Risk and Protective Factors for Mental Health Problems among CYSHCN

1. Risk and Protective Factors for Mental Health Problems among CYSHCN Joän M. Patterson, PhD Maternal and Child Health Program School of Public Health University of Minnesota

2. Key Points • Is there evidence that children with chronic physical health conditions experience more mental health problems? • What factors are associated with increased risk for mental health problems? • What factors protect CYSHCN from mental health problems?

3. 1970 Rochester NY Child Health Survey1 Kids with CC & matched sample without CC Parent report of abnormal behavior/emotional problems 6-10 year olds……………………………………………….. 11-15 year olds……………………………………………… 1987 Ontario Child Health Study2 2,888 children 4-16 years 18% with CC 1 or more psychiatric disorders (parent interview) With chronic illness AND disability………………………… With chronic illness only……………………………………. Chronic Condition YES NO 23% 16% 30% 13% 31% 14% 22% 14% Epidemiologic Studies of Psychosocial Problems in Children with Chronic Physical Conditions 1 Haggerty RJ et al. Child Health and the Community. New York: Wiley, 1975. 2 Cadman D et al. Chronic illness, disability, and mental and social well-being. Pediatrics 1987;79:805-13.

4. Meta-Analysis of Child Psychological Adjustment to Physical Disorders* • Methods • Reviewed 87 studies of children 3-19 years • Multiple physical disorders represented • Child adjustment based on score from parent, teacher, or mental health professional • Results Mean Effect Size • Overall adjustment 0.62 • Internalizing problems 0.55 • Externalizing problems 0.26 * Lavigne JV, Faier-Routman J. Psychological adjustment to pediatric physical disorders. J Ped Psychol 1992; 17:133-57.

5. Meta-Analysis of Depression in Children with Chronic Conditions* • 60 clinical studies of multiple chronic conditions • 49 based on child report • Mean effect size = 0.27 (this is small) • 18 studies used diagnostic interview • Median prevalence of major depressive disorder = 9% (vs. 1% - 5% in community samples) • Higher rates of depressive symptoms • For parent ratings vs. child ratings * Bennett DS. Depression among children with chronic medical problems. J Ped Psychol 1994;2:149-69.

6. Conclusions re Evidence • Greater variability within a condition than between different conditions • Greater negative effects for sensory and neurologic disorders • No difference between fatal and nonfatal disorders • Parent report associated with more child mental health problems than child report • Generally higher rates of SYMPTOMS of psychological and behavioral problems • But NOT higher rates of psychiatric mental disorder • MOST children with chronic health conditions show good psychosocial adjustment

7. Multiple Risk Factors Associated with Poorest Outcomes* • 1981 NHIS, Child Health Supplement • 11,699 youth, ages 4-17 years • 1,036 with any of 19 chronic physical conditions (8.9 %) • Parent report of youth behavior problems • 12 times greater risk of behavior problems if child • Had a chronic condition • Was male • Was living in household with single parent • Was born before mother was 20 years old * Gortmaker S et al: Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Pediatrics 1990; 85:257-76.

8. Cumulative Impact of Risk Factors O u t c o m e 0 1 2 3 4 5 6 7-8 Number of Risk Factors

9. Generic Individual Risk Factors • Genetic inheritance • Exposure to injury, infection, toxicants, nutritional deficiencies (in-utero or after) • Difficult temperament

10. Generic Family Risk Factors • Parental depression/psychopathology • Parental substance abuse • Unresolved family conflict and/or domestic violence • Physical or sexual abuse • Psychological maltreatment • Parental criticism and contempt • Prolonged family stress due to death, divorce, etc. • Chronic poverty

11. Generic Community Risk Factors • Living in neighborhoods characterized by • Concentrated poverty • Social disorder, gangs, and violence • High residential mobility • Sustained fear of crime • Social isolation • Discrimination and racism • Aggressive, anti-social peer groups • Peer bullying, teasing, harassment • Poor quality schools

12. Risk Factors Associated with Special Health Needs • Medical factors • Greater functional limitation • Characteristics of the chronic condition more important than specific diagnoses. Risk increases with: • Brain involvement • Multiple impairments • Painful medical procedures • Recurrent hospitalizations • Degree of visibility • Invisible conditions associated with greater stress and uncertainty • Uncertainty – course, prognosis, symptoms

13. Risk Factors Associated with Special Health Needs • Poor parent and family adaptation • Due to financial problems • Parental conflict • Single parent status • Parent exhaustion • Parent depression

14. Risk Factors Associated with Child Adjustment Problems • Medical Correlation • Diminished functional status 0.23* • Child • Poor coping 0.43* • Low IQ 0.56* • Parent and family factors • Maternal maladjustment 0.40* • Paternal maladjustment 0.15 • Marital discord 0.21* • Family stress 0.25* • Poor family functioning 0.38* *Lavigne J, Faier-Routman J. Correlates of psychological adjustment to pediatric physical disorders: J Dev Beh Peds 1993;14:117-123

15. Risk Factors Associated with Special Health Needs • Maltreatment is 3.4 times more likely among children with disabilities • Most likely by a family member- may be related to • Long-term dependency needs • Challenging behavior • Inability to communicate preferences • Emotional stress of providing care • Lack of knowledge about child’s condition, unrealistic expectations

16. Risk Factors Associated with Special Health Needs At community level: • Social stigma and isolation • Inaccessibility (despite ADA) • Peer teasing, rejection, bullying • Quality of and access to services • Health, education, recreation, social services, transportation, jobs • Family hassles and conflicts with service providers

17. Risk Processes in Families of Children with Chronic Conditions • Becoming socially isolated • Added demands on time • Child and/or family experiences stigma • Physical and emotional exhaustion • Withdrawal of some friends and relatives

18. Risk Processes in Families of Children with Chronic Conditions • Conflicts with service systems • Providers who do not respect families • Inadequate or contradictory information • Payers who deny health services for children with chronic health conditions • Policy changes regarding eligibility for services • Negative public attitudes about education costs for children with chronic health conditions

19. Risk Processes in Families of Children with Chronic Conditions • Health of caregivers declines • Conflicts with service providers & payers • Burden of providing home care • Loss of support network • Worry about well-being of other family members

20. Risk Processes in Families of Children with Chronic Conditions • Less effective parenting • Parental depression may reduce ability to provide emotional support to child • Greater challenges in “reading” and responding to baby’s cues • Uncertainty about setting appropriate limits and expectations for child’s behavior

21. Risks May Lead to Child Functioning Problems Increase in Caregiver Depression Child Functioning Problems Caregiving Burden Less Effective Parenting Family Social Isolation

22. Generic Protective Factors • Individual • Outgoing temperament • Social skills • Self-efficacy • Innate intelligence

23. Generic Protective Factors • Family • Stable two-parent family structure • Positive extended family connections • High quality parent-child relationships • Family closeness, warmth, trust, open communication • Authoritative parenting • High levels of warmth and support • High levels of monitoring, limit-setting, behavioral regulation

24. Generic Protective Factors • Community • Competent, achievement-oriented peers • Social capital – neighborhood cohesion and collective efficacy • Support from adults in school and community • Age-relevant resources (childcare, libraries, parks, recreation) • High quality health care • Good schools

25. Protective Processes in Families of Children with Chronic Conditions • Increase in family’s sense of mastery • Acquiring knowledge about child’s condition • Providing specialized health and education services • Learning how to “navigate” service systems • Becoming an advocate for children with chronic health conditions

26. Protective Processes in Families of Children with Chronic Conditions • Strengthening family cohesiveness • Working together to manage extra responsibilities • Knowing we are “in this together” • Recognizing strengths in each other • Turning to family members when others are insensitive or unkind • Greater respect and care for each other • Doing more things together as a family

27. Protective Processes in Families of Children with Chronic Conditions • Positive meaning making • Seeing the specialness in their child’s condition; accepting what is • Paying more attention to each person’s abilities • Valuing the uniqueness of their family • Developing a new outlook on what is important in life -- linked to spiritual beliefs

28. Protective Processes in Families of Children with Chronic Conditions • Achieving family balance • Between child’s special needs and normal needs • Between needs of all family members • Between demands and capabilities

29. Protective Processes May Lead to Good Child Outcomes Developing Positive Meanings Child Emotional And Social Competence Strengthening Family Cohesion Achieving Family Balance Increasing Family Sense of Mastery

30. Comparison of Parents’ Family Functioning Scores to Norms FAM score < 40 = best family functioning; score between 40 – 60 = good functioning; score >60 = problem