Measuring Family Engagement in Maternal and Child Health (MCH) Research

Linares: Good afternoon my name
is Dr. Deborah Linares. I serve as health scientist
and project officer in the division of research
within the office of epidemiology research at the
Maternal and Child Health Bureau Health Resources
and Services Administration. The division of research
provides ongoing support for maternal and
child health or MCH, extramural research activities including the engaging research
and innovation and challenges for the enRICH webinar series. You’re joining a community
of more than 100 participants with an interest in advancing
MCH research. The enRICH webinar series
provides technical assistance and methodologic updates aimed
at stimulating interest in applied and translational
MCH research. Today’s webinar is about
measuring family engagement and maternal child health
research: Opportunities and challenges. Before we start, I would like
to briefly introduce our speakers
for this afternoon — Dr. Christina Bethell
and Ms. Clarissa Hoover, Dr. Christina Bethell
is professor at the Johns Hopkins Bloomberg
School of Public Health and founding director
of the child and adolescent health
measurement initiative. She is a principal investigator
at HRSA and MCHB maternal and child health measurement
research network. Ms. Clarissa Hoover is a project
Director at Family Voices and started advocating
for patient, family and quality healthcare shortly
after her daughter’s diagnosis with cystic fibrosis in 2005. She has served as a
family faculty for residents and nursing students
and later joined and co-founded three advisory councils
supporting family centered care at the University
of New Mexico Hospital and Health Sciences Center. I will now turn the program over
to Dr. Christina Bethell. Bethell: Good afternoon
and thank you everyone for participating
in this webinar. I look forward
to the next few minutes, and also especially
our question and answer. My job is to in the next few
minutes review the state of family engagement measurement
as it says through our maternal child health measurement
research network activities and also summarize
some of the findings and gaps in opportunities
prior to Clarissa, who will present on the exciting
work that Family Voices is doing on assessing family engagement
in systems. My first slide is really
just to give thanks and acknowledgment to HRSA
and the Maternal Child Health Bureau for their vision
and leadership to develop the maternal child
health measurement research network that allows us
to stay on top of progress in the field of measurement
such as in family engagement. And just for little
background on me, the child and adolescent health
measurement initiative we founded in 1996,
prior to the time when we really had many measure
at all of child and adolescent health as is presented in the
national survey led by HRSA and the Maternal Child
Health Bureau today, and certainly did not have yet
measures related to family engagement or participation
or even family centered care quality measures
for health plans and pediatric practices
and similarly. The CAHMI was started trying
to fill this gap, starting with identifying
what are our goals for child and
family health to discern and develop actionable data
starting where you want to end up
in terms of the use of that data, and then to use
the data to inspire and inform translational
partnerships that can be data driven
and coordinated to innovate and act on the opportunity
to improve. So that’s the
underlying goals at CAHMI for the last 20 years,
and our focus is on family reported and family
centered data and tools. Likewise, there’s a lot
of literature. If you have actually
take the time to go through, you’ll get quite
overwhelmed quickly about how engagement
with families at all levels is linked to positive outcomes. Synthesizing that
and making sense of it is very challenging,
but this diagram really just points
to all the arrows, points to literature
and evidence that exists how important it is
to share ownership and collaboration
and how that can yield the best possible outcomes. Early notion in the family
engagement really began in the national way
around 1999-2000 when the Institute of Medicine with Envisioning National
Healthcare quality report, and at that time family
engagement was really considered to operate
on 4 domains, which would be patient centered
communication and caring, patient centered education
and teamwork, consumer and empowerment
in the participation and selection
of health services and patient centered
sensitive care, which at that time
was mostly assessed as whether or not the systems
themselves were customer oriented, consumer centered
and helped manage to improve population health. And not necessarily to get at
what Clarissa Hoover is going to present on family
engagement and decision making, but that was there conceptually,
although now measured. And of course we have so much
to leverage, and that’s really
the good news for Institute for Patient
and Family Centered Care. The child welfare sector
has been involved in the family engagement
activities and measurement for a long time,
and now we are seeing CMS, which oversees Medicaid
in the country of big emphasis on personal and
family engagement and decision-making
and in services. And of course the American
Academy of Pediatrics has been a long advocate
of assigning and advancing family engagement
and family centered care. AMCHP, which is a critical
player in the country, is working with many Title V
agencies and MCHB programs on their strategies to
ensure family engagement, and approving
systems of care for the Title V national
outcomes and performance measures led by
HRSA and MCHB. I’m not going to read this,
but all to say there are many definitions. And the good new is that
all of them really are very inspiring,
and yet also cut across many domains. Here is just
an illustration, not that you’re going
to read this — literature that really goes back
to at least 1989. It’s showing the critical
importance of engagement at the level of services
and how that is very connected to improvement
in health outcomes. So this is sort
of where it began. And then measurement started
to move more toward engagement at the system at the level
of programs and systems. This is a quote
from the child welfare work in the measures they use
which really look at engagement based on involvement activities. Are families involved, are in care and systems
and programs? And really are starting
to move more towards a measure of whether or not families
needs were met as an outcome of engagement,
which is a different way to look at it. When you look at the ultimate
kind of conglomeration of different models that
define family engagement, it’s definitely defined
across many levels. It’s multidimensional, dynamic in that it’s not
something stable. It can come and go depending
on the relationships that are in place. It’s relationally dependent
and a process that is really foundational
to all positive health outcomes, which makes it difficult
if we use an outcome-based frame
because almost all positive outcomes
are requiring effective engagement of families
and children. So if we go
with an outcome frame, the sky’s limit as to how do we
come up with measures that are little
closer to the bone of what we are trying to discern and pull out the role
of engagement? This little pyramid here
says that ultimately building trust and relationships
then lead to the experience of being engaged
that can allow you to be effectively engaged
as a family member, and then that ends up
feeding into results. You can look at steps
to engagement, the things that you would do. The actual experience
of engagement, as reported by families,
which may be different. You can do things,
but it doesn’t lead to that experience. And then ultimately to what
we think are the outcomes of engagement,
which include better systems that meet family needs better,
as well as improving family health
and family well-being. There’s a big range of outcomes
that we hinge on this concept of engagement. In HRSA and MCHB’s
and the national home visiting program,
they are defining family engagement in at least
one of the reports based on outcomes to engagement. This would include really more
of a family centered approach of saying that engagement
is happening if families are enrolling in home visiting
services who need and are eligible. Whether they engage actively
during home visits and whether they complete
the intended number of home visits across the
intended length of the program. And this sort of flips it on
the head from the other measures that are looking at
whether systems are doing things
to engage families, to whether families
are actually being engaged themselves proactively
and these are really different ways of thinking about
measuring engagement and are appropriate
depending on your purposes. It’s really important to address
all the interdependent aspects of family engagement overall
for the system and to improve outcomes overall. However,
depending on your purpose, you’ll be wanting
to focus in one of these four buckets
perhaps. The first is really engagement
as it manifests through communication between family
and providers to build trust and to be the basis upon
which we can start to improve health and health
outcomes and quality of care. There’s a substantial body
of research on that. Family involvement
isn’t to share decision-making
and plans of care. It’s another layer
in and of itself, so if families engaged
that doesn’t mean that they are necessarily
involved in as much as they might like
to be in really defining the plan of care for their child
and family over time. And this is an area
that’s just now evolving more and more to define. We have models
for shared care planning and decision-making,
but we have not necessarily gone the distance. The next would be active
collaboration with organizations and systems for results,
and this is what Clarissa Hoover is going
to be focusing more on, is how do we assess
this very, very critical aspect of engagement? And finally is measuring whether
families are engaged, in way that home visiting
program was defining it, to actually engage in services
that can help improve the health and well-being
of their family and child. We have taken it upon ourselves
to look at measures that are being used across
11 different MCH programs, including Title V
as well as of course Medicaid and CHIP and child welfare
in a variety of other programs. You can find out more
by going to our website, and we’ve categorized these
generally across studies. We have over 1000 measures now
across access to and quality
of healthcare services, health and related services,
health status, well-being and health conditions across
the life course in social determinants
of health. There are measures related
to family engagement in each of these areas. For a family engagement
and that’s it relates to access to
and quality of health services, which is a little bit more along
the lines of the home visiting concept of measuring engagement
in that report that I showed you,
well visit utilizations, for example. CAHPS surveys
are available of course, and measure family
centered care, and that’s more getting
at the experience of having been engaged and transition
to adult healthcare. This is also a Title V national
performance measure. It has many elements
of engagement of use with special healthcare needs in
particularly, and could be considered an
engagement measure depending on the
lens that you look through similar to the other measures
that are on this list. Big gaps that might
be considered in this area could be, again,
getting at how we can engage families in organizing systems
to improve access and quality of services
to engage families in goal setting
and shared plans of care, to build trust
and relationships and whether that is happening as
a foundation upon which so many positive outcomes
are linked to. But as to say in some ways
ineffable concept to measure,
but it is getting less so. Other potential outcomes
of family engagement that fall into this area could
be reductions in emergency care, being healthy and
ready to learn in ways that are emerging from HRSA
and MCHB beat to be measured. Having healthy family routines
and habits, for example, which are also measured
in the NSCH in many ways and also family resilience. This is just data
I’m not go over, but it’s mostly to say
we have data on some of these measure since 2001. I’m just profiling data here
from 2001 to 11-12 because we are starting
with a new baseline on the national
survey of children health for 2016, so I did not want to
go further. You’re not meant
to really read all this. If you download the slides
you might be able to, but how well
the family centered care items will go over across time. And they really haven’t
changed a lot in terms of doctors listening, providing
information families need and always feeling
like a partner. Even though these look
relatively high, they are actually quite low
for many of the most vulnerable groups
that we want to focus on, especially children
with special healthcare needs, youth and adolescence and when
families do not have English as their primary language. Other aspects of engagement
assessed in the national survey of children’s health
that is from the 2016-2017 combined data
that was recently released, look at share decision-making. And when we compare this
across children with special healthcare needs
and by household income, there is some variation,
but overall, we’re seeing
similarities suggesting that family engagement needs
to be measured and improved at a population basis. This is the data from the newer
2016 and 2017 NSCH for transition into adulthood
which includes engagement items, and as you can see,
there is a long, long way to go in improving
this particular measure. another aspect of the MCH-MRN
compendium, and then I will be wrapping up,
our health status and well being measures that
look at families participation in health behaviors
that are associated with the well-being
of their children, and this is a different way
of looking at engagement. But there is quite a few items
here related from everything to sunscreen use
to household smoking, sleep, and so on. There are many gaps,
however, and again, it’s possible to construe
that the healthy and ready to learn concept emerging
from the National Survey of Children’s Health School
Engagement, and also positive parenting
practices related to child and family connection
and routines and habits could be considered here. And finally are social
determinants of health. This is really getting
a little higher upstream to say that if we’re engaging
families and meeting their needs and defining engagement
as meeting families needs, we would probably see
improvement in social determinants of health,
like having adult connections and adolescents having family, peer and other adult
connections. Even early language
and literacy activities and sexual health discussions
with parents, these are measures
that are actually in the MCH-MRN compendium
that cut across those 11 already
existing programs. The list I have here
for potential gaps is long so I won’t read it,
but I think we have a lot of existing data,
in our national and state data sets to consider
as well as many that are already existing in the field
and in the literature. Ultimately, we have conceptual
gaps for family engagement, meaning there are
no measures at all in important
conceptual areas. We have population-based gaps,
meaning we have measures but they’re not measured across
all of the population groups for which we care about
measuring them. We have used gaps
where the measures are there, and many that are discussed
that are not used effectively to inform policy and practice
and improvement or even in research. We have alignment issues
where measures are similar but they’re not conceptually. They’re not measured
the same way across programs that we know need to collaborate
and work together in order to improve overall systems
of care for children. Measures are not applied
for action, so there are a lot of work
to assess and even use the measures
but they don’t reach it all the way up
to decision-making. I think that is some
of what the CSAT, that Clarissa Hoover’s
going to be talking about, can make happen. Measures are not collected
with the demographic data, and other topics that we need
to really continue to assess the great amount
of equity issues that we have in this country,
and that many of those within equitable healthcare
are more predominant users of our health systems. When we look at wanting
to improve health systems, we have to look at equity,
but often the data we need to do so are not available
or the ways that we report data are not effective
to informing that. And then there’s the
all-important issue of translation and not assuming
because data is there it’s used. It has to be communicated
effectively to stories and in an applied way. And finally, specification
and validity were often going quick,
and spending can be very low compared to other sectors
or adults healthcare to really validate
and publish on measures. And the lack of specification
in validity harms the use of the measures that we do have
when they start to be considered,
such as is happening today. Even CMS is starting to look
at measures of family belonging, and engagement
is priority for them as well as for HRSA, MCHB,
Title V, yet we are behind
on documenting our measures in the literature,
as well as even in the reports about the availability
of these measures. So to close, I want to summarize
some of what came through for our family engagement
technical working group which is a technical working
group that is a part of the Maternal Child Health
Measurement Research Network. And we’ve had our annual meeting
this last year, and the short term
priority actions and opportunities that were
identified include clarifying definitions about what we mean
by family engagement and family centered care
and across different systems and context and what’s most
important to measure now. To develop and model effective
use of existing measures and measurement tools
and the information collected. Again, to use available data
while a lot of data in the National Survey
of Children’s Health, also some data in EHR and EMR
that can be used and other sources. To go ahead and proceed
with enhancing measurement of family health
and family engagement in existing data
collection platforms but to do so with a lot
of discernment. This can certainly result in
recommendations to HRSA and MCHB about what they might want
to consider for future versions of NSCH or for future Title V
national performance measures. My hunch is that HRSA and MCHB
is already looking at that. To synthesize existing
knowledge, which has to continuously
be done and separately often for each application,
and to certainly create what we call launch
and learn evaluation platforms that allow us to begin to use
the best available measures but in a way where we’re
bordering it with an evaluation framework
to find out what’s really working for whom. And to consider what I call
consistent science model, and not just the collaborative
innovation network which we’re more used to. The Citizen Science models,
this would engage families directly in giving feedback
about how we would assess or measure would actually
help them or did not help them as we go forward in measuring
and engaging families. And then again, of course,
to ensure family leadership in all the measurement
development activities at all levels. Another list of — Whoops. I think I… Oh, thank you.
You forwarded it for me. The last set of recommendations
for potential next steps, which are even broader
in the short-term, is to really take advantage
of this cross sector commitment to family engagement
that we do see in healthcare and public health
and in child welfare and especially in the engagement
education sector, which has really been
a leader in looking at measuring family engagement. To strategically review
and analyze and make actionable existing data
in very concrete ways. And then, of course,
to advance the great work that Family Voices is doing
with many others, and with funding from the
Lucile Packard Foundation for Children’s Health
and the on the FESAT tool. And publish papers
on the measures that we do have so we can start documenting
their validity or lack of validity and approve
the measures over time. Now is the time,
and I will turn it over to Clarissa who will go over
the exciting work that she and her team is doing on family engagement
measurement. Hoover: Thank you, very much,
Christy and thank you, Debbie, for the chance to share
what we are working on. Thank you, everybody,
for joining us today. I wanted to start out
by just reviewing quickly a little bit of what Christy
was saying about the history
of family engagement. The Institute of Medicine
in 1999 published “To Err is Human” in which
healthcare quality consisted basically entirely
of reducing medical error. And two years later
followed up with “Crossing the Quality Chasm”
in which they recognize medical error of one
of six elements of quality healthcare
patient centered, was also one of those
elements of quality healthcare. Kind of a cognitive shift up,
paradigm shift already starting there
about 20 years ago. The Affordable Care Act
in 2010 uses the phrase patient centered medical home
again and again and again, and so we see again
another shift here where patient centered isn’t
one component of quality healthcare,
it is quality healthcare. As a family leader
at this point, I was a little bit concerned
that in the rapid roll out of family engagement,
we would see a loss of all of the hard work the
people had done to try and make it a really
meaningful activity. I have to say that
that isn’t how it happened. It is been quite the opposite. The patient centered medical
home implementation in 2011 and since then
has been really realized this idea that patient centered
means patient engaged, just all the other patients
outcome research institute who was the first person
who I used that phrase, who I’ve heard use that phrase
and I’ve seen it just showing up in all
of these different places. I have to give credit
to all of you professionals who have taken the opportunity
to really jump on this and make patient centered
and patient engaged meaningful thing that gives us
the opportunity to transform our healthcare. Maternal Child Health Bureau
began promoting family partnerships
in the 1980s, mainstream and monitoring them
in the 1990s. I wanted to mention that again
because there’s this context behind everything
that we do, that on the one hand,
the Maternal and Child Health Bureau
has been doing a lot of work for a very long time to build
the foundation for this. On the other hand,
things are changing so quickly
that we don’t necessarily have the resources
or the expertise to do everything
that we want to do. I just tell families,
be patient, we’re all learning. I also tell them don’t be afraid
of researchers. They’re more afraid of you
than you are of them. It’s just kind
of a challenging transition right now, but it’s so full
of opportunity. To bring that full-circle
I want to repeat again what I think if you’re here you
understand this, to have family centered
services, we must have family engaged
research. The research needs to meet
the needs of families in order to lay the foundation
for services that meet our needs. Christy mentioned several times
the FESAT, which is family engagement
systems assessment tool. That is currently in development
with funding from the Lucile Packard
foundation for children’s health. We’re working
with Christy on that, and with a great team
and great expert workgroup that’s supporting that work
as well, and that is expected to be
released later this year. Today, I’m going to focus on
the framework that provides the structure for that tool. It is at this level more
of a strategic framework in that it makes the connection
between the actions that we get, the family engagement
that we do and the results that we want. It was developed by experienced
family partners through a structured
and stakeholder engaged process. It consists of four domains. It’s important to address
each of the four domains for meaningful and sustainable
family engagement. Meaningful and sustainable
is another one of those ineffable concepts that Christy
was referring to. It is a phrase that occurred
again and again when we completed
the literature of your family engagement, and it’s kind
of our guidepost in terms of what we want family
engagement to be. The family engagement
in systems framework consists of four domains,
which are commitment transparency, representation,
and impact. I’m going to go
into each of these in a little more detail now. In the commitment domain, an overview of what that means
is family engagement is a core value. All partners
make themselves available to work together
in good faith, families are engaged
at all stages of research and family leaders are connected
with ongoing opportunities to partner if they wish,
which is an idea that may be a little bit
unfamiliar. But the idea is that we think
of this as a capacity building opportunity
for families and we think about where
they want to be, how they want participation,
partnering in research to help them build both
as individuals and within their community. Why commitment matters? It allows engagement
to be iterative and cumulative. So instead
of building it up, I think a lot of people
with past experience with family engagement
have seen this. You build it up, it disappears,
everything goes away, you start over from scratch. Instead of doing that again
and again and again, we sustain it
and we have the chance to build on
what we have accomplished rather than starting over. Very much related to this idea
of iterative and cumulative is building trust
with the community, building a reputation
for follow-through. People don’t come in
from the community and say things to a researcher,
and then it just kind of goes nowhere as far
as they are concerned because they don’t see it
landing in journal articles or wherever and it never comes
back to their own community. So you have
to follow through on what you’ve told them
you are trying to do in a way that they can
understand and see. Developing a cadre of skilled
family leaders. When people are involved
in an ongoing way, they have a chance
to develop their skills. People develop individually
in different directions, but they are all enriches
the process and enriches the conversation into something
that is more and more constructive and informed. Relationship support recruitment
of new family leaders and fresh perspectives. The relationships
that the researcher has with the community. Support the informing
connection, more and more connections
and in connection with multiple family leaders
rather than just going back to the same people again
and again. Avoiding helicopter science,
which is a phrase that’s familiar
here in New Mexico. It started with the idea
of reservations that researchers
would come in would come in on a helicopter
for a weekend or a month and then leave again,
and once again, the community would never
see the impact of what they were told
was going to happen. Some activities that contribute
to commitment that lead to commitment or realize
the possibilities of commitment are interweaving different
engagement activities to suit different purposes. Instead of talking about
what is not possible, we can’t do an advisory council
in a setting, so we are not going to do
family engagement. We start focusing on how. There’s a lot of different ways
to engage. What is the strategy
that works best for what we’re currently doing? And how can we get multiple
strategies going in the same project
so that they feed each other and build a community
of family leaders around our projects? Become more robust and engage
in dialogue with each other. Things really will start
to take off when you’re talking about different
engagement activities to suit different purposes. Partnering with families
in choosing goals. This is goals at this point,
not necessarily measurable goals
or measurable outcomes, but more of overarching
guideposts that help us keep on track and knowing
what we are doing is accomplishing what
families need us to accomplish. Working with family-led and
community-based organizations. This is to provide support
to family leaders in the project,. Family-led and
community-based organizations, these are terms that have
a very specific meaning. They’re referring to
organizations that are staffed other than the community
that they are working with and are rooted
in the communities that they’re working with
and have relationships there that they can use
to help your project and help your family leaders
in your projects. Hiring family leaders as staff,
either for example, as interviewers
or as recruiters. Often working
in a community role, working in community
relationships, although not always. We want to be very clear
that this is facilitating your relationships
with the community, not replacing them. You still need people
from the community who are not embedded
in your project who are helping to partner
in your project and help you
with major decisions. And then last,
but as everybody probably knows, Not at all least, pay family leaders
for their work as you would pay any
employee or anybody who who was consulting
on your project. And budget for engagement costs
including costs that aren’t necessarily staff time
such as travel to co-present at conferences
or travel funds for families who are driving
long distances to get to you. Moving onto the next domain,
which is transparency. The overview is that
transparency… I’m sorry,
this language is sort of the general language. I didn’t correct this word to be research specific,
but the organization clearly documents
and communicates about how it identifies issues
faced by the children and families they serve
and supports and engages family leaders
in the organizations, policy program,
service or practice initiatives. Of course in the
research context we’re talking about things
like writing proposals and making decisions
every step along the way. Sorry, clicking
in the wrong spot. Why transparency matters? This is kind
of an interesting domain, because when we talk about
the list of activities next, it has one of the longest list
of activities, but in terms of why
it’s important, it really just comes down
to the central idea of balancing power,
sharing power. If families are marginalized
within the process, they are not going to be able
to help change direction of the research,
and it’s just not going to meet that criteria
for being meaningful. And so we think about balancing
power in terms of access to opportunities,
for example, the chance to come to
the right meetings were really important
decisions are made. Knowledge — do families
have the background knowledge that they need in order
to understand conversations that are happening around them
so that they can participate in meaningful ways? Skills,
including advocacy skills, sometimes that can be a matter
of riding the bus or joining a conference call. Families don’t necessarily
come in with all of the skills that they need in order
to participate and partner in meaningful ways. Access to confidence,
so the setting is supportive and friendly
and really emphasizes that family leaders
have something to offer and that what they have
to offer is appreciated. Physician, again is partly
a matter of being in the right place
at the right time. So some transparency activities
include understanding the issues faced
by the community, including things
that are not necessarily what you would think
of immediately. For example, a person
with disabilities in a wheelchair might feel
uncomfortable sitting at your conference table because of the way it’s shaped
or because of the height. It just doesn’t work
for how they are seated. You have to talk to them
to learn about things like that. You’re not going
to know right away because their life experience
is so different from yours. Scheduling communication
and follow-up for meetings are all available to people
in languages they understand and formats they understand. Communication is through text
if people want text, through emails
if they want emails, through phone calls
if they want phone calls. That’s partly going to be shaped
by the age of your participants or things like that. Plain language and person
first language, avoid or explain jargon
and acronyms. A lot of jargon that
professionals use they don’t even necessarily
recognize as jargon. You have to take the little
hints when family leaders start asking you
what something means, that that’s a term
that isn’t clear. Person first language means
keeping a peorson distinct from their health condition
or their disability. My daughter was in
the hospital last week, and one of the nurses
called her a CFer. Don’t call my daughter A CFer. Her cystic fibrosis
is a very different from who she is, which is
a really amazing person. She’s a person with CF. She’s a beautiful young lady
who has cystic fibrosis. Support special needs. The conference table example
is one example. Language access,
once again, there’s so
many different special needs that people can have. You aren’t going to know
what they are unless you’re talking to people
about what they are. This can include issues
that people are embarrassed to mention, so a warm supportive
environment is very helpful there in getting
people to come forward and mention some issue that just
happens to affect them. A person with autism
might be distracted by a buzzing in the room
or that sort of thing. Partner with family-led
and community-based organizations for support. I had actually mentioned
that before under the previous domain. That is something
that helps across all different kinds of areas. In this case,
members of the community can help you produce materials
that are more accessible to members
of their own community. They can tell you about
the special needs that you may not know
about because they already have those relationships
because they are already trusted within the community. They have this background
knowledge that can be difficult to access when you’re starting
a new project with new partners. And I mentioned that this
was the longest list of activities Comfortable modes
of communication. I had use those examples before
of texting for people who are more comfortable
with texting. Phones for people who are more
comfortable with phones. And then skills building,
including cultural competency and avoiding personal biases. For family leaders,
focus on their family expertise, not trying to give them
professional expertise. I know it is often tempting
to say, “Oh, this person needs to understand
healthy people 2020, or this person needs
to understand why it’s so important
to research this particular area from a research perspective.” They’re bringing in their own
expertise as a family, and the skills that they need
are really about how they can maximize
their expertise, how they can communicate things
that are difficult to communicate,
how they can speak up in situations that may be
uncomfortable to them. It’s really a very
particular skill set that we’re talking about when
we are talking about that. For professionals,
recognize family engagement as a distinct area
of professional expertise. When we were doing key important
informant interviews as far as developing
this framework, we found that this was one
of the areas that people recognize it when you asked them
about it, but they didn’t necessarily
come in thinking about that there are specific
skills that are required for professionals to do these
engagement tasks. To some extent, it depends on
what field you are in What matters to your community
that you are working with, and what skills you already
bring to the table, but there are definitely
distinct skills that are important for working
with families and ways that families experience
as constructive. So on to the next domain,
which is representation. Representation occurs
when family leaders reflect the diversity
of the community served. In the family engagement system
assessment tool, we call out race, ethnicity,
culture, language, disability, age, gender, geographic area. And by geographic area,
we’re talking about specific urban areas,
specific rural areas, and then any other factors
that are going on in the region you are working in
that you need to consider in terms of diversity. There may
also be localized divides within your specific communities
such as labor and management. People will tell you
if there are issues like this. Sometimes it just comes up
the one time and you have to catch it
that one time or you miss it. Another really good place
to look in terms of thinking about
who you need to represent in your family engagement,
is who have you called out in your justification
and proposal and abstracts for articles,
and introduction. This is an implied promise
that can only be kept by connecting
with these communities. For example,
if you’re researching preterm birth and you say
African American women have particularly high rates
of preterm births and then you proceed
with a project that doesn’t talk to
African-American women, our experience with that
has been sort of a main steam project
doesn’t help address disparities like that. You have to work with that
specific community in order to have a meaningful impact
and in order to improve outcomes in that community,
and so this is where representation becomes
incredibly important. Why it matters? Nothing about us without us. If you mentioned somebody
in your justification, you should be talking to them. Otherwise, you’re kind
of using their situation to justify what you’re doing,
but not looping them in to make sure that it’s
meaningful for them. Representation reduces
disparities and increases generalizability. It also offers strength
through diversity. This isn’t an idle phrase. This is a documentable fact,
and I am suggesting that you Google monocropping
if you want to hear about what the opposite of strength
through diversity is. Google groupthink. that’s the opposite of strength
through diversity. When we we mix up
a lot of different ideas, whether it’s from different
cultural context or different educational
context, different professional contexts, it just enriches
our conversations and brings in all of these
new ideas that can then become innovations within our work. Avoid embarrassing mistakes. Don’t have photos that certain
elements of your community look at your photo and think, “Oh, my gosh,
what are you thinking?” Don’t have language you’re using
that means something different in certain branches
of your community that isn’t what you
intend it to make. Sometimes there’s very simple
stuff that can be caught up front
if you’re engaging with a diverse group of people. It also offers the chance
for dynamic learning from other family leaders. I mentioned several times
how family leaders are building their own capacity,
maybe continuing with this work as family leaders,
digging deeper and deeper into it, maybe moving into
more of a professional role that blends
with their family role. Or maybe they’re going
to take this work into some other entirely
different area of their life but is still going
to change them and they’re still going
to grow for it. When they have
the chance to learn from other family leaders
who have very different experiences from themselves,
whatever direction they’re going to go with this
in the future, it expands their knowledge,
it builds their capacity and it just helps them to grow,
to have a broader, more systems oriented
perspective rather than one
that’s really tied in with their own personal
experiences. Representation activities
include representing race, ethnicity, culture,
language, disability, age, gender
and geographic area. We know that
that doesn’t always work out the way that it sounds
like it does when we just say, “Hey, represent everybody.
It’ll be great.” Sometimes there are conflicts
that emerge if you put two different groups
in the room together. Sometimes there people who just
feel incredibly uncomfortable with the entire
research concept. You have to bridge that divide before you can really have
constructive conversation. To drill a little bit deeper
into what that means — Going where people are. In this case I mean physically,
although that can also mean more cognitively
or intellectually. Go to church if they are at
a certain church. Go to the community
based organization if they’re at a particular
community-based organization. Don’t make them deal
with University parking if that’s a huge barrier,
which it often is. You go the more than halfway
so that it’s easier for them to meet you
in that place. Partner with family-led and
community-based organizations for recruitment. They will often have
a familiarity in the community, or have relationships
in the community that will allow them
to identify people who are a good fit
for your project who are interested
in your project and help you form connections
without having to start from nothing, if that’s where you are
in your project. Identify issues in other domains
that are particularly important for diverse communities
that you’re working with. For example,
in the transparency domain, I talked about accessible
communication. There’s obviously going to be
a lot of different issues depending on what community
you’re working with in terms of communication. Although that appears
in the transparency domain, it is also very important
to representation. An overview of impact. Engaging with families
changed what you did and how you did it. Planning execution
and dissemination, and impact of families
is recognized and acknowledged. I am noticing that I am
not doing all that great for time here,
and I know we’ve got lots of great questions
coming in, so I’m going to hop
through this as quick as I can
and we’ll move on to what all of you
are talking about. Impact is about learning
from experience, visualizing success,
and it gets a little interesting when I talk about
a measurement tool that has impact
as a measurement domain. We aren’t necessarily
talking about measuring outcomes or measuring the endpoint. We’re talking about impact
as it is felt throughout the process,
and how if impact falls flat in the opening stages
of your process, you’re never going to reach
those outcomes. I’ll skip over that quickly. Impact activities,
sit with it before reacting. I think it’s important
if a family leaders says something that you’re
not comfortable with, instead of just jumping on it,
take a moment to really understand
and kind of get past that first defensive
reaction and take it in. Family leaders are engaged
qualitatively. Co-production,
which refers to the work, not just the credit
for the work. That means
that you don’t just say say somebody authored
a paper, they actually helped
write the paper. And then the family leaders
are engaged in selecting the outcomes
that you’re focusing on. Once again, those domains
are commitment, transparency, representation and impact. Thank you all
for joining us today, and thank you
for all of your questions which we are now ready
to move on to. Linares: Thank you so much, Dr. Christina Bethell
and Ms. Hoover. What an informative
and interesting presentation. We really appreciate
you taking the time to share your expertise
with MCH community. We are now ready the question
and answer period, Jim, could you please remind
the audience how they can submit questions. Jim: To ask the question
on the web, please enter your question
in the field at the bottom
of the Q&A pod, bottom left corner
of your screen. Enter your question,
press the enter key. Your question will be sent
directly to the moderator and will only be seen
by the moderator. Back to you, Deborah. Linares: Great, thank you. I think we have
our first question. Our first question
is for Dr. Bethell. This question is about whether
this is a chicken versus egg scenario. How do we know that families are
more resilient because they are engaged,
or if they are more engaged because of increased
resilience? Bethell: Great question. Actually, the other day,
I was thinking we should write a paper on how it’s
the wrong question. It’s the chicken and the egg.
[ Laughs ] Chicken and egg issues are
important in certain contexts, but I’m not sure
they’re that important here. If families are engaged
because they’re resilient, they still need
to be engaged. If families aren’t engaged
because they aren’t resilient, then building resilience
is the activity that we need to do,
not only to engage them, but because it’s critical
to the health of their children and their own well-being. I suspect, and I actually have
some evidence, that family resilience is higher
when the experience they have with their providers
is positive in terms of communication
and listening and other variables
that indicate engagement. Much higher. At the same time, you can’t
really tease that apart. However, it is likely
that families who are already more resilient
and innately engaged will be more likely
to lean in to make sure
that engagement happens, and so we have
to be very in tune to the individual differences
of families, and meet them where they are, and regardless
of where they are, to work toward engagement
because it’s always critical. So I think it’s chicken and egg, and I think it’s very important
to discern when it’s important to separate those things. And that is
probably most likely in a research context. In a research context,
we’re going to see — we have to use simultaneous
equation modeling, because the outcome
of engagement is predicted by resilience,
and yet, the resilience is predicted by engagement. And that’s true for a lot
of the things that we’re seeking to address
and healthcare and in systems. Linares: Great, thank you. We have another question
for Ms. Hoover. “What might be some first steps
you recommend to researchers who are new to engaging
families in their work?” Hoover: I recommend to start
with what seems most accessible to you. This is a little bit
lightweight, but it can even just be like
talking with a friend who you happen to have
who has a diagnosis related to the work
that you’re doing. It’s just having
real conversations with real people and giving them
a chance to tell you how your research looks to them. Often, the language that
you’re using is kind of the first barrier. You may be interested
in the same things as families, but you’re talking
about it in terms that they don’t understand. You need to kind of get warmed
up to where you can give — We always call that
the elevator speech, the speech would give to someone
in an elevator if you’re explaining
what you’re doing. Can you explain it
to your mother? Can you explain it
to your children? As you get more comfortable
with talking about your research in those very accessible terms,
conversations around it will get easier. Another step is to contact
community-based organization and see if they have people
from the community who they recommend who
you can make contact with. You can browse the Internet. There’s are some very
interesting conversations going out there on
patient communities, very frank conversations. It’s very often
sort of the hardest things are the things that are barely
easy to address with these fairly
lightweight ideas. Once you start to start
to make the shift to how this perspective looks
when you’re looking at things from a patient perspective,
then it sort of starts to build on itself
and you start to get more of a feel for who you need
to be talking to and about what. Linares: Great, thank you. We had a request for one
of the links that Clarissa was talking about
earlier that was a framework, so we’re going to show
that link up here. And we also had a request
for getting more information on data from the MCH measurement
research network. Those links are posted
on the screen, and feel free to visit them. We are almost out of time today,
so I wanted to thank you all so much
for a great presentation and for sharing your expertise. If you did not get a chance
to ask your question to the speaker, please feel free
to submit your question through the Q&A field. And we’ll try to respond
to questions after the webinar. We are now almost at the end
of our program, and after this webinar
you will receive a request to complete an evaluation. You will fill this out
and provide the MCH division of research feedback
on today’s event. Your response will help us
plan future webinars in the EnRICH series. Thank you all
for your attendance and participation. I also want to thank Jenn Rogers
and Jim Wetherill at Altarum for helping
to organize this event. An archive of today’s webinar
will be available on the division of research
website in several weeks. Have a wonderful afternoon,

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