Promoting Resilience in Children with Serious Illness and their Families

Transcript

• 00:00Great, thanks everyone for joining
• 00:02our Cancer Center grand rounds.
• 00:04Today my name's press 9 month.
• 00:07I'm a faculty member in the
• 00:09Department of Pediatrics.
• 00:10I have the distinct honor of
• 00:13introducing our Cancer Center,
• 00:14grand rounds,
• 00:15guest speaker today Doctor Abby Rosenberg.
• 00:18Doctor Rosenberg is an associate
• 00:20professor of pediatric hematology
• 00:22and oncology at the University of
• 00:24Washington School of Medicine.
• 00:26The director of Pediatrics at the
• 00:28Cambia Palliative Care Center of
• 00:30Excellence at University of Washington,
• 00:33director of the pilot of Keran Resilience
• 00:35Laboratory at Seattle Children's
• 00:37Research Institute and the Director
• 00:39of Survivorship and Outcomes Research
• 00:41at Seattle Children's Hospital,
• 00:43Cancer and Blood Disorders Centers
• 00:45through her work as Program Co.
• 00:47Director for the University of Washington
• 00:50T32 program in Positive care research.
• 00:52And a lead mentor in the palliative
• 00:55care and Resilience Laboratory
• 00:56Doctor Rosenberg is very active
• 00:58and training the next generation
• 01:01of palliative care and supportive
• 01:03oncology clinician scientists at the
• 01:06postdoctoral and junior faculty levels.
• 01:08Doctor Rosenberg Additionally holds
• 01:10multiple national leadership positions.
• 01:11She's the chair of the Ethics Committee at
• 01:14the American Society of Clinical Oncology.
• 01:17The Co.
• 01:17Chair of the scientific program for
• 01:19the Annual Assembly of the American
• 01:22Academy of Hospice and Palliative Medicine,
• 01:24and the Associate editor in Chief
• 01:26of Palliative Care.
• 01:27Fast article summaries for clinicians.
• 01:30Doctor Rosenberg's NIH funded research
• 01:32focuses on developing programs to
• 01:34help patients and families with
• 01:37serious illness build resilience,
• 01:39thereby alleviating suffering
• 01:41an improving quality of life.
• 01:44The title of Doctor Rosenberg's
• 01:45talk today is promoting resilience
• 01:47in children with serious illness
• 01:49and their families.
• 01:50I'll be moderating the discussion afterwards,
• 01:52so please enter your questions into
• 01:54the chat function will take questions
• 01:56after Doctor Rosenberg's talk.
• 01:58Thank you so much Doctor Rosenberg
• 02:00for speaking with us today.
• 02:03Thank you for having me.
• 02:04This is such a pleasure to be here
• 02:06and that was a very very kind
• 02:08introduction process that it's really
• 02:09humbling in a little embarrassing,
• 02:11happy to be here with all is as
• 02:13all of you as you just heard,
• 02:16I'm going to talk today about promoting
• 02:18resilience in patients and families
• 02:19with serious pediatric illness.
• 02:21And by way of a disclaimer,
• 02:23I know this is a larger Cancer Center.
• 02:25Grand rounds.
• 02:26As a pediatrician,
• 02:27I'll be talking about what we've
• 02:29learned in our work with adolescents
• 02:31and young adults with cancer,
• 02:32and by the end of this talk I will be
• 02:35sharing with you how translate abalar
• 02:37experiences to older patients with cancer,
• 02:39their caregivers,
• 02:40and ourselves.
• 02:41As folks who are caring for these patients.
• 02:48So I wanted to start with this
• 02:50question about why resilience.
• 02:51Why are we talking about this
• 02:53particular construct today?
• 02:54Why does it matter for our
• 02:56patients with cancer for me,
• 02:57Despite that lovely introduction,
• 02:59that piece of my history that you
• 03:02didn't hear is that I started my career
• 03:04as a social worker and I will say
• 03:06I was vastly undertrained and under
• 03:08qualified to do the work I was doing,
• 03:10taking care of kids with HIV
• 03:13and their families during the
• 03:15tail end of the HIV epidemic.
• 03:17I burnt out within about a year
• 03:19from that work and the thing that
• 03:21I continued to think about during
• 03:23the year and then thereafter during
• 03:25my training in medical school in
• 03:27pediatric residency and fellowship
• 03:29and ultimately in my experience as an
• 03:31oncologist in palliative care physician,
• 03:33is this why are there some patients
• 03:35and families who seem to figure it out,
• 03:38if not thrive in the face of adversity,
• 03:40is like cancer?
• 03:41Why are some other people just falling apart?
• 03:44And is there a way that we could
• 03:46teach to the ones who are struggling
• 03:49with the ones who had figured it out?
• 03:52Seem to have learned on their own.
• 03:53If we did that,
• 03:55would we be improving the quality
• 03:57of life of patients with cancer
• 03:59and their families?
• 04:00It turns out it's pretty hard to
• 04:03translate this idea of what resilience
• 04:05is into what we do in medicine,
• 04:08and there were definition of resilience
• 04:10comes from the material Sciences and physics.
• 04:12It's defined as the capacity of
• 04:14a particular material to absorb
• 04:16energy when it's deformed,
• 04:18and then appan up unloading to
• 04:20have its energy recovered.
• 04:21So the classic example is a rubber
• 04:24band where you stretch it an IT
• 04:26rebounds back to its original shape,
• 04:28and therefore it is resilient.
• 04:31But what does that mean when
• 04:32we're talking about patients and
• 04:33families in their own experiences?
• 04:35And when I started this work
• 04:36over a decade ago,
• 04:37one of my mentors said this to me.
• 04:39He said, Abby,
• 04:39if you want to change something,
• 04:41you have to be able to measure it.
• 04:43When you say resilient,
• 04:44what are you talking about?
• 04:46What are you measuring?
• 04:48What are you actually changing?
• 04:50When we started this question was
• 04:52hard to answer to because there
• 04:54was a lot of controversy in the
• 04:56world of psychology and social
• 04:58Sciences about what resilience is.
• 05:00This is a study done by a
• 05:02psychologist named George Bonanno
• 05:03who studies bereavement and he's
• 05:05one of the preeminent scientists
• 05:07in the resilience world.
• 05:08On the X axis,
• 05:09here's time and on the Y axis is
• 05:12levels of distress and depression.
• 05:14And you'll notice there are three
• 05:16lines of people moving through their
• 05:18lives until a traumatic event happens.
• 05:20In this case,
• 05:21it's the death of their spouse
• 05:23and following that,
• 05:24every single one of those lines
• 05:26has a normal and expected spike
• 05:28in distress and depression,
• 05:29followed by some new pathway towards
• 05:32wherever folks are going to end up.
• 05:34And was really interesting
• 05:35to me about this graph.
• 05:37Is that it kind of illustrates the three
• 05:40controversies that at the time were
• 05:42swirling around how we should think
• 05:44about and operationalize resilience.
• 05:46There was a school of thought who
• 05:48would look at this graph and say
• 05:51resilience is defined on the left.
• 05:53It is a innate,
• 05:54perhaps immutable characteristic,
• 05:55something like grit,
• 05:56hardiness, optimism,
• 05:57something we either have or we don't,
• 06:00and whether we have that thing
• 06:02or not predisposes us to being
• 06:04resilient in the long run.
• 06:06So sure enough,
• 06:07there's a group that's represented with
• 06:09that line dot line there at the top
• 06:12of these three collections of lines.
• 06:14They are for whatever reason.
• 06:16Less resilient at baseline.
• 06:17They're less protected from this trauma,
• 06:19and sure enough they end
• 06:22up having chronic grief.
• 06:24A second theory on a second debate
• 06:26was that resilience was a process
• 06:27of how we adapt to our adversities,
• 06:29how we change with our new normals,
• 06:32and they would look at this graph
• 06:33and they'd say no resilience
• 06:35is defined in the middle.
• 06:37It's the way that recovery line is
• 06:38able to go from a relatively high
• 06:41level of distress to a relatively low
• 06:43one because they figure it out along the way.
• 06:45And if we wanted to intervene,
• 06:47we could move the needle by
• 06:49helping those folks to cope better.
• 06:52And then a final school of thought
• 06:54was that no,
• 06:55no resilience is defined on the
• 06:57right of this graph.
• 06:58It is only measurable after
• 07:00a particular trauma,
• 07:01and after a particular amount of
• 07:02time has passed and resilience
• 07:04after the death of a loved one
• 07:06might be different than resilience
• 07:08after a natural disaster or war,
• 07:10and you can only tell that
• 07:11someone is resilient or not based
• 07:13on some dichotomized outcome.
• 07:15So if you have a negative outcome,
• 07:17for example, you must not be resilient,
• 07:19and if the absence of that outcome,
• 07:22like chronic grief, is notable.
• 07:23Then you must be resilient 'cause you're
• 07:25doing better than we might expect.
• 07:28So for me as a clinician who was
• 07:31relatively early in my career
• 07:33as a pediatric oncologist,
• 07:34I felt like none of these
• 07:37theories matched to what I saw.
• 07:40And here are some of my questions.
• 07:42Number one is illness.
• 07:43An isolated event?
• 07:45Can you draw a single line on a
• 07:47cancer patients experience and
• 07:49say this is the moment that they
• 07:51have to define their resilience?
• 07:53Or is resilience a series or illness?
• 07:56A series of micro traumas and
• 07:58micro and macro events that can
• 08:01change someone's whole trajectory?
• 08:03Who's the unit?
• 08:04In Pediatrics, we look at patients.
• 08:06We look at their siblings.
• 08:07We look at their families with
• 08:08a look at their social supports
• 08:10in their school communities.
• 08:11Which of those units is the way
• 08:13I need to think about resilience
• 08:15and my defining resilience for
• 08:16the patient or for their family?
• 08:20Is there a difference between getting
• 08:22through adversity or growing from it?
• 08:24A lot of the resilience is an outcomes
• 08:26theory at the time was saying,
• 08:28you know you really have to
• 08:30show some benefit, some growth,
• 08:31some lesson learned,
• 08:32some some idea that you have improved
• 08:34from whatever your adversity is in
• 08:36order to demonstrate resilience,
• 08:37and I will tell you when I was
• 08:39starting this work I was working
• 08:41with a lot of bereaved families an
• 08:44I would ask them what do you think
• 08:46about this idea of resilience?
• 08:47What do you think about this idea
• 08:49that you're supposed to have grown
• 08:51from it and they would say you know
• 08:53it's pretty offensive that you think
• 08:54I'm supposed to somehow be better
• 08:56from having my child die from cancer.
• 08:57The fact that I got out of bed today
• 08:59makes me pretty darn resilient.
• 09:05Which outcomes matter into poems.
• 09:08If I'm a pediatric oncologist taking
• 09:09care of a teenager with cancer,
• 09:11I might say that that person is
• 09:13resilient because they're taking their
• 09:15oral chemotherapy as I prescribe it.
• 09:17Their mom might say they're
• 09:19resilient because they're going to
• 09:20school and maintaining their GPA.
• 09:22And the patient might say they're
• 09:24resilient because they've
• 09:25maintained their social network.
• 09:27Who's right?
• 09:30How do we integrate individual differences?
• 09:32Is there a one size fits all in resilience?
• 09:35Or does my resilience look somewhat
• 09:38different from someone elses?
• 09:40And finally, how do we integrate
• 09:43cultural differences into these ideas?
• 09:45This last one is important
• 09:47because this idea of resilience.
• 09:48This value that we put on
• 09:50it is very very Western.
• 09:52So here in the United States we
• 09:54say that things like that which
• 09:56doesn't kill you makes you stronger.
• 09:58No pain, no gain.
• 09:59We have this inherent respect for people
• 10:01who can pull themselves up from their
• 10:04bootstraps and lived this American dream.
• 10:06But that is really an American ideal,
• 10:08and it doesn't actually
• 10:10translate around the world.
• 10:12In Southeast Asia, resilience has been
• 10:14equated with the sense of balance.
• 10:15So instead of the stretchiness of a
• 10:17rubber band, it is the lack of stretching.
• 10:20It is the willingness or the ability of
• 10:23a material to stay within its shape.
• 10:25In South American cultures,
• 10:27resilience has been equated with
• 10:30and upholding the values.
• 10:32In Afghanistan,
• 10:33resilience has been equated with
• 10:35mastery in a particular skill set.
• 10:38In Native American cultures
• 10:40here in the United States,
• 10:41resilience President has been equated
• 10:44with spirituality and a constant
• 10:46quest for meaning and purpose.
• 10:48And what is fascinating is that
• 10:50in almost no language in the world
• 10:52is there a direct translation
• 10:54for the word resilience.
• 10:56In the places where this does exist,
• 10:58it is either translated back from English
• 11:00into whatever is the native language,
• 11:02based on an Americanization of their culture,
• 11:05or it is purely described as that physical
• 11:08science construct that I started with.
• 11:12So with this sort of swirling set
• 11:14up debates and this challenge that
• 11:16we were having as a community,
• 11:18figuring out what resilience was in
• 11:192013 at the International Society
• 11:21of Traumatic Stress Studies,
• 11:22there was a plenary panel where they
• 11:24got a whole bunch of resilience
• 11:26researchers up on stage,
• 11:27including George Bonanno,
• 11:28whose graph I just showed you.
• 11:30And this is a picture of a
• 11:32cultural anthropologist named
• 11:32Doctor Catherine Pantry brick.
• 11:34She's speaking here at a
• 11:35different organization,
• 11:36but she was one of the speakers at
• 11:38this plenary and what she does is
• 11:40what's called ethnographic studies,
• 11:41and she goes around the world and she.
• 11:44Lives in places that are
• 11:46going through adversity,
• 11:47and she bears witness,
• 11:48so that might be going to a
• 11:50place that has just undergone
• 11:52a war or a natural disaster,
• 11:54or folks who are living in poverty
• 11:56and what she's noticed in all of
• 11:58her work is that consistently across
• 12:00every adversity she has studied.
• 12:02Resilience is a process of
• 12:04harnessing the resources we need
• 12:06to sustain our well being.
• 12:09And more importantly,
• 12:11she says that in every single adversity,
• 12:13how people do that is they harness
• 12:16resilience, resources that always fall
• 12:18into one of these three categories.
• 12:20The first is our external
• 12:22resilience resources.
• 12:23These are things like our social support,
• 12:26our community, who helps us.
• 12:27This second is our internal
• 12:29resilience resources.
• 12:30These are traits like grit and
• 12:32hardiness as well as learn skills
• 12:34like how we adapt and cope and then
• 12:37finally existential resilience.
• 12:39Resources are things like meaning making,
• 12:41faith, spirituality.
• 12:42These sorts of inherent human questions
• 12:44that we ask when times get tough.
• 12:45Which is why is this happening to me,
• 12:47and what does this mean for my family?
• 12:53I will say that when I was starting to try
• 12:55to figure all of this out and think about
• 12:57what it meant for our patients with cancer,
• 13:00I really struggled with how to translate all
• 13:02of these different and conflicting theories
• 13:04into what we could do at the bedside.
• 13:06And at the same time there was a similar,
• 13:10if not parallel debate happening in the
• 13:12psychology and social Sciences about how
• 13:15we experience what we see in the world.
• 13:18And specifically, this is a theory
• 13:20called stress and coping theory,
• 13:21which essentially says that our
• 13:23perceptions influence our outcomes.
• 13:24So if we go through a stressful event,
• 13:26the first thing we do is we think about it.
• 13:29We appraise it, we say,
• 13:31is this a good or a bad thing for me?
• 13:34Is this catastrophic or is this manageable?
• 13:36And the answer to that appraisal question
• 13:38the veillance we apply to that response,
• 13:40translates to how we cope,
• 13:42how we feel and how we function.
• 13:45And the idea behind this theoretical
• 13:47construct is that if you can change
• 13:49the balance of that appraisal
• 13:50from catastrophic to manageable,
• 13:52for example, you can change your coping,
• 13:54emotional and functional outcomes
• 13:55to be more positive.
• 13:59So we first tested this idea of do
• 14:02people's perceptions of their own
• 14:03resilience translate to outcomes in
• 14:05a cross sectional study of bereaved
• 14:07and non grooved parents of children
• 14:09with cancer we had about 120 parents
• 14:11in this study and the first thing
• 14:13we noticed is that when you use a
• 14:16validated instrument to measure
• 14:18self perceptions of resilience,
• 14:19parents of kids with cancer feel less
• 14:22resilient than the rest of the population.
• 14:24There's something about having watched
• 14:26your kid go through cancer that makes
• 14:29you believe you are less resilient.
• 14:31And perhaps not more poignantly,
• 14:33parents who reported lower
• 14:35resilience were the ones who had
• 14:37ongoing psychological distress,
• 14:39sleep difficulties,
• 14:39an in abilities to express their hopes,
• 14:42and worries to their medical team.
• 14:47Around the same time in the
• 14:49gerontologist there was an analysis
• 14:51of the US Health and Retirement Study.
• 14:53Most of you know this.
• 14:54This is a long, ongoing cohort of
• 14:57American adults, ages 50 to 98.
• 14:58In this particular analysis and what
• 15:00they did here was they asked folks to
• 15:03fill out a survey about their self,
• 15:05perceived resilience,
• 15:06and then they monitor them overtime.
• 15:08And let's say you had two gentlemen who
• 15:10were matched in every way except one,
• 15:12believed he was resilient and
• 15:13the other doesn't,
• 15:14and they both go through their lives and
• 15:16they both fall down and break their hips.
• 15:19The gentleman who believed he was less
• 15:21more resilient for whatever reason,
• 15:22is going to get back up and return
• 15:25to his activities of daily living.
• 15:27The gentleman who believed he
• 15:29was less resilient again,
• 15:30for whatever reason,
• 15:31is not only going to not go to
• 15:33physical therapy and not return to
• 15:35his activities of daily living,
• 15:37but he's going to die sooner.
• 15:38His life expectancy is actually shorter.
• 15:43My research partner is a health psychologist
• 15:46and behavioral scientist named Joyce E.
• 15:48Frazier. This is some of her earlier work.
• 15:50She works with patients with diabetes,
• 15:52and here on the X axis is changes in
• 15:55diabetes related distress on the Y
• 15:57axis is changes in hemoglobin, A1C,
• 16:00or a marker of glycemic control.
• 16:03And here on those two dotted
• 16:04lines that are sort of diagonal,
• 16:06these are folks who believe again
• 16:08for whatever reason that they are
• 16:10less or moderately resilient,
• 16:12and for them changes in A1C level
• 16:14translate directly to changes in distress,
• 16:16meaning that the more swings there
• 16:18are in their distress levels,
• 16:20the harder it is for them to
• 16:22control their diabetes.
• 16:23In contrast,
• 16:23that more flat solid black line
• 16:25represents people who believe
• 16:27that they're more resilient,
• 16:28and for them even wide fluctuations
• 16:30in their distress don't translate
• 16:32to changes in a onesie.
• 16:36As a validation at we did another
• 16:38analysis at the Seattle Cancer Care
• 16:40Alliance among about 1800 patients who
• 16:42had received a bone marrow transplant.
• 16:44And here again, those who reported
• 16:47low resilience were the ones who went
• 16:49on to have more frequent missed work.
• 16:52Increased disability,
• 16:52lower quality of life,
• 16:54higher psychological distress,
• 16:55and more frequent medical complications
• 16:57during their survivorship period.
• 17:02So all of this sounded really
• 17:04interesting to me, and it felt like
• 17:06there was something there, but I still
• 17:08didn't know how to take these ideas,
• 17:10and these theories and identify
• 17:11him and operationalize resilience
• 17:13in the patients and families.
• 17:14I was working with.
• 17:15And so the next thing we did was
• 17:17what in the rest of the world
• 17:19would be called market research.
• 17:21It's sort of when you go directly to
• 17:23your stakeholder and you say hey,
• 17:24what should we do?
• 17:25What would you like to do?
• 17:27What would you use?
• 17:28What materials would be helpful to you?
• 17:30And in the Health Sciences we
• 17:31call this qualitative work.
• 17:32So similarly,
• 17:32we went directly to our stakeholders
• 17:34and we said we need to understand this
• 17:36concept from your own perspective.
• 17:37What would be helpful to you?
• 17:40We started with parents.
• 17:41We went back to that cohort of
• 17:44120 parents that we had and we
• 17:45started to listen to their stories
• 17:47while we surveyed them using
• 17:49validated instruments of their self,
• 17:51perceived resilience and what they
• 17:52shared with us is that resilience is,
• 17:54for example, who I was,
• 17:56what I learned, how I ended up,
• 17:58and what it all meant.
• 18:00This was apparent who sat next to
• 18:02me looking at that banana graph
• 18:03and saying no no.
• 18:04It's the left,
• 18:05middle and right and the whole thing for me.
• 18:09Or resilience is facilitated by who
• 18:11I am who helps me and what I believe
• 18:13this was a parent who identified
• 18:15those resilience resource categories
• 18:17and said all three of them matter.
• 18:21What was particularly interesting
• 18:23about this analysis is,
• 18:24as I said, we have these surveys,
• 18:26and we interviewed people
• 18:27at the end of the surveys,
• 18:29we asked folks to fill out a final
• 18:31page that essentially said tell
• 18:33us whatever else you think we need
• 18:35to know and parents wrote pages,
• 18:37pages and pages and pages of
• 18:39stories that they felt like were
• 18:41important for us to understand.
• 18:43And when we got these things in the Mail,
• 18:46we read them and I said to myself, huh?
• 18:49Here's resilience.
• 18:50There's resilience in these stories.
• 18:52And so a social worker, health services,
• 18:54researcher and I all of us read 120
• 18:56different transcripts blinded to each other,
• 18:59and we graded all 120 as
• 19:01either resilient or not.
• 19:02Did this person seem resilient
• 19:04to us in their words?
• 19:07And what was really interesting
• 19:08to us is that we agreed we,
• 19:11three blinded reviewers, agreed in a
• 19:13person's categorization of resilience.
• 19:14Our labeling of their resilience
• 19:16100% of the time.
• 19:17120 out of 120 times.
• 19:19We agree.
• 19:21And then when we looked at how our
• 19:23impressions of their resilience aligned
• 19:25with validated patient reported outcomes,
• 19:27we were wrong.
• 19:28Half the time we were as good
• 19:30as a coin toss in predicting
• 19:33somebody else's resilience.
• 19:34When we looked more carefully,
• 19:36we were a little bit better at
• 19:38recognizing someones distress.
• 19:39Our impressions of their lack
• 19:41of resilience aligned with their
• 19:43measurement of their own distress
• 19:45and what that tells me is 2 things.
• 19:47Number one we in medicine tend to
• 19:50assume someone is not resilient when
• 19:52they're having a hard time and #2.
• 19:54We in medicine probably shouldn't
• 19:56assume someone is resilient
• 19:58or not unless we ask them.
• 20:02The next thing we did was we did
• 20:04this same stakeholder engaged work
• 20:06with adolescent and young adults,
• 20:07or ay ay patients,
• 20:08and here I want to introduce you
• 20:10to a young man named Daniel Maher.
• 20:12He was one of our first key stakeholders,
• 20:14which means that every time
• 20:16I did an interview or every
• 20:17time I was developing an idea,
• 20:19he was one of the people I would sit
• 20:21down and talk to you about it and say,
• 20:24hey, am I getting this right?
• 20:25Does this align with your experience?
• 20:27Daniel had met a static and
• 20:29ultimately progressive Ewing sarcoma,
• 20:30and he died from his cancer several
• 20:31years after we started working together.
• 20:34And towards the end of his life I started
• 20:36asking him about his own resilience
• 20:38and how I should continue to tell
• 20:40his story or how it translated to the
• 20:41resilience of other folks with cancer.
• 20:43And he said Abby cancer happened
• 20:45to me for a reason.
• 20:46It's to help others like me understand
• 20:49and to make it easier for them somehow.
• 20:52And so, with Daniel's help,
• 20:53we interviewed multiple teens and
• 20:55young adults with cancer from
• 20:56the time they were diagnosed.
• 20:58Three months later,
• 20:58six months after that,
• 21:00a year after that and so forth,
• 21:02to the point that now,
• 21:03of course,
• 21:04without Daniel,
• 21:04we are continuing to interview
• 21:06some of these adolescent and young
• 21:08adult patients 10 years later.
• 21:10And what we hear from them
• 21:11are things like this.
• 21:13Resilience depends on the
• 21:14person and their experiences.
• 21:15It's kind of like exercising.
• 21:16You have to gain some muscle
• 21:18before you run a race,
• 21:19personal strength or resilience
• 21:20is how you rebound from something
• 21:22like being able to fight back.
• 21:24It can be taught.
• 21:25It should be taught.
• 21:29What's interesting to me about this analysis,
• 21:31which now includes hundreds and
• 21:32hundreds of hours of interviews
• 21:34with teens and young adults,
• 21:35is that at the beginning,
• 21:37many of these young patients don't
• 21:38know what the word resilience means,
• 21:40or they can't figure out what
• 21:41it is that they're doing to
• 21:43get through their experience.
• 21:44But once they do, once they figured out once,
• 21:47they can say, oh, this is what I do.
• 21:50They seem to latch on to that
• 21:52particular resilience resource,
• 21:52and they carry it forward.
• 21:54So even five or ten years later,
• 21:56they'll say, I don't know.
• 21:57This is what I do when times get tough.
• 22:00It's always what I've done.
• 22:01This has always been my thing.
• 22:06We distill those hundreds of hours of
• 22:08interviews into this particular idea of
• 22:10what helps somebody contribute to or
• 22:12inhibit their resilience at any given
• 22:14moment and for teens and young adults.
• 22:16It really does feel like a Teeter totter and,
• 22:19at any given moment, the scales can tip
• 22:21towards their feeling resilient or not.
• 22:24The things that contribute to that
• 22:26resilience are the sense of being able to
• 22:28manage their stress and idea of having a
• 22:31sense of purpose or goals to look forward to,
• 22:33being able to stay positive,
• 22:35being able to find meaning from their
• 22:37experience, and maintaining a sense
• 22:39of connection and social normalcy.
• 22:42And when we thought about these
• 22:43ideas in these constructs,
• 22:44we noticed two things.
• 22:46Number one,
• 22:47these top for stress management goal setting.
• 22:49Staying positive and meaning making.
• 22:51These are all things that we can
• 22:53teach individually to patients.
• 22:55Whereas a social support type of program
• 22:57felt different and #2 all of these
• 23:00things map back onto those resilience
• 23:02resource categories that Catherine
• 23:03Patrick had described so long ago.
• 23:08Which leads us to that,
• 23:09promoting resilience and stress
• 23:11management or PRISM program.
• 23:13And the first thing we debated when
• 23:15we were thinking about what to do
• 23:17next was where to start on the left.
• 23:19Here you're looking at one of our
• 23:20parent quiet rooms on the edges of our
• 23:22adolescent and young adult oncology floor.
• 23:24We have these separate spaces for
• 23:25parents to get away and have some time
• 23:28by themselves if they need to leave
• 23:29the patient room and on the right,
• 23:31you're looking at one of our
• 23:33other key stakeholders.
• 23:34So when we were thinking about this,
• 23:36we first thought about parents
• 23:38and we thought you know parents,
• 23:40particularly kids of parents of cancer
• 23:42have poor psychosocial outcomes.
• 23:43So specifically one in seven
• 23:44appearance of children with cancer
• 23:46will have such high distress that
• 23:48they can't take care of themselves
• 23:49or the other children in the home.
• 23:51And if you're a caregiver of
• 23:53a patient with cancer,
• 23:54it's really hard to access
• 23:56traditional mental health.
• 23:57Supportive care parents don't
• 23:58want to leave their kids bedside,
• 24:00as all of us know,
• 24:01it's incredibly difficult to network
• 24:03mental health services in the community.
• 24:05And we thought,
• 24:06wouldn't it be great if we could
• 24:07just provide something to parents
• 24:09here within the Children's Hospital
• 24:11so that we could support them?
• 24:13On the flip side,
• 24:14adolescents and young adults have poor
• 24:16psychosocial outcomes compared to
• 24:17younger pediatric or older adult patients.
• 24:19They have some of the worst
• 24:21psychosocial outcomes that we can find.
• 24:22They have higher rates of poor
• 24:24mental health and survivorship.
• 24:25They're less likely to get a
• 24:27job or get married.
• 24:28They are less likely to be paid the same
• 24:30as their otherwise age matched peers.
• 24:33They have higher rates of suicide
• 24:34and other serious mental health,
• 24:36comorbidities,
• 24:36and the idea that we had was
• 24:39maybe we could fix some of those
• 24:41problems if we started now.
• 24:43We also know that teens and young adults
• 24:44also have challenges with traditional
• 24:46methods for mental health support.
• 24:48So,
• 24:48for example,
• 24:49teens with chronic illness,
• 24:50only a third of them will access
• 24:52in hospital available mental
• 24:54health services and of the ones
• 24:55who do only a third stay in.
• 24:57And when asked why you aren't using
• 24:59these services that are available to you,
• 25:02most teens and young adults will
• 25:04say either the stigma or the
• 25:07time commitment is too much.
• 25:09But at the end of the day,
• 25:11when we thought about where to start,
• 25:12we felt we remembered that idea that
• 25:14I shared with you about how a lot of
• 25:17the teens and young adults we meet
• 25:18don't yet know how to be resilient.
• 25:20They haven't had the life skills yet,
• 25:22or no life opportunity yet to
• 25:24develop those resilience resources.
• 25:25And our curiosity was maybe we
• 25:26could get in the door and start
• 25:28teaching these skills right away.
• 25:30And if we did that,
• 25:31could we change some of
• 25:33these downstream outcomes?
• 25:35So that leads me to PRISM,
• 25:37which teaches and targets those
• 25:39same four resilience resources that
• 25:40we had heard from teens and
• 25:42young adults were important.
• 25:43The first thing we teach is
• 25:46stress management skills.
• 25:47This includes three mini
• 25:48skills within one session.
• 25:50The first mini skill is a deep breathing,
• 25:53simple relaxation technique.
• 25:54It helps people quiet their minds so they
• 25:57are receptive to additional learning
• 25:58and then the next too many skills are
• 26:01progressive mindfulness exercises.
• 26:03One to help deepen your relaxation
• 26:05and two to become aware of
• 26:08stressors without judgment.
• 26:09The next thing we do is
• 26:11a goal setting module.
• 26:13Here we teach what's called a smart
• 26:15goal that stands for specific,
• 26:17measurable, actionable,
• 26:17realistic and time dependent goals.
• 26:19We know from this psychology
• 26:20and social Sciences that any
• 26:22tiny forward progress towards an
• 26:24achievable and realistic hope is a
• 26:26very positive psychological anchor.
• 26:27And so we help a team.
• 26:29Translate quote.
• 26:30I just want to get through my
• 26:32cancer to something that is
• 26:35actually actionable and measurable.
• 26:36The next thing we do is what's
• 26:38called positive re framing
• 26:39or cognitive restructuring.
• 26:41And here we teach 2 mini skills.
• 26:43The first is how do you recognize
• 26:45all of that negative catastrophic
• 26:46self talk that can keep us up in
• 26:49the middle of the night and the 2nd
• 26:51is how do you change the appraisal?
• 26:53The valence of that appraisal
• 26:56from catastrophic to manageable.
• 26:58The complementary knice of mindfulness,
• 27:00for example,
• 27:00recognizing what's stressing
• 27:01you without judgment and then
• 27:03positive re framing,
• 27:04which is actually judging your thoughts and
• 27:06making them manageable and less catastrophic,
• 27:08is a really important psychological
• 27:10combination for helping people
• 27:12cope with adversity.
• 27:13And then the final thing,
• 27:14the anchor of all of this is meaning making,
• 27:17and here we help teens and young adults
• 27:20with the exercise of identifying benefits,
• 27:22gratitude,
• 27:23purpose, legacy.
• 27:23It's sort of asking that existential
• 27:26question of why is this happening?
• 27:27What are you going to be because of this?
• 27:30What matters to you?
• 27:31Who do you want to be next
• 27:33week when this is all over?
• 27:37After all, four of those sessions
• 27:39we have the optional meeting with
• 27:41the family called coming together,
• 27:43and this is essentially designed to
• 27:45help the patient share with loved ones.
• 27:47What worked for him or her and to
• 27:50help family members and caregivers
• 27:52reciprocate and reinforce the skills.
• 27:55And then after all sessions in between them,
• 27:57we offer opportunities to practice
• 27:59with boosters and worksheets.
• 28:01Prison, like many psychosocial interventions,
• 28:03is what we call Manualized.
• 28:04That means we have a very
• 28:06reproducible script.
• 28:07We measure Fidelity to make sure
• 28:08it's being delivered in the
• 28:10same dose and delivery style,
• 28:11and we train all of our coaches with at
• 28:14least 8 hours to make sure that they are
• 28:18certified and fluent in the program.
• 28:20All of our coaches are college grads.
• 28:23Some of them have PHD's,
• 28:25but by design we intended this to be
• 28:27coachable by folks who could be lay
• 28:30stuff so that it's more translatable
• 28:33across different institutions.
• 28:35The next thing we did having
• 28:37designed this was we tested prisms
• 28:38feasibility amongst adolescents and
• 28:40young adults with either diabetes,
• 28:42cancer or cystic fibrosis,
• 28:44and we notice that enrollment was very high,
• 28:4683% across the program with
• 28:48high completion rates,
• 28:49and each of these different groups of
• 28:52patients asked us to do PRISM differently.
• 28:55So for example,
• 28:56patients with diabetes here in Seattle
• 28:58will come from thousands of miles away.
• 29:00In Alaska.
• 29:00Our catchment area includes
• 29:01Alaska all the way to Wyoming,
• 29:03and so folks will come into
• 29:05Seattle for their diabetes.
• 29:06Care for one annual Big long day,
• 29:08and then the rest of their care
• 29:10is delivered via Tele Health.
• 29:11And they said, you know,
• 29:13we can sit with you for a long
• 29:15time on one day,
• 29:16or we want to do this through video,
• 29:19but we don't want multiple sessions overtime,
• 29:21and so patients with diabetes
• 29:22preferred to get it all in one chunk.
• 29:25In contrast,
• 29:26patients with cancer and cystic
• 29:27fibrosis tend to be in the hospital.
• 29:29They are often isolated and they said,
• 29:31you know, we want you to come visit us.
• 29:33Well, we're here in the hospital.
• 29:35We want you to sit at our bedside,
• 29:37and we'd rather break up the intervention.
• 29:39All those four sessions into
• 29:40separate four sessions delivered
• 29:41every other week or so.
• 29:45When we asked all of these
• 29:46young folks what they thought,
• 29:47their qualitative feedback or things
• 29:49like this, this is so helpful.
• 29:50I wish we'd done this sooner.
• 29:52Yeah, I was actually telling my
• 29:53friends about it afterwards and
• 29:55they said they would try it out.
• 29:56I think it's good techniques to use.
• 29:58Definitely, I'm teaching my little sister.
• 30:00I'm sure it can help her too.
• 30:02Or I used to be in the hospital
• 30:04and think it was a waste of time,
• 30:05not want to be there doing things
• 30:07like this make you realize you're
• 30:08here to make yourself feel better.
• 30:12So the next thing we did was a
• 30:14randomized control trial amongst 92
• 30:16adolescents and young adults with cancer.
• 30:18These are all of the outcomes
• 30:19we measured in that study.
• 30:21The zero line means there was no
• 30:23difference between patients who received
• 30:25usual care and those who received PRISM.
• 30:27And by the way, usual carrot,
• 30:29our center includes an assigned social
• 30:31worker for every single family available,
• 30:33psychology services and a whole host of
• 30:35other embedded psychosocial services.
• 30:37So moving left to right on this graph,
• 30:39you'll notice that resilience scores
• 30:41went up with the intervention.
• 30:43Distress scores went down with
• 30:44the intervention.
• 30:45Hope went up benefit finding went
• 30:48up and quality of life went up.
• 30:50Perhaps more importantly to me
• 30:52that D there is a statistically
• 30:54using behavioral science is called
• 30:56an effect size and by convention
• 30:58anything greater than .3 is considered
• 31:01clinically significant and in every
• 31:02single way that we could look,
• 31:05there were clinically significant
• 31:07changes in these outcomes of interest.
• 31:10But we weren't looking for was this
• 31:13six months after the study started.
• 31:15We looked at the surviving 74 patients
• 31:17who were still available and we
• 31:20looked at their clinical criteria
• 31:22for depression and we notice that
• 31:2421% of the usual care patients
• 31:26versus 6% of the prison patients
• 31:28met criteria for depression,
• 31:29which translated to a 90% reduction
• 31:31in the odds of developing depression
• 31:34during those first six months
• 31:35of their cancer experience.
• 31:40The next thing we did was we tried to
• 31:42figure out are things getting better
• 31:44or they staying the same like what's
• 31:46happening when you get prison versus
• 31:48usual care and so each of these pairs
• 31:50of graphs has the usual care group
• 31:52on the left and PRISM on the right,
• 31:54and you're looking at clusters
• 31:55of resilience scores.
• 31:56Hope benefit finding,
• 31:57quality of life and distress
• 31:59moving left to right.
• 32:00In red means that their scores
• 32:02deteriorated overtime in pink means
• 32:04they started at risk and stayed there.
• 32:06Light blue means they were well
• 32:08at the beginning and stayed there.
• 32:10An blue means they got better
• 32:13overtime and the takeaways here
• 32:14are that in every single scenario,
• 32:16folks who got prism improved
• 32:18and folks who didn't get prison
• 32:20were more likely to deteriorate.
• 32:25Finally, anecdotally, this is one of
• 32:27my favorite findings from this study.
• 32:29We gave each of the participants in each
• 32:32arm $50 at the end of their participation,
• 32:35and then we got this in the Mail.
• 32:39This is a letter that said, Dear Abby,
• 32:40thank you so much for the $50.00 gift card.
• 32:42I had a great time doing this study and
• 32:44learn a lot of great life skills that I
• 32:46will continue to use for a long time.
• 32:47So thank you so much for letting
• 32:50me participate.
• 32:51Like the perfect example of
• 32:52a well mannered teenager.
• 32:57The other thing we heard from patients was,
• 32:59hey, my mom needs this too for my dad
• 33:01needs us too and we heard from parents.
• 33:04Hey, can you do something like this?
• 33:06For me this seems really helpful
• 33:07and so we went back to that
• 33:09original question we had about.
• 33:11How do we support parents and we said,
• 33:13well maybe we should have tried that
• 33:15also and we adapted the program using
• 33:17the same for PRISM skills but with
• 33:19language that was more appropriate
• 33:20for parent experiences and we piloted
• 33:22the program amongst 24 parents.
• 33:24And again they reported that
• 33:25it was very valuable.
• 33:26Qualitatively,
• 33:26they said this should be part
• 33:28of every parent's toolbox.
• 33:29These skills help us to take
• 33:31better care of our kids.
• 33:33And before and after the intervention,
• 33:35their resilience went up in
• 33:36their distress scores went down.
• 33:40The challenges, though,
• 33:41that parents reported to us was
• 33:43that it was really hard for them to
• 33:45get away from their kids bedside.
• 33:46This was exactly our concern
• 33:48when we started to do this work,
• 33:49and so we tried to brainstorm what would
• 33:51be an easier way for parents to do this.
• 33:54And maybe it would be a symposium
• 33:56style coaching program where we
• 33:57have a whole lot of parents.
• 33:59Together they sit with us for four hours
• 34:01and we deliver the program that clap.
• 34:03And so we we hold a symposium.
• 34:05We had about 72 people show up at the door.
• 34:08We had turn folks away and we put
• 34:10them at Round Top tables in a big
• 34:12room and we did group coaching of the
• 34:14PRISM intervention of RFR Hour period.
• 34:1792% of parents said they gained
• 34:19new insights and skills.
• 34:2098% said it was easy to understand
• 34:22and 100% felt like the group format
• 34:26was helpful to them.
• 34:28So then we said, OK, well,
• 34:30what's better group coaching
• 34:32versus usual care or one on one?
• 34:34Coaching versus usual care.
• 34:35So we did another randomized trial
• 34:37this time amongst 102 parents or
• 34:39caregivers of children with cancer.
• 34:41And here you're looking at a forest
• 34:43plot of usual care compared to
• 34:45one on one coaching.
• 34:46And what we found was that the
• 34:49intervention when delivered one on
• 34:51one improved parent resilience and
• 34:53benefit finding compared to usual care.
• 34:56But when we compared group to usual care,
• 34:58we actually couldn't see any differences,
• 35:00but in outcomes it looked like the
• 35:03group delivery didn't seem to have an
• 35:05effect on parent resilience or any
• 35:08of our other outcomes of interest.
• 35:10And there's more to the story than what
• 35:13we could see in those quantifiable data.
• 35:16So I want to share her story
• 35:18with you of a particular parent.
• 35:20This was a father whose daughter
• 35:22died unexpectedly about two weeks
• 35:24after his group PRISM session.
• 35:26And when she died,
• 35:27we as of study team were trying
• 35:29to figure out you know,
• 35:31how do we re engage this dad?
• 35:33Do we?
• 35:33What would his resilience skills
• 35:35scores look like in the context of
• 35:37this immediate death of his daughter?
• 35:39And so at the end of the day,
• 35:41we decided to reach out to him
• 35:43and express our condolences and
• 35:44our gratitude and say hey,
• 35:46we're here and he wrote back and he said,
• 35:49you know,
• 35:49I'm actually really happy to hear from you.
• 35:52I talked with my group and
• 35:54with their permission,
• 35:55I'm going to share with you.
• 35:57Email string that we have been
• 35:59had going around.
• 36:01He forward this email This is
• 36:02him writing to his group.
• 36:03He says, I think of all of you.
• 36:05Often I've had many chances to use
• 36:08the coping strategies we learned.
• 36:09And then one by one he lists every
• 36:12single one of those resilient
• 36:14skills and how they helped him.
• 36:16He goes on interesting Lee.
• 36:18I feel better as I type this.
• 36:20I don't have an extensive support network.
• 36:22It's literally myself and my wife.
• 36:23This is the only time I've
• 36:25talked about what I'm feeling.
• 36:27Thank you all for reading
• 36:27this and staying in touch and
• 36:29helping each other through this.
• 36:34My takeaway, by the way from that
• 36:36experience with that Dad is 2 things.
• 36:38One I am not convinced that the
• 36:41group by itself isn't doing something
• 36:43'cause clearly it helped this father.
• 36:46I also think that the cumulative shared
• 36:48grief of watching another parents
• 36:50child be ill was something we hadn't
• 36:53anticipated and so that idea of how do
• 36:55we support families needs to include?
• 36:57How do we examine this shared grief
• 37:00in this shared stress that can
• 37:02come from a group intervention?
• 37:05Which leads me to what's next for
• 37:07PRISM and where we're moving forward.
• 37:09We have a whole bunch of different
• 37:11projects in progress,
• 37:12including several multi site trials
• 37:14for adolescents and young adults
• 37:16with advanced cancer or diabetes
• 37:18in the advanced cancer studies.
• 37:19We're looking both at the integration
• 37:21of Advanced care planning, for example,
• 37:23for teens with incurable cancer.
• 37:25Can Prism help be a platform for
• 37:28integrating larger conversations
• 37:29about goals of care,
• 37:30and how does it influence anxiety,
• 37:32depression,
• 37:32and other mental health outcomes
• 37:34amongst kids and caregivers who are
• 37:37receiving bone marrow transplant?
• 37:38We're doing a dissemination implementation
• 37:40pilot here at Seattle Children's,
• 37:42where we're essentially putting the program
• 37:43Alex to make it publicly available,
• 37:45and we're trying to see how
• 37:47different clinical teams use it.
• 37:49We are adapting their program for
• 37:51adolescents with chronic pain.
• 37:52The Pi of that study is at the
• 37:54Children's Hospital of Philadelphia.
• 37:56We have an adaptation for patients of
• 37:58adult with adult congenital heart disease.
• 38:00So folks who are transitioning from
• 38:02pediatric to adult care in the
• 38:04setting of congenital heart disease,
• 38:06that pie is here at the University
• 38:08of Washington.
• 38:09We have a different investigator,
• 38:10Doctor Crystal Brown who is using
• 38:12PRISM to help support caregivers who
• 38:14experienced racism in critical care
• 38:16units here in the United States.
• 38:18We have a different investigator,
• 38:19Amoeba O'Donnell,
• 38:20who is studying Prism adaptation for
• 38:22health care workers during the pandemic.
• 38:24We have preliminary data from that
• 38:26study which essentially shows that
• 38:28PRISM compared to usual care for
• 38:30healthcare workers on the front lines,
• 38:32improves their burnout and improve
• 38:33their resilience in significant ways.
• 38:35And then finally, we have an investigator,
• 38:37Kiske Smith,
• 38:38who is translating the program
• 38:40and implementing it here in the
• 38:42Seattle Public Schools for kids.
• 38:44We're schooling at home.
• 38:45This is for school aged kids who
• 38:47are really struggling with this new
• 38:49world that we live in and helping
• 38:51them to manifest their own resilience
• 38:53resources early on in their childhood.
• 38:55Within all of these studies,
• 38:57we have analysis to evaluate cost
• 38:58effectiveness, adherence, for example,
• 39:00to oral chemotherapy caregiver well being,
• 39:02resource utilization,
• 39:02optimal delivery strategies.
• 39:03So is it better to do it all at once,
• 39:06or is it better to do it one on line?
• 39:10How can we integrate digital health?
• 39:12And finally,
• 39:12we're looking at biomarkers of
• 39:14stress and resilience and.
• 39:15Gene expression profiles to sort of,
• 39:18say,
• 39:18can we change the the way we
• 39:21experience physiologic stress and
• 39:23its downstream effects on our health?
• 39:28Last, the thing that I think about a lot
• 39:30these days is how can we get PRISM into the
• 39:33hands of patients and families who need it.
• 39:35You can see we are studying this a lot.
• 39:37It is this huge platform of my research
• 39:39program and I'm getting to the point where
• 39:41I just want this thing out there and I'm
• 39:43trying to figure out how to do that.
• 39:45This picture is a picture of the original
• 39:47worksheets that we developed for the
• 39:49intervention when we first started doing it.
• 39:51These are the ways that people can
• 39:53practice the skills between sessions
• 39:55and when we go to our stakeholders
• 39:56and we asked him about this.
• 39:58They say, you know, hey,
• 39:59this isn't how we learn anymore.
• 40:01Everything's on line and be
• 40:02when we really need prism.
• 40:03It's 2:00 o'clock in the morning
• 40:05when we wake up and we're having
• 40:07those negative thoughts in our heads.
• 40:08I don't want to go get a worksheet,
• 40:11I want to pick up my smart phone
• 40:13and have prism at my fingertips.
• 40:15And so we listened to our stakeholders
• 40:17and based on their feedback,
• 40:18we created an app that would help them
• 40:21practice their skills in real time.
• 40:24I'm just going to share with you the
• 40:26quick introductory module of what
• 40:27the app looks like when a patient
• 40:29opens it on their phone.
• 40:30This is imagine the first time you're opening
• 40:32it and the orientation to the program.
• 41:15So once folks of how that introduction
• 41:17and they use the app as a compliment
• 41:20to the in person coaching that we do,
• 41:22or the Tele health coaching that we now do,
• 41:25they can personalize their homepage.
• 41:27They can upload their goals,
• 41:28they can sync it with their calendar,
• 41:31so it sets the little reminders for
• 41:33things that they have staged as a
• 41:35way to accomplish that longer goal.
• 41:37They can upload pictures alot,
• 41:39Instagram and ways to remember particular
• 41:41moments of gratitude and so and they
• 41:43can track their own sense of stress
• 41:45and resilience within the app and
• 41:47see how the different modules help.
• 41:49Alleviate those senses of stress or bolster
• 41:52those senses of resilience in real time.
• 41:57So before I close, I have a couple
• 41:59of final thoughts about resilience.
• 42:01The first is what we've learned
• 42:03during the last year of the pandemic.
• 42:06When we started, I had this
• 42:08idea that resilience was linear.
• 42:09I had this idea of that banana graph
• 42:12that there was a line we would follow
• 42:14as we marched through our lives,
• 42:16and I don't think that's true.
• 42:19I think resilience is actually
• 42:20something that that exists in phases,
• 42:22and the first phase is what
• 42:24I call getting through.
• 42:25This is where we literally put 1
• 42:27foot in front of the other where we
• 42:30literally say I got out of bed today.
• 42:33It reminds me of that bereaved mom.
• 42:34I told you about at the beginning of
• 42:36this talk, the one who said, yeah,
• 42:38I did get out of bed today and that
• 42:39makes me pretty darn resilient,
• 42:41because if it were me and my
• 42:42childhood childhood just died,
• 42:43I don't know if I'd be able to do the same.
• 42:46However, that was ten years ago,
• 42:48and if I might met her and talk
• 42:50to her today and she still said,
• 42:52well, I got into bed today,
• 42:53then I would worry then I would
• 42:55say I don't know if you're still
• 42:57resilient in my mind.
• 42:58I think you need to do more.
• 43:01And so the next phase,
• 43:02if you will,
• 43:03of how we move through this
• 43:05experience of resilience,
• 43:06is when we start to do the work
• 43:09of harnessing our resources.
• 43:11This is where we begin to leverage
• 43:13those individual community and
• 43:14existential resilience resources.
• 43:15We start to actually figure
• 43:18out how do we move forward.
• 43:21In between getting through
• 43:22and harnessing resources,
• 43:23the psychological thing we do is we
• 43:25start to appraise or assess the situation.
• 43:28What have I done before?
• 43:29Who helps me?
• 43:30How am I going to get through this?
• 43:33We actually start to articulate in our
• 43:35own minds whether we know it or not.
• 43:37What needs to happen for us to
• 43:39move from just simply getting out
• 43:41of bed to starting to thrive?
• 43:45And then the third phase, if you will.
• 43:48Of this overlapping Venn diagram
• 43:50is when we look back and learn.
• 43:52This is when we finally have the
• 43:54brain space to reflect on what
• 43:56we learned and what it means.
• 43:57Sometimes that can be in a day.
• 44:00Sometimes that can take us years,
• 44:01but ultimately almost all human
• 44:04beings will have this capacity to
• 44:06think about what just happened to
• 44:08them and what it means to them.
• 44:10In between harnessing those resources
• 44:12that active activation of resilience
• 44:14and when we start to reflect,
• 44:16we build our identity and I and our
• 44:19purpose we start to ask ourselves
• 44:22the question of who we want to be.
• 44:25And in between getting through
• 44:26and looking back and learning,
• 44:27we are appraising the situation again.
• 44:29What does this mean for us?
• 44:34Practically. As folks will hear all
• 44:36of this and then say to themselves,
• 44:39what am I going to do?
• 44:40I'm seeing a patient this afternoon.
• 44:42Here's some thoughts.
• 44:43First of all, use your palliative
• 44:45care psychosocial chaplaincy.
• 44:45Child live any other supportive
• 44:47care team that you have.
• 44:48This is their bread and butter.
• 44:50This is what they do in
• 44:51their regular assessments.
• 44:52Leverage that experience and
• 44:53rely on it as part of your team.
• 44:58As clinicians, we need to help
• 45:00families identify their resources
• 45:01and strengths and their struggles.
• 45:03We need to promote the first
• 45:06two and normalize the third.
• 45:08Just because people are having a hard
• 45:09time does not mean they are not resilient.
• 45:11That means they're normal.
• 45:14Our job is to help them
• 45:16diversify their portfolios.
• 45:17Our job is to help them recognize the
• 45:19things that they already have in their
• 45:21Arsenal or resilience resources so
• 45:23they can go from getting through to
• 45:26starting to harness those resources.
• 45:29And how I do that? Is this?
• 45:31I ask about thoughts I'll say.
• 45:33How do you see your experiences?
• 45:35That helps me understand their
• 45:37existential resilience resources.
• 45:38I ask that actions.
• 45:39What do you do when things are hard?
• 45:42What have you done before?
• 45:43When times have gotten tough?
• 45:45This helps me identify their
• 45:46individual resilience, resources.
• 45:47And finally I ask about supports.
• 45:49Who supports you?
• 45:50This is me taking a sort of
• 45:52categorization and or an inventory of
• 45:54their social resilience, resources.
• 45:56And together I can sort of recognize
• 45:58which of those three buckets
• 45:59is relatively full,
• 46:01or which is relatively empty.
• 46:02And I can help them articulate
• 46:04those resources they'll need.
• 46:08Last I'm going to close with
• 46:10advice from Daniel Maher.
• 46:11Who said you have to work sometimes
• 46:14to be happy to move past the hard?
• 46:16The sad the scary. We all do it.
• 46:21But maybe you need help sometimes.
• 46:23Maybe you need a little bit of
• 46:25learning or a little bit of strength,
• 46:27or remembering what matters
• 46:28or a little after.
• 46:30Poor little love.
• 46:32Figure out what you need and hold on.
• 46:35But please,
• 46:36whatever you do live the time you
• 46:38have with meaning and purpose.
• 46:45I want to thank the many members of the
• 46:47palliative care and Resilience Lab,
• 46:48in particular, Joy C.
• 46:50Fraser, who is my research partner
• 46:51and the Co creator of Prism.
• 46:53We have many mentors,
• 46:54advisors and collaborators who
• 46:55have helped us along the way,
• 46:57as well as multiple funders that
• 46:58I'd like to thank and thank you to
• 47:01all of you for being here today.
• 47:02I'm going to stop sharing my
• 47:04slides so that we can have some
• 47:06time for questions and answers.
• 47:07Appreciate you all.
• 47:08Thank you.
• 47:15Abby, thank you so much for such
• 47:17a powerful and inspiring talk.
• 47:19While we're waiting for folks to
• 47:21pop their questions into the chat,
• 47:23I thought maybe we could start out
• 47:26with a couple of my questions.
• 47:29Uhm, what sorts of obstacles
• 47:31early on did you encounter?
• 47:33Or you know where?
• 47:34There are people who were naysayers
• 47:37or disbelievers in this approach?
• 47:39And how did you?
• 47:40How did you overcome some of those
• 47:42obstacles or address people's concerns?
• 47:46Oh gosh, this is such a good
• 47:48question pressing it, I think.
• 47:51Philosophically,
• 47:51I guess I have two answers.
• 47:53One is, believe in what you're doing.
• 47:56So I one of the first people I talked
• 47:58to here in Seattle about this idea is
• 48:01someone who I really respect and admire.
• 48:03And she said I don't think
• 48:05resilience is changeable.
• 48:06I just don't think that that's
• 48:08going to be a thing.
• 48:10I don't think this is a good idea,
• 48:13and as a young.
• 48:14Faculty member I was devastated,
• 48:16but I felt like my idea still needed some.
• 48:19I don't know unpacking so I moved
• 48:21around to find mentors who would
• 48:23support me and I think for early
• 48:25career faculty that piece of advice
• 48:27is really necessary that you need
• 48:29someone who believes in you and
• 48:31you need people who will also help
• 48:33you find holes in your project.
• 48:35Which leads me to the next thing you know.
• 48:39Science is defined by failures
• 48:40we learn from those failures.
• 48:42And that's maybe one of the
• 48:43messages of resilience too.
• 48:44But you need to be around
• 48:46people who will push you.
• 48:48Who will help challenge you.
• 48:49Who will help you think about the ways
• 48:51that something might or might not work,
• 48:53and so that same person who
• 48:55made me question it is somebody
• 48:57who I now really rely on.
• 48:59When I have an idea 'cause I know
• 49:01she's going to be like Nope,
• 49:03still a bad idea.
• 49:04Abby and that helps me think
• 49:06around all of the barriers so that
• 49:08I can continue to move forward.
• 49:11The last thing I think though
• 49:13about all of this is.
• 49:14Finding meaning and purpose in the work
• 49:16that we do is critically important.
• 49:18As clinicians as scientists would
• 49:20you have to have the passion and the
• 49:22belief that what you were doing matters?
• 49:24And for me this is bad for other
• 49:26people that we can be taking
• 49:28care of a patient or writing a
• 49:30paper or mentoring or teaching.
• 49:32But the thing that we all need to
• 49:34do is to figure out what brings
• 49:36us value in our lives and how
• 49:38can we continue to champion that.
• 49:46Thanks so much. I'm still waiting
• 49:48for anyone who has questions.
• 49:50In the Meanwhile I of course have so many.
• 49:55One thing I was wondering
• 49:57about in terms of scalability.
• 50:00So what do you say now with this
• 50:03robust intervention that now
• 50:05has a mobile option as well?
• 50:08What have you said to folks at
• 50:10various institutions who may be
• 50:12interested in bringing a similar
• 50:14intervention to their institution?
• 50:19Soon.
• 50:22Two things I want.
• 50:24I want prism out there at like.
• 50:27I just think that it has potential
• 50:29and I would welcome anybody who wants
• 50:31to help me figure out how to do that.
• 50:34And as folks in this audience will know.
• 50:38Doing anything takes
• 50:39resources and money and time,
• 50:40and so one of the things we have
• 50:43learned in this pilot study that
• 50:44we're doing here in Seattle is,
• 50:46even if we make it available,
• 50:48people don't use it if they don't have
• 50:50the human resources to deliver it.
• 50:52So right now,
• 50:53it's just it's designed to be
• 50:55an in person coaching program
• 50:56because I think that that matters.
• 50:58I think that human connection
• 51:00is really necessary.
• 51:03But we're learning that that
• 51:04might be a huge huge barrier,
• 51:06and so the next study where we're
• 51:08designing right now is in fact trying
• 51:10to ask the question that you just asked
• 51:12how much digital can we get away with?
• 51:14How much can we get away with taking
• 51:16away the in person component?
• 51:18Will that compromise the
• 51:19efficacy of the program?
• 51:20I think the answer is probably yes,
• 51:22but it turns out funders and other
• 51:24organizations need us to prove that,
• 51:25and so that's what we're working on now.
• 51:28And I'll just say, you know,
• 51:30imagine the number of little apps
• 51:31that you have on your phone that
• 51:33are self help or mental health or
• 51:35whatever other programs you have.
• 51:36And most of us don't open them at all.
• 51:39And when we do we open them for a
• 51:41few weeks and then we stop and that
• 51:43to me is why prison works better
• 51:45because there is a human interaction
• 51:47you're engaging with somebody who
• 51:48cares about you who listens to you,
• 51:50who coaches you.
• 51:51And so I worry a little bit about moving
• 51:53things purely to digital health without
• 51:55that degree of human interaction,
• 51:56especially for teens and young adults.
• 51:59Absolutely. How did you adapt
• 52:02during the during the pandemic?
• 52:05Wait, so we switched to the whole thing.
• 52:08We used to go as I said to the
• 52:10patient's bedside and we would sit
• 52:12next to somebody and coach with them.
• 52:14And then we held the program for
• 52:16about six months as many in the world
• 52:18did when when we all kind of had to
• 52:21figure out how this new normal would
• 52:23work and when we came back in about
• 52:25maybe a little over a year ago.
• 52:27Last summer, we started delivering
• 52:29the program purely via Tele Health and
• 52:31what was super fascinating is that
• 52:33especially for teens and young adults,
• 52:34maybe because they're more.
• 52:36Fluent and savvy and things like
• 52:38FaceTime and digital ways of connecting.
• 52:40Anyway, they seem to like it better this way.
• 52:43They seem to feel like this is almost
• 52:45a safer way for them to be vulnerable.
• 52:47They can sort of move back from
• 52:50the screen if they need to.
• 52:51They can engage in a way that is.
• 52:55Psychologically,
• 52:56more appropriate for them to my surprise.
• 52:58And so now I think moving forward
• 52:59we will only deliver the health.
• 53:01The program via Tele health.
• 53:03Unless somebody asks us to do otherwise,
• 53:05and we'll see how it goes.
• 53:10When you were starting out
• 53:13with developing Prism,
• 53:14did you start out restricting it
• 53:17primarily to adolescent young adult
• 53:19patients with advanced cancer?
• 53:21Or were would you include patients at
• 53:25any point in their character directory?
• 53:28Yeah, the first program we designed the
• 53:31pilot study the Phase two pilot City
• 53:33that I shared was for either people
• 53:36with brand new cancer or people who
• 53:38had just record and the reason was
• 53:41we believe that resilience coaching
• 53:43is necessary during times of stress.
• 53:45So if the construct is Ono right now,
• 53:48my life feels hard. I need help.
• 53:50We wanted to identify those periods of
• 53:53a patient's cancer experience where
• 53:55they would be receiving chemotherapy
• 53:56and in the hospital and needing
• 53:59some additional support.
• 54:00And so in that first study
• 54:02of roughly 92 people,
• 54:033/4 of them were teens with brand new
• 54:05cancers and then about 1/4 of them work.
• 54:08Folks who had been well and
• 54:09then had had a recurrence.
• 54:11And when we tried to look at the
• 54:13differences between the groups,
• 54:14we couldn't find anything that
• 54:16said prison work better or worse.
• 54:18If you were new to cancer or really
• 54:20experienced with your cancer,
• 54:21the thing that we did notice that
• 54:23was different in the patients
• 54:24with advanced cancer.
• 54:25And then this was replicated
• 54:27amongst teens with CF is hey,
• 54:29Prism just taught me all this stuff about
• 54:31how to identify what matters to me and why.
• 54:34My goals are and now I need help
• 54:36talking to my family about this.
• 54:38And so as I sort of quickly
• 54:40described one of our larger grants
• 54:42right now is building on that for
• 54:44patients specifically with advanced
• 54:46an incurable cancer.
• 54:47I'm saying,
• 54:48can we teach these four skills and then
• 54:50build on that to integrate advanced care
• 54:53planning for teens and young adults?
• 54:55And that's important because maybe
• 54:5620% of teens and young adults in
• 54:59the United States actually fill out
• 55:01advance care planning documents.
• 55:02Fewer than that are involved in care
• 55:04decisions about their ongoing medical
• 55:06care and end of life plans and so.
• 55:09The idea was maybe PRISM can be a
• 55:11safer on tray into some of those
• 55:13really hard conversations that are so
• 55:16important at the end of the patient's life.
• 55:18Absolutely OK.
• 55:19We have a couple of hands race so
• 55:21I'm going to let Jeffrey Towns
• 55:23and go ahead and unmute yourself.
• 55:32Hopefully he can leave.
• 55:43Alright, well, while we're waiting
• 55:45for Doctor Townsend Amanda
• 55:47Gorbaty near you able to unmute.
• 56:00Renee, I may need your help.
• 56:12Yeah, I just mark this a webinar
• 56:14so the attendees can send in
• 56:16something via the chat. Thanks, mark.
• 56:24Alright, so so Amanda and Jeffrey.
• 56:25If you want to put your
• 56:27questions into the chat,
• 56:28will be sure to try to get to them.
• 56:47Overweighting Abby.
• 56:48I wondered if you might be able
• 56:50to share how you thought about
• 56:52measuring some of those longer
• 56:54term psychological outcomes,
• 56:56or in terms of outcomes like.
• 56:59Job attainment or long term mental health.
• 57:04Yeah, oh, such an apropos question
• 57:06we're looking at that right now.
• 57:08So of those 92 patients that we
• 57:10had in that first pilot trial.
• 57:13So now we're talking about a small study
• 57:15because the other big studies are ongoing.
• 57:18But of those 92 patients?
• 57:22A little less than a third
• 57:2430% have died since then.
• 57:26In the two years that followed that project,
• 57:29and that is across both advanced cancer
• 57:31and new cancer patients in equal measure.
• 57:35So we're down to a little over
• 57:3750 folks who we can still follow,
• 57:39and it's harder to gauge long term outcomes
• 57:42in a smaller and smaller sample size.
• 57:44That said, what we're noticing,
• 57:46which is really interesting to me is,
• 57:48and this is like an ongoing
• 57:50work in progress data,
• 57:52so forgive me 'cause it might
• 57:54change when we finally publish it.
• 57:56But the initial analysis that we're
• 57:58looking at right now suggests.
• 58:01Two really interesting things.
• 58:03First,
• 58:04people who responded to PRISM in
• 58:06that beginning six months phase
• 58:07have a long term protection of it.
• 58:10So if you if you were in the
• 58:12group who got prison.
• 58:16Khalaj Ikle benefit seems
• 58:18to indoor two years later,
• 58:20so that sense of new resilience.
• 58:23Hope for the future and ability to
• 58:26find meaning and benefit those indoor.
• 58:29What is more interesting,
• 58:30in a different way is that while
• 58:33distress immediately improved,
• 58:34and as I showed you,
• 58:36depression risk went way down.
• 58:38That risk of endurable,
• 58:40non negative psychological
• 58:41outcome doesn't seem to persist,
• 58:43and So what I mean by that is
• 58:45people were no longer distress
• 58:47during their immediate cancer
• 58:49experience when they got PRISM,
• 58:51but overtime there's a regression
• 58:53to the mean between usual Karen
• 58:55Prism participants with respect
• 58:57to their overall distress.
• 58:59And the combination of those
• 59:01things tells me two things.
• 59:02Number one,
• 59:03we do want to alleviate negative
• 59:05pathology in the moment,
• 59:06so we do want to alleviate
• 59:09distress in real time.
• 59:10But the long term benefit
• 59:11of PRISM might be that that
• 59:13positive psychological gain is an
• 59:15inoculation for later well being.
• 59:17And what I mean by that is you
• 59:20want somebody's hope for the
• 59:22future to be the thing that lasts.
• 59:24I care less that they are not
• 59:26distressed overtime as much as that
• 59:28they maintain that positive outlook,
• 59:30because I believe that when
• 59:32the next stressor comes.
• 59:34That positive psychological
• 59:35benefit that they have gained those
• 59:37resilience resources that they have
• 59:39learned will help them deal with
• 59:41whatever is the future stressor,
• 59:43and so this is the long way of saying
• 59:45that I think what prison does is it
• 59:48boosts long term positive psychology,
• 59:50but the protection from negative
• 59:52pathology is more in real time
• 59:54and we probably need measures to
• 59:57address people's support to Puerto
• 59:58Kearneys right in times of stress
• 01:00:00and then help them figure out
• 01:00:02their way as they move forward.
• 01:00:06Absolutely. So we have one last question.
• 01:00:08I received this message by text because
• 01:00:11it looks like people aren't able to
• 01:00:14actually put messages into the chat,
• 01:00:16so I apologize so this this question
• 01:00:18is from Amanda Garber Teeny.
• 01:00:21She is a social worker
• 01:00:22in in pediatric oncology.
• 01:00:24She said she's traded a few emails with
• 01:00:26you so she's focused on adolescents,
• 01:00:29young adults and currently uses many prism
• 01:00:32techniques and models with her patients at.
• 01:00:35At Yale, so she was wondering if
• 01:00:37it would be possible to to have
• 01:00:39access to the app or other PRISM
• 01:00:41resources for her patients.
• 01:00:43Yes, so great question, Amanda.
• 01:00:45And thank you for asking it.
• 01:00:48The answer is yes and we as I said,
• 01:00:50we really do want to share this
• 01:00:52and we have ways to make be
• 01:00:54able to sustain the program.
• 01:00:56So we unfortunately right now
• 01:00:57cannot give it out for free.
• 01:00:59But please email me and I'm
• 01:01:01happy to chat with you about
• 01:01:04how we can provide the program.
• 01:01:06Cost effective way is we can
• 01:01:07until we can figure out how to
• 01:01:09publicly just make it available.
• 01:01:13Alright, well thank you so much
• 01:01:15Doctor Rosenberg for being here with
• 01:01:17us and for sharing your insights.
• 01:01:19And thanks to everyone who
• 01:01:20joined the webinar today.