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Living and Transforming with Perinatal Loss

Continuing Education Tools

Christine Jonas-Simpson RN; PhD, Producer

Hello and Welcome,

I am so happy you found your way here, and I do hope that these research documentaries provide you with what you hope for on your journey of living and transforming with loss or as you facilitate the learning of students, healthcare professionals or the public about perinatal loss (loss that occurs around the time of birth).

In 2001, on July 15th, my life changed forever when my son, Ethan William Simpson, was born still. He weighed nearly six pounds and had red curly hair, a button nose and long fingers like his brothers. His umbilical cord had knotted just prior to his due date. My research prior to the death of my son focused on how human beings lived and transformed with loss in their lives. The participants in my research were older persons and those living with dementia and their family members. I was in the midst of conducting interviews with daughters whose mothers were diagnosed with Alzheimer disease about their experience of loss when my son died. Immersed in others' experience of loss, I plunged into my own, and I was not sure I would ever surface again.

When I did surface I was struck with how little research had been conducted on the experiences of persons (mothers, children, fathers, grandparents and even cousins) who have lived with perinatal loss. I began with mothers' experiences of infant loss using an arts-based narrative method where my research team members, Eileen McMahon and Ann Bayly-Bruneel, and I (2008) collected narratives, photos, poetry, and artwork from nine women through an Internet study producing a research-based art installation. Three paintings were created by Ann Baly-Bruneel to artistically represent the findings of our study which reflected the agony of loss, continuing connections and new hope. After this study was completed a research documentary exploring further how mothers live and transform with loss was produced. It is entitled, Enduring love: Transforming loss (Jonas-Simpson, 2011). Similar findings from both studies are reflected in this film.

All the mothers who participated in the documentary, Enduring Love, spoke of their children's experiences of grieving and mourning the loss of their baby sibling, even though this was not an interview question. This theme was so compelling, as it reflected the literature on sibling loss where the children had a much longer relationship with their deceased siblings. As with other sibling loss, the children whose baby sibling died also experienced continuing connections and lifelong relationships long after the physical death. A short documentary was cut from the longer version and named: Why did baby die? Mothering children living with the loss, love and continuing presence of a baby sibling (Jonas-Simpson, 2010). It is my short documentary with a very long name!

I also noticed how much my loss affected the nurses and doctors that cared for me. With additional interest from my colleagues, we conducted a study on nurses' experiences of caring for families whose babies were born still or died shortly after birth (Jonas-Simpson, McMahon, Watson & Andrews, 2010). I was struck with how similar some of the nurses' experiences were to my own experience of grief, and I decided to explore further the nurses' experiences of grief which led to the research-based documentary, Nurses grieve too: Insights into experiences with perinatal Loss (Jonas-Simpson, 2011) which was conducted with co-investigators Cindy MacDonald, Eileen McMahon and Beryl Pilkington.

Please let me and my research team members know what you think of our documentary Nurses Grieve Too. We have a survey set up for you to respond to if you wish. We appreciate your feedback. Thank you for your interest and for the many, many emails and kinds letters of support.

Love and Peace, Christine

Christine Jonas-Simpson, RN, PhD
Assistant Professor, Faculty of Health,
School of Nursing, York University
4700 Keele St.
Rm. 321 HNES Bldg.
Toronto, ON, Canada, M3J 1P3
(416) 736-2100 x 21019 Fax (416) 736-5714
jonasimp@yorku.ca

Nurses Grieve Too: Insights into Experiences with
Perinatal Loss

Nurses Grieve Too: Insights into Experiences with Perinatal Loss is a ground-breaking documentary that shares what grief is for nurses who care for bereaved families with perinatal loss. This research-based documentary answers the research question: What is experience of grieving, for obstetrical and neonatal nurses caring for families who experience perinatal loss? Nurses describe the professional and personal impact of grieving, what helps them and how the experience has changed them and help them to grow. The documentary makes the invisible grief of nurses - visible. It aspires to support nurses so they no longer feel alone or isolated in their experiences of grieving, as many nurses can carry the pain and memories of the families' loss and experiences with them for years.

Price: $10.00 + S&H/Taxes

Funded by:
AWHONN Canada

Canadian Nurses Foundation: The Nursing Care Partnership Program (made possible with a grant from the Canadian Health Services Research Foundation).

Faculty of Health, York University

Health, Leadership and Learning Network: The Interprofessional Education Initiative, Faculty of Health, York University




Why did baby die?: Mothering children living with the loss, love and continuing presence of a baby sibling

Why did baby die?: Mothering children living with the loss, love and continuing presence of a baby sibling captures the profound impact children have on a mother's grief after the loss of her baby. In this research-based documentary mothers also tell how young children respond to the loss of their baby sibling. Despite the permanence of the physical loss, children continue to connect with their deceased siblings in various ways while creating new meanings of their experience of loss and love which they carry into adolescence.

Price: $20.00 + S&H/Taxes

Funded by:
Faculty of Health, York University and the




Enduring Love: Transforming Love

Enduring Love: Transforming Love is a full length research-based documentary (50 min) which answers the research question, What is the experience of living and transforming with loss for mothers whose babies died? The purpose of this research was to explore the meaning of infant loss with mothers from different backgrounds while piloting the arts-based medium of digital videography. Significant to the mothers' experiences were patterns that emerged in each of their narratives. For instance, the mothers described: the agony of their loss, appreciating the acknowledgement of their child by others, receiving and giving help, personal growth, the importance of mothering children who grieve and mourn, the abiding presence of their deceased baby, creating touchstones, and the acceptance of the death while celebrating a life and the ongoing connections. The use of digital videography enhanced this research by creating an audio visual translation of the research simultaneously with the data collection and multidimensional research analysis.

Price: $34.95 + S&H/Taxes

Funded by:
Faculty of Health, York University

Health, Leadership and Learning Network: The Interprofessional Education Initiative, Faculty of Health, York University








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Nurses Grieve Too

Why did baby die?

Enduring Love


DVD Testimonials

Dear Christine,
The social relevance of your work is apparent to me in many ways. To begin, death and grieving are a universal experience. Read More

"When the documentary started, I felt like I was hearing the nurses speak my mind. I would have expressed myself in the exact words."

"I felt supported! I felt the same way they did. I wanted to tell them they were not alone."

"Excellent - This should be seen by all nursing and medical students early in their training. I think all the lessons in this documentary are transferrable to just about any situation in health care - Nursery, OR, ER, ICU, Palliative care and on - where loss and grief are potentially part of the job. Health care workers often neglect their own feelings over tragic events they experience at work. Your work here will draw needed attention to this issue. Well done"

Robert H. Heyes MD, CCFP

A book for young children who
grieve the loss of a baby sibling
by Christine Jonas-Simpson




Ethan's Butterflies
A Spiritual Book For Parents and Young Children After the Loss of a Baby