guardian online. The article was about a lady who, after suffering multiple losses, decided to organise across the United Kingdom different commemorative services where people could come to say goodbye to their unborn babies. An opportunity, if you may, to have a “funeral” for the pregnancy loss and hopefully leave with some form of closure.

What sparked the debate was someone wondering if services like this would just make too much about an issue no one used to talk about in the past. Women would have a miscarriage, be it early or late or even have a stillbirth and the healthcare team would just pretty much clean her up and send her home. It seemed that this person was pining for such simpler times when people did not talk so much about their feelings and go on and on about the babies they lost.

The responses to this comment ranged from vehement disapproval: “you have obviously never lost a pregnancy!” (It turns out the person commenting never had, go figure!) to guarded support: “some women do take it too far”.

I do think times have changed. I think that the inevitable consequence of a society where women have a voice is that women will speak. At a time when, in the Western part of the world at least, women are educated, enlightened and empowered, people have to deal with the fact that these women will highlight issues that are important to them.

I have written already about the disenfranchised grief of pregnancy loss and so it should come as no surprise that I wholeheartedly support the idea of an avenue that permits women (and those close to them) to grieve.

I grant that there is a danger (in some circles) to talk this issue of pregnancy loss to death but from personal experience and from talking to others who have gone through it as well, there is a more present danger (especially where I come from) of not talking about it enough.

If, in Nigeria and other parts of developing society, we aspire to “promote gender equality and empower women” (MDG-3), then we need to find out and talk about the issues that are important to women – not just avoiding death but coping with life.

RESPECTFUL MATERNITY CARE

The Miscarriage Support and Information Centre is part of the White Ribbon Alliance and our June Action of the month is focused on respectful maternity care.

In their power point presentation designed for healthcare workers, they make a very valid point, a point that I am particularly passionate about.

“The concept of ‘safe motherhood’ is usually restricted to physical safety, but safe motherhood is more than just the prevention of death and disability. It is respect for women’s basic human rights, including respect for women’s autonomy, dignity, feelings, choices, and preferences”.

When having to manage complications of pregnancy such as early or late miscarriage, healthcare workers are often driven by a need to do what they feel is best to prevent death and disability. However, in caring for a woman during such a traumatic time, it is important to work with her and not just “for her own good”. It is important that she understands what is going on and why. It is important, for example, to respect her wish to not undergo a surgical evacuation even though you may feel it is the best option.

In the survey I conducted in Lagos, Nigeria of the 25 women who had experienced a miscarriage, 21 remember being treated with sympathy and understanding by the hospital staff. However, only 14 women felt that medical professionals were not to blame for the pregnancy loss. Why the disparity?

I strongly believe that these 11 who did not excuse the healthcare workers involved in their care are the women who did not understand what was going on, were not consulted, had nothing explained to them and had no choice in how the miscarriage was handled. Hence, they believe something was not done right.

When asked, in the same survey, about attributes in their healthcare professionals that were very important, “includes you in the choice of treatment” was not ranked very high by these women respondents. However, “tells you all that is going on and why” was ranked very important with “explains in words you understand” ranked highest of all.

As 2015 draws closer and closer, it is very important that healthcare workers and policy makers recognise that when we go beyond preventing maternal deaths and work towards maternal healthcare that is respectful of women’s feelings, choices and dignity we will not only “improve maternal health” but we will also “promote gender equality and empower women”.

UNBORN

I found this lovely video online. It is a choreographed expression of a woman’s feelings of grief and loss after a miscarriage.
Even if interpretative dance is not your cup of tea, the dance is beautifully performed and the video is short and skilfully directed.
Check it out.
http://vimeo.com/36184574 

ANITA’S STORY

Anita* was expecting her first child and was excitedly looking forward to buying baby clothes and preparing for her baby’s arrival. As she approached the completion of 7months of pregnancy, she couldn’t shake the niggling doubt that everything was not right.
“I started noticing that my tummy is going down as if someone is pressing my tummy”, she shared with me. She shared this fear with her husband but later dismissed it as she reassured herself that she had never missed an antenatal appointment or defaulted on any of her medications.
She however decided to arrange for an ultrasound scan. But the 5th of April, the day she chose to go for the scan, would prove to be a life altering day in Anita’s life.
According to Anita, the lady performing the scan suddenly burst into tears. One can only imagine the trepidation that went through Anita as she witnessed this. “I started asking the woman, ‘what is the problem? Tell me, what is the problem’ cos me I don’t understand why she is crying”, Anita recalled. Without being given any information, she was sent to a different place for a repeat scan.
With mounting anxiety, Anita watched as the man performed the scan again. He looked very sad and she could sense the pity in his demeanour as he looked at her. Once again, Anita demanded that she be told what was going on. All he did was ask her to go back to her clinic with the results of the scan.
That was when the bombshell hit. She was simply informed, “Ah. The baby is dead in your womb o”. Anita was in shock and in her own words, started to lose hope. She burst into tears and could not even compose herself to send for her husband; the staff at the clinic had to do that for her.
What followed was a traumatic two weeks and four days as she stayed in hospital undergoing all sorts of procedures and medication in order to push out her baby. When I asked her how she coped, she simply explained, “I have to have strong heart to save my own life...cos if I should lose hope, I could have been a dead somebody now” (sic). She admitted that the shock of the loss was still a very real and constant feeling but she felt that she needed to fight for her life; so this survival instinct took over and helped her through that physically and emotionally harrowing sixteen days.
As at the time when we spoke, Anita was still coming to terms with the loss. The main question that plagued her was what could have caused her baby to die. That was all she wanted to know. Was it something she did? Was it something the health workers missed? Time and again, she would find herself thinking about it and wondering what could have gone so horribly wrong. But, whenever she found herself deep in thought, her husband would get cross with her and tell her to stop thinking about it.
So now, all Anita can do is wait for her body to heal and hope that she will get pregnant again and that when she does, she will end up with a baby. As for her emotional scars; only time will tell.

* not her real name.

BREAKING BAD NEWS

As a House Officer, while on call we had a lady rushed into theatre for an emergency CS due to foetal bradycardia diagnosed on the CTG (i.e. the heart rate of the baby was reading about 80bts/min when a normal heart rate for a baby in the womb should be between 110 to 160bts/min). It turns out that the CTG (an out-of-date model compared to what is used in UK and the developed world) had been picking up the mother’s pulse and we delivered a macerated foetus (i.e. the baby had been dead for a while and was already decomposing – sorry for the graphic details).
It was left to the consultant paediatrician to leave the theatre and tell the father how a baby would not be coming out and why (the mother was under general anaesthesia and so was unaware of what had occurred).
Different guidelines on the management of pregnancy loss suggest that the most senior member of the team should break the news to the woman/couple wherever possible.
However, this raises a question for more junior doctors on the frontline of care. If, for example, you are the Medical Officer on NYSC (national service in Nigeria) posting and you are the first and only person most patients would see, how do you effectively deliver bad news? What qualifies you to deliver bad news? Can empathy only be gained with experience? Is that why the more senior health professionals should deliver bad news? If yes, does this mean that we will inevitably bungle up the delivery of bad news until we learn how to do it properly?
Personally, I was always uncomfortable with miscarriage and pregnancy loss. I am ashamed to admit that when I went in to see the mother the next day on my House Officer ward round, I could not look her in the eye, I did not offer my condolences for her loss; I just said, “good morning” and checked her vital signs. It wasn’t till I had experienced a loss myself and conducted the survey that I realised how lonely and scary such an experience could be. Empathy can really go a long way to make a difference in such instances.
While preparing for my PLAB exams (in order to be registered with the General Medical Council in the UK), breaking bad news was one of the skills I had to learn. It is also a module in BMJ Learning for continuing professional development. This is a topic that was never discussed while I was in medical school in Nigeria.
I don’t claim to know the answers to the who, how, when or why of the delivery of bad news. But I know that no matter what level you are at as a medical student, doctor, nurse or midwife, “I’m so sorry for your loss” is easy to say: there’s no law against that.

THE DISENFRANCHISED GRIEF OF PREGNANCY LOSS

Disenfranchised grief is defined as grief that is not socially supported, either because the relationship with the person lost is not recognised, the loss itself is not recognised or the griever is not recognised1. In the case of pregnancy loss, it is usually that the loss is not recognised making it difficult to grieve properly.
Across sub-Saharan Africa, death is traditionally perceived as the process by which a person becomes an ancestor2. With pregnancy loss, there was no opportunity for the foetus to become a person, not to talk of an ancestor; this makes it very difficult for a typical woman or couple to come to terms with what exactly has been lost and how to mourn that loss.
The mourning practices of Nigerians in particular stem from a religious perspective, due to Nigeria’s triple heritage of Christianity, Islam and Traditional religions1. There is, however, no mourning practice for a pregnancy loss. A change to this should be considered as it has been reported that unacknowledged loss and a lack of grief rituals for the loss can challenge healing after pregnancy loss3.
In Nigeria, obituaries and memorials are used to celebrate a person’s life achievements and position in society2; it is an opportunity to list out all the family members that will miss that person. After a miscarriage, there are people that are affected by the loss, people who already loved this tiny foetus and were dreaming of the day the child would be born and the changes he/she would bring to their lives. But the very nature of first trimester loss is that there is a sense that one has lost someone so loved but has nothing to show for it; there is no actual visible person to mourn.
There is a need for an accepted approach to the process of dealing with a pregnancy loss. Without this, there is the risk that the accompanying grief, which goes unacknowledged, may be too much for the woman to bear, especially if she does not have the essential social support or the empowerment that comes from education to deal with it in her own way.

REFERENCES
1. Eyetsemitan F, “Cultural interpretation of dying and death in a Non-Western society: the case of Nigeria”, Online Readings in Psychology and Culture, Unit 14, Chapter 1. ©International Association for Cross-Cultural Psychology, 2002.
2. “Death, Mourning and Ancestors”, accessed from http://www.novelguide.com/a/discover/aes_01/aes_01_00107.html on 29/04/11
3. Douglas K I, Fox J R, “Tears of blood: understating and creatively intervening in the grief of miscarriage”, Compelling Counselling Interventions: VISTAS 2009, pp89-100, ©American Counselling Association, 2009.

THE HEALTHCARE PROFESSIONAL’S ROLE (2)

Positive contacts with health care professionals have an impact on how well these women can cope after the loss (7). The woman’s ability to experience wellbeing after a miscarriage is enhanced by her receiving care from a provider that is well informed about the common human responses to miscarriage (6). Even though first trimester miscarriage is under-researched and imperfectly understood (5), there is a lot the healthcare professional can do to maximise the health of his/her patient after a loss. This may be by simply recognising the uniqueness of each loss (3), even though the medical process is the same and the occurrence of miscarriage is very common. 

In addition to this, the health care professional needs to recognise that, to his/her patient, that miscarriage is more than simply a medical event and deliberately avoid the tendency to “medicalise” (and by so doing trivialise) her loss (5). Where the health care professional does not trust in his/her ability to offer appropriate counselling, by being observant enough to identify those who may need a referral, he/she will be delivering quality healthcare.

It is a well known fact that early miscarriage is a distressing experience (2) (4), involving a major disturbance of self-identity (5). Psychological reactions to stressful events can result in physiologic effects (8); the actual miscarriage could be a straightforward process with no risk of complications that may pose a source of concern to the health care professional, but the way the woman perceives and responds to the miscarriage may be dangerous to her health. Therefore, the manner in which the health care is provided in the aftermath has the power to influence her response to the health care system (7).

Most women know little about miscarriage until they experience it and the occurrence of miscarriage is usually shrouded in secrecy (5). Those entrusted with their care should know enough to empower these women (and their partners) to successfully navigate the journey of healing in order to maximise their health. 

REFERENCES

1.      Ekwegh U. Women and miscarriage: knowledge, attitudes and needs. Printed by the Miscarriage Support and Information Centre. 2008.

2.       Beutel M, Deckhardt R, von Rad M, Weiner H. Grief and Depression after miscarriage: their separation, antecedents and course. Psychosomatic Medicine, Vol. 57(6) pp517-526, 1995.

3.       Douglas K I, Fox J R. Tears of blood: Understanding and creatively intervening in the grief of miscarriage. In Bleuer J C, Yep R K, Walz G R. (Eds) Compelling Counselling Interventions. Alexandria, VA, VISTAS: American Counselling Association, 2009.

4.       Swanson K M, Karmali Z A, Powell S, Pulvermakher F. Miscarriage effects on couples' interpersonal and sexual relationships during hte first year after loss: women's perceptions. Psychosomatic Medicine, Vol. 65, pp902-910, 2003.

5.       Frost J, Bradley H, Levitas R, Smith L, Garcia J. The loss of possibility: scientisation of death and the special case of early miscarriage. Sociology of Health and Illness, Vol. 297, pp 1003-1022, 2007.

6.       Swanson K. Effects of caring, measurement, and time on miscarriage impact and women's well-being . Nursing Research, Vol. 48 (6) pp288-298, 1999.

7.       Abboud L, Liamputtong P. When pregnancy fails: coping strategies, support networks and experiences with health care of ethnic women and their partners. Journal of Reproductive and Infant Psychology,  Vol. 23(1) pp. 3-18, 2005.

THE TRIPLE-R MODEL: ROLE (1)

It is obvious that I believe it is our role, as healthcare practitioners, to identify the risk and resilience factors in our patients that present with a miscarriage. However, our role as healthcare professionals is not simply to identify those at high or low risk of a significant negative response to the miscarriage. In my study of women in Nigeria who had experienced a miscarriage, the doctors and nurses were identified as their second most important source of support, second only to their spouses (1). 

In order to identify the type of support required the healthcare professional needs to be able to distinguish between a normal grief reaction and a pathological reaction to the miscarriage. This can only be achieved if the woman is allowed to talk about the loss and her feelings about it. Essentially, a grief reaction will manifest as a preoccupation with and longing for what was lost plus painful recollections and reminders in everyday life (2) (3). A depressive reaction will manifest as symptoms in the woman: irritability, restlessness, lack of concentration, sleep disturbances and so forth (2); in other words, a preoccupation with herself.

Women will, more often than not, welcome any opportunity to discuss their loss (4). However, there are some that may find it difficult to do so, due to feelings of guilt and shame (5). It is therefore very helpful if the health care professional creates an opportunity for the woman to discuss the miscarriage and what it meant to her. Following a miscarriage, women may have a strong desire for recognition and validation of the loss, particularly from their health care providers, who can help them to explore the meanings of the miscarriage (3). 

It has been confirmed by empirical research that women who receive counselling sessions, which were simply sessions where the women talked about the whole experience of the miscarriage, were more likely to show a decline in overall emotional disturbance (6).

...To be continued

THE TRIPLE-R MODEL: RESILIENCE

Just as there are red flags that suggest that a woman may find it difficult to cope after the experience of a pregnancy loss, there are encouraging aspects of her history that can foster healing, both physically and emotionally, after the loss.

·         Spousal/Social Support: it has been established that the support of the spouse, family and friends is a vital coping strategy. It is important to the woman to have her loss recognised and validated, to have a listening ear when she needs to talk and to have practical help (with chores for example) (1). When one considers that it is the cumulative impact of everyday hassles related to dealing with the loss that may have a detrimental effect on her health (2), it becomes apparent that at such a time, a woman who possesses a strong and supportive social network will fare much better than one who does not.

·         Hardiness: this is an attitude and an approach to life that can be protective in times of stress such as a miscarriage. A woman with hardiness would view the miscarriage as a challenge and an opportunity for personal growth with a strong belief in her ability to overcome this adversity and continue to enjoy a good life (2). She believes that everything happens for a reason and works out what it is. This may be due to the coping repertoire that she may have developed as a result of prior life experiences. Past life experiences can equip the woman with the emotional strength she needs to reach a state of resolution and healing after the miscarriage (3).

·         Spirituality: after a miscarriage, there is a struggle on the part of the woman to make sense of what often has been an inexplicable train of events (4). So she may seek spiritual guidance in order to make meaning of the miscarriage on a spiritual level so she can attach value to what happened (5). The complex narrative she develops in order to give religious meaning to her experience is an effort to draw positives out of a negative experience (4) and as she turns the loss over to God (5), there is a strength and peace that may follow, which overrides scientific explanation.

These factors protect against the impact of the stress of pregnancy loss and can be identified from a well-focused family and social history.

REFERENCES

1.       Abboud L, Liamputtong P. When pregnancy fails: coping strategies, support networks and experiences with health care of ethnic women and their partners. Journal of Reproductive and Infant Psychology,  Vol. 23(1) pp. 3-18, 2005.

2.       Gross R, Rolls G. Biological Psychology: Stress. In AQA (A) Psychology for AS. London, Hodder Education, Hachette UK, 2008.

3.       Swanson K M, Connor S, Jolley S N, Pettinato M, Wang T. Contexts and Evolution of Women's responses to miscarriage during the first year after loss. Research in Nursing and Health, Vol. 30. pp2-16, 2007.

4.       Frost J, Bradley H, Levitas R, Smith L, Garcia J. The loss of possibility: scientisation of death and the special case of early miscarriage. Sociology of Health and Illness, Vol. 297, pp 1003-1022, 2007.

5.       Douglas K I, Fox J R. Tears of blood: Understanding and creatively intervening in the grief of miscarriage. In Bleuer J C, Yep R K, Walz G R. (Eds) Compelling Counselling Interventions. Alexandria, VA, VISTAS: American Counselling Association, 2009.

THE TRIPLE –R MODEL: RISK

I had mentioned in an earlier post that I had developed a model based on existing evidence that may help to predict how well a woman will deal with the effects of a pregnancy loss. The following are risk factors that have been identified that may influence one’s ability to cope.

·         Nature of spousal support and/or social support: the receipt of poor social support is a very strong predictor for low emotional strength, intense emotional feelings and high risk of depression in the woman (1). A study also found that dissatisfaction with the spouse’s caring after a miscarriage was significantly raised in women who had a depression reaction to the miscarriage as opposed to those who simply had a grief reaction (2).

Simply put, the husband is vital to the woman’s healing  and grieving process.

·         Pre-existing vulnerability to anxiety/depression: The physical manifestation of a miscarriage usually causes anxiety during and after the event (3) and women who have miscarried have an increased risk of anxiety and depression that could last for years compared to women who never miscarried (4). A past history of depression could trigger a depressive reaction to the miscarriage (2). Some women may also possess a temperamental vulnerability to anxiety (5) and this may make her more prone to an anxiety response to the loss. The tendency to go beyond the normal grief response to a miscarriage and exhibit a pathological inability to cope and/or a state of despair is exacerbated by poor social support (2).

Simply put, if the woman is naturally anxious and easily worried or has suffered depression in the past, she is more likely to find it more difficult to cope after the pregnancy loss

·         Gestational age at the time of the loss: As early as 10weeks gestation, there is a real emotional connection to the pregnancy (2). When the gestational age is less than 20weeks, then the age of the foetus at the time of the loss does not make a difference in the strength or the duration of the grief, anxiety or depression (4). For pregnancies older than 20weeks, there is a longer grieving duration and a greater chance of depression, impacting negatively on close relationships (1) (4).

Simply put, a loss at 10weeks can be just as painful as a loss at 16weeks but a loss at 20+ weeks is potentially more devastating.

REFERENCES

1.       Swanson K M, Karmali Z A, Powell S, Pulvermakher F. Miscarriage effects on couples' interpersonal and sexual relationships during hte first year after loss: women's perceptions. Psychosomatic Medicine, Vol. 65, pp902-910, 2003.

2.       Beutel M, Deckhardt R, von Rad M, Weiner H. Grief and Depression after miscarriage: their separation, antecedents and course. Psychosomatic Medicine, Vol. 57(6) pp517-526, 1995.

3.       Swanson K M, Connor S, Jolley S N, Pettinato M, Wang T. Contexts and Evolution of Women's responses to miscarriage during the first year after loss. Research in Nursing and Health, Vol. 30. pp2-16, 2007.

4.       Swanson K M. Research-based practice with women who have had miscarriages. Journal of Nursing Scholarship, Vol. 31(4) pp339-345, 1999.

5.       S, Rachman. Anxiety. UK : Psychology Press Ltd, 2004.

MY MISCARRIAGE EXPERIENCE

Even now, after I have had successful pregnancies and healthy children, I can still go back to that day in March 2007 (when I had the miscarriage).
I can still remember: 

• The fear, the heart-sinking, gut-wrenching fear I felt when I first saw the fresh blood stain. 
• The panic, the heart-breaking panic that came over me when, about 15 hours later, I could feel contractions as my body prepared to expel my baby. 
• The sense of despair that completely weakened me physically as I was examined in the hospital.
• The grief of losing someone that I loved so much but was never going to meet (that is a kind of grief that is very difficult to explain).

That was a dark time in my life and remembering it still has the power to bring tears to my eyes. The miscarriage changed me forever; I will never forget the events and the emotions of that experience. And I hope, the next time you see someone going through a pregnancy loss, you will remember my story and be a little more compassionate with her.

THE TRIPLE-R MODEL

This is a model I developed to explain the factors that influence the response of a woman to miscarriage.

A miscarriage could hardly be described as a life-threatening condition but its effects on the woman, both physically and emotionally, are significant (1). This significance of the miscarriage experience on her mental health and emotional wellbeing is unique to the woman: miscarriage, though very common is extremely personal. The women differ in needs and expectations as well as their actual experience of the miscarriage (2).

A woman’s appraisal of her miscarriage is typically in terms of what being pregnant meant to her and what was at stake for her in losing the pregnancy (3) (4). The attribution of meaning to the pregnancy may be responsible for observed clinically significant negative reactions to miscarriage. Reports exist of up to 51% of women developing clinical depression after a miscarriage with a minimum of 22% developing clinically significant levels of depression and/or anxiety (5). It is also understood whatever meaning is attributed to the miscarriage affects the woman’s view of medical care received (versus medical care desired) in the course of the miscarriage experience (3). 

There are strict, established and concise guidelines on the management of the medical features of a miscarriage but little guidance is offered as to how health care professionals are to manage the psychological or social aspects of this loss (6). Gynaecologists and midwives may not be familiar with the diagnosis or management of depression (5). It is therefore pertinent that comprehensible insight into the factors that surround clinically significant mental and emotional responses to a miscarriage is made available.

The Triple-R Model is simply an academic discourse of the evidence already in existence about the factors that influence the grief response to a miscarriage, either by attenuating it or by aggravating it. The three R’s stand for the factors that may pose a Risk, the factors that provide Resilience and the Role of the health care professional in caring for the woman/couple after a miscarriage.

In other words, Risk+ Resilience+ Role àResponse

By expanding on these factors, a clear picture of the role of the health care professional in the management of the woman’s response to the miscarriage will emerge.

REFERENCES

1. Abboud L, Liamputtong P. When pregnancy fails: coping strategies, support networks and experiences with health care of ethnic women and their partners. Journal of Reproductive and Infant Psychology,  Vol. 23(1) pp. 3-18, 2005.

2. Smith L, Frost J, Levitas R, Garcia J. Women's experiences of three early miscarriage options a qualitative study. British Journal of General Practice, Vol. 56(524) pp198-205, 2006.

3. Swanson K M. Research-based practice with women who have had miscarriages. Journal of Nursing Scholarship, Vol. 31(4) pp339-345, 1999.

4. Swanson K M, Karmali Z A, Powell S, Pulvermakher F. Miscarriage effects on couples' interpersonal and sexual relationships during hte first year after loss: women's perceptions. Psychosomatic Medicine, Vol. 65, pp902-910, 2003.

5. Lee D T S, Wong C K, Ungvari G S, Cheung L P, Haines C J, Chung T K H. Screening psychiatric morbidity after miscarriage: application of the 30-item General Health Questionnaire and the Edingburgh Postnatal Depression Scale. Psychosomatic Medicine, Vol. 59(2) pp207-210, 1997.

6. Frost J, Bradley H, Levitas R, Smith L, Garcia J. The loss of possibility: scientisation of death and the special case of early miscarriage. Sociology of Health and Illness, Vol. 297, pp 1003-1022, 2007.