Case Study
Still a stigma in the South Asian Community ??
Miscarriage & Stillbirth
​
Introduction
There are over 3 Billion people living in South Asian countries such as India, Pakistan, Bangladesh and Nepal. A common thread that links them all is their strong belief in tradition and experiences passed down from a 5000 year old Ayurvedic healing tradition. For example, when a woman finds out she is pregnant, here is what she gets to experience post-pregnancy...
​
-
A woman stays at her mother's place till she recuperates
-
There is a strong emphasis on her diet and nutrition
-
Provision of warm oil baths and massages (Ayurvedic)
-
She is pampered for about 40 days or more without any cooking and cleaning responsibilities, so that she can get all the rest she needs.
​
Why? because a mother needs to regain the energy lost during childbirth.
​
But why does the support diminish in the same community when it comes to a woman dealing with a miscarriage or stillbirth? why is the same woman now shamed and shunned even though research is evident that women often experience symptoms of trauma, grief, shame and depression that creates more mental and physical pain than a normal childbirth. It affects the social identify of a woman and isolates her from the same society which was once a place to fulfill her attachment needs.
​
​
My Role
As a UX researcher, my role was to do a background research on articles related to miscarriage in order to understand the problem domain, conduct interviews, analyze the findings and design a recommended guideline (by wireframing using Balsamiq) in favor of the women who deal with a loss.
My Goals
To understand the challenges the women faced post a miscarriage or stillbirth and the role of the society in supporting them.
**Disclaimer - I am not authorized to provide any medical advice on post-traumatic stress or remedies for post -pregnancy symptoms. I do not represent any medical facility. This study is purely based on observations and interview responses for research purpose.
My Process
Background Research
A research paper on post - pregnancy recovery recommends South Asian healing traditions to be used as a comprehensive support to the women all around the world. These methods claim to help in healing the woman's body and act as a preventive measure for postpartum depression. However, there is no such existence of support after a life-changing event like a miscarriage or stillbirth has occurred.
​
An article by Dr. Rima Lamba, a psychologist from U.K mentions how this topic is still a taboo in the south asian culture where a woman feels alone at a time when she needs more compassion and love. Pregnancy provides a mental preparation to motherhood and such a major event such as a loss impacts her self-esteem and brings feelings of being treated indifferent by the people around. And, despite the figures of a research that states that women of south asian descent are prone to miscarriages, there seems to be no impact on the missing support from the society.
​
There are pregnancy apps that provide weekly updates on the developmental growth of a fetus throughout the phase of a woman's pregnancy. However, in case of a miscarriage, no matter how awful it sounds, it requires the woman to delete the app.... it is as if a pregnancy never occurred. There is a lack of support overall.
​
**Having personally experienced post-traumatic stress of a miscarriage followed by a stillbirth and being a representative of this community led me to learn and understand the women with a similar fate as mine in order to know - Is there a persistent existence of stigma around it? What makes them shun from society? What kind of support do they look for and how can the society help them?
Problem Domain
Women do not get the support they expect from the family and the society. They feel isolated from talking about the topic of miscarriages. They are not aware of what to expect post a miscarriage and the strategy to deal with emotions and physical changes. This in turn disables their ability to heal emotionally in the process.
User Interviews
Why
Interviews provided me those qualitative in-depth data that I wouldn’t have achieved through a survey or a focus group. ..
​
Emotions cannot be quantified...
​
Trauma cannot be quantified....
Initial Contact
How
Through a post on a private facebook group, I had five wonderful and brave women connect with me to share their stories and experiences.
​
30 - 45 min recorded sessions through zoom (& grain) and whatsapp call
​
Session Time
To the ones who say - " "Technology limits human connections"
I guess not.. It had us prepared for COVID
Who
All the interviewees are:
​
-
Women
-
South Asian
-
Have faced atleast one miscarriage or stillbirth
-
Did not have family nearby
-
All live in Canada currently except one who lives in Saudi Arabia
-
Currently have 1-3 children
Interview Questions
Share your story
What Challenges did you face?
How was the healing process? What helped? What did not help?
Who was around you? What was their role? How did that affect you?
How was your interaction with
others?
Tell me about a time when someone said something discouraging to you.
What different approach would you have appreciated from them?
How would you approach a woman who has gone through a similar
experience?
Participants
P1
Stillbirth
at 28 weeks
- 2011
Origin : Pakistan
UAE
P2
Miscarriage
at 6 weeks
- 2000
Origin : Pakistan
Saudi Arabia
Location of lived experience
P3
Miscarriage
at 9 weeks
- 2006
Origin : India
Canada
P4
Miscarriage
at 18 weeks
- 2015
Origin : Pakistan
Saudi Arabia
Stillbirth at 26 weeks & miscarriage at 10 weeks
- 2017
P5
Origin : India
U.S.A
Affinity Map
I put up an affinity map and grouped them based on :
​
-
Types of support that were available
-
Challenges faced during the healing process
-
Unsupportive comments
-
Impact on interaction with others
-
The kind of support they expect
-
Support to others
Affinity Map
​
Results
Positive Support
Spouse
Sister
in-laws
3 out of 5 women felt that even though they had support from their spouse, they were equally in pain. But the spouse could not understand the physical struggles the wife had to go through.
​
Number of women who got the support
Negative Support
Spouse
Doctors & Nurses
in-laws/ parents
3 out of 5 women found medical professional not helpful in providing adequate information.
2 out of 5 women did not find their family supportive and understanding at a difficult time.
​
Number of women who did not get the support
Feelings she had during the healing process
Feeling low and emotional
​
Stressful consecutive pregnancy
​
Dealing with the physical pain
​
Anxiety and bouts of depression
​
Not able to share with someone who have not experienced the same pain
​
Trying to convince herself " This was not meant for me"
​
A struggle to move on
Being blamed for something out of their control ( When doctors gave no reason for their miscarriage)
"My in-laws were at a wedding, and did not rush after hearing my news... They took their time..attended the wedding and then returned" - P4
"There was a close family wedding, I had a miscarriage , and my mom left me alone to attend the wedding. ... it just felt that a 6 week loss did not matter" -P2
WHAT PEOPLE SAID.....
"You don't take care of yourself, you just didn't want this baby" - husband
" Don't worry, you will have more children" - in-laws
" You don't sit properly, you need to rest more often" - in-laws
" You walk too fast" - in-laws
" It is sign of punishment from the lord" - neighbor
" We cannot keep the dead baby here... you can take it home and keep it in the fridge" - nurse
" Do not cry out loud, you need to have patience" - doctor
" It must have been be due to an evil eye (Black magic)" - mother
Do's
Be supportive by your presence
​
Follow up on her mental health
​
Listen to her story without being judgemental
Stay informed on the mental and physical changes
​
Give her the personal space and time to grieve
Be empathetic towards her feelings
​
​
​
Don'ts
Do not blame her.
​
Do not advise without any scientific evidence
​
Do not share successful pregnancy stories
​
Do not advise her on being patient or provide religious quotes
​
Do not say things like " You are still young, you have time", "You have kids anyway"
​
Do not avoid discussing about her loss. A loss is a loss.
​
​
​
​
​
​
​
​
Summary
Based on the research findings, it can be inferred that most of the women had a negative experience in three ways-
​
-
Women who were living in countries like U.S.A, Canada, UAE and Saudi Arabia did not get the required information on miscarriages / stillbirths from the medical doctors and nurses.
-
Women living in countries like UAE and Saudi Arabia also did not get positive support from medical doctor and nurses
-
In general, all women did not get the emotional support from family and friends.
The most important piece missing in the support system of the society --- 'Empathy'
And this support system must comprise of family, friends, neighbors, doctors and nurses--- in general the village....It takes a village to raise a child, but it also takes a village to raise the broken spirit of a woman.
​
Since post-traumatic stress can lead to depression and anxiety, a woman should be given the help she needs... Do not expect her to hold up a sign-- asking for HELP.
​
​
​
​
Recommended guidelines
These are the recommended guidelines with intentions of helping the women cope with loss and provide the help that she needs.
Guidelines for medical professionals
Empathetic Care
-
Acknowledgment on loss - Establish an empathetic relation with patient
​
-
Family-centered approach
​
-
Follow ups with the patient on both mental and physical health
Excellent communication
-
Provide information on " What to expect after a miscarriage or stillbirth?"
​
-
Provide counseling sessions to help the women cope with the loss
​
-
Communicate with family to keep them informed
​
​​
Sketch
I also sketched a wireframe that can be used as a template for a portal to be shared by hospitals or pregnancy apps to create awareness among the women and her close family and friends.
For Her
-
Articles on miscarriage and stillbirth
​
-
Information on expectations with emotional and physical changes
​
-
Provision for seeking medical help
For partner
-
To understand the effects of the loss
​
-
To provide an emotional support
​
-
To be empathetic towards her
​
-
To talk and listen to how she feels
​
-
Coping a loss together
For Family /Friends
-
To be informed on effects of loss
​
-
To provide an emotional support
​
-
To be empathetic towards her
​
-
To talk and listen to how she feels
​
-
To know what to say
Conclusion
Miscarriages or stillbirths do not have to be a stigma where people find it difficult to talk. With the immense turmoil on a woman's health, the last thing she would want is ---- to be left isolated and blamed for a natural occurrence.
​
Creating awareness is very important among women and the people around her. With a supportive community (that comprises of family, friends and medical professionals), she can heal while being aware of a support system that she can rely on and ask for help without being judged.
Limitations
​
-
All the women involved in the study have had at least one successful pregnancy, and this study would have revealed a different range of results for women suffering the loss with no children.
-
Due to limited time and access, I was able to obtain only 5 representative users originating from Pakistan and India that may not represent the entire south asian community.
-
This study does not target women from rural areas.
Next Steps
​
-
Connect with the women interviewed to showcase my proposed guidelines and gain feedback.
-
If I do proceed with this research, then it would be interesting to connect with a medical facility to share my research on this matter (depending on their availability and permission).
-
Due to project deadlines, I was not able to include the data of a new participant who shared her story a few days ago through e-mail. So I would re-iterate on this study with her data included and to observe any more insights.
Acknowledgement : Thank you to all the women who contributed by sharing their intimate stories and experiences, without which I would not have been able to conduct this study.
​
Thank you to Professor Velian for the encouragement and support throughout this study