the power of stories to inspire change: positive parenting ...€¦ · health ill-literacy...

The Power of Stories to Inspire Change: Positive Parenting and Infant Health and Safety Promotion Using Children's Books

John S. Hutton (MS)2 MD, Assistant Professor

Cincinnati Children’s Hospital Medical Center Reading and Literacy Discovery Center

Disclosures

• Dr. Hutton is the author and editor of children’s books featured in this talk, and founder of blue manatee press, their publisher.

• All proceeds from Sleep Baby Safe and Snug, featured in research mentioned in this talk, benefit the non-profit Charlie’s Kids Foundation.

• Dr. Hutton has received and currently receives no financial compensation in these roles.

Portrait of the scientist as a young man…

Pre-Test: what is this?

A) A test preparation manual

B) A nostalgic compliment to videos & apps

C) A chew toy

D) A neat thing to read if there’s time

E) A CATALYST for human engagement

Books From BirthAAP Literacy Recommendations

• Begin daily shared reading beginning as soon as possible after birth, which…

“…stimulates optimal patterns of brain development and strengthens parent-child

relationships at a critical time in child development, which, in turn, builds language, literacy, and social-emotional skills that last a

lifetime.”

High, P. C. and P. Klass (2014). "Literacy promotion: an essential component of primary care pediatric practice.”

Books From BirthAAP Literacy Recommendations

• Begin daily shared reading beginning as soon as possible after birth, which…

“…stimulates optimal patterns of brain development and strengthens parent-child

relationships at a critical time in child development, which, in turn, builds language, literacy, and social-emotional skills that last a

lifetime.”

Health Literacy

“An individual’s capacity to obtain, process, and understand basic health information needed* to

make appropriate health decisions.”

* And think it is meaningful enough...

Source: Nielsen-Bohlman L, et al, eds. In: Health Literacy: A Prescription to End Confusion. Bethesda, MD: National Academies Press; 2004.

Health ill-Literacy

• Affects 30-36% of US households

• Negative parenting & inadequate preventive care behaviors (1.4-4x)– Overutilization of acute/underutilization of preventive

– Poor adherence to treatments, immunization schedules, anticipatory guidance

– Medication dosing/formula mixing errors

– Decreased breastfeeding

– Increased smoking

– Increased injuries and infant mortality

• Highest impact in context of high need for services– Chronic illness – diabetes, asthma, special needs

– Newborn/infant care

Challenge 1: MaterialMismatch

• Average reading level of US parents ~ 7th grade

• Challenges identifying parental reading deficiencies– Social stigma

– Tend to be lower than reported educational level

– Providers overestimate patient/family literacy

• Survey of AAP education brochures– 8th-12th grade reading level

– Recommended 6th-8th grade

• Internet information often exceeds 10th grade level

2: Who remembers their favorite brochure from childhood?

“Alternate, Family-Centered

Platforms needed*…”

* AAP, CDC, NIH statements.

Paging Dr. Seuss:Children’s Books for Health

• Valued/integrated into family routines– Gift from “helpful” health care providers

• Retain information via repeated exposures

• Ease of access of information

• Emotional engagement/salience

• Applications– Health topics: Behavior, milestones, safety

– Reach Out and Read: developmental screening, cognitive & social-emotional benefits

Zuckerman, et al. 2011.Reich, et al 2010, 2011, 2012

HEALTH

HEALTH LITERACY

LITERACY

The Usual Approach

HEALTH

HEALTH LITERACYLITERACY

“Novel” Approach•Anticipatory Guidance•Bibliotherapy

Example: SUID(Sudden Unexplained Infant Death)

• Leading cause of infant mortality from 1 month to 1 year of age

– SIDS (42%), ASSB (25%), unknown (31%)

• ~3500 sleep-related deaths/year in US

– Peaks between 1-3 months old

– Skewed towards low-income/minority

– Bed-sharing: major risk factor, esp younger

CDC/NCHS, National Vital Statistics System.Moon, et al. AAP Policy Statement. Pediatrics. November 2016.

SUID/SIDS Trends

SOURCE: CDC/NCHS, National Vital Statistics System 2016

39.4 deaths/100,00070% decrease

130.3 deaths/100,000

AvoidBed-sharing

AAPStatement

AAP Safe Sleep Recommendations

✓ Diligent prenatal care✓ Back to Sleep (supine) up to 1 year old✓ Exclusive crib use✓ Always use a firm sleep surface/mattress, fitted sheet ✓ No soft bedding, pads or objects in crib✓ Room sharing for at least 6 months✓ Avoid bed-sharing, esp in first 4 months✓ Exclusive breastfeeding✓ Pacifier use after breastfeeding is established✓ Avoid overheating/over-bundling✓ Avoid smoking & alcohol use✓ Keep immunizations up to date

Moon, et al. AAP Policy Statement. Pediatrics. November 2016.

How will I ever learn all of that stuff?

Intervention: Children’s Book

• Flesch-Kincaid 1st grade reading level• 4th grade – back cover

Sample spread:Room sharing, avoid bed sharing

Sample spread: Supine Positioning

Control:Safe Sleep Brochures

• 5 customary: NICHD, AAP, ECS, MCHB, Nemours KidsHealth• Flesch-Kincaid 5th-10th grade reading level• HV discretion at each visit, generally use all 5

Setting• Home visiting, 8 community agencies

– SW Ohio + northern Kentucky

– Standardized training, curriculum

– Established research infrastructure• HV collect data and provide anticipatory guidance

• First-time, at-risk mothers:– Unmarried (89.0%), low income (86.6%),

late/no prenatal care (25.8%), under 18 (30%)

➢For this study: English-speaking, over 15 y/o

Safe sleep knowledgeSafe sleep adherence

Maternal utilityReview book

Home visitor utility

Book Brochures

~1 Week Home Visit

~2 Months Home Visit


Maternal utilityReview brochures



Maternal utilityReview book



Maternal utilityReview brochures


Health Literacy (REALM) Safe sleep knowledge

Present bookHome visitor utility

Health Literacy (REALM) Safe sleep knowledge

Present brochuresHome visitor utility

3rd TrimesterHome Visit

Randomize by HV• Agency• Experience

Results

Knowledge: “Name as many things as you can think of to help keep your baby safe from SIDS.”

Hutton, et al. Academic Pediatrics, 2017.

✓ 11-item checklist

36%, 50%

7%, 9%

45%, 65%

Knowledge items

p < 0.05

• Back to sleep & items in bed ~75% at baseline (NS)• Breastfeeding 15-20% (NS)


✓ Not smoking ✓ No co-bedding✓ Crib use

Adherence With Recommendations

p < 0.05

✓ ~ 2x more crib use and ~3x material sharing for book group✓ ~ 1/2 less bed-sharing for book group (obs & report)


Home Visitor Helpfulness

Hutton, et al. under review, 2016.

Time of presentation• 8.81 min (book) • 10.13 min (brochures); p<0.05

Conclusions

• Overall safe sleep knowledge gains equivalent– Item-level differences

• Intimate/sleep-related favored book• Prescriptive (not smoking) favored brochures

• Adherence ~2-3x better for book– Not bed-sharing, crib use, materials sharing with baby➢Readability, emotional engagement

• Greater potential for dialogue with book• Health literacy ~ independent of engagement?

➢ “Know what to do” vs. motivation to change➢Positive, salient messaging from baby’s point of view

Children’s books are a feasible, scalable, effectivemode of pediatric anticipatory guidance, especially in terms of adherence

“I wish we had a book about Shaken Baby Syndrome. That’s

really hard to talk about…”

- An ECS home visitor involved in the RCT

Abusive Head Trauma

• Most common cause of mortality and morbidity in physical child abuse

• 33%-56% of brain injuries in children < 1 year of age were inflicted.

• Data from the Carolinas demonstrated that the rate of abusive head trauma was 17.0 cases per 100,000 live births

– But, they estimate that for every child < 2 years who sustains a serious head injury another 152 go undetected

Theodore, et al., 2005

Abusive Head Trauma Victims

• Infants and toddlers at greatest risk

• Mean age at time of injury around 4 months

• Slightly greater male : female

• Crying: only child-specific variable consistently

identified as important to the escalation of shaking

Abusive Head Trauma Perpetrators

• Risk Factors

– Depression: • interference with parent-child relationship (recall AAP Reading Recs)

• reduced stress tolerance

• impaired problem solving

– Substance abuse

– Lack of social support / social isolation

– Poor caregiver-child relationship (inappropriate expectations of child)

– Situational times of high stress (poverty, unemployment)

• Crosses all socioeconomic and cultural lines

Starling et al., 1995; Krugman et al., 1986

Calm Baby Gently Program

• Initiative of the Mayerson Center for Safe and Healthy Children and the Council on Child Abuse

• Goal: To prevent abusive head trauma in Greater Cincinnati by educating caregivers on infant crying and the dangers of shaking during the critical period of 1-2 months of age

• Partners: 18 local health centers &primary care practices

CALM BABY GENTLY PROGRAM

• At the 1 month well-child visit:

• Pediatric providers give the educational baby book, “Calm Baby Gently,” to caregivers as a gift

• Providers use the book as a prompt to teach caregivers about when and why infants cry, what they can do to respond and stay calm, and the benefits of early reading

• Book contains phone number for the Crying Baby Helpline

• At the 2 month well-child visit:

• Practices give a one-page survey to caregivers asking about their infant’s crying, how they are responding and coping, and whether the book was helpful

• Providers can use the survey to assess parent needs

WHY THE ONE MONTH VISIT?

Hours of infant crying peak

between 1-2 monthsRates of abusive head trauma

peak between 2-4 months

Other reasons (seed & soil):• Receptiveness to information in birthing hospital (fatigue, afterglow, overload)• Proximity to developmental stage: “Is this important for my baby right now?”

Back Cover Front Cover

In Spanish ->

(Sensitive Period)

(Unexplained Crying)

(Frustrated Caregivers)

(First and Foremost…)

(Calming Strategies)

(Ask for Help)

(Hope: The Sun Rises Again)

Preliminary Data (2016):Book Distribution

• 84% (211/252) of caregivers received the book

• 91% (192/211) of caregivers who received the book read the book

– 54% had another caregiver read the book

– Caregivers read the book a median of 2 times

Preliminary Data (2016):Caregiver Survey

• 252 caregivers completed the survey– Mother: 236– Father: 15– Foster parent: 1

• “If you thought the book was helpful, what was helpful about it?”– Reminder about crying– Calming / Reassuring / Community– Baby liked being read to– Tips– Focuses on baby / understanding about crying– Resource

Preliminary Data (2016):Helpfulness Feedback

• “It reassures that it is ok - if you cannot calm your baby, and it is okay to walk away and regroup”

• “It just tells me we are not alone. Understanding it from baby point of view”

• “It made my baby smile”

• “It just reminds you to stay calm, walk away for a minute”

• “I really like the line ‘Please don't yell at me’”

• “Reminder to be sweet and calm. Not her fault”

So, why do books work?

• Health literacy– Simple story and reading level, jargon-free

– Non-threatening, positive

• Power of narrative– Time tested means to explain our world

– Baby’s point of view, telling the story

• Engagement with message (salience)– Know what to do vs. motivation to do it

– Sense of importance

Other ideas?

Shared Reading & Talking

Safe Baby Spacing(Milestones)

Developmental Milestones• First 2 years• Parent-child engagement• Your baby needs you!

Breastfeeding

Baby Unplugged™

(Screen Time)

Dialogic Reading

Bibliotherapy: ADHD

Viruses, mostly

Thank You!

“Questions?”

Contact:• [email protected]• [email protected]

the power of stories to inspire change: positive parenting ...€¦ · health ill-literacy...

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