[Episode 55] Today’s Social Work Podcast is nigh social operate alongside children who have got cancer, also referred to every bit pediatric oncology social work. Although pediatric cancer is relatively rare event, making upward less than 1% of the cases diagnosed annually, that unmarried instance affects the lives of countless others. From a handling perspective, when a kid is diagnosed alongside cancer, the whole household unit of measurement is diagnosed alongside cancer. Children are most probable to acquire cancer inwards their firstly twelvemonth of life, together with to the lowest degree probable betwixt the ages of v together with 14. If you lot are white kid inwards the U.S. of A. of America you lot are nearly 2 times to a greater extent than probable to acquire cancer than if you lot are black. One inwards 300 boys together with 1 inwards 330 girls volition develop cancer before the historic current of 20. Every twelvemonth 2500 children croak from cancers alongside names similar Acute Lymphoblastic Lukemia (cancer of the os nub - the most mutual childhood cancer), Hepatoblastoma (cancer of the kidney), neuroblastoma (cancer of the primal nervous system), Ewings sarcoma (bone cancer), Hodgin’s Lymphoma (cancer of the lymph nodes), together with Wilms tumor (cancer of the kidney). Notice that the most mutual forms of adult cancer such every bit lung, thorax together with colon are non included on this list. And it is non only that children acquire some cancers together with adults acquire others. Among children, the cancers most oft institute inwards infants together with toddlers are non the same every bit the cancers most oft institute inwards teenagers. For children today, getting a diagnosis of cancer is non the decease judgement it in 1 lawsuit was. Before 1970 most children who got cancer died. Today, survival rates are nearly 80%. Currently in that location are nigh 270,000 survivors of childhood cancer. Consequently pediatric oncology social workers demand to know every bit much nigh working alongside survivors of cancer every bit they do nigh issues of decease together with dying.Download MP3 [36:03]
To aid me acquire a amend thought of what existence a pediatric oncology entails, I spoke alongside Dr. Barbara Jones, social worker together with faculty fellow member at the schoolhouse of social operate at the University of Texas at Austin. Dr. Jones is the immediate past times president of the Association of Pediatric Oncology Social Workers, on the editorial board for the Journal of Social Work inwards End-of-Life together with Palliative Care , together with the co-director of the Institute for Grief, Loss together with Family Survival at UT-Austin. Dr. Jones lately designed together with taught the firstly social operate course of study inwards the U.S. of A. of America on psychosocial oncology. In today's podcast, Barbara together with I talked nigh the purpose of a pediatric oncology social worker inwards a multidisciplinary team, alongside the child, alongside the family, inwards a infirmary setting together with inwards the community. We talked nigh best practices for working alongside kids alongside cancer together with the purpose of enquiry inwards pediatric oncology social work. She talked nigh practical together with ethical issues inwards pediatric oncology social operate such every bit consent together with assent, how to accurately assess a child's pain, together with how social workers tin have got tending of themselves. Barbara told some powerful together with moving stories nigh the operate she’s done alongside children who have got died together with children who have got survived cancer. We ended our conversation alongside a word nigh how social workers acquire grooming inwards pediatric oncology social work, together with what some resources are for social workers who would similar to know to a greater extent than nigh working alongside children alongside cancer.
One quick word nigh today’s podcast: I recorded today’s Social Work Podcast using a Zoom H2 recorder on location at the Society for Social Work Research annual conference. If you lot hear closely you lot tin hear the sounds of San Francisco inwards the background: a clock chiming, busses loading together with unloading passengers, together with fifty-fifty some pigeons congregating exterior of the interview room. They don’t detract from the interview, but I wanted to give fair warning inwards instance you lot were listening to this podcast anywhere were those sounds mightiness live motion for alarm.
Bio
Barbara L. Jones, (PhD, MSW, University at Albany) is an Associate Professor together with Co-Director of The Institute for Grief, Loss together with Family Survival at the UT Austin School of Social Work. Dr. Jones is the Immediate Past President of the Association of Pediatric Oncology Social Workers (APOSW) together with a fellow member of the Children’s Oncology Group. Dr. Jones is a Steering Committee Member of the LiveSTRONG Survivorship Center of Excellence Network and a Board Member of the Social Work Hospice/ Palliative Care Network. Dr. Jones is also a Project on Death inwards America Social Work Scholar and serves on the editorial board of the Journal of Social Work inwards Palliative together with End-of-Life Care. Dr. Jones’ clinical experience has been primarily inwards the acre of pediatric oncology, children’s grief together with loss, pediatric palliative together with end-of-life care, grief, trauma, together with survival. Dr. Jones conducts enquiry on pediatric palliative care, mindfulness meditation interventions for children alongside cancer, Hispanic/Latino adolescent cancer survivors together with on the wellness advertisement needs of childhood cancer survivors. In 2009, Dr. Jones received the Social Work inwards Hospice together with Palliative Care Network PDIA Social Work Leadership Award.Contact
barbarajones@mail.utexas.edu
Phone: (512) 475-9367
Fax: (512) 471-9600
Transcript [pdf download
Jonathan Singer: Well, Barbara, thank you lot thence much for talking alongside us on the Social Work Podcast today nigh kids together with cancer. And my firstly query for you lot is, what is pediatric oncology?Barbara Jones: Well, Jonathan, I’m truly glad to live alongside you lot today together with beak nigh this surface area that I’m really passionate about. When you lot asked me, do you lot hateful pediatric oncology or pediatric oncology social work?
Jonathan Singer: Is in that location a difference?
Barbara Jones: There is a difference. Pediatric oncology is a multi-disciplinary acre of tending that encompasses everything from physicians to nurses to kid life specialists to social workers, nutrition, chaplains, together with that’s the total interdisciplinary care. Pediatric oncology social operate is a specialty discipline, both inside social operate together with inside pediatric oncology that focuses on social workers caring for, together with working with, children together with their families alongside cancer.
Jonathan Singer: So, what is the purpose of a pediatric oncology social worker?
Barbara Jones: That’s a really big question. So, pediatric oncology social workers tin have got many dissimilar roles inwards both community settings every bit good every bit inwards infirmary settings. So, they tin live working alongside a kid together with their household unit of measurement from the minute of diagnosis to aid alongside managing, variety of helping to hold, that emotional news, which is truly difficult. So, correct from the really acquire go, ideally you lot would have got that pediatric oncology social worker in that location upon diagnosis. That soul would remain alongside the household unit of measurement throughout handling together with posttreatment, whether that resulted inwards a palliative tending halt of life province of affairs or survivorship. Across that whole handling continuum together with posttreatment, pediatric oncology social workers supply emotional support, they supply assessment, clinical assessment, they supply mental wellness together with emotional interventions, for both the children, their siblings, their parents, sometimes their community, sometimes their schoolhouse setting. I institute inwards my exercise that sometimes pediatric oncology social workers also play a purpose inwards the multidisciplinary squad to aid some of the other disciplines bargain alongside the emotional impact of working alongside children alongside cancer together with their families. Obviously, pediatric oncology social workers also participate inwards advocacy, they aid position resources for families together with children, they pass the time, sometimes nosotros serve almost every bit a witness to the experience, pass the fourth dimension alongside the kid together with household unit of measurement to aid them adjust to the experience they’re having, whether it live a infirmary stay, an invasive treatment, only variety of learning the identity slice of, at nowadays I’m a kid alongside cancer, together with what does that mean, how do I relate to my classmates? I could move along here, Jonathan, thence I’ll halt there.
Jonathan Singer: As you’re describing it, it sounds similar a pediatric oncology social worker does precisely what nosotros beak nigh inwards schools of social operate every bit sort of eco systemic practice, you lot know, working alongside all the dissimilar levels, the micro, the meso, the macro, the communities, the families, the kids, working alongside many dissimilar service providers. So if in that location was a social worker listening to this podcast who lately started working inwards a province of affairs where he or she was going to live working alongside kids alongside cancer, what sort of things would they demand to, would live helpful to know nigh or recall nigh inwards damage of existence able to supply the best service every bit possible?
Barbara Jones: That’s a cracking question. Social workers working alongside kids alongside cancer together with their families demand to sympathise that what the children together with the families seem to demand the most is that 1 thing, they demand someone to beak alongside nigh their feelings, nigh their fears, nigh the experience. They demand someone to communicate together with aid them figure out what’s going on for them. And thence sometimes that is talking, sometimes those are dissimilar interventions similar play interventions, but basically they demand back upward around this really hard process, together with how am I going to acquire through this together with care and, variety of, experience well, every bit good every bit I tin experience throughout the process. They also demand advocates that aid them alongside things similar making sure that they sympathise what’s happening. Sometimes inwards a medical setting, entering a hospital’s similar entering a dissimilar Earth if you lot don’t speak hospital, together with thence they demand a translator. They demand somebody to say, you lot know, many times inwards my exercise I’d live sitting alongside a kid together with family, the medico would come upward in, fifty-fifty some of the best communicative doctors would explicate what was happening together with and then exit the room together with and then the kid or the household unit of measurement or both would plow to me together with say, “What did she only say?” Now, some of that is because medical is hard to speak, some of that in that location were actual also linguistic communication barriers, sometimes that’s also only nigh the emotional trauma of hearing that your kid has cancer, you lot don’t have got it all inwards at once. Once you lot hear that, you lot don’t hear a lot of the other words together with thence you lot demand someone in that location to aid you lot say, this is what happened, together with also to, sometimes, we’d sit down correct alongside them together with write down, what questions do you lot have got when the medico comes back? What component is withal confusing to you? And I’d trace the medico or the nurse dorsum inwards together with say, “Let’s move over this component in 1 lawsuit again because this is confusing.” So, a translator, they demand an advocate to aid them acquire services. Sometimes it’s the traditional fiscal back upward services that nosotros recall about, applying for fiscal support. There are many pediatric oncology social workers that truly that whole aspect of back upward happens inwards some other component of the infirmary ‘cause it’s pretty technical, together with that frees upward the social workers to supply the emotional support, but fifty-fifty having access to the people that are going to aid you lot fill upward out those forms. But, getting support, getting resources also agency things similar having the chance for Make-A-Wish, having the chance to have got your household unit of measurement alongside you.
One of the most dramatic occurrences that I tin recall of that I recall many of my pediatric oncology social workers colleagues have got similar stories, is a immature man child who was facing the halt of his life together with he was good maintained inwards the hospital, what I hateful past times that is his hurting was nether control, his household unit of measurement was supporting him, but he truly really wanted to view his uncle who lived inwards Puerto Rico 1 final time. And the kid was able to articulate that together with the household unit of measurement did non have got the resources to acquire the uncle hither from Puerto Rico. So, what are nosotros gonna do? So nosotros operate alongside all these amazing organizations that provide, in that location are many organizations that truly volition supply gratuitous flights for kids to acquire treatment, non every bit many for families, but nosotros spent 1 really long twenty-four hours on the telephone alongside everyone I could recall of until I was able to acquire an organisation to grip to wing that uncle for gratuitous from Puerto Rico to upstate New York thence this man child could view his uncle. And sure enough, afterwards nosotros got the uncle there, the man child died, together with he needed to have got his uncle there. So sometimes getting resources is beyond what nosotros mightiness recall nigh inwards some other setting.
Jonathan Singer: So, coordinating resources, evidently a huge component of it, also existence a translator. And it sounds similar a lot of what you’ve talked nigh is operate inwards a infirmary but you lot mentioned inwards the commencement that you lot don’t have got to operate inwards a infirmary to live a pediatric oncology social worker. What are some of the other settings that pediatric oncology social workers operate in?
Barbara Jones: There are a lot of not-for-profits inwards the community that mightiness supply back upward together with services to kids alongside cancer, Make-A-Wish is 1 I recall about, Cancer Care is some other one, thence lots of places, Super Sibs which is a wonderful organisation that provides resources to the siblings of children alongside cancer who are oft overlooked together with forgotten only because the household unit of measurement needs to, those of us that all sympathise eco systems sympathise that the household unit of measurement rallies to back upward the critically sick kid together with there’s plenty of enquiry that tells us that siblings sometimes have got long-term effects from that. So, Super Sibs is 1 that comes to mind. So there’s lots of dissimilar organizations, together with inwards fact, I have got the fortune of coming together a lot of them at the Association of Pediatric Oncology Social Workers which is a really specialized social operate membership organisation for pediatric oncology social workers that meets annually together with where nosotros have got people who are practicing inwards clinics, together with hospitals, together with inwards the community come upward together together with beak nigh how do nosotros best, what our best exercise is to back upward these kids every bit they move through this process.
Jonathan Singer: So since you lot only mentioned best practices, what are some of the best practices, together with are in that location prove based approaches for working alongside kids alongside cancer together with their families?
Barbara Jones: That’s some other cracking question, together with that’s, I hope, where my career is taking me correct now. I practiced clinically every bit a pediatric oncology social worker together with truly got into social operate enquiry to commence to answer that question. How do nosotros best serve children alongside cancer together with their families, together with what is the evidence? And, I’ll tell you, similar a lot of our fields, nosotros don’t have got rigorous randomized command trials that tell us, do this, non that. Also, nosotros have got to constituent inwards that each kid is unique, each household unit of measurement is unique, each minute is unique. So sometimes when I’m squall for a kid or a family, how are you lot doing, I don’t fifty-fifty inquire that query anymore. I’ll inquire them, how are you lot doing today, or how are you lot doing since lunchtime, or how are you lot doing since the medico came in? So my intervention is going to live changed based on how they’re doing together with how they’re doing changes all twenty-four hours long. So that’s 1 affair that I’ll say. But I did have got an chance to do some enquiry myself that asked social workers nigh what they thought were the best practices, peculiarly inwards the halt of life. That was helpful together with illuminated some of the things together with that’s where I acquire some of these ideas nigh talking nigh feelings, hurting together with symptom administration is truly a purpose for social operate that nosotros sometimes don’t recall about, supporting the kid together with the household unit of measurement inwards the community together with those types of things. We do have got some goodness Institute of Medicine reports that have got come upward out lately that are really helpful for pediatric oncology social workers. One is called “Cancer tending for the whole patient” that focuses a flake to a greater extent than on adult but withal has some cracking recommendations, pretty recent publication, I recall 2008. There’s also an Institute of Medicine study called “When children die” that looks at the palliative tending needs. So nosotros have got that variety of evidence, nosotros have got the variety of collective community prove bringing experts together for years to beak nigh what is best. There’s also Institute of Medicine reports on childhood cancer survivors, thence we’ve got that to create on. But every unmarried 1 of those reports says what is needed is to a greater extent than enquiry thence I pass a lot of my fourth dimension trying to have got clinical social workers recall nigh where do they gibe into enquiry together with making sure that researchers are staying grounded inwards practice, every bit a lot of us do, but trying to do that translation betwixt the exercise of pediatric oncology social operate together with the enquiry of pediatric oncology social work.
Jonathan Singer: So what are some of the things that pediatric oncology social workers who are inwards the acre correct at nowadays do to contribute to this noesis base of operations or this research? And I’m thinking specifically of social workers who mightiness non necessarily live involved inwards an actual study. What’s the bridge, what’s the connection?
Barbara Jones: That’s a goodness question. So, there’s this whole continuum evidently in that location of those of us who are at nowadays playing the academic role, although I withal truly view myself every bit a clinical pediatric oncology social worker together with I promise I never quite lose that identity. But together with then across the continuum in that location are folks that are inwards the infirmary that mightiness live component of a multidisciplinary enquiry squad thence they mightiness serve inwards that way. The other affair that social workers do a lot of is helping patients together with families sympathise informed consent. So, most children that are treated for cancer are on clinical trials. This is a flake dissimilar than adult cancer. In fact, component of the argue I mentioned to you lot before that nosotros view the survivor rates jumping thence much inwards the past times xl years, the survival rates for childhood cancer have got jumped to the signal that a kid diagnosed today has something similar an 85% peril of survival. That’s because closed to 100% of these kids are on clinical trials, thence nosotros are improving the scientific discipline of treating kids alongside cancer all the time. And social workers are inwards there, they’re explaining informed consents, sometimes they’re getting informed consents, sometimes they’re helping if in that location are ethical issues around informed consent. So most of pediatric oncology happens inwards a context of enquiry together with social workers are correct inwards the see of that similar everything else. And together with then in that location are also social workers that are also PIs on their ain intervention studies too.
Jonathan Singer: So, you lot only mentioned that nearly all kids alongside cancer are involved inwards some sort of clinical trial together with that that’s 1 of the things that has contributed to this incredible increase inwards survival rates together with that’s dissimilar than adults. And so, 1 of the things I was wondering was, how is cancer inwards children dissimilar than cancer inwards adults?
Barbara Jones: Do you lot hateful medically or psychosocially or…?
Jonathan Singer: I recall likely inwards general, but to a greater extent than specifically for the purpose of the social worker.
Barbara Jones: Ok, give thank you lot you. Well sure as shooting when a kid is diagnosed alongside cancer, the entire household unit of measurement is diagnosed alongside cancer. Now, nosotros tin view that’s truthful for adults too, right, together with whatever of us who have got had cancer inwards our household unit of measurement know that when somebody is diagnosed, everybody is involved. But, sure as shooting inwards pediatrics, it’s much dissimilar because the kid is non fifty-fifty legally onetime plenty to consent to their ain treatment. So, nosotros have got some major issues hither nigh consent together with assent, together with thence parents are legal medical conclusion makers because of that. We have got plenty of occasions where parents together with children don’t grip on what should happen, whether it’s starting treatment, stopping treatment. So that’s some other big purpose for the social worker is facilitating communication inside the family, together with and then betwixt the kid together with the family, together with and then betwixt the kid together with the medical team, together with the household unit of measurement together with the medical team, there’s a lot of communication facilitation that goes on.
Jonathan Singer: I’m only gonna interrupt existent quick. So, when you lot say consent, you’re talking nigh the soul who’s legally available to say “yes, nosotros desire this,” together with when you lot beak nigh assent, you’re talking nigh what kids give because they truly don’t brand their ain decisions inwards that sense.
Barbara Jones: Exactly, give thank you lot you for clarifying. So yeah, “consent” is the legal term together with “assent” is something that nosotros should live getting inwards most cases. And most children’s hospitals operate really hard to acquire consent together with assent for handling thence that non entirely does the raise legally say, “Yes, my kid tin enroll inwards this study together with my kid tin acquire this treatment,” but the kid has some buy-in likewise together with understands inwards their developmentally appropriate way what’s happening to me, together with understands what it agency to have medical treatment. So, issues of household unit of measurement dynamics are huge because this thought nigh when a kid is diagnosed the entire household unit of measurement is diagnosed. And what nosotros know nigh families is that if you lot alter something inwards that system, everything moves, together with thence the equilibrium is thrown off. And social workers are engaging correct away alongside both the kid together with the family. How are they gonna acquire through this? What are they gonna do? What’s their plan? Many times, if it’s a household unit of measurement where 2 parents were working, 1 has to halt working to aid the kid through the treatment. How are they going to negotiate that? What does the hateful for them financially, emotionally, fifty-fifty inwards the parents ain identity, which is non something they’re thinking nigh at that time, but inwards the long-term that tin move impactful. If in that location are economical struggles already, which many times in that location are, how do nosotros back upward a household unit of measurement that mightiness have got already been at their absolute capacity for dealing alongside struggle, together with choose out the most resilience nosotros tin inwards them? And many times I’ve been surprised at how incredible families are inwards their powerfulness to create do alongside this hard diagnosis. So, issues of consent together with assent, issues of household unit of measurement dynamics. Issues of developmental phase that a kid who’s 4 is really dissimilar than a kid who’s fourteen. So, inwards pediatrics, we’re treating from children who are non-communicative to the adolescent who mightiness live extremely communicative together with nosotros have got to figure out how to communicate across the spectrum, how to brand sure data is historic current appropriate. Influenza A virus subtype H5N1 story that I have got told before inwards my classes together with I volition tell you lot at nowadays is that kids are really very literal together with thence for many types of cancer treatment, 1 of the measure methods of moving forwards is to have got the kid have got a porta-catheter inserted truly nether that pare inwards the chest. It’s a way to depict bloods, administer chemotherapy, together with non have got to stick the kid a meg times, right? So it sounds variety of barbaric that nosotros would insert something inwards the child’s pare but it truly ends upward existence less intrusive, less painful. It’s a surgical procedure, nosotros acquire consent together with assent from the kid together with the household unit of measurement for this but I have, it’s a hard affair to comprehend, nosotros fifty-fifty have got both our colleagues inwards social operate together with kid life fifty-fifty have got variety of these dummies that have got examples of what it looks like. So you lot tin explicate this to a child, but you lot have got to cheque inwards alongside kids together with abide by out, do they sympathise what we’re saying? So, 1 fourth dimension I was working alongside a squad together with the squad was a really strong, communicative team, doing a fine job, or thence nosotros all thought, of communicating together with talking nigh a porta-cath together with inserting a porta-cath, together with da da da da, together with explaining it, together with the kid was in that location together with the grown-ups all left the room together with the kid looked at me together with said, “Are they gonna lay a truthful cat inwards my chest?” because all he heard was “cat.” So, patch that’s an extreme example, that’s how literal children are. That’s how nosotros truly have got to cheque in. So linguistic communication issues, developmental issues are important, together with and then sometimes ethical issues. Ethical issues come upward up over this thought nigh who decides the handling together with what do nosotros do if there’s disagreement? And also ethical issues come upward up about, inwards pediatrics, those of us inwards the medical team, nosotros tending a lot nigh these kids. That tin impact, you lot know, physicians together with how they proceed. They’re withal going to live next their protocols, but sure as shooting their emotions come upward into play too. So there’s lots of ethical issues that tin come upward up. One other surface area that I only desire to beak nigh hither likewise is, I’m non sure that we’re ever truly goodness at assessing children’s pain. So I am concerned that nosotros do a goodness chore together with that social workers should have got a purpose inwards finding out, what does hurting mean, how is hurting experienced, how does this kid limited pain, how volition nosotros know they’re having pain, how do nosotros brand sure that nosotros trim down that every bit much every bit nosotros can?
Jonathan Singer: You talked nigh a number of dissimilar areas inwards which pediatric oncology social workers exercise inwards the hospital, exterior the hospital, together with a number of dissimilar things that they do. Is in that location specialty grooming that a social worker has to acquire or should acquire or unremarkably doesn’t move far social club to live a pediatric oncology social worker?
Barbara Jones: Most people do non acquire this grooming inwards their schools of social operate unless they plow over off to live working alongside a professor who has a passion nigh it thence there’s a few people who acquire it at the University of Texas at Austin because I cannot aid but weave it into the classes. And, inwards fact, nosotros have got an oncology course of study inwards our social operate program. But for most practicing pediatric oncology social workers, they acquire it on the chore together with that’s both a hard way to larn together with sometimes a goodness way to learn. The best things that I’ve ever learned nigh pediatric oncology social work, I volition tell you, I have got learned when I have got been smart plenty to live placidity together with to hear to the kids together with families. So, there’s some learning that has to plow over off there. However, there’s plenty of ways that nosotros tin aid pediatric oncology social workers before they acquire these jobs together with after. Influenza A virus subtype H5N1 lot of people come upward to pediatric oncology social operate afterwards they’ve been doing something else. I did. I had a few other jobs before I came to this together with institute it every bit variety of my passion. So, there’s unremarkably a good, rigid science laid inwards social work, together with and then how do I interpret that to this population? We inwards pediatric oncology social operate beak nigh how in that location seems to live a divide, that somewhere inwards the firstly duad of years, together with I don’t know that this has been empirically tested, people figure out whether or non this fits. And so, you lot acquire in, you lot endeavor it, you lot view if you lot similar it, if it isn’t a fit, you lot displace on pretty early. If you lot don’t displace on, there’s some serious longevity inwards this field. There’s people who truly view this every bit a calling. One of the best ways to acquire specialized grooming is through the Association of Pediatric Oncology Social Work where nosotros have got an annual conference together with coming together together with that is where nosotros beak nigh guide practice. How am I gonna aid people acquaint both their empirically supported together with their exercise supported interventions, applications? The learning in that location is tremendous. In fact, nosotros have got a whole novel workers seminar that nosotros do for folks who are novel inwards the acre to aid them through that. So that is 1 way that nosotros acquire that variety of grooming out there. Sometimes you lot tin acquire specific grooming online. So NASW has some trainings online nigh oncology social work. It’s non pediatric specific. Sometimes you lot tin acquire specialized grooming inwards halt of life tending which tin live helpful to you, together with you lot tin acquire specialized grooming inwards pediatric halt of life care. We do have got a social operate inwards hospice inwards palliative tending network that meets annually every bit well, we’re coming together this year, that talks nigh specifically how do nosotros do palliative work. There’s also some tremendous grooming opportunities that come upward out of the Lance Armstrong Foundation, the American Cancer Society. So you lot have got to seek it out, but in that location are ways to acquire some of that training. And together with then a lot of it is done past times mentorship, really, past times that clinical supervisor in that location inwards the hospital, past times reading everything nosotros can, past times talking alongside people, together with coming together alongside colleagues.
Jonathan Singer: So how mightiness a social worker back upward a kid together with household unit of measurement at the halt of that kid’s life? And, conversely, how mightiness a social worker back upward a kid together with a household unit of measurement who’s surviving?
Barbara Jones: Well, every bit nosotros talked about, each situation’s gonna live unique, but in that location are some ways that nosotros tin recall nigh supporting children together with families at the halt of life. One of those is children together with families oft demand a witness to the experience, thence only existence acquaint together with figuring out how to live in that location without existence intrusive, figuring out how to offering interventions that may live nonverbal, that may, you lot know, sometimes it’s nigh struggling alongside your ain futility because you lot experience similar you lot desire to do thence much, you’re likely pretty see connected to the household unit of measurement together with you lot can’t have got it away, you lot can’t gear upward it, you lot can’t fifty-fifty have got the hurting away, you lot don’t have got a correct to, thence how am I gonna sit down there? And thence getting comfortable witnessing together with sitting alongside pain, sounds variety of harsh, but really, existence inwards the presence of that together with non shrinking is incredibly supportive. I mean, you lot recall nigh the times inwards your life when you've been truly struggling alongside something, to have got somebody who volition only hear together with says to you, “I can’t gear upward this, but I’m non going away, I’ll live here,” that’s the intervention. So, I recall nigh that.
In add-on to that, nosotros demand to sure as shooting do a total assessment together with recall nigh cultural contexts inwards all of that. But it’s of import to do the best nosotros tin to facilitate communication from the child, alongside the child, brand sure the kid understands what’s going on. I volition inquire children, tell me what’s happening, together with fifty-fifty if they say, good it’s correct in that location inwards the report, yeah, I know but I desire to hear what you lot tell me. Because I’m checking for the kid who thinks he’s having a truthful cat lay inwards his chest, you lot know, I’m checking it out. I've learned the hard way to ask. So at the halt of life, certainly, I’m going to say, thence tell me what’s going on, what do you lot think’s happening? It’s non uncommon at all for children to protect their parents from their ain suffering, fifty-fifty dying children. And so I've had plenty of kids say to me, “Barbara, I know things aren't going good together with I tin tell ‘cause I tin feel, I know my body, I've had cancer off together with on for 10 years together with I know something’s different,” or, “I tin only experience it inwards my doctor’s face, you lot know, I know my medico good enough, I've known him for 10 years, but don’t tell my mom, don’t tell my mom I’m dying because I don’t desire her to live upset.” Conversely, the mom may also acquire you lot inwards the hallway together with say, “I know what’s going on alongside him. Let’s non tell him, I don’t desire him to lose hope.” So there’s a position for a social worker, correct there, to aid each fellow member of the household unit of measurement live able to communicate guide alongside each other because kids have got the same correct to halt of life planning, to halt of life communication. If you lot recall nigh the operate that hospice does both alongside adults together with alongside children, kids have got a correct to have got those conversations alongside their family, to say, “I beloved you,” to say, “Don’t forget nigh me.” All those things, kids have got a correct to say that, parents have got a correct to it, together with thence nosotros have got to sometimes aid choose upward the uncomfortable conversations.
And it’s nigh existence honest. It is really hard to tell anybody bad news, really hard. It’s hard for doctors to tell adults bad news, it’s truly hard to tell a kid that you’re probable to non live from this disease. That’s really difficult. So nosotros also aid tell. We aid saying, if we’re at that stage, nosotros may say, “Can I, you lot know, do you lot desire me to live alongside you lot when you lot beak alongside your child? Do you lot desire to have got the medico do it? Should nosotros do it? How are nosotros going to do this?” So we’re constantly getting the message out nigh honesty. Sometimes there’s actual halt of life planning. I had 1 kid I worked alongside that component of her halt of life computer program was she had a bunch of stuffed animals together with she decided who was getting what. That was her halt of life planning. Somebody had to inquire her, thence she got to do that together with that was incredibly meaningful. I have got 1 of them myself, so, to this twenty-four hours inwards my office. Also, working alongside the household unit of measurement nigh arrangements. And nosotros truly can.
I recall it is a misnomer to say that that completely obliterates promise because I recall you lot tin have got promise inwards the midst of this, it’s only that what you’re hoping for changes. So, inwards the commencement the household unit of measurement may promise for cure, the kid may promise for cure, nosotros may promise for cure but if you lot acquire to a dissimilar stage, you lot mightiness promise for, I've had parents say to me, I promise my kid is pain-free, I promise I have got the courage to acquire them through this, I promise that nosotros will, you lot know, choose inwards all their best friends and, you lot know, their favorite items, I promise that nosotros tin acquire them home, I promise they tin die…so, my signal existence is that nosotros have got to maintain facilitating promise patch maintaining honesty. So it’s a lot nigh existence a witness, existence an advocate, existence a communicator, existence willing to start some hard conversations, existence willing to intervene when you lot don’t know what to do. That is a scary position but to only say, "I’m gonna sit down here." And sometimes I've actually said that to families instead of only sitting there, similar they mightiness wonder why am I withal sitting here? No, I have got said to families, "I’ll, you lot know, if you lot like, I tin only live here." So all of that is really very helpful, if nosotros recall nigh halt of life conclusion making, making sure that families are fully informed nigh what their choices are.
And again, advocating for hurting control. Sometimes nosotros don’t acquire that right. Social workers tin have got a purpose inwards that advocacy. Social workers tin also job non-pharmacological interventions to assist inwards hurting control. So that’s when I recall nigh halt of life, those are ways that social workers help.
We recall nigh survivorship, in that location are, inwards add-on to the children that nosotros mightiness operate alongside directly, thence the pediatric oncology social worker plant alongside a kid who together with then survives. Ideally nosotros have got a way to aid transition that kid from existence on active handling to this identity every bit a survivor. Both transition them variety of emotionally, but also, if I was half-dozen when I got treated, I may non fifty-fifty know what happened to my body, right, but at nowadays I’m 16 or I’m 26, I’m going for a job, I’m thinking nigh getting married, peradventure having a kid, I demand to know what happened to my body, I demand to know what the, what nosotros telephone yell upward "late effects" are, mutual belatedly effects, whether in that location are carbon toxicities or other concerns, infertility, fertility concerns. Ideally we’re having those conversations on the front end halt thence we’re doing some preventative operate peculiarly around fertility. But, making sure that the child, at nowadays survivor, sometimes adult, has actual written data nigh what happened, what their handling was, together with that they tin have got that alongside them through their lives thence that when they encounter a novel medico every bit a 26 twelvemonth old, they tin say, I had cancer, this is what happened, these are the treatments I got, together with that helps them have got long term healthcare, wellness promotion. There are some peril factors post cancer together with they’re subject upon the cancer but it is truly of import to remain inwards melody to wellness advertisement needs for this population, peril of secondary cancers, peril of cardiac event, etc., it truly depends of the cancer. But knowing what those are together with and then helping create wellness promoting interventions for these kids-slash-adults is truly really important. Ideally this is done every bit an interdisciplinary team. The other affair that I’ll say is that recent estimates say there’s something similar 270,000 childhood cancer survivors inwards the U.S. of A. of America correct at nowadays thence you lot may non live working inwards the childhood cancer setting together with you lot may live working alongside a childhood cancer survivor. So existence able to figure out, is that component of a person’s narrative? The soul I encounter at 29 [years old] inwards a couples session: how do I abide by out if that’s component of their narrative ‘cause that mightiness live impacting their life now, it probable is impacting their life at nowadays or their identity. So, keeping opened upward to the fact that in that location may live people who have got had this experience who mightiness non unwrap it upon firstly meeting. In fact we've done some enquiry around how together with when people unwrap thence that’s some other issue. People don’t ever come upward out together with say, “Hi, I’m a childhood cancer survivor,” but it may live impactful for you lot every bit a clinician inwards some other setting too.
Jonathan Singer: So, Barbara, give thank you lot you thence much for talking alongside us today nigh pediatric oncology social work.
Barbara Jones: Well, give thank you lot you, Jonathan, for the chance because, every bit you lot tin tell, I experience really passionate nigh these children together with their families together with nigh the purpose that social operate tin play to aid them. So I was truly glad to live here.
-- End --
References together with Resources
- Jones, B., Volker, D., Vinajeras, Y., Butros, L., Fitchpatrick, C., Rosetto, K. (2010). The pregnant of surviving cancer for Latino adolescents together with emerging immature adults. Cancer Nursing: An International Journal for Cancer Care. 33(1), 74-81. [pdf]
- Jones, B. (2008). Promoting salubrious evolution for adolescent cancer survivors. Journal of Family together with Community Health. 31(1S), 861-870. [pdf]
- Jones, B. (2006). Companionship, command together with compassion: Influenza A virus subtype H5N1 social operate perspective on the needs of children alongside cancer together with their families at the halt of life. Journal of Palliative Medicine, 9(3), 774-788. [pdf]
- Jones, B. (2005.) Pediatric palliative together with end-of-life care: The purpose of social operate inwards pediatric oncology. Journal of Social Work inwards End-of-Life & Palliative Care. 1(4), 35-62. [pdf]
- Association of Pediatric Oncology Social Workers [http://www.aposw.org/]
- CureSearch: The Children's Oncology Group together with the National Childhood Cancer Foundation [http://www.curesearch.org/]
- Cancercare [www.cancercare.org/]
- Supersibs [www.supersibs.org/]
- Make-a-wish [www.wish.org/]
- Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. (2008). [http://www.nap.edu/openbook.php?record_id=11993&page=1]
- When Children Die: Improving Palliative together with End-of-Life Care for Children together with Their Families (2008). [http://www.nap.edu/openbook.php?record_id=10390&page=1]
- Principles of Training Social Workers inwards Oncology [http://www.socialworkers.org/practice/intl/hungary2008/english/PrinciplesofTrainingSocialWorkersinOncology.pdf]
- University of Texas at Austin Course, First inwards Nation, Blends Fields of Social Work together with Oncology [http://www.utexas.edu/ssw/news/2009/x0058.html]
- Childhood Cancer: Late Effects of Cancer Treatment [http://www.cancer.org/docroot/CRI/content/CRI_2_6x_Late_Effects_of_Childhood_Cancer.asp]
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