Stressors Associated with Caring for Children with Complex Health Conditions in Ohio

1. Stressors Associated with Caring for Children with Complex Health Conditions in Ohio Anthony Goudie, PhD Marie-Rachelle Narcisse, PhD David Hall, MD Ohio Employer and Ohio Family Health Research Conference, July 29, 2011  

2. Outline • Motivation and Specific Aims • Definitions • Demographics • Stressors • Caring for CCHC: Implications for Medicaid • Interventions: The Case for Respite Care • Policy Recommendations

3. Stressors Associated with Caring for Children with Complex Conditions in Ohio Motivation and Specific Aims

4. Findings from an Ohio Developmental Disability Council Sponsored Research Project

5. * Responses only from those who responded YES to Difficulty Paying for Medical Bills Source: OFHS 2008

6. Caring for a child with disability causes financial stress Source: NS–CSHCN 2005/06

7. Caring for a child with disability is associated with emotional stress Source: NSCH 2007

8. Specific Aims • Identify and profile children in Ohio with complex health • conditions and the parents who care for them. • Examine the differences, if any, in stress levels between parents caring for children with complex health conditions and those caring for typical children. • Identify heterogeneous populations based on patterns of responses to financial, economic and psychological stressors. • Identify viable interventions to help parents caring for children with complex health conditions cope with stress.

9. Stressors Associated with Caring for Children with Complex Conditions in Ohio Definitions

10. Children with Complex Health Conditions … • … are children 0-17 years of age who have a • functional limitation (children who are limited or prevented in any way in their ability to do the things most children the same age do) • and/or a • developmental, behavioral, or emotional problem that requires ongoing treatment or counseling

12. Financial Stressors 1. Problems paying or unable to pay for medical bills 2. Unable to pay for basic necessities * 3. Used up most of personal savings * 4. Had large credit card debt or had to take a loan of any kind * 5. Had to declare bankruptcy * * Only asked to those who responded YES to problems or unable to pay for medical bill

13. Economic Stressors 1. Problems paying rent, mortgage, or utility bill 2. Received financial help to pay for rent, mortgage or utilities * 3. Children moved in with others due to inability to pay bills * 4. Savings will cover 6 months of current expenses * Only asked to those who responded YES to problems paying rent, mortgage or utility bill

14. Psychological Stressors In past 30 days, how often did the parent feel … 1. Sad 2. Nervous 3. Restless or fidgety 4. Hopeless 5. Everything is an effort 6. Worthless Kessler 6

15. Stressors Associated with Caring for Children with Complex Conditions in Ohio Demographics

16. Child Population

17. Child Age Groups CCHC non-CCHC

18. Child Gender CCHC non-CCHC

19. Child Race/Ethnicity CCHC non-CCHC

20. Child Insurance Coverage

21. Parent Age Groups CCHC non-CCHC

22. Parent Marital Status CCHC non-CCHC

23. Parent Education Status CCHC non-CCHC

24. Stressors Associated with Caring for Children with Complex Conditions in Ohio Stressors

25. Financial Stressors * Difference between groups statistically significant at α = 0.05

26. Economic Stressors * Difference between groups statistically significant at α = 0.05

27. Psychological Stressors * Difference between groups statistically significant at α = 0.05

28. Serious Psychological Distress * Difference between groups statistically significant at α= 0.05

29. Multivariable Logistic Regression Outcome Variable: Individual Stressors Main Predictor: Complex Health Condition Status i) No complex health condition – Reference Class ii) Developmental, behavioral, or emotional problem iii) Functional limitations

30. Multivariable Logistic Regression Covariates: Child – Age group, gender, race/ethnicity, health insurance status Parent – Age group, marital status, education status, region of residence

31. Multivariable Logistic Regression Financial Stressors 95% confidence interval bars Adjusted odds ratio Compared to parents who raise children with no complex health conditions and with all other covariates held constant, those caring for a child with developmental, behavioral, or emotional problems are 1.8 times as likely to have problems paying or are unable to pay for medical bills. No statistically significant difference (at α = 0.05) in problems paying or ability to pay bills between parents caring for children with functional limitations and children with no complex health conditions.

33. Economic Stressors

34. Psychological Stressors

35. Serious Psychological Distress CI = Confidence Interval

36. Mental Health Needs

37. Latent Class Analysis • Latent class analysis (LCA) is a way to identify heterogeneous discrete classes of meaningful patterns in responses across a number of discrete outcome variables that measure a single construct.

38. Latent Class Analysis • An “improved” cluster analysis • Parameters derived based on statistical likelihood • Cases have a probability of membership in classes and are not absolutely assigned to them • LCA is a model-based method for classification • LCA fits a statistical model to the data • LCA is a response-oriented approach to modeling a single construct

39. Overall Response

40. Response by Latent Class Assignment

41. Low Stress Parents

42. Only Financial and Economic Stress

43. Very High Stress

44. Latent Class Assignment AOR Model adjusted for child age, gender, race/ethnicity, health insurance status, parent age, marital status, education status, and poverty level.

45. Result Conclusions • Medicaid covers almost 2 out of 3 CCHC • Nearly 1 in 5 parents caring for CCHC have serious psychological distress • Parents caring for CCHC are more likely to have stress of all types compared to parents caring for non-CCHC • Mostly all parents with psychological stress are comprised in one latent class representing roughly 10% of the population

46. Limitations • One parent and one child surveyed per family • Financial and economic stressor responses too limited • Financial and economic stressors are relative to socio-economic status

47. Stressors Associated with Caring for Children with Complex Conditions in Ohio Caring for Children with Complex Conditions: Implications for Medicaid

48. Financial Stressors

49. Economic Stressors

50. Psychological Stressors