NASW Social Work Talks - EP99: Genetics and Family Life: What Social Workers Need to Know

Episode Date: March 14, 2023

We speak with Dr. Allison Werner-Lin about genetics and family life. Dr. Werner-Lin is Associate Professor at the School of Social Policy and Practice at the University of Pennsylvania. Her research addresses the intersection of genomic discovery and family life. Her work is among the first to explore the psychosocial challenges unique to women and men of reproductive age who carry a genetic mutation that confers elevated risk of cancer. Dr. Werner-Lin has held multiple training grants to build and evaluate interdisciplinary educational programs in oncology, genome-based health literacy, and health care social work practice. Our host for this discussion is Elisabeth Joy LaMotte, LICSW. See the show notes for related resources.

From the National Association of Social Workers, this is Social Work Talks, and I'm your host, Elizabeth Lamott. And today I am delighted to welcome Dr. Allison Werner-Linn to our conversation. Dr. Werner Lynn 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. And Dr. Werner Lynn 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. So Dr. Werner-Linn, welcome to Social Work Talks. Thank you so much for having me, Elizabeth. It's a pleasure to be here with you today. Well, it's a pleasure to have you. And I thought we would start out just talking about how you found yourself in this area of research.

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 um and uh and the other way too when i'm in rooms of social workers i'm often the only one who has a foot in the genetic space so i kind of bridge these bridge this divide and we can talk about that later um but so i get this question a lot because of that uh one foot in either two foot two feet in either kind of experience that I have. So I grew up in a family affected by cancer. It was all over my family. And 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. And it shaped the way I thought about my life. Um, when I was, uh, finishing my, um, senior year in college, my mother was diagnosed with, um, colon cancer, stage three colon cancer, and had a grapefruit sized tumor removed from her abdomen. Um, and at that time, uh, her oncologist recommended that she get genetic testing and she was found to have a BRCA1 mutation. Um, 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. And 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. And we went around a table and everyone introduced themselves, said what their genetic mutation was what their cancer history was what brought them to the table and I said you know I'm here with my mom I haven't gotten tested yet I plan on having my children and I'm getting tested and I had this little spiel that I'd worked out with my 19 year old self and 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. And I thought that's great. Fantastic. I don't have to get genetic testing.

You can tell I don't have it. Um, but, um, and 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. Um, and I think it was my kind of dumb confidence for lack of a better phrase, I was 19. I felt mortal and immortal in this very kind of tangible way. And that led me to think about how women who were my age, who had mothers who were sick, or had had grandmothers or fathers or sisters, aunts, cousins, how they managed this phase of the life cycle where they were thinking about setting up families where 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. And I said, you know, I'm 23. She said, you got a boyfriend? Heteronormative much? But yes, I do. And she said, good, get going. I'm going to need your ovaries in a couple of years. Wow. And so I found myself making these decisions about how my life would unfold in my 20s and into my 30s. And 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? Very much. So there were kind of multiple timeframes going on simultaneously. One was that the Human Genome Project was just concluding or was like ramping up.

So that was 2003? That was 2003. This was a couple of years before that. So kind of the race between, you know, public, the government's efforts and industry was hot. It was hot and heavy. So 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. And then the third timeline was my own development into adulthood, my growth from adolescence into young adulthood and thinking about partnering and family planning and career and how all of those facets of my life could potentially unfold and what the constraints might be. 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? Absolutely. So 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, the graduate level, and 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. you know, that, and my mom, again, said, take a couple social work classes. And in the same building on the another floor, Monica McGoldrick was teaching a family therapy course. And so I took it, and I was blown away. And I also took a grief and loss course. And the two of those

together, really informed my move into social work. And so from the beginning of your social work, journey, you were focused on this area. 100%. I 100%. I, I knew this is what I came into psychology thinking I wanted to study family caregiving, and didn't fully kind of mature that into understanding genetics and family inheritance and multi generational patterns until after those courses in social work and my mother's illness. And 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? That's such an important question.

I, my very first piece of work was like much research is when folks move into that space, me search. I wanted to find the answers to my own questions. I find this drive so many of folks who come into the profession and then in what they practice and develop expertise and clinically. And if folks decide to move into research, it drives a lot of that too. So 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.

You know, it was it's very it's a little painful in that way, like listening to your voice or seeing yourself on video like we are today. Um, but what was really striking to me about that, that paper and that work was this idea that, um, young women were reporting that genetic counselors were telling us they had a certain amount of risk, you know, a certain percentage, uh, women would develop breast and ovarian cancer over the course of their lives. 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 on their communities. And so I could, 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 a date with what they call danger zones, which I want to titling the paper. And this 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. Which makes sense psychologically. Yes. Of course. Absolutely. There's a proximal nature. You're closer to, you know, we create meaning out of the things we see that we experience and moving beyond that can be challenging. And 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. So 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. And 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. So 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? And how can social workers be best fluent and informed with this information, would you say? yeah so I think one of the reasons why there are that genetics can seem prohibitive is because it is numbers heavy right um and I at one point I thought about going back for an additional degree in genetic counseling and I would have 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 um 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 medical decision making, personal medical decision making. So 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 and there are so many parts of what we do well as social workers already that can be mapped onto this space and i think this is one of the um this is probably one of my 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 yes we we we do genogram exactly exactly and so 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, 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 and families so that is one thing that we and expectations about how we um 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 um so and that's not exclusive but there's definitely influence there So that's one piece that we do already that we can bring to any table.

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. And 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. And 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. And 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. Yeah, let me preface this, and 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. So 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. And that just with with a history, knowledge of their history, that knowledge drives a lot of practice work. The women that I spoke to now are making decisions with that family legacy information, but also with genetic information.

And that changes the nature of the playing field. It changes what we have access to. It changes what options are recommended or not for for patients and for our clients. So that is where this case study comes from. So it is a case of 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. And as a result of having grown up without a mother and understanding the challenges of being a parentally bereaved so young, never wanted to have children. Right. He marries Valerie, a woman of African, African descent, African American, whose sister had sickle cell, which is a very different condition.

And I can talk about kind of the distinctions. And she always wanted to have children, even if there might be a chance that a child of theirs could could become ill, could be born with sickle cell. And so this case study maps out kind of two different approaches, one more conventional and one that loops in this kind of understanding of genetics into their care. Yes. How would you like to go? What would be a good way to go about this? There is an impasse in the marriage because he has decided he really doesn't want to have children because of the breast cancer. And 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. And she wants to have children.

And 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. Right. So scenario two almost picks up where scenario one lets off. So 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 for yourself and for your family? um so 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 um a family narrative around what happens when we bring folks together and this is something i've seen over and over with couples that i've worked with clinically myself the social worker in this this scenario also then reviews how genetic conditions emerge in cancer

and in the cancer context and in the context of sickle cell and discusses then the chances that a child of this particular couple um would become ill um with that yes go ahead no keep going please 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 right so 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 we can say things like sickle cell is a recessive condition which means that if valerie is not symptomatic if she does not have single 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. And this kind of inheritance patterns, my daughter who's in ninth grade biology is learning about now. So 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 very a variant a pathogenic or or dangerous illness disease causing variant um jacob has a 50 chance of inheriting that if he inherits that variant he has um whatever risk is associated with that and it doesn't matter what his father's his biological father's contributions to his dna are jacob can pass it on to a child a 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. And then I might not even know that he can get tested. He might not even know. Right. So as I hear a lot from families that conditions associate, you know, breast ovarian cancer, like variants associated with breast ovarian cancer, can they be passed down through men? They absolutely can be. And 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 ovarian cancer. But he can learn more information about his genetic makeup. You mentioned this 50-50 question, which I believe is also the situation with Lynch syndrome. It is. 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. Yes. Some of your research is about how you talk with children who are in a family where a parent has it. And 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. Can you define Lynch syndrome and tell us about your very important work in this area? Yeah, absolutely. So 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, short risk over the course of the life cycle. And 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. So instead of having a colonoscopy every five years, you might go every other year or every year, depending on age and family history. So and then there, 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 on working with families who have Lee-Fraumeni syndrome, which is a pediatric onset condition. So cancer risk is extraordinarily elevated from birth and over half of individuals who have a mutation causing Li-Fraumeni syndrome, 33% of women will, 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 5, 6, 7, 8, 9, 10 primary cancer diagnoses. So unique discrete diagnoses over the course of their lives. 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? It's so much uncertainty. It's so much uncertainty. And there's a lot of effort going into trying to figure out how to manage that uncertainty, looking at risk tolerance, risk aversion. So I think I can talk, 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

kind of broadly to share information with children um so children starting quite young can can identify human difference they can look at hair length eye color skin color height build they kids notice differences um they say right they say the darndest things because they have social protocols around not discussing differences loudly in public that's why we love them it is It's just so delightful when it's not my own children. But so conversations, it's important for kids to have expectations and some structure and trust. So 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. um when kids and this is how i trained i trained in a community agency uh called wellness house in the western suburbs of chicago and um i ran support and bereavement groups with my mentor nancy b young who is a clinician uh in the western suburbs too and with many other folks out there who were extraordinary in what they did um and 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, will this be mine? Will this be my

future? Um, and the stories that stick with me, um, 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 then the evening I was running support groups who's with kids who were in it. So I had a 14 year old girl in a group who, um, 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. And 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.

And we always talk to kids like, what do you want to keep with your parents? What part of their legacy, their interests? And she said, I went through her books, which we think is fantastic because that's about interests and engagement and what lit her up. And we said, that's wonderful. What books did you keep? And she said, I kept the breast cancer books because I'm going to need them someday. Oh my gosh.

So in that moment, I started to understand that kids see their life stories in really profound ways really early on. And I see that all over. I saw that all over my practice when I was practicing clinically. So 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. And your research spells out the language in preschool versus elementary school versus middle school versus high school. I mean, it's extraordinary because because, of course, it's different. And you've studied this.

So I'm hoping to study it. This was the paper that you're talking about was was for my clinical work largely. And so 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. So it's one of the pieces that I like the most because I think it has a great translational value because we did.

we mapped out language. And I work 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. So we mapped out scripts. We mapped out hypothetical scenarios that are based on what we see every day in our practice. And we identify ways that parents can prepare for these conversations. So one of the tips that we suggest is that parents kind of 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. And 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. 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? And if so, can you speak to where social workers can work to thread that needle? 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. So it's, there's often, I don't want to say pressure because every physician practices as distinctively as every social worker practices yeah um but that said it there is value uh for of having more information and one of the things we hear a lot um from all kind of all constituents in the genetic space is that knowledge is power well power for what exactly right power for what power to be able to prevent a disease to catch it early to enable longevity um to know more about what we're coping with. There's a tremendous amount of uncertainty at every point along the kind of the road in this space. And 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. And one of my postdoctoral fellows is working on a study of experiences of anxiety moving in and out of scans. It's called scansiety. So really well-named that was coined. I think it was the New York times many years ago. Sorry, times max time magazine. And that experience of distress, we know that it peaks around scans and then it gets a little better, but the uncertainty, not just about oneself, 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 it affects them of course deeply and in other levels in other ways it's distinct

yes absolutely um we've had i mean 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. Because it's horrific to think about the grief, like it becomes a really pervasive, indistinguishable part of risk. You use the term anticipatory loss, and also the term ambiguous loss. Yes. Anticipatory, if I, 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. And I'll just add, I think this one can be relatable to those of us who've ever had a sonogram. Yes. 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 you know, explosion of knowledge related to sonograms, which we didn't use to have. Yes. And so I'll stop there, because you have so much to say on this. Yeah, so this is a an entirely different stream overlapping, but distinct stream of my work that looks at prenatal testing around a variety of different conditions. So one of the place 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. And this means we are playing catch up in mental health. And it's challenging because we don't necessarily know what the downstream consequences are going to be of medical decisions for years and years. So this particular study, um, was with, uh, it was with heterosexual couples just because we hadn't managed to recruit, um, any couples that were not heterosexual, um, where, um, the pregnancy sophisticated genetic testing during the pregnancy revealed either a variant that would lead to some disease, like was disease causing, or that could. It might be nothing, but it might be everything. And returned those findings to

parents during the pregnancy. And we interviewed men and women separately. And then nine months after, 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. and 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 and so in infancy that might present might maybe big big underline italics bright red arrows pointed at the word might

um and and 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 so 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. So therein lies the ambiguous loss. Completely. The loss of what it means to embrace the experience of pregnancy and having a baby. Yes. That gets completely turned upside

down by this. Absolutely. They may be. And 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. 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. We don't like uncertainty. And there may be a number of factors that contribute to our ability to tolerate uncertainty. But yeah, the genetic council 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 made the

the 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 kind of 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 because everything could be fine and then you've gone through all of this because knowledge is power but power for what power for

what. So 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. And 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, the 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. So thinking about evaluations, thinking about seeking out additional information, some of those may be pressing. So and in this study, the urgency was around considering abortion, which access to has been challenged right now on the national stage. stage, right? 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. So that's an urgent decision because there were legal parameters. Urgent decisions are also, you know, 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 lobectomy, 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. Their 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 between from important to urgent. But those kinds of decisions are ones that social workers can help families map out. Exactly. And 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. And 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 yes he is the one who is more like the mother yes um and this is a very social worker focused, private practice focused article. Can you tell us a bit about this? Sure. This case study was, this family was when we came across in our care wellness house. So it was a community organization that supported families affected by cancer. And 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.

So 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 that story and what I've been talking about is this idea of family scripts, kind of 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 most kind of the turning point for him,

his mom died when he was in middle school and when he was he knew she had a DNR and he he thought she had left him. And 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 leaving that child parentless the same way he had been parentless. And that became such a critical part of his identity. And when he kept coming back for

that touch point and this is definitely a private practice piece where you have a practice and kids can keep coming back because we hold their histories and their processing of the grief transforms and evolves over time so much things yes so much um and we knew his mom and she shared with us before her death what she wanted for him and what her fears were of him and 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, 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 breathed like he had seen his father so yeah so you did used to have a private practice 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? Yeah. So one of the most critical kind of 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. So that idea, 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 backed, feel backed into a corner. And so 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 so going back to the original case of Valerie and Jacob they could gather information and and part of what we did was refer them to reputable sources online and in with

colleagues practicing medically um but another part of it was do you identifying the different ways that couples move towards parenthood um from conventional conception with no intervention to adoption as kind of and a range of different ways to become parents and so 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? Very, very much. I practice very much psychoeducationally. It's my favorite model, and it's 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. So those are my models. And the education piece comes naturally to me as a classroom teacher, right, as a college instructor. And so 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. And what are you working on now?

What I'm working on now? Well, I will say that like so much of the practice work we do, it's heavy, right? Working with grief on a regular basis, especially for families with children who are young, who are 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 after a date, when I was practicing, I would come home and I would hug him and I would say, I love you. Please don't die. And that was part of our ritual. And he knew at the first, he was like, what, what's happening? What, what, what do you know about me that I don't know? I would say nothing. It's just, 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, I needed it to transition back to my home life or my work life. Um, so what I'm working on now is, um, I described Lee-Fraumeni syndrome earlier. I, um, so I'm on the faculty at, at Penn. I work with a team at the National Cancer Institute that studies Lee-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. And so that piece is in place. I'm also starting a partnership at the Children's Hospital of Philadelphia at 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. So I'm hoping that that intervention work will start up soon and will change the ways that, or the, and develop more tools to support

parents and children, families, family life in this brave new world. Yes. Dr. Wernerlin, 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. She is too. Yay, mom. She's a social worker. She is a social worker. My mom's a social worker too. So yeah, she, she joked, she said, thank goodness I had cancer. You wouldn't have had a career. I told her that I would have figured something else out and it would have been just fine. Well, thank you for joining us today at Social Work Talks. And again, the NASW Press article authored by Dr. Werner Lynn is available in our show notes section. And have a good weekend. Thank you so much.

Take care. Bye-bye. Bye. Thank you.