In today's episode, I spoke with one of the profession's leading scholars and experts on perinatal loss, associate professor of social work at Virginia Commonwealth University, Dr. Sarah Kye Price.
We talked why it is important to do a thorough assessment of pregnancy and pregnancy-related loss during a biopsychosocialspiritual assessment. She talked about the importance of allowing mothers / parents to tell their story. She pointed out that, although no loss is worse than any other, there are different intensities and needs depending on the loss. She also noted that families in which there was a perinatal loss, there can also be growth. We talked about the different types of interventions and treatment approaches for individuals and families who experience perinatal loss. We ended our conversation with resources for people interested in learning more.
Sarah Kye Price is an Associate Professor in the School of Social Work at Virginia Commonwealth University. She received her PhD from Washington University in St. Louis and her MSW from Syracuse University. She currently teaches courses in direct social work practice and crisis intervention/planned short-term treatment in the MSW program, as well as research methods and program evaluation in the Doctoral program. Her prior direct practice experiences include work as a Grief Therapist for Life Transitions Center in Buffalo, NY and the coordinator of SIDS family support services in both Western New York and the St. Louis, Missouri metro region. Her research and publications focus on the socio-cultural and psychosocial experiences of reproductive and perinatal loss, as well as women’s mental health within low-income communities disproportionately affected by fetal and infant mortality. She is currently funded through the National Institutes for Health via the VCU Center for Clinical and Translational Research KL2 Scholar program, working in partnership with maternal and child health home visiting programs in Virginia to implement and evaluate the Enhanced Engagement model of MCH home visiting which integrates mental health services, including bereavement support, into existing health promotion programs for pregnant and parenting women in low-income communities. Her vision is create a responsive tier of services that integrates bereavement support and mental health promotion fluidly…and without stigma…into existing services supporting pregnant and postpartum women. Dr. Price is the Past President of the Pregnancy Loss and Infant Death Alliance (PLIDA), a national non-profit organization whose mission is to support the work of professionals who support grieving families.
ContactPhone: (804) 828-0579
Jonathan Singer: Hey there podcast listeners. The last few times I've come to record introductions for the Social Work Podcast, there had been major public tragedies in the United States involving the very painful loss of life. A couple of episodes ago, there was the massacre at Sandy Hook Elementary School. Earlier this week, there was the bombing at the Boston Marathon and just last night there was an explosion at a plant in West Texas. The death toll and the injury toll from that event is still unknown. These types of losses are very visible and very public.
Today’s episode is on a more invisible, invisible to professionals and invisible to the public, very private kind of loss. It's on perinatal loss. And perinatal loss is ectopic pregnancies, miscarriages (which are officially known as spontaneous abortions), stillbirths (or late term pregnancy loss), and then neonatal or newborn death.
Between a quarter and 50% of all people have experienced some sort of pregnancy-related loss and yet it's something that we rarely talk about. And that’s one of the reasons why I was so excited to talk with today’s guest: one of social work’s leading scholars and experts in perinatal loss, associate professor of social work at Virginia Commonwealth University, Sarah Kye Price.
In today’s interview, Sarah and I talk about the importance of exploring pregnancy-related loss in the biopsychosocial spiritual assessment. Sarah clarified that although there are different types of pregnancy loss, no loss is worse than any other kind of loss, even if they vary in intensity and need depending on the type of loss. We talked about the kinds of services that are available and what social workers can do. She also talked about the importance of allowing parents to tell their stories and growth that can follow loss. And we ended with a conversation about resources for folks who are interested in learning more.
I recorded my conversation with Sarah in November of 2012. We were at a conference. In the beginning you'll hear sirens; there are sounds of vacuums and air conditioners going on and off. It's not so much that it's distracting, but certainly with the sirens I want to let you know in case you're listening to this in the car or anywhere where the sound of sirens might be disconcerting.
So that being said, on to episode 79 of the Social Work Podcast: “Perinatal Loss: An Interview with Sarah Kye Price.”
Jonathan Singer: So Sarah, thanks so much for being with us here today on the Social Work Podcast and talking about perinatal loss. So, the first question is: What is perinatal loss?
Sarah Kye Price: Well, thank you for having me and thank you for wanting to talk about the topic. I think one of the misconceptions that people have is that perinatal loss might be a niche area of social work or something that is a very fine area of the field and in reality, about 25% to upwards on 50% of women in families experience some sort of a death or reproductive loss event. And when I use the term perinatal loss, I'm referring to a death that happens either when the fetus is developing during pregnancy- or during that time- during childbirth or immediately after childbirth in the childbirth and neonatal period.
Jonathan Singer: Clearly if 50% of families have experienced that, that’s important. What made you interested in this?
Sarah Kye Price: Well, I started out as a geriatric social worker. So I didn’t start out as a social worker who said: “I want to work with perinatal loss.” But I started out as someone who worked with older adults at the end of their lifespan. And one of the things that happened to me is in the course of about a year, I had four older adult women with very complicated loss issues. And mind you, bereavement has always been my passion in the field and so I was working with older adults because that’s I guess what we traditionally think: end of life, there's more issues of loss as we age.
But for the women that I worked with, and one stands out in particular, I was working on a hospice team as a bereavement coordinator and there was a family who was a very typical hospice family, very supportive involved family. There wasn’t a lot of [00:05:00] perceived crisis. We were going to provide general support as we always did. But the day after, the man who was enrolled in hospice passed away, the nurse called me in the team and said: “You have to go out and see – (I'll call her Betty) and I'm worried about her. I'm terrified. She’s not right. Something is not right and I don’t know what's going on.”
So that was my job, so I went out to talk with her and as I often did with my older adult clients. And she was, she was very much in acute distress, more so than would be predicted given all the anticipatory loss that the team had seen and so I said, “Betty, are there other times in your life when you’ve experienced a loss and what were some of things that you did to help you through those times?”
And she broke down in tears and began to tell me this story about the child that she had, that she had given birth to. And she had a very difficult pregnancy and the child had some very significant malformations at birth and at the time she wasn’t allowed to see, hold or even acknowledge the child that she had given birth to. She was in essence, you know, anesthetized for delivery. Her husband was – went with the doctors, had the baby’s body disposed of and told her afterwards it was better that you didn’t see the child.
The two of them are the only people that knew about the existence of this little life that she had given birth to and had lived only a few minutes actually, after the baby had been born. And she held that with her spouse their entire marriage, which was 64 years and after he died, she went into an acute distress over this particular loss as if it had happened that minute. And I thought to myself: We have to do better. We MUST do better for women and families.
People need to not feel this acute pain throughout their lifespan and to have that loss happen later. We can't always control when a loss event happens, but we can control the way the system and individuals in society responds to that loss event.
So I think that was the turning point in my career. I had some similar situations with older adults who were really acutely still grieving losses that had happened during pregnancy, unresolved grief that had happened in their lifetime. But it made me realize we needed to do something different. And I began to sort of make connections in the community and specialize with groups who might interface with women and families who had experienced perinatal loss or early infant deaths to try to see what was happening in the healthcare provider community and to see the ways that we could respond differently to families.
Jonathan Singer: It's such a sad story to think about, you know, that this woman had – first of all- the event was sad clearly, but that this woman had to live with this with her husband sort of in isolation. And that even though they were involved in this sort of system of care, right hospice, it wasn’t something that it sounded like anybody ever knew about.
Sarah Kye Price: Exactly and I think one of the things that happens is that we have a lot of socially recognized losses, which are expected losses. And it's hard when we have any kind of losses, whether it's of a parent, of a spouse, but there are sort of socially sanctioned losses that we expect we might have to encounter in this lifetime and there are social rituals around that. There's funerals and wakes and periods of mourning and unfortunately, when a death happens during pregnancy or shortly after birth, there aren't the same rituals that surround that. And sometimes I think there's a few social taboos that get in the way.
What was interesting, and it was a particular story that I talked about, is that we ended up doing grief work, not about her spouse- until later. We actually did grief work around the immediacy of the loss that she felt and actually did a very simple remembrance and naming ceremony and gave some credence to that loss that she had held for so many years as real. And I think that that is a theme that I've really had to reencounter with a number of families, is the realness of a loss even if we can't see, we're experiencing. You know, at nine months of pregnancy are an experience of the presence and expectation. So whether or not we have a worldview that thinks that life begins at conception and we look at this as personhood or we have a worldview that says that that life begins when the first breath is taken, that’s irrelevant.
We meet our clients where we're at and what we do is we work with them around the [00:10:00] expectations and the normal attachments that we want, of course, to develop in a healthy pregnancy. And when those ties are severed because of death and loss, we want to meet that client where they're at in order to support them in grieving that loss.
Jonathan Singer: Earlier you mentioned that, you know, possibly up to 50% of families that we work with have experienced a perinatal loss and that loss could occur in the first trimester.
Sarah Kye Price: Yes. And that’s the reason for the high-end number. I did some work with data from the National Center for Education Statistics in a national survey of fertility barriers, two different large national studies, and both of that data would presume that about 25% of all currently parenting families in the United States have experienced a death during pregnancy that was recorded on a birth certificate.
Now that presumes that someone has sought care in a health system and things are recorded in a birth certificate, so that tends to reflect more later gestational losses. The estimates from a number of different studies are that over the course of one’s lifetime, you have many more opportunities to have an experience of loss. And so that if we look at people in terms of lifetime risk, approximately 50% of all people experience the possibility that they’ll have a loss event happen. Whether that is an early miscarriage, we kind of coined some terms to make miscarriage- is not a medical term really, I mean we've kind of coined it as a social term or stillbirth.
Jonathan Singer: I think the medical term is “fetal demise.”
Sarah Kye Price: Fetal demise, right which means: “that any time at which the fetus is not viable enough to survive on its own if it were to be born.” So that’s what we really do and it's a very large span. And I think over time, of course, because medical technology becomes more advanced, we have the possibility of doing more medical heroics, so there are babies at younger gestational ages that do survive with medical intervention.
So, I think those definitions have shifted just as technology advances. And it's interesting, I haven’t done research specifically on the subject, but a lot of us who have done anecdotal work with families, there are some different expectations around survival at certain ages and what we think of in terms of viability. And I think that I'm not making a judgment call on what that is, but I think it becomes more of a reality of what in clinical practice we have to be willing to converse about and hold with families. Are there expectations around viability and survivability? Because that’s really changed as technology has changed.
Jonathan Singer: Yeah, when you can have a delivery at 22 weeks, 24 weeks and that baby, you know, six years later is a happy little kid running around that, you know, 20 or 30 years ago would never have lived to be 6.
Sarah Kye Price: Right.
Jonathan Singer: -Would never have lived.
Sarah Kye Price: Exactly. And you know on one side it's wonderful, but not every single fetus at 22 weeks is going to be able to have that success story and that’s not a matter of something you or I could control. I mean it's wonderful that we put out that opportunity for it to happen, but there are as many people who unfortunately, you know, have a belief that maybe this will happen and the outcome isn't just positive for them. And so I think that becomes part of the story.
One of the things that I found in my own practice is that people need to tell their story. Not because they're looking to you to give them the perfect answer, but because they need to talk through the story of expectation, of hope, of sadness and it has a different characteristic for everyone. The details, there are certain details for certain families that will stand out, that they really need to process, and unfortunately we don’t socially have a really good way of allowing for that story to be told.
Jonathan Singer: And you can't open up the space for somebody to talk about that story if you don’t know that that is part of their story.
Sarah Kye Price: Exactly. And you know, it's become really very evident to me how much we overlook people’s stories when it comes to reproductive and perinatal loss.
Even when I was on the job market (the academic job market) and my dissertation was on pregnancy after perinatal loss and so I would give my job talk in a very academic setting, you know, so the audience weren't people who are there to hear me talk about perinatal bereavement. Every time I gave a talk, [00:15:00] someone came up to me and said: “Thank you. This happened to me. This happened to my sister. I didn’t know what to say.”
People constantly come up to me, even when I'm not in a crowd where I would expect them to, and tell me their stories. And that reinforces to me that while we have made a lot of gains in the last 10 years, particularly in the healthcare provider community in trying to respond to families’ needs around perinatal loss, we still have a lot of people whose stories aren't being told and not all those people need therapy.
There's a difference, you know, sometimes people do and there's a role for grief counseling and grief therapy in working with some of the issues that are not as easy to resolve. But we all do need an opportunity to tell our story and be heard and move through a meaning making process. That is what grief is about and just the acknowledgment that it's okay to engage in that meaning making process around the loss that’s sometimes socially invisible is a really powerful, powerful statement.
Jonathan Singer: And you know, one of the things that’s clear from what you’ve said so far is that, you know, a perinatal loss is something that can live inside somebody’s, you know, psyche, mind, heart. But because there's no sort of socially sanctioned way to get it out there (unlike the death of a spouse) that unless we ask about that in an intake assessment, right or something – you know, when we're doing our biopsychosocial, you know, maybe this is a little too harsh, but you know we're sort of contributing to that culture of silence around it. And so, you know, for folks doing biopsychosocials, doing an intake assessment, what sort of things should we be asking so that we're doing a better job of establishing this issue of perinatal loss or issues around pregnancy that are important in our client’s lives and our client’s parents’ lives that might have affected the family that we might otherwise not know about?
Sarah Kye Price: That’s a great question and thanks for asking about that. The articles that I wrote for social work a few years ago give some very specific guidelines for social workers in assessment because you're right, there is a silence. And it's not that we're intending to create it, but sometimes we're afraid to ask. We don’t know how to ask this question. So, I like to think that there – one of the subjects we probably talk about the least in social work is reproduction, but it affects our whole biopsychosocial, right.
I mean there's nothing about pregnancy and childbirth that isn't bio and psycho and social. You know, it's so intrinsic to what we do and yet our profession hasn’t really embraced that whole like pregnancy talk in the same way that we would. Maybe we see it as an obstetrics thing or–
Jonathan Singer: Yeah. We're not midwives or OB-GYN, so that’s not us, right.
Sarah Kye Price: Right, right, but at the same time I think asking – so I would encourage social workers to talk about pregnancy and reproductive history in general, which then offers you a perfect foray to ask a later question. Because I think we have neglected all of pregnancy history, oftentimes unless we're working in really specialized settings, but I think–
Jonathan Singer: Yeah, or it's very perfunctory and sort of like–
Sarah Kye Price: Yes.
Jonathan Singer: “So, how was your pregnancy with your kid? Were you taking vitamins or anything else? Okay, good.”
Sarah Kye Price: Okay, yeah, yeah. “Now move on…
Jonathan Singer: “Now, let's move on with developmental milestones, you know.”
Sarah Kye Price: Exactly. I'm just saying, you know, when we talk about child, when we talk about reproduction, you know, asking an open-ended question and saying: “Can you tell me a little bit about your experiences in thinking about having children and pregnancies that you may have had and actually having children and what that’s been like for you?” We can ask a very open assessment question like that, which doesn’t feel threatening for me to ask or for you to hear. And I think, you know, I would encourage us to ask this of men and women because men also have a reproductive history. So this is not just a woman’s issue.
I think for women there's an extra nuance (and I want to really emphasize this for social workers) is that there's a bio in that biopsychosocial and so for any woman who has been pregnant for any length of time, this pregnancy is attached to her body. You know, there's no separation between the developing fetus and the body in which that developing fetus is housed-in. So, I'm particularly interested in women’s experiences of perinatal loss (not to the exclusion of men) and it's always in a familial [00:20:00] context, but I think maybe we haven’t done as much thought work around that connection.
And some writers and people who have written in this area that I really respect, Linda Layne is one of them and she’s a feminist medical anthropologist actually, but she’s written a lot about how even our terminology connects losses to body losses or terms like incompetent cervix or that create the possibility for pre-term labor. You know even in our medical terminology, we have connected it to body failure and so many of the women that I've seen in my practice are saying: “What's wrong with me. I had this loss, there’s something wrong with me.”
And it's not always what's wrong with me, there's a number of different circumstances that can happen. But thinking about that biopsychosocial connection of loss, it's a bio loss and for women who have been pregnant so that they're lactating or they have hormonal fluctuations in pregnancy (similar to the way we all do postpartum after delivery) you know, there's postpartum hormonal fluctuations if a baby dies as much as there are if a baby lives and we don’t always put that bio together. And so whether we're working in a health system, whether we're working in child welfare, whether we're working in a general mental health setting, having the opportunity for people to talk about their pregnancy history and then depending on what they say, just finding those moments (as we all know happen in a worker-client encounter) to say: “Are there any – have there been any times when pregnancies haven’t gone as you expected? Had there been anything that felt like a loss to you?”
And interestingly, I mean, for many families (we haven’t talked about this yet), but the notion of infertility or the desire to have a child and not being able to fulfill that, that’s a different kind of reproductive loss and it's still there and present too. So I think it allows us, it sends a message to our clients that we're open to hearing their stories and struggles as well as their successes and joys. Pregnancy is an interesting time period, you know, and reproduction is filled with joy and it's also filled with the potential for some loss and if we get comfortable with that then we can ask the question and we can hear the stories.
Jonathan Singer: And so one of the questions that I had was: In your research or in the research that other folks have done, is there any indication that some loss is worse than others? Like as social workers can we say: “Okay, so you know first trimester miscarriage, not so bad. But this other thing, really bad.” Like can we gauge it that way or not?
Sarah Kye Price: Well, I would say that, I mean I was at a workshop that Ken Doka, who is a grief writer, gave a number of years ago. It was a general loss workshop (but it pertains to your question) and he had a flip chart up on the board (because there's a whole bunch of bereavement professionals) and he said, “All right, all right, you know. We know there's no loss that’s worse than others. But you know really, we're the grief professionals. I want to hear it. Put it up on the board. What’s the hardest things for people to work with?”
And so people had said, you know, various things that they’d encountered in their practice that were very difficult and they struggled. And he said: “There's only one answer to this question.” And he flipped his flip chart over and it said: “Your loss.” [Pause] That stuck in my mind deeply. Because it is the experience of your own loss that is the most difficult to deal with because every loss is so full of nuance.
One of the hardest things for me to balance as a researcher, in this area, is the fact that bereavement and loss are so nuanced. And yet we do also need a sense of normativeness because it helps us prepare; it helps us develop an evidence base for practice. So what I would say to that question is that the intensity of the loss of these different types of perinatal losses, the intensity and the needs are different amongst different types of losses, but there's none that’s worse than the other except the one of the client that you're working with and that’s where the focus remains. It's not whose loss is greater or less.
But the families we work with struggle with this as well, because sometimes I will invite someone to a support group that’s more of a “general loss group” and people have gotten the feeling that their losses are sort of relegated. And that’s very real and it's not an intentionality of other people in the group.
I've facilitated groups where I've heard, you know, as the words are coming out of my client’s mouth, I want to pick it up and take it away. But I can't because that’s in the group where we've been sharing this and someone says: “Well, at least you got to see your baby.” Or you know people will say things because it's based on their own experience. [00:25:00] There's pain that’s very specific to not being able to see and hold and care for a baby because a loss happens early. There's pain that’s unique when a loss has happened and it's known about and the pregnancy is carried to term. And there's anticipatory loss and even if it's with a lot of support, that’s painful. There's loss when everything is going perfectly and then something tragic happens during the birth process and a death happens that’s very unexpected.
There is pain when someone has had years and years and years of infertility and finally gets pregnant and has a loss at eight weeks that most people would say: “Oh, it's just an eight-week loss.” But that family is wrestling because it was their first hopeful experience when they had had such difficulty with conception. So, I can never say that there's one of those losses that is more significant than another, but I can say that it's important to allow for the nuance and that’s where the meaning-making comes in, to allow our clients to talk about the meaning that they make.
We've also talked to this point about loss in terms of the painful sad elements of loss-which are absolutely real. But there's also a lot of literature emerging around the personal growth domains of loss and there's a few people and actually an analysis that I just did that reinforce the way in which particularly perinatal loss, reproductive loss experiences. So I looked in this recent study that just came out in Illness, Crisis and Loss, I looked at a segment of families who had experience in fertility and a segment of families who experience perinatal loss and a non-bereaved segment of families off in the national survey of fertility barriers and we saw some similarities in – I was working with confirmatory factor analysis.
We saw some similarities with depression and with complicated grief symptomatology in families who had experienced the perinatal death and infertility. But what was interesting is that we saw commonalities also for those two groups over a non-bereaved group in terms of personal growth.
Jonathan Singer: So you're saying that the folks that experienced the loss had sort of a level of growth that the folks that didn’t experience the loss didn’t–
Sarah Kye Price: Didn’t have.
Jonathan Singer: – have.
Sarah Kye Price: And so their general senses of life satisfaction, of things being okay, of having the right perspective about life, some of these personal growth questions that we were able to extract from the survey were distinctly different and stronger in families that have had experienced loss, whether it was infertility-related loss or a perinatal death-related loss. And this made me – the findings were, you know, very – just so compelling to me when I did the analysis.
I had sort of asked it as an exploratory hypothesis to try to figure out from some of what we were writing conceptually about personal growth as a conceptual domain, whether that would hold true in actual data. But what was so compelling to me were some of the stories I would go back to the families that I worked with in practice because many of the women and men that I worked with in practice are young and for many of them this was one of their first major encounters with death. Because you tend to be younger in your reproductive years, not to say that all of us are immune from other losses in our life, but this was a – this is a biggie.
This is a big difficult loss and when it happens and you don’t have other loss-related coping mechanisms, it throws you—psychologically. But the processes that are in place through support, through talking, through the story sharing, through figuring out what they were made of, through figuring out what their relationships were made of and how to communicate around these emotive issues, they would report increasing amounts of personal growth in a sort of simultaneous way.
You know there's growth and there's challenge at the same time. And I think that that is something that we have to really take into account in strength-based practice as well, that we're not just sort of patting someone on the arm and letting them cry and telling them it will get better. But that we are actively working with someone to say: “This is painful and what are you learning. This is painful, how are you communicating with your partner? This, you know, this may be difficult, what are you learning about yourself? How has your perspective of life changed?” So that we're both facilitating growth as well as facilitating movement through the more difficult and challenging sadness and guilt and anger and confusion that happen with a loss experience as well.
Jonathan Singer: So, as we've talked about [00:30:00] the idea of first of all, finding out that there's a loss, right, which is the first step and being able to address it. And then acknowledging that loss happens not just for the woman but also for the man, right, and possibly for other people in the family.
Sarah Kye Price: Exactly.
Jonathan Singer: That there's this biological component that is specific to the woman and that there are even opportunities for growth. How do you work with somebody for whom this is, either: presents with this as a primary concern. Like, you know: “We had – we experienced perinatal loss six months ago. I'm completely under water, like I need help.” Like that’s presenting or somebody that during an assessment it comes up that this has been part of what appears to be kind of an ongoing thing but isn't exactly why they came in in the first place.
Like do you work with those folks differently? And if so, what would a social worker do with somebody who’s experiencing perinatal loss? Do you provide the therapy? Do you refer them out to somebody else, individual group, what do you do with these folks?
Sarah Kye Price: It's a great question and you know as I said, I started my career in geriatrics and so I personally have worked with clients around perinatal loss issues and long-term care, home health care, hospice care, direct bereavement counseling and now I do maternal and child health work. And so I do a lot of work with community-based organizations, like maternal and child health home visiting, early head start who are encountering, you know, these real issues in the lives of women.
So, you have two really important questions and one is when someone says: “You know, I've had this loss, I don’t know what to do with this” and I think about a client who did come in on referrals of course ended with my desk because you know the only one I did.
Jonathan Singer and Sarah Kye Price: Give it to Sarah!
Sarah Kye Price: But I remember I didn’t have that many clients, even though I was known to be a specialist in this area, who will come to see me just around a perinatal loss. But when I did have some clients who did, it was very often because they wanted to know if it was okay for them to grieve this and the most powerful thing I gave them was validation.
So some of the simple questions that I do when someone comes in: “So what have you done right now? You’ve had this loss. It's been very difficult. It's been very challenging. Has there been anything that you’ve been able to do that feels like allowed you to commemorate or remember or pay tribute to this experience in your life?” Whether or not that means an experience and they want to have a naming ceremony and they want an experience that’s more typical for a funeral that we’d be familiar with for a person that died in another relationship. Or whether it has to do with an experience, an expression of how this being pregnant, this loss during pregnancy, this loss of expectation impacted you.
And so I like to talk about both of those as happening simultaneously with reproductive loss because I can't presume where someone’s thoughts are and interestingly, there are a number of different ways to go in either direction. There are ways to facilitate, you know, gathering and helping them plan something that’s, you know, a very simple memorial.
There's also, in one of the websites that I'll give to you, there's an organization called “The Secret Club Project” that’s just completely arts-based. It's families, people from families who’ve experienced a perinatal loss, who’ve expressed it through art. And sometimes people find great comfort in seeing the way people have given artistic expression to their experience of loss as well and that may be something that they can do, so it's sort of allowing that open expression.
What is going to be meaningful to you, is the question. What will be a meaningful way for you to recognize this experience as part of your life history, because that’s really what I encourage us to do as social workers. We don’t have to be funeral planners or-- what we have to do is give people an opportunity to integrate the events of their life into their history and story of who they are.
That’s what our biopsychosocial approach is about and so opening that up and letting them explore is what I would encourage. It can be very helpful to many families to talk with other families who have experienced the loss, whether that’s through a group setting or whether that’s exploring with them what organizations they're already a part of, civic organizations, religious faith-based organizations and saying: “Is there a way for you to [00:35:00] talk with people about your experience there?” and see if there's anyone you already know who’s experienced a similar loss, because there's nothing like opening that door to realize that you are not as alone as you think you are.
Jonathan Singer: Right. And from the stats that you talked about in the beginning of this interview, it's almost definite that there will be somebody–
Sarah Kye Price: Right.
Jonathan Singer: – who they don’t know–
Sarah Kye Price: Yeah.
Jonathan Singer: – but that has experienced a perinatal loss.
Sarah Kye Price: Because there's a lot of silence that moves around that and sometimes just knowing that there's someone that they can connect with. It doesn’t mean they have to have a weekly meeting, or some people want that, that’s grand. But there are other people who just knowing that there's someone else, just not living inside their own head or feeling like they're isolated in the experience is really significant.
Jonathan Singer: Right. Is there, you know in social work we talked a lot about sort of empirically-supported treatments or best practices, are there best practices for working with either individuals or couples or even families who’ve experienced a perinatal loss?
Sarah Kye Price: Yeah. Well, you know where I turn to a lot, there's two organizations that really have done a lot of work, interdisciplinary work with nurses, social workers, chaplains, people who tend to be in the front line of contact with people when a loss happens. And there's an organization called “Bereavement Services,” used to be called “Resolved Through Sharing,” that’s based out of Wisconsin and they offer professional training nationwide and “Train the Trainer” training.
What they really emphasize are relationship-based model of care that really resonates very well with our social work values, even though it came out of mostly nursing practice. It really resonates with that strength perspective and helps really anyone in the helping capacity, understand the key choice making and allowing, facilitating choice even when choices are limited in someone’s life.
And then there's “Share Pregnancy” and “Infant Death Support” which is located in St. Charles, Missouri as their headquarters, but they are also national organization. And they offer many trainings for support group facilitators, as well as online support and then they have a moderated, facilitated online support network for families who’ve experience perinatal loss as well.
So, there's several different organizations that do that, I think, very well. And that would be a great referral mechanism if you didn’t feel you're in practice and you kind of felt like: this is outside my immediate realm of expertise. But you can always focus on the person. You know this is a part of the person. I think all of us can do, all of us can do that. So, I want to encourage us to not be like: “Oh, there's a perinatal loss. I have to refer them out” because this is a part of a person’s history and life and if we normalize, that helps the social norms change. But augmenting how we're working with the client in whatever our practice is with some of these organizations who have chapters, support groups, you know, another – there’s a nationwide network of support groups within this foundation, “Mothers in Sympathy and Support” and our colleague Joanne Cacciatore (who’s at ASU, Arizona State University) has been their executive director and founder. They have national chapters, international chapters actually and, you know, so I think there's a lot of support resources to augment what we do that are very perinatal loss specific.
Jonathan Singer: It sounds like a lot of it is support groups. It's mutual aide: “I'm with people who have been where I've been--”
Sarah Kye Price: Yes.
Jonathan Singer: --who are where I am” more so than individual, complicated grief therapy or something like that. Is that right? Is that what I'm getting?
Sarah Kye Price: It is. I think the field is struggling with this a little bit and you see it in the latest DSM revisions, that’s a topic for a different podcast but, you know, but–
Jonathan Singer: (Laughter) No, let's spend an hour and a half going into it right now. I'm sure as people are driving to their classes or work they're going to totally–
Sarah Kye Price: (Laughter) Yeah, exactly.
Jonathan Singer: – they're going to be glad to talk about it.
Sarah Kye Price: But I think the fundamental struggle in some of the, you know: Is it grief? Is it depression? Is it mental health? Is it bereavement? that’s going on with the DSM debate. What the core of that is about, is that we recognize that grief is uniquely human and will probably affect almost all of us in this lifetime. Whereas we also recognize that there are situations and events and complexities of the individual and the social and layers and layers of difficulty that mean that there are individuals who are grieving who also need and deserve more intensive treatment: an intervention. Because that’s what they need at the time, meeting them where they're at is providing a more intensive level of counseling, therapy and support and there's nothing [00:40:00] wrong with that. And that doesn’t mean that there are people, we can't put the stigma on that, around some people cope better than others. It's not that.
It's the layers of complexity that happen that are unique to the individual, his or her family situation, social dynamics, you know, long-term history pieces and so there's nothing like a grief event to open all that stuff up, right. So for those of us who are in clinical practice I think, you know, your earlier question as you asked about when we find out about this loss later, that’s a little bit more typical. What brings you in the door is the tip of the iceberg.
Jonathan Singer: Right.
Sarah Kye Price: What we work on through getting a good history, through building a trusting relationship, through asking the right appropriately confrontational questions that make people, you know, open up and feel comfortable opening up. And I don’t mean confrontation in a negative way, but in a way that says you know: “This is a safe space and I can ask you a question that might make you have to talk about an uncomfortable situation in your life because we recognize that in that there can be healing.” So, I think that has been more my experience and you know I think at the core of that there are some unresolved grief issues for a lot of people.
The other thing that I'll say, and I just want to put this out there for social workers, is that we all have very long reproductive histories and sometimes our reproductive histories are longer than the partner that we're with. And so one of the challenges that happens is if we have someone who approaches us and they approach us in a “couple situation,” there may be pieces that are bigger than the immediacy of their relationship. And so that, you get some sensitive topics around there and I think you have to follow the individual nuances of that. But for many people, you know, our reproductive lifespan can be longer than the relationship we're in at that moment and we have to give that some credence in a non-judgmental way and be willing to have those conversations and appreciate when we may have one conversation when two people are together and another conversation the next day when one of them calls us on the phone and wants to give us some more information or an FYI or a door knob therapy for the next session.
Jonathan Singer: I think that’s so interesting because it really speaks to you know, the complexity of the human experience and really understanding things over time. I know that when I talked with Barbara Jones about pediatric oncology, one of the things that she mentioned was you know: pediatric oncology today is as much about kids who have survived that are suddenly in childbearing years who can't have kids because of their cancer treatment when they were 5, for example. You know, and to that same point if somebody experienced perinatal loss at 18 or 20 and then, you know, at 30 is with somebody new, experiences it again and has, you know, has multiple levels of grief but this other person didn’t know because maybe they didn’t realize their partner was sexually active, you know, who knows what's going on. It's so complicated.
Sarah Kye Price: Life’s complicated, right, right.
Jonathan Singer: Exactly. Yeah. It really speaks to how sensitive we have to be and how curious.
Sarah Kye Price: Yeah.
Jonathan Singer: Appropriately curious, we need to be around this issue of pregnancy, reproductive history.
Sarah Kye Price: And I think this gets back to, Jonathan, why we may avoid it a little bit as social workers. And so because if we know that something could be really messy, you know, we're human beings too and so sometimes we have, or sometimes we feel the constraint of, you know, we have a specific goal that we have to achieve with someone or we have a time-limited--
Jonathan Singer: --we have another client coming in.
Sarah Kye Price: (Laughter) Yes, exactly, you know the realities of practice.
Jonathan Singer: Right.
Sarah Kye Price: So I think, you know, you have to frame it in the context of being open to the discussion, but you can't, you know, drag it out of somebody if you're not going to have time to really work with it either. So you have to be sensitive to being the person who can be open to having that conversation and I think some of that means a little bit of upfront work in our own selves to think about like: What are my values and am I bringing anything into my work or client relationship that would stop somebody from disclosing to me about their pregnancy or their loss history. You know, do I set up some, any kind of signals and do I have some stuff that I'm not comfortable talking about.
And you know we all engage in that and the way that we do some self-reflective practice. I've had a number of people who have come to me and said: “You know I just don’t know what to say” personally or professionally. “I don’t know what to say if someone [00:45:00] I don’t know what to say if someone’s parent dies, I don’t know what to say if someone, you know, was pregnant and I found out they had a pregnancy loss and so I just didn’t say anything.” Yeah, well, yeah, that’s not really helpful either and so I always say--
Jonathan Singer: So what, yeah, so what do you say?
Sarah Kye Price: So, the best thing that you can say is: “My friend, how are you? I'm sorry. I'm sorry you’ve gone through a hard time. Do you want to talk?” It's not to fix it. We don’t have to have a magic bullet to fix it. We don’t have to try to find a placating term. We have to not run away. We have to not try to fix it with our words and so the gift that we give is to be present, to say a heartfelt “I'm sorry,” to give someone a hug and say “I'm here for you no matter what.”
Jonathan Singer: And this is specifically if you're in a sort of a social--
Sarah Kye Price: Right, and--
Jonathan Singer: --setting like your friend or something like that. Now, if you're working with a client, can we use the example of a parent brings a kid in for services? Right? You talk with the parent about: “So how was your pregnancy with little Johnny?” You know, whatever. At that point, should you ask: “Have there been other pregnancies”? Like how do you have this conversation in an assessment setting? [00:46:29]
Sarah Kye Price: Mm-hmm. Oh I think it depends on the practice setting, because you know a situation where maybe I'm concerned mostly about the other child that’s there because my role is more and – you know, who do I identify as my client is really the question there.
Jonathan Singer: Right.
Sarah Kye Price: If that child that the parent brought in is my client, I have to be really sensitive. Because you know, put myself in that shoes, if I bring my daughter into the pediatrician’s office and I get asked questions, I'm only going to disclose so much. I would just, it's just human nature right, because she’s my daughter’s doctor not mine. So the same thing for us.
You know really, if the child or another child was our identified person, I’m probably not going to push the client that much except to say to, you know, the mom or dad or moms or dads or whoever is there with them, you know: “Can you tell me about any other – are there any other children, any other pregnancies that you’ve experienced?” I can ask it in a very innocuous way that lets them say something if they want to say something.
Now if the adults are my clients, you know, that’s a little bit of a different story because I might need to work with them in a more full capacity. Any other situation I want to know, anything about the family’s history that might influence my client with the child, now, I want to know about the grownups in this situation: “So, you know, so talk to me, talk to me about the pregnancy that you've had or the child that was born, other pregnancies and what your hopes and expectations are for the future.”
So, I put it in a context. I like to ask the question in a general way that lets people regard their past or present and their future: “Talk to me about, you know, what your you know, what you had wanted, what has happened and what you hope for the future.” Because that puts it out there and I think in the answer to that question always are the things that allow me to probe a little bit further and make people comfortable talking about whatever may have happened. Or maybe it's that, you know, maybe there hasn’t been a particular loss issue in the past, but maybe there are some worries about the future or there are difficulties with this pregnancy to know the outcome has been positive and so it gives us an opportunity to be preventative in that sense.
Jonathan Singer: You know and I just thought about this but even if you know, somebody had grown up in a household where there had been a pregnancy loss and that that affected their growing up. I mean, I'm actually thinking about the classic McGoldrick family therapy video where in the family that is portrayed there was a baby that died and the dad in this family was named after that baby.
Sarah Kye Price: Yes. I know that very video. I use that with my students.
Jonathan Singer: [Laughter] Yes.
Sarah Kye Price: And they always get to the “Oh,” but you know this really and particularly now we're talking about generational things as well, right. So, we're a little bit more comfortable now talking about pregnancy in general as well as losses, but a generation ago, very, very different and that wouldn’t have been an unusual situation especially in many cultural contexts. So there are legacies around these loss experiences that happen.
I remember, you know, I have a personal anecdote: my mother-in-law at my father-in-law’s funeral. And there's a big family, big, big, big family and they all, you know, get along fairly well. But [00:50:00] my mother-in-law sat down next to me and began to tell about the one baby that she had that died, and you know [laughing], and they were all laughing because everyone knows what I do for a living and they're like: “It was written on you!” It was not anything that their family talked about, but she just felt compelled to tell me the story and even then she was telling me how that changed her in the way she parented her next child and I thought how very interesting.
I mean that was sort of an interesting moment of disclosure and a personal situation, but I think allowing and facilitating that conversation without a label. And so some of the classic literature talks about things like “the replacement child” and I really try to avoid that because it really, it minimizes. It's too uni-dimensional, the experience. But of course, it's going to affect the way we parent. Any experience affects the way we parent. People parented differently after September 11, 2001 than they did before and it's not, you know, we need to not make it some big psychodynamic painful thing, but to realize that our expectations change, influences, how we're going to parent that next child or even think about if there will be a next child.
I've had any number of clients who have had multiple fetal deaths who have said to me: “I'm just not putting myself through this again. I'm not. We made a decision. We’re not going this route any further.” And in practice I've had to say: “I completely respect your decision, but what I want to do here is talk about what that will mean for you. So that you can put some good parameters around the places that you might feel good about that decision or the ways that that decision might be challenging in the future” and so we can help them develop their coping around it. A lot of it is just being plan-ful and communicative and not harboring kind of the unresolved issues that may emerge.
Jonathan Singer: Well, Sarah this has been amazing. Thank you for the stories and for talking about perinatal loss in multiple different areas that social workers would need to know about. For listeners who want to know more, are there other resources that you would recommend that folks should check out if they want to learn more about perinatal loss?
Sarah Kye Price: Absolutely. I would say – I'm going to put a plug in for the organization that I've been the president of and now I’m the past president of, which is the “Pregnancy Loss and Infant Death Alliance” and we're an international member organization, so we're not direct grief support providers, but what we do is we support the work of those who support grieving families and so we're a member organization. You can find us on the web. We post a lot of public education materials.
Also if you become a member, if people would choose to do that, there's a lot more opportunities for educational web conferences and webcasts, for people who are more interested in being a part of that. But even for the general professional public, we offer guidelines for practice, for hospital personnel as well as for people in the community. We offer an extensive reading list of articles and books and links to other websites and information, so you know I'm going to give you a number of different websites to look at for other organizations as well, too.
I think there's a lot of information that’s there, you know, the world wide web is a big place and so there's some sites I would recommend more than others. And I think one of the things that is great for us to know as social workers is that there are people who experience their grief in many different ways and we can learn from all of these experiences. I would encourage everyone to be open to the possibility of talking with their clients, to leave the door open, even if you're not in a setting where you can ask a question or you can go into the depth of an intense history, make sure that when you're working with clients who are in their reproductive years or have been through their reproductive years, which is a whole lot of clients, that you keep that door open and allow them to talk about their experiences of birth as well as of loss.
Jonathan Singer: Well, I hope that folks feel more comfortable keeping that door open after listening to this conversation, so thank you so much.
Sarah Kye Price: Thank you.
[End of Audio]
Transcription generously donated by Kelsi Macklin.
- Price, S.K., & McLeod, D.A. (2012).Definitional distinctions in response to perinatal loss and fertility barriers. Illness, Crisis, & Loss, 20(3), 255-273.
- Price, S.K. & Handrick, S.L. (2009). A culturally relevant and responsive approach to screening for perinatal depression. Research on Social Work Practice, 19, 705-714. doi: 10.1177/1049731508329401
- Price, S.K. & Proctor, E.K. (2009). A rural perspective on perinatal depression: Prevalence, correlates, and implications for community service enhancement. Journal of Rural Health, 25(2), 158-166.
- Price, S.K. (2008). Women and reproductive loss: Client-worker dialogues designed to break the silence. Social Work, 53(4), 367-376.
- Price, S.K. (2008). Stepping back to gain perspective: Pregnancy loss history, depression, and parenting capacity in the Early Childhood Longitudinal Study, Birth Cohort (ECLS-B). Death Studies, 32(2), 97-122.
- Price, S.K. (2007). Social work, siblings, and SIDS: Conceptual and case-based guidance for family system intervention. Journal of Social Work in End-of-life & Palliative Care, 3(3), 81-101.
- Price, S.K. (2006). Prevalence and correlates of pregnancy loss history in a national sample of children and families. Maternal and Child Health Journal 10, 489-500.
- Price, S.K. (2002). An alternative view on mothers holding stillborn babies. Medscape Women's Health 7(4), 10.
- Doka, K. (2002). Disenfranchised grief: New directions, challenges, and strategies for practice. Champaign, IL: Research Press.
- Layne, L.L. (2003). Motherhood lost: A feminist account of pregnancy loss in America. New York: Routledge
- Seftel, L. (2006). Grief unseen: Healing pregnancy loss through the arts. London: Jessica Kingsley Publishers
ResourcesPregnancy Loss and Infant Death Alliance (PLIDA): www.PLIDA.org
- PLIDA is an international member organization of perinatal bereavement providers including nurses, social workers, chaplains, physicians, public health providers and health advocates who work directly with families experiencing perinatal and infant death. PLIDA’s mission is to support the work of those whose work supports grieving families through promoting provider education, community awareness, and networking support providers with each other.
- The MISS Foundation is active in both support and advocacy for families experiencing the death of a child at any time, including deaths occurring during pregnancy or childbirth. The founder and Executive Director of the MISS Foundation, Joanne Cacciatore, is also a social work faculty member at Arizona State University and has dedicated her career to support and advocacy, including leading the national MISSing Angels bill initiatve.
- SHARE is a hospital and community based support program with chapters throughout the United States. SHARE’s work creates meaningful connections between the health system and ongoing community-based peer support. They also offer an extensive, moderated online support group for families affected by perinatal loss.
- Bereavement services has worked to create a comprehensive training curriculum emphasizing relationship-based care of families impacted by perinatal loss and infant death. They offer nation-wide training for those who wish to provide bereavement support and/or group facilitation at both basic and advanced levels as well as train-the-trainer and professional certification in bereavement support.
- Named after the Greek goddess of health and wellness, the Hygeia Foundation offers a wide range of support related to reproductive health and loss issues from ectopic and molar pregnancy, to complex diseases impacting neonatal health. In addition to bereavement support, the foundation works with low-income families to provide burial assistance.
- This collection of art produced by over 30 individuals impacted by perinatal loss travels in national exhibitions, telling the stories of life impacted by a pregnancy loss or infant death. The website features many of the works of art in the collection; the exhibit can travel to communities around the country. Instructions for submitting art to the Secret Club Project are also available on the website.
APA (6th ed) citation for this podcast:
Singer, J. B. (Host). (2013, April 18). Perinatal loss: Interview with Sarah Kye Price, Ph.D. [Episode 79]. Social Work Podcast. Podcast retrieved Month Day, Year, from http://www.socialworkpodcast.com/2013/04/perinatal-loss-interview-with-sarah-kye.html