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

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.

THERE ARE 42 CHILD LIFE PROGRAMS IN

AMERICAN INNER CITIES

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

THE JOURNEY TOWARD

CULTURAL HUMILITY

CULTURAL SENSITIVITY

CULTURAL COMPETENCY

CULTURAL HUMILITY

SELF EVALUATION: WHERE AM I ON THE CONTINUUM TOWARD

CULTURAL HUMILITY?

“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).

WHAT DO YOU NOTICE?

“EVERY TIME I PREPARE

HIM FOR STAYING ON

TOP OF HIS MEDS…AND

EVERY TIME HE ENDS

UP COMING BACK.”

THERE ARE MANY FACTORS

AND PROCESSES OUTSIDE

THE INDIVIDUALS CONTROL

THAT INFLUENCE ANY

BEHAVIOR, INCLUDING

HEALTH BEHAVIORS.

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)

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

MAPPING POOR HEALTH: PITTSBURGH, PA

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.

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.

ENHANCING MEDICATION ADHERENCE

AMONG CHILDREN IN THE INNER-CITY

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).

“I’M EXHAUSTED.

I FELT LIKE I KEPT

HAVING TO MODEL

APPROPRIATE

PARENTING.”

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?

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

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

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

PREVALENCE OF

ENDURING MENTAL

ILLNESS IN THE

INNER CITY: CROSSLAND, KAI, DRINKWATER 2001

APPLICATION TO BANDURA’S

SOCIAL- COGNITIVE THEORY

“HOW CAN AN EIGHT-

YEAR-OLD GET SO

HEAVY? WHY

DOESN’T ANYBODY

STOP IT?”

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

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.

WALKABILITY

• 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

"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

“His family has not

contacted the city

about the accident,

saying they didn’t

know who to

contact.”

“NOTHING I TRIED

WORKED BECAUSE I

FELT LIKE I CONSTANTLY

HAD TO REDIRECT THE

PATIENT.”

THE BRAIN DETERMINES WHO WE

BECOME

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.

BUT HOW DOES THE BRAIN DEVELOP IF A CHILD

EXPERIENCES POVERTY AND TRAUMA BEFORE AGE 5?

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)

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

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.

• 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.

“THE WHOLE IV START MOM KEPT YELLING, BE A BIG BOY, DON’T CRY. DON’T CRY OR ELSE YOU’LL GET A WHOOPING.”

“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

“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)

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

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.

WHAT CAN CHILD

LIFE SPECIALISTS

DO TO BETTER

SUPPORT INNER

CITY FAMILIES?

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

Abandon the persona of the

“all-knowing clinician” and instead adopt the

perspective of the “really curious practitioner.”

WORKS CITED: