A Qualitative Study of Adverse Childhood Experiences of

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A Qualitative Study of Adverse Childhood Experiences of Low-Income Youth in Philadelphia Roy Wade,

A Qualitative Study of Adverse Childhood Experiences of Low-Income Youth in Philadelphia Roy Wade, Jr. , M. D. , Ph. D. , MPH Judy A. Shea Ph. D. David Rubin M. D. , M. S. C. E. Joanne Wood M. D. , M. S. H. P

Adverse Childhood Experience Study • Published by CDC/Kaiser in 1998 Childhood Exposure Psychological Abuse

Adverse Childhood Experience Study • Published by CDC/Kaiser in 1998 Childhood Exposure Psychological Abuse Physical Sexual • Surveyed 17, 000 policy holders • Understand relationship between childhood adversity & adult health outcomes Subcategory Substance abuse Mental illness Household dysfunction Intimate partner violence Criminal behavior Divorce Neglect Emotional Physical

High Prevalence of Adverse Childhood Experiences among Participants Childhood Exposure Abuse Household dysfunction Neglect

High Prevalence of Adverse Childhood Experiences among Participants Childhood Exposure Abuse Household dysfunction Neglect Subcategory Prevalence Psychological 11 % Physical 28 % Sexual 21 % Substance abuse 27 % Mental illness 19 % Intimate partner violence 13 % Criminal behavior 5% Divorce 23 % Emotional 15 % Physical 10 %

Higher ACE Scores Associated with Worse Health Outcomes • Graded relationship between number of

Higher ACE Scores Associated with Worse Health Outcomes • Graded relationship between number of childhood exposures – Adult health risk behaviors – Adult diseases • Individuals with 4 or more categories of childhood exposures – 4 to 12 -fold increased risk for health risk behaviors – 1. 4 to 1. 6 -fold increased risk for adult diseases

Outcomes Associated with ACEs: A Life Course Perspective Childhood: Fetal Death Developmental Delay Behavioral

Outcomes Associated with ACEs: A Life Course Perspective Childhood: Fetal Death Developmental Delay Behavioral Problems Cognitive Impairment Adolescence to Young Adulthood: Mental Health Academic Achievement Juvenile Justice Adulthood: Mental Health Physical Health Disability Early Mortality

Conceptual Model http: //www. cdc. gov/ace/pyramid. html

Conceptual Model http: //www. cdc. gov/ace/pyramid. html

AAP Policy Statement on ACE Identifying children at high risk for toxic stress is

AAP Policy Statement on ACE Identifying children at high risk for toxic stress is the first step in providing targeted support for their parents and other caregivers. … Pediatric practices have been asked to consider implementing standardized measures to identify other family- or community-level factors that put children at risk for toxic stress … the AAP and others have encouraged pediatric providers to develop a screening schedule that uses age-appropriate, standardized tools to identify risk factors that are highly prevalent or relevant to their particular practice setting.

Current ACE Screening Tools May be Insufficient • Additional domains – – Hunger Homelessness

Current ACE Screening Tools May be Insufficient • Additional domains – – Hunger Homelessness Insufficient clothing Family support & love • None have been undergone psychometric testing • None informed by children and youth

ACE Study Population is not a Representative Population Demographics ACE Study Philadelphia Mean age

ACE Study Population is not a Representative Population Demographics ACE Study Philadelphia Mean age 56 34 79% White 41% White 5% African American 43% African American 5% Hispanic 12% Hispanic High school graduates 94% 36% College graduates 43% 13% Percent below FPL Not measured 25% Race/ethnicity

Improving the ACE Scale

Improving the ACE Scale

ACE Scale Does Not Include All the Relevant Adversities Original Emotional abuse Physical abuse

ACE Scale Does Not Include All the Relevant Adversities Original Emotional abuse Physical abuse Sexual abuse Physical neglect Emotional neglect Mother treated violently Household substance abuse Household mental illness Incarcerated household member • Parental separation or divorce • • • • • Additional Adversities Property victimization Peer victimization Exposure to community violence Socioeconomic status Someone close had a bad accident or illness Below-average grades Parents always arguing No good friends

Specific Aims • Specific Aim 1: Use focus groups to identify and characterize the

Specific Aims • Specific Aim 1: Use focus groups to identify and characterize the range of adverse events experienced by low-income urban youth • Specific Aim 2: Describe the relative significance of adverse events experienced by low-income urban youth

Focus Group Design • Series of focus groups with young adults • Nominal Group

Focus Group Design • Series of focus groups with young adults • Nominal Group Technique – Generate list of adverse childhood experiences – Prompt participants with a list of known childhood stressors – Prioritize items on list based on relative significance

Sampling Strategy Starred regions areas in the city in which a focus group was

Sampling Strategy Starred regions areas in the city in which a focus group was held.

Participating Organizations Covenant House Lutheran Settlement House CHOP Adolescent Clinic Health Annex Boys and

Participating Organizations Covenant House Lutheran Settlement House CHOP Adolescent Clinic Health Annex Boys and Girls Club of Philadelphia YMCA of Philadelphia & Vicinity Department of Behavioral Health City of Philadelphia (Youth Move Program) Philadelphia Association of CDC’s

Study Participants • Inclusion criteria • Ages 18 to 26 • Lived in Philadelphia

Study Participants • Inclusion criteria • Ages 18 to 26 • Lived in Philadelphia at least half of childhood from birth to age 18 • Targeted individuals who grew up in low-income neighborhoods (defined as at least 20% of the residents of that community at or below the Federal Poverty Level) • Exclusion Criteria • Non-English Speaking

Analysis • Review ranked lists for common themes • Develop final ranked list of

Analysis • Review ranked lists for common themes • Develop final ranked list of adverse experiences • Member checking process & discussion of context surrounding themes

Study Participant Demographics Sex Race/Ethnicity Neighborhood Poverty Level (100% FPL) Percent of Individuals Male

Study Participant Demographics Sex Race/Ethnicity Neighborhood Poverty Level (100% FPL) Percent of Individuals Male 55 Female 45 Non-Hispanic Caucasian 5 Non-Hispanic Black 71 Hispanic Black 5 Native American Black 1 Hispanic 8 Native American 2 Asian 3 Less than 10% 5 10 to 20% 11 20 to 40% 51 Greater than 40% 33 Number of focus groups = 19 Number of participants = 119

Domains of Most Stressful Experiences Domain Number of Responses Family Relationships 195 Community Stressors

Domains of Most Stressful Experiences Domain Number of Responses Family Relationships 195 Community Stressors 119 Personal Victimization 72 Economic Hardship 67 Peer Relationships 35 Discrimination 23 School 22 Health 17 Child Welfare/Juvenile Justice 8 Media/Technology 5

Family Relationships Family Relationship Subdomains Number of Responses Family Members Abusing Alcohol & Drugs

Family Relationships Family Relationship Subdomains Number of Responses Family Members Abusing Alcohol & Drugs * 37 Lack of Love & Support in the Family * 33 Single Parent Homes * 30 Death & Illness of Family Members * 21 Violence in the Home * 20 Poor Parenting & Lack of Guidance * 20 Criminal Activity by Family Members * 15 Having to Take on Adult Responsibilities * 14 Violent Victimization of Family Members by Individuals Outside of the Home 4 Representative Quote “My mom said, I ain’t teach you nothing because I want you to go through the same thing I went through…it’s just like heartless, like you just don’t care. My parents couldn’t show me [love]. They made me feel like I was just there for a check. ” * In at least one focus group these experiences were identified only after prompting

Community Stressors Community Stressor Subdomains Number of Responses Neighborhood Crime, Violence, and Death *

Community Stressors Community Stressor Subdomains Number of Responses Neighborhood Crime, Violence, and Death * 57 Negative/Adult Behavior in the Neighborhood * 50 Neighborhood Nonviolent Crime * 12 Representative Quote “There were shootings every night, so much so that the kids couldn’t play outside. You wake up in the morning and find that someone from your friend’s family passed away. ” * In at least one focus group these experiences were identified only after prompting

Personal Victimization Subdomains Number of Responses Child Abuse * 33 Bullying * 16 Child

Personal Victimization Subdomains Number of Responses Child Abuse * 33 Bullying * 16 Child Neglect * 9 Violent Crime (Nonsexual) 7 Nonviolent Crime * 3 Rape 3 Being chased by cops 1 * In at least one focus group these experiences were identified only after prompting

Economic Hardship Subdomains Number of Responses Not Enough Money * 35 Lack of Nonmonetary

Economic Hardship Subdomains Number of Responses Not Enough Money * 35 Lack of Nonmonetary Resources (hunger, homelessness, lack of adequate housing, lack of utilities, housing instability) * 31 Watching Parents Struggle to Make Ends Meet * 1 Representative Quote “The hardest thing for me was watching my mom struggle [financially to pay for] food, utilities, bills” * In at least one focus group these experiences were identified only after prompting

Peer Relationships Subdomains Number of Responses Peer Pressure 13 Death of Friends 11 Problems

Peer Relationships Subdomains Number of Responses Peer Pressure 13 Death of Friends 11 Problems with Friends & Peers 9 Victimization of Friends (Violence) 2

Discrimination Subdomains Stereotypes, Racism, Discrimination * Number of Responses Representative Quote 23 “stereotyping… it’s

Discrimination Subdomains Stereotypes, Racism, Discrimination * Number of Responses Representative Quote 23 “stereotyping… it’s mostly white people, the way they look at you when you are out walking in the street, they try to downgrade [you]… I’ve seen people follow [black people] around the store. They already got a mindset about us before they even know who we are. ” * In at least one focus group these experiences were identified only after prompting

School Subdomains Number of Responses Poor Quality Schools 14 Lack of Safety in Schools

School Subdomains Number of Responses Poor Quality Schools 14 Lack of Safety in Schools 3 Academic Problems 3 School Issues 2

Health Subdomains Number of Responses Teenage Pregnancy 9 Lack of Access to Quality Healthcare

Health Subdomains Number of Responses Teenage Pregnancy 9 Lack of Access to Quality Healthcare 5 Personal Illness 3

Child Welfare/Juvenile Justice Subdomains Number of Responses Experiences with the Foster Care System *

Child Welfare/Juvenile Justice Subdomains Number of Responses Experiences with the Foster Care System * 6 Experiences with the Juvenile Justice System * 2 * In at least one focus group these experiences were identified only after prompting

Media/Technology Subdomains Number of Responses Mass Media Control 3 Social Media Intrusion into Personal

Media/Technology Subdomains Number of Responses Mass Media Control 3 Social Media Intrusion into Personal Lives 2 Representative Quote “feeling like the government is [using media] to make you think a certain way”

Adding to the ACE Instrument ACE Items Additional Items from Our Study Substance Abuse

Adding to the ACE Instrument ACE Items Additional Items from Our Study Substance Abuse Mental Illness Intimate Partner Violence Criminal Behavior Divorce/Separation *Lack of Love & Support Family Relationships *Witness to Violence/Abuse Community Stressors Child Abuse Neglect Personal Victimization *Hunger *Homelessness *Insufficient Clothing Economic Hardship Peer Relationships Discrimination School Health *Experience with Foster Care Child Welfare/Juvenile Justice Media/Technology * These items added to later versions of ACE Questionnaire

Key Findings • Participants endorsed broader experiences of adversity • Family dysfunction most commonly

Key Findings • Participants endorsed broader experiences of adversity • Family dysfunction most commonly cited adversity – Loss of love and support – Single parent homes • Other commonly cited stressors of lack of safety and economic hardship

Key Findings • Relatively low number of respondents endorsed racism and discrimination • Few

Key Findings • Relatively low number of respondents endorsed racism and discrimination • Few participants endorsed corporal punishment /harsh parenting as a stressor

Implications • Develop a broader understanding of adversity • Incorporate a youth informed perspective

Implications • Develop a broader understanding of adversity • Incorporate a youth informed perspective of adversity • Understand the complexity of adversity • Understand the biological significance of broader experiences

Limitations • Generalizability of findings • Focus group format might have limited discussion of

Limitations • Generalizability of findings • Focus group format might have limited discussion of sensitive issues • Relied on retrospective recall of adverse childhood experiences

Conclusion • Participants identified broad set of adverse experiences • Importance of incorporating youth

Conclusion • Participants identified broad set of adverse experiences • Importance of incorporating youth perspective into understanding of adversity

Acknowledgements Joanne Wood Judy Shea David Rubin RWJF Clinical Scholars Program • Community Partners

Acknowledgements Joanne Wood Judy Shea David Rubin RWJF Clinical Scholars Program • Community Partners • Study Participants • •