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Family Supports for Children with Disabilities: State of the Evidence Review:

Family Supports for Children with Disabilities: State of the Evidence Review:. Dick Sobsey & Peter Calder University of Alberta. Family Support Review Systematic Literature Review. Family Support Bibliography Annotated entries for about 500 studies. Outcomes of Our Project.

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Family Supports for Children with Disabilities: State of the Evidence Review:

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  1. Family Supports for Children with Disabilities:State of the Evidence Review: Dick Sobsey & Peter Calder University of Alberta

  2. Family Support Review Systematic Literature Review Family Support Bibliography Annotated entries for about 500 studies Outcomes of Our Project http://www.ualberta.ca/~jpdasddc/famsupport/Famsup.htm

  3. Family Support Review Family Support Bibliography Outcomes of Our Project Systematic Literature Review Repeated Consultation

  4. Applying levels of evidence to research in human services • Lack of “gold-standard” random assigned and double-blind • Lack of agreement on outcome goals. • Existing program constraints often restrict measures of effects to package interventions • Our primary criterion is assessing methods relevance to the research question.

  5. EBMR: Evidence Based Medicine Reviews Child Abuse, Child Welfare and Adoption Digital Dissertations ERIC Resources in Education Medline (OVID & Endnote interfaces) Academic Search Premier JSTOR Child Abuse, Child Welfare and Adoption PsycInfo Web of Science Some databases searched

  6. Parent Focus Group:Concept Map • Alberta Committee of Citizens with Disabilities selected and invited focus group members • Focus Group members asked to identify elements and issues of family support

  7. Parent focus group: Generate Items

  8. Parent focus group: Sort 65 Items 31 55 57 19 18 60 56 64 58 63 16 17 30 15 59 32 62 8 61 65 33 36 27 35 34 29 50 25 48 28 41 52 42 20 43 7 49 23 22 5 37 47 12 14 40 21 24 6 4 44 53 26 39 45 51 10 54 3 13 46 1 38 2 11 9

  9. Parent focus group: Cluster 65 Items 31 55 57 19 18 60 56 64 58 63 16 17 30 15 59 32 62 8 61 65 33 36 27 35 34 29 50 25 48 28 41 52 42 20 43 7 49 23 22 5 37 47 12 14 40 21 24 6 4 44 53 26 39 45 51 10 54 3 13 46 1 38 2 11 9

  10. Parent focus group: Concept Map 31 55 57 19 School 18 60 56 64 58 63 16 17 30 15 59 32 62 8 61 65 DevelopmentalIssues 33 36 27 35 34 29 50 Administration 25 Respite 48 28 41 52 42 20 43 7 49 23 22 5 37 Counselling 47 12 14 40 21 24 6 4 44 53 26 39 45 51 Quality 10 54 3 13 46 1 38 2 11 9

  11. Theme One: Counselling  1. Psychological support by knowledgeable personnel   2. Free counseling services   3. Help with grieving and loss. 13. Counseling with respect to accepting disabilities 42. More sensitivity to needs of working mothers 41. More sensitivity to needs of single parents 47. Support for parents from services 39. Better parent-to-parent networking

  12. Theme Two: Respite 26. Training for parents in managing and hiring helpers 20. More out-of-home respite services 21. More in-home respite services 22. Free respite services 24. More help for working moms. 28. Ability to pay family members for services 33. More financial support 34. More financial support for the family 35. Easier tax relief 36. Compensation for loss salary 38. Workshops for parents 46. Parent mentoring services

  13. 18. Smaller class sizes 19. Smaller junior high schools 30. Having the school as the center of services 31. More school psychologists 55. School funding should be tied to child with disabilities 56. Inadequate funding for schools for special need students 57. School principals diverting funds from special need students 58. Insensitive school board doesn’t listen to parents 60. Transportation problem with school bus 63. Inadequate funding for students in mainstream 64. Special needs funding is diverted from designated students 17. More school support services 59. Parental involvement in school funding 62. Parental choice of consultants Theme Three: School

  14. Theme Four: Administration 4. Coordination of services 5. Advisory Board. 6. Timely access to information 12. Better referral process 14. Better coordination of children services 23. More consistency of services across the province 7. Timely access to services 25. Less territorialism services 29. Less paternalism 27. More consistency in staffing

  15. Theme Five: Quality 40. Stop hiding of supposed available services 44. More sensitive and less bureaucratic 53. Clarification of roles of agencies 37. More open information on available funds 43. Reduction of waiting period for services 45. Proactive delivery of services 48. Less aversive gate keeping 49. Help in navigating services 50. child- versus discipline-focused services

  16. Theme Six: Developmental Issues 15. More Speech Therapists 16. More Audiologists 8. Assistance with social skills 52. Help in making age transitions 61. Needs for close-by services 65. Who should be eligible for supports for special needs? 32. More recreation programs for kids with disabilities

  17. Parents’ View • Practical focus • Distinction between health care, learning, family support and other interventions are not meaningful for families. • Focus areas follow traditional categories of family support and new Family Support Act. • Research does not address many of the practical concerns of families.

  18. What does the research tell us? • There are a lot of studies that address family supports in some way. • Most studies touch on small specific areas, not “big picture.” • Studies often do not match common assumptions. • Definitions of family support programs is not consistent.

  19. How do definitions differ? • Family support programs… Wide range of goals, primarily to keep family intact, functional, and healthy. • Child-focused intervention programs… May include other goals but have a major focus on child-developmental outcomes. • Family preservation programs… Primary goal to correct identified problem in family (typically abuse or neglect) so that apprehension of child is unnecessary. • Many programs have elements of more than one.

  20. Are family Support Programs Effective? • Overall, family support programs have statistically significant positive outcomes in each of 9 outcome measures studied. • Effect sizes are modest to moderate for child developmental outcomes. • Effect Sizes for programs targeting children with special needs are twice as great as for programs in general.

  21. What are the 9 Outcome measures? • Child social-emotional development • Child Cognitive development • Child physical health • Family functioning and resources • Reduced child maltreatment • Parenting Behavior • Parenting knowledge and attitudes • Family economic self-sufficiency • Improved parent mental & physical health

  22. How large are the effect sizes? • Castro & Mastropieri (1986) +.68 • Layzer, Goodson, Bernstein, and Price (2001) +.54 -1.00 0.00 +1.00 NEGATIVE POSITIVE 0.50 0.50

  23. Relative Effect Sizes Mnemonic Strategies 1.62 Direct Instruction .84 Stimulant Medication .58 Computer Assisted Instruction .52 Psycho-Linguistic Training .30 Perceptual Motor Training .08 +1.00 -1.00 0.00 NEGATIVE POSITIVE 0.50 0.50 Family Support Programs +.54 to +.68

  24. Boosting Effect Sizes • Start early • Focus on significant special needs • Include parent-to-parent component • Group consultation settings • Include more components • Child & Family Focus • With these positive elements Effect Sizes approach +1.00

  25. Early Intensive Behavioral Intervention • Failure to replicate Lovaas 1989 outcome study • Original study too deeply flawed to replicate. • Cross-over study demonstrates that inflicting pain on children was the effective variable, with or without 40 hours of treatment. • Successful by conventional standards for early intervention programs

  26. Family Support & Institutional Care • Family support for children with developmental disabilities was largely developed to reduce institutional care • Children in healthy families do much better than children in institutional care. (ES = 2.00+ for cognitive and social skills). • Family support has been accompanied by drop in institutional care. • Little direct measure of family-support on institutionalization. • In the U.S. the percentage of developmental disabilities spending allocated to family support rose between 1990 and 2000 from 1.5% to 2.0% of average state developmental disabilities expenditures. • Parish, S. L., Pomeranz-Essley, A., & Braddock, D. (2003). Family support in the United States: financing trends and emerging initiatives. Mental Retardation, 41(3), 174-187.

  27. Stress • High stress are not inevitable outcomes of parenting a child with disabilities! • Families of children with disabilities are at risk for high stress levels… • Portraying stress as inevitable may create stress. • Stress can be prevented rather than managed • Gratification needs to be studied as offsetting stress. • Appraisal, hope, transformation, supports, may be key concepts in preventing stress

  28. Appraisal, Gratification, Hope, & Transformation • Positive aspects of parenting a child with a disability have been largely ignored. • Research on positive aspects beginning to emerge. • We need to shift from focus on reducing the negative to greater focus on enhancing the positive.

  29. FAAR Model & Transformation Child with a disability & associated challenges Homeostatic Coping Transformation Family Adjustment and Adaptation (FAAR) model Joan Patterson, 1989 Bonadaptation Successful meanings Successful relationships Successful behavior Pre-existing Family Global Meanings RelationshipsBehavior Range of Outcomes Spiral of Appraisals, Meanings, & Interactions Maladaptation Unsuccessful meanings Unsuccessful relationships Unsuccessful behavior

  30. Parental Health Parents of children with cerebral palsy: • Lower income … less paid employment • Many more than controls had one or more chronic condition • 35.5% reported back problems • 24.2% migraines • 17.3% arthritis • 15.8% asthma • 8.4% ulcers • Brehaut, J. C., Kohen, D. E., Raina, P., Walter, S. D., Russell, D. J., Swinton, M., et al. (2004). The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? Pediatrics, 114(2), 182-191.

  31. Martial Stability & Satisfaction • In a recent meta-analysis, researchers concluded that the risk of divorce for families with children with disabilities was increased by someplace between 2.9% and 6.7%. They characterized the effect size as small and suggested previous reports drastically increased this risk. • Risdal, D., & Singer, G., H. S. (2004). Marital adjustment in parents of children with disabilities: A historical review and meta-analysis. Research & Practice for Persons with Severe Disabilities, 29(2), 95-103. • Although the meta-analysis suggests that the effect is very small, our review suggests that there is no effect. Either way, the notion of vast increases in divorce rates is a dangerous myth. • Only longitudinal study reports no differences. • Seltzer, M. M., Greenberg, J. S., Floyd, F. J., Pettee, Y., & Hong, J. (2001). Life course impacts of parenting a child with a disability. American Journal on Mental Retardation, 106(3), 265-286. • Twice as many parents reported that having a child with a disability strengthened their marriages as reported that it weakened their marriage.

  32. Siblings of Children with Disabilities • Siblings of children with disabilities report some negative but also some positive effects. • Parent reports are more negative than the siblings. • Most studies have methodological weaknesses. • There are small effects in increased rates of depression and lower cognitive performance but the association may not be an effect of the presence of the sibling with a disability in the family. • Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: A meta-analysis. Journal of Pediatric Psychology, 27(8), 699-710.

  33. Costs • Longitudinal studies show that real cost to families is typically lost income. • Parents out of workforce • Parents make decisions for family not income. • How should governments respond?

  34. Future Directions I • Practice must reflect actual findings • Improved understanding of positives • Clarification of program goals • Practical implication studies • Better understanding of parent-to-parent initiatives • Study family health impacts • Study system integration (Social, education, health) • Aboriginal families • Cultural diversity

  35. Future Directions II • Comparisons need to be made within families of children with disabilities not between them and other families • Parent-designed research needed • Practical outcome research on program evaluation. • Policy research on better coordination of health, social, & Educational services. • Research on families as small businesses • Caregiver health needs study

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