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CHILD LIFE
IN THE
INNER CITY:
EMPOWERING FAMILIES IN SOCIAL,
PHYSICAL AND ECONOMIC CONFLICT
Divna Wheelwright, MA, CCLS
Manager of Child Life Services
Children’s Hospital of Michigan
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PARTICIPANT OBJECTIVES:
• Examine the deep connection between environmental
factors of the inner city and pediatric response to stress
and anxiety.
• Reflect upon personal understandings of race,
socioeconomic status, and environment to promote
increased self-awareness when working with families of
disadvantaged backgrounds.
• Infuse future child life interventions with an awareness of
neurobiology, patterns in attachment relationships, and
dynamics of social power.
• Empower through empathy.
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THERE ARE 42 CHILD LIFE PROGRAMS IN
AMERICAN INNER CITIES
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Cultural Competence vs Cultural Humility:
Key Distinctions
Cultural Competence: connotes a theory that can be mastered.
None of us can truly become competent in another culture.
Cultural Humility is composed of three pillars:
1. Lifelong commitment to self-evaluation
2. Awareness of power imbalances
3. Developing mutually beneficial non-paternalistic
partnerships in care
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THE JOURNEY TOWARD
CULTURAL HUMILITY
CULTURAL SENSITIVITY
CULTURAL COMPETENCY
CULTURAL HUMILITY
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SELF EVALUATION: WHERE AM I ON THE CONTINUUM TOWARD
CULTURAL HUMILITY?
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“Recognizing that each person brings something different to the
proverbial table of life helps us see the value of each person.
When practitioners interview clients, the client is the expert on
his or her own life, symptoms and strengths. The practitioner
holds a body of knowledge that the client does not; however, the
client also has understanding outside the scope of the practitioner.
Both people must collaborate and learn from each other for the
best outcomes” (Tervalon & Murray-Garcia, 1998).
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WHAT DO YOU NOTICE?
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“EVERY TIME I PREPARE
HIM FOR STAYING ON
TOP OF HIS MEDS…AND
EVERY TIME HE ENDS
UP COMING BACK.”
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THERE ARE MANY FACTORS
AND PROCESSES OUTSIDE
THE INDIVIDUALS CONTROL
THAT INFLUENCE ANY
BEHAVIOR, INCLUDING
HEALTH BEHAVIORS.
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DIMENSIONS OF NON-ADHERENCE
SOCIOECONOMIC FACTORS
• POVERTY
• ILLITERACY
• UNEMPLOYMENT
• FAMILY DYSFUNCTION
• HIGH COST OF TRANSPORT
• HIGH COST OF MEDICATION
• LOW LEVEL OF EDUCATION
• POOR SOCIOECONOMIC STATUS
• UNSTABLE LIVING CONDITIONS
• LONG DISTANCE FROM TREATMENT
CENTER
CONDITION-RELATED FACTORS
• DISABILITY LEVEL
• FOLLOW-UP TREATMENT
• EMPHASIS ON ADHERENCE
• AVAILABLE EFFECTIVE
TREATMENT
• PROGRESSION OF DISEASE
• CO-MORBIDITIES (IE
DEPRESSION & SUBSTANCE
ABUSE)
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Lack of health insurance: more
likely to delay healthcare/go
without necessary medication
Lack of financial resources:
Families of low SES often given a health insurance
plan that limits the amount of services
available
Irregular sources of care: families of low SES less likely to be able to visit
same doctor regularly.
Structural barriers: lack of transport, inability to obtain
convenient appt times
Lack of healthcare providers: the
number of facilities often inadequate where families of
low SES are concentrated
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MAPPING POOR HEALTH: PITTSBURGH, PA
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PATIENT CHARACTERISTICS ASSOCIATED
WITH MEDICATION ADHERENCE CLINICAL MEDICINE & RESEARCH, 2013, JUNE; 11 (2): 54-65.
DESIGN: Retrospective data from a repository within an integrated health system was used to
identify patients ≥18 years of age with ICD-9-CM codes for primary or secondary diagnoses
for any of eight conditions (depression, hypertension, hyperlipidemia, diabetes, asthma or
chronic obstructive pulmonary disease, multiple sclerosis, cancer, or osteoporosis). Electronic
pharmacy data was then obtained for 128 medications used for treatment.
METHODS: Medication possession ratios (MPR) were calculated for those with one condition
and one drug (n=15,334) and then for the total population having any of the eight diseases
(n=31,636). The proportion of patients adherent (MPR ≥80%) was summarized by patient and
living-area (census) characteristics. Bivariate associations between drug adherence and
patient characteristics (age, sex, race, education, and comorbidity) were tested using
contingency tables and chi-square tests. Logistic regression analysis examined predictors of
adherence from patient and living area characteristics.
RESULTS: Medication adherence for those with one condition was higher in males,
Caucasians, older patients, and those living in areas with higher education rates and
higher income. In the total population, adherence increased with lower comorbidity and
increased number of medications.
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HOW DOES THIS CONNECT TO CHILDREN
GROWING UP IN THE INNER CITY?
Psychosocial characteristics of 1,5284–9-year-old asthmatic urban children
and their caretakers.
Caretakers demonstrated considerable asthma knowledge, averaging 84%
correct responses on the Asthma Information Quiz. However, respondents
provided less than one helpful response for each hypothetical problem situation
involving asthma care, and most respondents had more than one
undesirable response, indicating a potentially dangerous or maladaptive
action.
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ENHANCING MEDICATION ADHERENCE
AMONG CHILDREN IN THE INNER-CITY
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CLINICAL IMPLICATIONS: EFFICACY OF
CULTURALLY-HUMBLE INTERVENTION
Significant role of home visits by a nurse
Families provided with opportunities to learn about asthma management in a relaxed setting where open discussion was encouraged
Realistic goals and opportunities to improve adherence were negotiated among the parents, nurse, and the child
Self-confidence in managing asthma was enhanced
Monitoring, feedback, and reinforcement were also used to increase self-efficacy
“… we established medication adherence as a goal to work toward, rather than as a discrete event.”
(Bartlett, Lukk, Butz, 2012).
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“I’M EXHAUSTED.
I FELT LIKE I KEPT
HAVING TO MODEL
APPROPRIATE
PARENTING.”
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Determinants of
Effective Parenting:
Exposure to chronic stress, undesirable
life events, socioeconomic status,
educational attainment of the parent,
parents having had good role models
themselves, age of the parents, parental
mental health, parental employment
and family support.
WHICH OF THESE
DETERMINANTS IS NOT
SHAPED BY INNER CITY
REALITY?
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TOP MALADAPTIVE PARENTING BEHAVIORS CORRELATED TO
LOW SOCIOECONOMIC STATUS
• Emotional unavailability or instability
• Harsh disciplining
• Low supervision
• Lack of structured family life
• Weak parent-child attachment
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PROPHETS OF RAGE
This dance we do, it borders on insane.
We all have names we let bravado mask:
Think Cassius Clay becoming Ali. Blame
This debt we pay to human guile on shame.
That’s why Ramon became Ray-Ray, why Charles
Became Big Slim, then Chucky, Porkchop, Black;
Not Charles, nah never Charles, always in search:
Of room, escape, a way to run and claim
The blocks that buried us, launched us on this,
A flight from freedom. But I digress.
We were all running down demons with our
Chests out, fists squeezed to hammers and I was
Like them, unwilling to admit one thing:
On some days I just needed my father.
- Reginald Dwayne Betts, 2015
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MANY INNER CITY
FAMILIES ARE…
Headed by single females
Who have to work
Many work long hours or have several jobs
Potential Outcomes:
• Lack of parental supervision, children taking on
parental roles
• Increase in violent behavior in children
• Depression and anxiety in both the child and the parent
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PREVALENCE OF
ENDURING MENTAL
ILLNESS IN THE
INNER CITY: CROSSLAND, KAI, DRINKWATER 2001
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APPLICATION TO BANDURA’S
SOCIAL- COGNITIVE THEORY
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“HOW CAN AN EIGHT-
YEAR-OLD GET SO
HEAVY? WHY
DOESN’T ANYBODY
STOP IT?”
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URBAN MINORITY CHILDREN HAVE
SIGNIFICANTLY HIGHER RATES OF
OBESITY AND OVERWEIGHT
• Culturally-founded belief that excess weight is the sign of
a healthy, well-cared-for child
• Perception of safety impacts whether or not a parent is
going to allow their child to play and run outside
• PE no longer offered at many inner city schools due to
budget cuts
• Inner city areas have higher rates of pediatric asthma
which, with obesity, contribute to cycle of sedentary
behavior
• Healthy food choices not accessible due to local
availability and/or financial burden
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2004 STATISTICS FROM CHICAGO
INNER-CITY NEIGHBORHOODS:
The National Health Examination Survey, 1999-2000,
found 13% of children across the country are obese.
Another 13% are overweight.
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WALKABILITY
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• RECREATIONAL FACILITIES THAN
WEALTHEIR AND PREDOMINANTLY WHITE
COMMUNITIES
• SIDEWALKS, PROTECTED BIKE LANES,
STREET DESIGNS THAT SLOW TRAFFIC AND
MAKE IT SAFE TO CROSS, PARKS, GYMS,
AND SHOPS WITHIN WALKING DISTANCE
• SELF-IDENTIFIED “SAFE” SPACES FOR
CHILDREN TO PLAY
THOSE WHO LIVE IN AREAS WITH MORE TRUST OR SOCIAL
COHESION HAVE HIGHER LEVELS OF PHYSICAL ACTIVITY
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"You could take anyone who is experiencing the symptoms of PTSD and the things that we are currently emphasizing in school will fall of their radar. Because it frankly does not matter in our biology … if we don't survive the walk home. American children living in high-crime urban neighborhoods exhibit higher rates of PTSD than U.S. soldiers deployed for combat in Iraq and Afghanistan.”
-Dr. Howard Spivak, 2000 Centers for Disease
Control
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“His family has not
contacted the city
about the accident,
saying they didn’t
know who to
contact.”
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“NOTHING I TRIED
WORKED BECAUSE I
FELT LIKE I CONSTANTLY
HAD TO REDIRECT THE
PATIENT.”
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THE BRAIN DETERMINES WHO WE
BECOME
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THE DEVELOPING BRAIN
BRAINSTEM: controls heart rate, body
temperature and other survival-related
functions. It also stores anxiety or
arousal states associated with trauma.
DIENCEPHALON: relays sensory
information between brain regions and
controls many of the autonomic functions
of the peripheral nervous system.
LIMBIC SYSTEM: stores emotional
information.
NEOCORTEX: controls abstract thought
and cognitive memory.
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BUT HOW DOES THE BRAIN DEVELOP IF A CHILD
EXPERIENCES POVERTY AND TRAUMA BEFORE AGE 5?
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CHILDREN REFLECT THE WORLD IN
WHICH THEY ARE RAISED
NEURODEVELOPMENT IS CHARACTERIZED BY:
1. Sequential development and sensitivity
2. Use-Dependent organization
“The mature organization and functional capabilities of the brain reflect aspects of the quantity, quality and pattern of the somato-sensory experiences of the first years of life. The sequential and use-dependent properties of brain development result in an amazing adaptive malleability, ensuring that an individual’s brain develops capabilities suited for the type of environment he or she is raised in.”
(Perry, 2000)
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DECODING THE HIPPOCAMPUS
RESPONSIBLE FOR:
STORING MEMORIES AND
CONNECTING THEM TO EMOTIONS
SERVES AS PART OF THE LIMBIC
SYSTEM (THE AREA IN THE BRAIN
THAT IS ASSOCIATED WITH
EMOTIONS AND MOTIVATION)
THE LIMBIC SYSTEM IS
RESPONSIBLE FOR FIGHT OR
FLIGHT RESPONSES/PROVIDING
“GUT” FEELING
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CLINICAL IMPLICATIONS
FOR CHILD LIFE PRACTICE
Although they may look outwardly calm, children who have been traumatized
spend most of their live in a state of low-level fear. While in this state, it takes very
little to move them up the arousal continuum. They can respond by using either a
dissociative or hyperarousal adaptation.
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• Recent data collected from a children’s psychiatric hospital in New York shows a majority of the 63 patients in the sample as having been physically abused and living in foster homes. On average, they reported three traumas in their short lives. Yet, only eight percent of the children had received a diagnosis of post-traumatic stress disorder while a third had ADHD.
• Traumatized children often find it difficult to control their behavior and rapidly shift from one mood to the next. They might drift into a dissociative state while reliving a horrifying memory or lose focus while anticipating the next violation of their safety. To a well-meaning teacher or clinician, this distracted and sometimes disruptive behavior can look a lot like ADHD.
HOW CHILDHOOD TRAUMA
COULD BE MISTAKEN FOR ADHD
Children diagnosed with ADHD also experience
markedly higher levels of poverty, divorce,
violence, and family substance abuse.
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“THE WHOLE IV START MOM KEPT YELLING, BE A BIG BOY, DON’T CRY. DON’T CRY OR ELSE YOU’LL GET A WHOOPING.”
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“My father was so very afraid. I felt it in the sting of his black leather belt, which he applied with more anxiety than anger, my father who beat me as if someone might steal me away, because that is exactly what was happening all around us. Everyone had lost a child, somehow, to the streets, to jail, to drugs, to guns. It was said that these lost girls were sweet as honey and would not hurt a fly. It was said that these lost boys had just received a GED and had begun to turn their lives around. And now they were gone, and their legacy was a great fear.”
- Ta Ne’Hasi Coates, Between the World and Me
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“PARENTS LEARN TO PARENT FROM THEIR OWN PARENTS, SO THEY
SEEM TO THINK IT IS THEIR RIGHT TO SPANK”
“63% of inner city mothers admitted to spanking their child within the last
week compared to 20% of the suburban mothers who said they spanked their
child within the last week. 31% of inner city mothers said spanking a child less
than one year old was ok compared to 6% of the suburban mothers.”
(Schuster,
1995)
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WHY?
CYCLICAL MODELS OF PARENTING
FELT TO REFLECT LOVE AND QUALITY PARENTING
INTERPRETATION OF BIBLICAL TEACHINGS
DISPROPPORTIONATELY LOWER INCOME &
EDUCATION
ROOTED IN FEAR THEIR CHILD WILL BECOME
DISOBEDIENT
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The IQs of children
ages 2-4 who were
not spanked were 5
points higher four
years later than the
IQs of those who were
spanked.
The IQs of children
ages 5 to 9 years old
who were not
spanked were 2.8
points higher four
years later than the
IQs of children the
same age who were
spanked.
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WHAT CAN CHILD
LIFE SPECIALISTS
DO TO BETTER
SUPPORT INNER
CITY FAMILIES?
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Patient-centered culturally sensitive health care has the
following specific characteristics:
(a) it emphasizes displaying patient-desired, modifiable
provider and staff behaviors and attitudes,
implementing health care center policies, and
displaying physical health care center environment
characteristics and policies that culturally diverse
patients identify as indicators of respect for their
culture and that enable these patients to feel
comfortable with, trusting of, and respected by their
health care providers
(b) It conceptualizes the patient-provider relationship as
a partnership that emerges from patient centeredness
(c) It is patient empowerment oriented
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Abandon the persona of the
“all-knowing clinician” and instead adopt the
perspective of the “really curious practitioner.”
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WORKS CITED:
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