Elisabeth Joy LaMotte:
From the National Association of Social Workers, this is Social Work Talks, and I'm your host, Elizabeth LaMotte. Today, I am delighted to welcome Dr. Allison Werner-Lin to our conversation.
Allison Werner-Lin:
Thank you.
Elisabeth Joy LaMotte:
Dr. Werner-Lin is a professor at the University of Pennsylvania School of Social Policy and Practice, also known as SP2, and formerly known as Penn School of Social Work. Dr. Werner-Lin researches the intersection of genomic discovery and family life. Her work is among the first to deeply study the impact on men and women of childbearing age who carry a genetic mutation that conveys an elevated risk for cancer. She has also served as an investigator on multiple interdisciplinary NIH-funded grants, and she is an investigator on the Beau Biden Cancer Moonshot Project, which collaborates with the hospitals at the University of Pennsylvania, studying barriers to genetic testing among pediatric cancer survivors.
I have been so looking forward to the chance to talk about family life and genetics and what social workers need to know. Dr. Werner-Lin, welcome to Social Work Talks.
Allison Werner-Lin:
Thank you so much for having me, Elizabeth. It's a pleasure to be here with you today.
Elisabeth Joy LaMotte:
Well, it's a pleasure to have you. I thought we would start out just talking about how you found yourself in this area of research.
Allison Werner-Lin:
Yeah, it's a great question, and it's actually a very common question. I often find myself, as a social work faculty member, a clinician in this space, I'm often the only social worker in the room with folks who focus on the study of genetics and understanding genetics and genomics. The other way too, when I'm in rooms of social workers, I'm often the only one who has a foot in the genetics space. I kind of bridge this divide, and we can talk about that later. I get this question a lot because of that two feet in either experience that I have.
I grew up in a family affected by cancer. It was all over my family. When I started school and started learning about families and learned how to construct genograms, I saw really how much cancer there was in my family and how I felt like I was at the bottom of a funnel looking up at risk all over the place. It shaped the way I thought about my life. When I was finishing my senior year in college, my mother was diagnosed with colon cancer, stage III colon cancer, and had a grapefruit-sized tumor removed from her abdomen. At that time, her oncologist recommended that she get genetic testing and she was found to have a BRCA1 mutation.
I decided at that point not to get testing yet. I was dating my now husband and we talked a lot about how I wanted to, and how we wanted to together, approach childbearing. The real catalyst for me professionally came when I went to a networking session that my mother's genetic counselor was hosting with a number of her patients. We went around the table and everyone introduced themselves, said what their genetic mutation was, what their cancer history was, what brought them to the table.
Elisabeth Joy LaMotte:
Wow.
Allison Werner-Lin:
I said, "I'm here with my mom. I haven't gotten tested yet. I plan on having my children and then getting tested." I had this little spiel that I'd worked out with my 19-year-old self. As I finished, a woman across the table whose mother had died when she was young and who had had prophylactic mastectomy, she'd had healthy breast tissue removed to prevent breast cancer, she said to me, "I can tell you don't have it."
Elisabeth Joy LaMotte:
What?
Allison Werner-Lin:
I thought, "That's great, fantastic. I don't have to get genetic testing. You can tell I don't have it." I was wondering what it was. I spent the whole ride home with my mom talking about what it was that signaled to her, behaviorally, verbally, non-verbally, that I would be healthy. I think it was my dumb confidence, for lack of a better phrase. I was 19, I felt mortal and immortal in this very tangible way. That led me to think about how women who were my age, who had mothers who were sick or had grandmothers or fathers or sisters, aunts, cousins, how they manage this phase of the life cycle where they were thinking about setting up families.
A couple of weeks after this networking experience that I was at with my mother, I went to my mother's oncologist with her, not for me, but with her, and her oncologist said, "How old are you?" Actually, it was a couple of years later because I was in my early 20s. I said, "I'm 23." She said, "Have you got a boyfriend?" I was like, "Heteronormative much? But yes, I do." She said, "Good. Get going, I'm going to need your ovaries in a couple of years."
Elisabeth Joy LaMotte:
Wow.
Allison Werner-Lin:
I found myself making these decisions about how my life would unfold in my 20s and into my 30s.
Elisabeth Joy LaMotte:
Would you say that the timing of discovery was a part of what led you into that moment more than you could have even anticipated?
Allison Werner-Lin:
Very much. There were multiple timeframes going on simultaneously. One was that the Human Genome Project was just concluding, or was ramping up.
Elisabeth Joy LaMotte:
That was 2003?
Allison Werner-Lin:
That was 2003, this was a couple of years before that. The race between the government's efforts and industry was hot, it was hot and heavy. That was one timeline that was happening. The second was that my mother was in recovery from cancer, so that timeline and thinking about what decisions she was going to make was happening. Then the third timeline was my own development into adulthood, my growth from adolescence into young adulthood, and thinking about partnering in family planning and career and how all of those facets of my life could potentially unfold and what the constraints might be.
Elisabeth Joy LaMotte:
Do you think that any of this is what led you to the social work field, not just to this area, but to the field itself?
Allison Werner-Lin:
Absolutely. I initially was interested, I was a psychology major and a family studies double major as an undergraduate. I was looking at psychology and I took a couple of courses at the graduate level. I was frustrated because of the focus on the individual in the absence, almost a vacuum, of those social aspects of relationship, of society, of development. My mom, again, said, "Take a couple social work classes." In the same building on another floor, Monica McGoldrick was teaching a family therapy course, and so I took it and I was blown away. I also took a grief and loss course. The two of those together really informed my move into social work.
Elisabeth Joy LaMotte:
Wow. From the beginning of your social work journey, you were focused on this area.
Allison Werner-Lin:
A hundred percent, a hundred percent. I came into psychology thinking I wanted to study family caregiving and didn't fully mature that into understanding genetics and family inheritance and multi-generational patterns until after those courses in social work and my mother's illness.
Elisabeth Joy LaMotte:
We're going to be discussing a lot of your various articles, but if we begin zooming back, what would you most want our listeners, many of whom are social workers, and our viewers to take from today's conversation?
Allison Werner-Lin:
Sure, yes. That's such an important question. My very first piece of work was like much research is when folks move into that space, me search, I wanted to find answers to my own questions. I find this drives so many of folks who come into the profession and then in what they practice and develop expertise in clinically. If folks decide to move into research, it drives a lot of that too. I wanted to know how to make decisions in young adulthood, and so that's what I studied.
The first paper I published, which is one that I look back on and think, gosh, it's hard to read because it's early in my career, it's a little painful in that way, like listening to your voice or seeing yourself on video, like we are today, but what was really striking to me about that paper and that work was this idea that young women were reporting that genetic counselors were telling us they had a certain amount of risk, a certain percentage women would develop breast and ovarian cancer over the course of their lives, but the women I was talking to didn't think about their risk in terms of those numbers. They thought about their risk in terms of what they saw in their families and what they saw in their communities.
Out of all the women I interviewed, all but one identified someone in their family who had developed cancer and saw that as the opening of this window of risk for them into which they would be in what they call danger zones, which I wound up titling the paper. Understanding these heuristics, these cognitive shortcuts around what they'd seen in their families, were more potent than the numbers they were getting from their genetic counselors or learning about online.
Elisabeth Joy LaMotte:
Which makes sense, psychologically.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
Of course.
Allison Werner-Lin:
Absolutely. There's a proximal nature. We create meaning out of the things we see that we experience and moving beyond that can be challenging. As a result, and later on I learned in some longitudinal work with similar population, that not only do our family patterns inform how we think about our own risk, it informs the kind of prevention and early detection work we do. Women who had histories of breast cancer in their families were more likely to be regular with mammograms or to think more specifically about how their breasts felt or changes. Women who had ovarian cancer in their family were more concerned about ovarian cancer risk and ensuring that they were doing what they needed to do on that front.
The takeaway, to go back to the question, is what is that heuristic? What are the cognitive shortcuts? How do folks make meaning given their experience and how does that meaning impact action?
Elisabeth Joy LaMotte:
How can social workers be best fluent and informed with this information, would you say?
Allison Werner-Lin:
Yeah. I think one of the reasons why the genetics can seem prohibitive is because it is numbers heavy. At one point I thought about going back for an additional degree in genetic counseling. I would've had to take a year of physics and a year of chemistry and a year of biology, and that was a deal breaker for me. People actually often think that I'm a genetic counselor and I tell them that I'm not. I've developed quite a bit of knowledge around genetics, but not in a way that can be informative for personal medical decision making.
It's important to understand that we don't need to know everything about the genome in order to practice in genomic spaces. We really, really don't. There are folks who do that, and partnering with them gives us the flexibility as social workers to do what we do well. There are so many parts of what we do well as social workers already that can be mapped onto this space. I think this is probably one of my favorite soapboxes to be on as a provider, as a researcher, as a social worker, one thing that we do is we map patterns in families, for example.
Elisabeth Joy LaMotte:
Yes, we do genograms.
Allison Werner-Lin:
We do genograms, exactly.
Elisabeth Joy LaMotte:
We know how to do a genogram.
Allison Werner-Lin:
Exactly. Whereas in a medical setting families would do a pedigree, which is just a mapping of the biological members of a family unit and what illnesses they've had and what the outcomes were, when we add in the social factors, the supportive factors, the caregiving, the dimensions of relationship, when we think about timeline, we see a completely distinct picture. We learn about how families not just are diagnosed with a condition or interact with their genetics and their environments, but how they respond behaviorally, how they respond psychologically to threat, to illness, to responsibility in families. Expectations about how we will proceed or move through the life course are largely dependent on what we see in our home life, in our world growing up. That's not exclusive, but there's definitely influence there. That's one piece that we do already that we can bring to any table.
Elisabeth Joy LaMotte:
As you speak about that one piece, I do think specifically about your 2016 article, titled Leadership, Literacy and Translational Expertise in Genomics: Challenges and Opportunities for Social Work. I definitely want to highlight this article because it is an NASW Press article and it is available in the show notes section of our podcast, so definitely, listeners, check it out.
I'll mention that in the article it says that following the completion of the Human Genome Project in 2003, NASW recognized a need to integrate genetics into social work practice, a task force was developed, standards for competent genetically-informed social work practice was identified. You go on to give, in this article, a very interesting and elegant example of a couple who are contemplating parenthood. I can read more about it or you can tell us about it, but I think it really breaks down what you're describing and how social workers can inform ourselves on this issue and therefore translate it into competent practice.
Allison Werner-Lin:
Yeah. I'm happy to talk through the case, let me preface this by saying that the generation of women that I first conducted research with were in their 20s and 30s, they were really the first generation in their families to get genetic testing without a cancer diagnosis. Older members, other members of their families had been diagnosed, they had not had a cancer diagnosis. In the past, their mothers, their other members of their families, had to make decisions about family planning, family formation, so much of their worlds without genetic information, just with a history, knowledge of their history. That knowledge drives a lot of practice work. The women that I've spoke to now are making decisions with that family legacy information, but also with genetic information. That changes the nature of the playing field.
Elisabeth Joy LaMotte:
Completely.
Allison Werner-Lin:
It changes what we have access to, it changes what options are recommended or not for patients and for our clients. That is where this case study comes from. The names that I use in the text are Valerie and Jacob, a mixed race, heterosexual couple who come in for couples work because they are disagreeing about whether to have children and how to have children, really whether, and their perspectives are quite distinct.
Jacob, who was born to a Jewish mom, genetically Jewish mom, died of cancer when he was six. As a result of having grown up without a mother and understanding the challenges of being parentally bereaved so young, never wanted to have children. He marries Valerie, a woman of African descent, African American, whose sister had sickle cell, which is a very different condition, and I can talk about the distinctions. She always wanted to have children, even if there might be a chance that a child of theirs could become ill, could be born with sickle cell. This case study maps out two different approaches, one more conventional and one that loops in this understanding of genetics into their care.
Elisabeth Joy LaMotte:
Yes.
Allison Werner-Lin:
What would be a good way to go about this?
Elisabeth Joy LaMotte:
Well, there's an impasse in the marriage because he has decided he really doesn't want to have children because of the breast cancer. One thing that's interesting is that she has the sense, or the hunch, that because it's breast cancer and he's a male it's not a factor. She wants to have children. Then there's two scenarios. There's the scenario of the social worker without the genetic background who dives right into the psychology, remembering childhood, family history, all things that we're trained to do, but in scenario two, if you could just describe what's different and how that connects to what we need to know.
Allison Werner-Lin:
Right. Scenario two almost picks up where scenario one lets off. The first question for the clinician to Jacob is, "Was there ever a time in your life, even including now, where you wanted children? If you knew that breast cancer or any kind of cancer wouldn't be in the cards, what do you want? What is essentially what it is you hope for yourself and for your family?" In that way, the clinician puts the idea of abandonment and loss aside and thinks not necessarily about Jacob's history, but about what he wants for his future, theoretically liberating him from a family narrative around what happens when we bring folks together. This is something I've seen over and over with couples that I've worked with clinically myself. The social worker in this scenario also then reviews how genetic conditions emerge in in the cancer context and in the context of sickle cell, and discusses then the chances that a child of this particular couple would become ill.
With that ... Yes, go ahead.
Elisabeth Joy LaMotte:
No, keep going, please.
Allison Werner-Lin:
With that information, or with the start of that information, Jacob and Valerie then can go talk to people who know more about genetics than she does, than he does. We don't have to know very much in this case to integrate about genetics and the way genetic mechanisms work to integrate it into the clinical care.
Elisabeth Joy LaMotte:
Exactly.
Allison Werner-Lin:
We can say things like sickle cell is a recessive condition, which means that if Valerie is not symptomatic, if she does not have sickle cell, she might carry the trait, but Jacob would also have to carry a trait for there to be any chance their child would develop sickle cell. This kind of inheritance pattern, my daughter who's in ninth grade biology is learning about now. These are things that are becoming more and more general knowledge.
On the cancer side, hereditary cancer syndromes are autosomal dominant, which means that if Jacob's mother had a variant, a pathogenic or dangerous illness disease causing variant, Jacob has a 50% chance of inheriting that. If he inherits that variant, he has whatever risk is associated with that. It doesn't matter what his biological father's contributions to his DNA are. Jacob can pass onto a child, 50% chance, it doesn't matter what Valerie's contributions are. But Jacob can get tested to see if he carries a variant or someone else in his family who's had a cancer diagnosis. Then I would refer-
Elisabeth Joy LaMotte:
He might not even know that he can get tested.
Allison Werner-Lin:
He might not even know, right. I hear a lot from families that breast and ovarian cancer, variants associated with breast ovarian cancer, can they be passed down through men? They absolutely can be. Risk for cancer in men is higher than general population, it's not as high as it is for women for this specific condition, for hereditary breast and ovarian cancer, but he can learn more information about his genetic makeup.
Elisabeth Joy LaMotte:
You mentioned this 50/50 question, which I believe is also the situation with Lynch syndrome.
Allison Werner-Lin:
It is.
Elisabeth Joy LaMotte:
Which is one of the areas you've researched, which is such an overwhelming and stressful and, as you know, devastating disease, that when it is in a family, it can be everywhere and you either have it or you don't.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
Some of your research is about how you talk with children who are in a family where a parent has it. Of course then there's the question of when and if and do they get tested because there's a 50/50 chance that they have it.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
Can you define Lynch syndrome and tell us about your very important work in this area?
Allison Werner-Lin:
Yeah, absolutely. Lynch syndrome and hereditary breast ovarian cancer are similar in that they are both caused by pathogenic or dangerous variants, disease-causing variants, that convey high lifetime risk of a short list of cancers. Whereas hereditary breast and ovarian cancer primarily causes breast and ovarian cancer, it's in the title, Lynch syndrome primarily causes colorectal cancers in men and women, there's a high risk of ovarian cancer for women, in addition to another list of cancers with smaller risk over the course of the life cycle. Then there are some more rare variants on this rare condition, which can cause other types of cancer over the life course.
Both conditions, for individuals who have either one, they are recommended to have regular screening starting earlier than the general population with increasing frequency. Instead of having a colonoscopy every five years, you might go every other year or every year depending on age and family history. There's a number of conditions like that that have adult onset risk, so where the expectation is that cancer onset will be after the age of 18 or 21, sometimes later.
I'm also working with families who have Li-Fraumeni syndrome, which is a pediatric onset condition. Cancer risk is extraordinarily elevated from birth. Over half of individuals who have a mutation causing Li-Fraumeni syndrome, half of women will develop their first cancer by the age of 33, half of men will develop their first cancer by the age of 46, but we've worked with families who have children as young as six months and we've worked with families who have had five, six, seven, eight, nine, ten primary cancer diagnoses, so unique discreet diagnoses over the course of their lives.
Elisabeth Joy LaMotte:
How do you frame that, in terms of the question of whether and when to get tested, how social workers can be helpful there and just the impact of that level of uncertainty?
Allison Werner-Lin:
It's so much uncertainty, it's so much uncertainty. There's a lot of effort going into trying to figure out how to manage that uncertainty, looking at risk tolerance, risk aversion. Let me talk about the last question then I'll come back to this one. The last one is, when do we talk to kids and what do we tell them and how much do we tell them, who should tell them, and what resources do we have broadly to share information with children?
Children, starting quite young, can identify human difference. They can look at hair length, eye color, skin color, height, build. Kids notice differences. They say the darnedest things because they have no social protocols around not discussing differences loudly in public.
Elisabeth Joy LaMotte:
Yes, they will. That's why we love them.
Allison Werner-Lin:
It is, it's just so delightful when it's not my own children. Conversations, it's important for kids to have expectations and some structure and trust. Open conversation that's developmentally tailored to the child's understanding, their moral understanding, their cognitive understanding, what they're learning in school, is really important. This is how I trained, I trained in a community agency called Wellness House in the western suburbs of Chicago. I ran support and bereavement groups with my mentor, Nancy Bianc, who is a clinician in the western suburbs too, and with many other folks out there, who were extraordinary in what they did. We supported families going through all phases of the cancer trajectory, not necessarily genetic, but kids are asking questions like that, "This was my mother's history, will this be mine? Will this be my future?"
The stories that stick with me, when I was doing my dissertation, during the day I was talking to young women who'd had mothers develop breast cancer when they were young, they watched it happen, it was shaping their lives, and in the evenings I was running support groups with kids who were in it. I had a 14-year-old girl in a group whose father was very stuck in his grief, very paralyzed. Two years after mom's death, he was having trouble cleaning out even the most mundane of parts of her life in the house.
She came in one day, this girl came in one day, ninth grade, 14, she's the age that my daughter is now actually, and said, "We started cleaning mom's stuff out." She was excited, she wanted movement on this. We always talk to kids, "What do you want to keep of your parents? What part of their legacy, their interests?" She said, "I went through her books," which we think is fantastic because that's about interests and engagement and what lit her up. We said, "That's wonderful. What books did you keep?" She said, "I kept the breast cancer books because I'm going to need them someday."
Elisabeth Joy LaMotte:
Oh my gosh.
Allison Werner-Lin:
In that moment, I started to understand that kids see their life stories in really profound ways, really early on. I see that all over, I saw that all over my practice when I was practicing clinically. One of the things that I do with parents, that I've talked about with parents in that work, is to help them develop language, scripts, around how to talk to kids, how to answer questions, what some of the common questions are.
Elisabeth Joy LaMotte:
Your research spells out the language in preschool versus elementary school versus middle school versus high school. It's extraordinary, because of course it's different, and you've studied this.
Allison Werner-Lin:
I'm hoping to study it. The paper that you're talking about was from my clinical work largely. This was from years, a decade and a half or more even, of working with families who are in this situation who are asking these questions, and of genetic counselors and other providers who needed a resource, who were asking for a resource to help them support parents as they were going through this process.
It's one of the pieces that I like the most because I think it has great translational value, because we did, we mapped out language. I worked with genetic counselors on this, Shana Merrill, who's a doctoral student with me at Penn and a genetic counselor, and Amanda Brandt, who's also a genetic counselor, she was at Penn and now she's at Yale Cancer Center. We mapped out scripts, we mapped out hypothetical scenarios that are based on what we see every day in our practice, and we identified ways that parents can prepare for these conversations.
One of the tips that we suggest is that parents get their heads around their own risk before they sit down to talk to kids, so that they can be present for their children's reactions to the news as opposed to attending primarily to their own emotional experience in the moment. It's going to be challenging enough to talk to your own child, about the risk that they might develop an illness, a serious illness, later in life. To be able to listen closely to children, we found that it's important for parents to understand where they are with respect to what their decisions are going to be around risk management, how they understand their diagnosis, things like that.
Elisabeth Joy LaMotte:
Do you find that sometimes doctors or medical professionals are more aggressive about the question of getting the kids tested, getting the information, and not as attuned to what you're talking about? If so, can you speak to where social workers can work to thread that needle?
Allison Werner-Lin:
Yeah. Doctors want to keep folks healthy, end of the day. If there is something that they can do or suggest or prescribe to keep patients from suffering, they want to do that. Genetic testing for one of these hereditary cancer risk syndromes is a doorway into the world of prevention. There's often, I don't want to say pressure because every physician practices as distinctively as every social worker practices, but that said, there is value of having more information. One of the things we hear a lot from all constituents in the genetic space is that knowledge is power. Well, power for what?
Elisabeth Joy LaMotte:
Exactly.
Allison Werner-Lin:
Power for what? Power to be able to prevent a disease? To catch it early? To enable longevity? To know more about what we're coping with? There's a tremendous amount of uncertainty at every point along the road in this space. This, I think, is one of the places where social work really has a potent role, because that uncertainty management can't be addressed with an MRI or a mammogram. One of my postdoctoral fellows is working on a study of experience of anxiety moving in and out of scans, it's called scanxiety, so really well named. That was coined, I think it was the New York Times many years ago. Sorry, Time Magazine.
That experience of distress, we know that it peaks around scans and then it gets a little better, but the uncertainty not just about one's self, but about one's loved ones, and not even just the loved ones who have the shared condition, but the ones who don't and will act as caregivers or who will be bereaved at some point.
Elisabeth Joy LaMotte:
Right, because it affects them, of course, deeply and in other levels in other ways. It's distinct.
Allison Werner-Lin:
Yes, absolutely. It's heartbreaking. We've had parents who have said things like, "I'm going to bury my wife and my two children in the next two years. I'm going to be alone." It's horrific to think about the grief. It becomes a really pervasive, indistinguishable part of risk.
Elisabeth Joy LaMotte:
You use the term anticipatory loss and also the term ambiguous loss.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
Anticipatory, I won't define it as well as you, but in what you expect is to come and the loss associated with that, and ambiguous loss as well. As you're speaking, I'm thinking about your 2019 article, Actions and Uncertainty: How Prenatally Diagnosed Variants of Uncertain Significance Become Actionable, and herein is ambiguous loss as well. Let's talk a bit about this topic because it's interesting. I'll just add, I think this one can be relatable to those of us who've ever had a sonogram.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
Even if you're fortunate enough that you don't carry one of these genes or have someone close to you who does, there's this explosion of knowledge related to sonograms, which we didn't used to have.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
I'll stop there because you have so much to say on this.
Allison Werner-Lin:
Yeah. This is an entirely different stream, overlapping but distinct stream, of my work that looks at prenatal testing around a variety of different conditions. One of the challenges of this particular space of working with uncertainty and ambiguity is that technology is being rolled out into clinical care before we really understand what the implications are. This means we are playing catch up in mental health. It's challenging, because we don't necessarily know what the downstream consequences are going to be of medical decisions for years and years.
This particular study, it was with heterosexual couples, just because we hadn't managed to recruit any couples that were not heterosexual, where sophisticated genetic testing during the pregnancy revealed either a variant that would lead to some disease, was disease causing, or that could, it might be nothing but it might be everything, and returned those findings to parents during the pregnancy.
We interviewed men and women separately, and then six to 12 months after the babies were born, we went back and talked to the moms again to see how they were adapting and really to understand if their expectation about their reactions would be how they were parenting, would be reflected in the ways that they were parenting. For some they were, but for some they very much were not.
Now, these conditions that the specific study was focused on were largely intellectual disability and other conditions like that that might present once a child reached school. In infancy-
Elisabeth Joy LaMotte:
That might present.
Allison Werner-Lin:
Might.
Elisabeth Joy LaMotte:
Maybe.
Allison Werner-Lin:
Big, big, big, underlined, italics, bright red arrows pointed at the word might.
Yet, for only a few of the parents did they see evidence of any kind of congenital anomaly, any kind of difference at the time of birth, only a few. I think it was four in the sample of 30 something families. The majority were watching their children like hawks though, of parents, waiting to see if and how and when a condition might present. Some parents were engaging in really intensive screening, evaluations with specialists, early intervention, when the child showed no signs of needing additional support other than the love and care of a supportive home.
Elisabeth Joy LaMotte:
So therein lies the ambiguous loss.
Allison Werner-Lin:
Completely.
Elisabeth Joy LaMotte:
There's the loss of what it means to embrace the experience of pregnancy and having a baby-
Allison Werner-Lin:
Yes, yes.
Elisabeth Joy LaMotte:
... that gets completely turned upside down by this, a big maybe.
Allison Werner-Lin:
Absolutely.
Elisabeth Joy LaMotte:
In your article you make a very clear call for informed consent about the possibility of an uncertain result, which I do think is a place where social workers can be a strong voice.
Allison Werner-Lin:
Yeah. We are, as a species, really bad at predicting how we're going to react to things, we're really bad at this, and, as a species, we don't like uncertainty.
Elisabeth Joy LaMotte:
No we don't.
Allison Werner-Lin:
We like to understand. We don't like uncertainty. There may be a number of factors that contribute to our ability to tolerate uncertainty, but the genetic counsel I worked with on this project talked about the toxicity of the information for the pregnancy, how knowing that a child could potentially have something wrong with them, a disease or a condition or something, he information became toxic. Pregnant parents were staying emotionally distant from the pregnancy, they were engaging differently, they were planning intellectually or using a variety of different coping mechanisms to protect themselves, not just against the loss of the idealized pregnancy, but of an idealized parenting experience. They were sad for their future child, but they were also sad for themselves because the things that they hoped for with their family, for their parenting, might not come to fruition, but again, with no degree of certainty around the information.
Elisabeth Joy LaMotte:
Because everything could be fine and then you've gone through all of this.
Allison Werner-Lin:
Everything could be fine.
Elisabeth Joy LaMotte:
Because knowledge is power, but power for what?
Allison Werner-Lin:
Power for what? Part of this space, we talked a lot with the families in this study and since then about distinguishing between important decisions and urgent decisions. This is another place where social workers can really be critical in tolerating the uncertainty and the intensity of feelings around parenting and around the kind of parent presence we want to be for our children, and the idea that important decisions are mission-critical across the life course, but not with a pressing timeline.
Thinking about evaluations, thinking about seeking out additional information, some of those may be pressing. In this study, the urgency was around considering abortion, which access to has been challenged right now on the national stage, but the idea that they only had a couple of weeks or a couple of days to make decisions around pregnancy termination but without information about what their child's life might involve in the long run. That's an urgent decision because there were legal parameters. Urgent decisions, we see it in the cancer space where young women who were diagnosed with breast cancer, for example, might be recommended to have not just a lumpectomy, but a prophylactic mastectomy on the contralateral side, on the other side, if they're found to have a disease-causing variant. That's an urgent need.
Important in the long run, when children are living in families with adult onset conditions, they don't need that information in childhood. Families are increasingly getting that information, but it is important, not urgent. As they get older and reach ages where risk is believed to begin, there's a shift from important to urgent, but those kinds of decisions are ones that social workers can help families map out.
Elisabeth Joy LaMotte:
Exactly. As you describe this, and in the interest of time, because I feel like I could dive into everything for a very long time, but I do have a few more questions I want to make sure we get to, you have an article that is titled Growing Up With Grief: Revisiting the Death of a Parent Over the Life Course. In this article, there's a case study of a young man with the identification of the name Matthew, which obviously is not his name. His trajectory, in a sense, is flipped from the ninth grader you spoke of before, because his father and his brother grieve the death of his mother much more quickly than he.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
He is the one who is more like the mother.
Allison Werner-Lin:
Yes.
Elisabeth Joy LaMotte:
This is a very social worker-focused, private practice-focused article. Can you tell us a bit about this?
Allison Werner-Lin:
Sure. This family was one we came across in our care at Wellness House. It's a community organization that supported families affected by cancer. In that work, this is work that actually shaped my own practice, when I had a practice, which was really family-centered. We had the boy who the paper was about in one group, we had the teenage sibling in another, we had parents in another group. Together, our team held the entire family, we got all the stories. We knew mom before she died, we were at the funeral. We continued to work with the family for quite a while after.
One of the links between Matt's story and what I've been talking about is this idea of family scripts, how families emerge and identify, versus individual scripts and what happens in families when the person you most identify with disappears. Now, this speaks to the need for developmentally-appropriate language to describe medical procedures. It's a little different with Matthew, the turning point for him, his mom died when he was in middle school, he knew she had a DNR and he thought she had left him. It wasn't until he was much older that he realized that a do not resuscitate order was protective of him and his family, so that her death, which she knew was inevitable, would not be drawn out.
What happened when he grew up and he was thinking about partnering and family planning, he was really worried that he would get married, and if he married and had a child, that he would die leading that child parentless the same way he had been parentless. That became such a critical part of his identity. When he kept coming back for that touchpoint, and this is definitely a private practice piece where you have a practice and kids can keep coming back because we hold their histories-
Elisabeth Joy LaMotte:
And their processing of the grief transforms and evolves over time and [inaudible 00:45:45].
Allison Werner-Lin:
So much.
Elisabeth Joy LaMotte:
Yes.
Allison Werner-Lin:
So much. We knew his mom, and she shared with us before her death what she wanted for him and what her fears were of him. At 10, you can't articulate that well to a child, but at 20, the conversation is different and what we know is so different and what he can tolerate and understand and reflect on becomes so different. It took him quite a while to consider really partnering for life, consider marriage, because he wasn't just concerned about dying for a child, but dying for a partner and leaving a partner bereaved like he had seen his father. Yeah.
Elisabeth Joy LaMotte:
So you did used to have a private practice.
Allison Werner-Lin:
I did.
Elisabeth Joy LaMotte:
I come to this conversation because I am on the Private Practice Committee of the Private Practice Specialty Practice section of NASW, which I invite listeners and viewers to join any of our Specialty Practice section, we would love to have you. Could you say just a bit more about how your research shaped your private practice when you were practicing, and what you might share in terms of how that can inform things for our listeners?
Allison Werner-Lin:
Yeah. One of the most critical conversations between my practice world and my research world, and my teaching too, is around meaning making, around understanding how what we see in our lives gets translated into understandings of ourself in the broader world. The ideas around meaning making often shape our understanding of what our degrees of freedom are, where we have choice and where we are potentially feel backed into a corner.
Part of what I would do in my practice with either bereavement, which was the primary thrust of the work that I did, children and teens who had lost a parent, who had a parent die, but also in medical decision making and coping with genetic disease, was around increasing self-efficacy, identifying places where there were choices to be made. Going back to the original case of Valerie and Jacob, they could gather information, and part of what we did was refer them to reputable sources online and with colleagues practicing medically, but another part of it was identifying the different ways that couples move towards parenthood, from conventional conception with no intervention to adoption and a range of different ways to become parents.
Elisabeth Joy LaMotte:
This must lead you to experience it on a deeper level despite all of the adversity and trauma and tragedy as you're going through it, which then informs the practice, the social worker's role.
Allison Werner-Lin:
Very, very much. I practice very much psycho-educationally, it's my favorite model, and that I pair with family systems work, both multi-generational family systems, but also I work with structural family therapy in the sense that when a parent dies the structure of family life needs to modify, with an eye towards protecting children to stay on track developmentally. Those are my models. The education piece comes naturally to me as a classroom teacher, as a college instructor. A lot of what I focus on is not just education for me, but how to seek out education and then how to wade through information to make decisions.
Elisabeth Joy LaMotte:
What are you working on now?
Allison Werner-Lin:
What I'm working on now, well, I will say that like so much of the practice work we do, it's heavy, working with grief on a regular basis, especially for families with children who are young, couples who are planning years and years together and then don't have them, so just to say a word about self-care. My husband knows that when I was practicing, I would come home and I would hug him and I would say, "I love you, please don't die." That was part of our ritual, and he knew. At first, he was like, "What's happening? What do you know about me that I don't know?" I would say, "Nothing," and he would say, "I promise." Now, we both know that those are promises we can't keep to each other, but in that moment it's what I needed.
Elisabeth Joy LaMotte:
You needed to say it, yeah.
Allison Werner-Lin:
Yeah, I needed it to transition back to my home life from my work life. What I'm working on now is, I described Li-Fraumeni syndrome earlier, I'm on the faculty at Penn, I work with a team at the National Cancer Institute that studies Li-Fraumeni syndrome. We are planning our third wave of data collection with adolescents and young adults, which is actually an understudied population and quite a vulnerable population in the oncology world. That piece is in place.
I'm also starting a partnership at the Children's Hospital of Philadelphia, CHOP, with their Cancer Predisposition Clinic for children, and thinking about interventions based on the article that you were talking about around talking with children around genetics, for parents to talk to children and interventions to support communication between parents and young children when children are growing up with cancer risk. I'm hoping that that intervention work will start up soon and will change the ways and develop more tools to support parents and children, families, family life in this brave new world.
Elisabeth Joy LaMotte:
Wow, yes. Dr. Werner-Lin, thank you so much for the work that you do and for taking time to join us today. I'm so glad that your mother suggested that you take some social work classes.
Allison Werner-Lin:
She is too.
Elisabeth Joy LaMotte:
Yay, mom.
Allison Werner-Lin:
She's a social worker, she is a social worker.
Elisabeth Joy LaMotte:
So is my mom, my mom's a social worker too.
Allison Werner-Lin:
Yeah, she joked, she said, "Thank goodness I had cancer, you wouldn't have had a career." I told her that I would've figured something else out and it would've been just fine.
Elisabeth Joy LaMotte:
Well, thank you for joining us today at Social Work Talks. Again, the NASW Press article authored by Dr. Werner-Lin is available in our show notes section. Have a good weekend.
Allison Werner-Lin:
Thank you so much.
Elisabeth Joy LaMotte:
Take care.
Allison Werner-Lin:
Bye-bye.
Elisabeth Joy LaMotte:
Bye.