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Family Supports for Family Supports for Children with Children with Disabilities:Disabilities:

State of the Evidence State of the Evidence Review:Review:

Family Supports for Family Supports for Children with Children with Disabilities:Disabilities:

State of the Evidence State of the Evidence Review:Review:

Dick Sobsey & Peter Calder

University of Alberta

Dick Sobsey & Peter Calder

University of Alberta

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Outcomes of Our ProjectOutcomes of Our ProjectFamily

Support Review

Systematic Literature

Review

Family Support Review

Systematic Literature

Review

Family Support

Bibliography

Annotated entries

for about 500 studies

Family Support

Bibliography

Annotated entries

for about 500 studies

http://www.ualberta.ca/~jpdasddc/famsupport/Famsup.htm

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Outcomes of Our ProjectOutcomes of Our Project

Family Support Review

Family Support

Bibliography

SystematicSystematicLiterature Literature

ReviewReview

RepeatedRepeatedConsultationConsultation

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Applying levels of evidence Applying levels of evidence to research in human to research in human

servicesservices

Applying levels of evidence Applying levels of evidence to research in human to research in human

servicesservices 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.

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.

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Some databases searchedSome databases searchedSome databases searchedSome databases searched

EBMR: Evidence Based Medicine Reviews

Child Abuse, Child Welfare and Adoption

Digital Dissertations ERIC Resources in

Education Medline (OVID & Endnote

interfaces)

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

Academic Search Premier JSTOR Child Abuse, Child

Welfare and Adoption PsycInfo

Web of Science

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Parent Focus Group:Concept Map

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

Alberta Committee of Citizens with Disabilities selected and invited focus group members

Focus Group members asked to identify elements and issues of family support

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Parent focus group: Generate Items

Parent focus group: Generate Items

1 2 3 4 5 6 7 8 9 10 11 12 13

14 15 16 17 18 19 20 21 22 23 24 25 26

27 28 29 30 31 32 33 34 35 36 37 38 39

40 41 42 43 44 45 46 47 48 49 50 51 52

53 54 55 56 57 58 59 60 61 62 63 64 65

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Parent focus group: Sort 65 Items

Parent focus group: Sort 65 Items

911

105154

49 4337

7

406

45

4

1223

5344

145

482529

27

50

62

1759

30

3118 19

56

63

576064

55

58

32

1516

8 61

52

65

41

42

47

39

3 13123846

2624

35343633

28

2022

21

9

Parent focus group: Cluster 65 Items

Parent focus group: Cluster 65 Items

911

105154

49 4337

7

406

45

4

1223

5344

145

482529

27

50

62

1759

30

3118 19

56

63

576064

55

58

32

1516

8 61

52

65

41

42

47

39

3 13123846

2624

35343633

28

2022

21

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Parent focus group: Concept Map

Parent focus group: Concept Map

DevelopmentalDevelopmental IssuesIssues

CounsellingCounselling

RespiteRespite

SchoolSchool

AdministrationAdministration

QualityQuality9

11

105154

49 4337

7

406

45

4

1223

5344

145

482529

27

50

62

1759

30

3118 19

56

63

576064

55

58

32

1516

8 61

52

65

41

42

47

39

3 13123846

2624

35343633

28

2022

21

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Theme One: CounsellingTheme One: Counselling

  1. Psychological support by knowledgeable personnel

  2. Free counseling services  3. Help with grieving and loss.13. Counseling with respect to accepting disabilities42. More sensitivity to needs of working mothers41. More sensitivity to needs of single parents47. Support for parents from services39. Better parent-to-parent networking

  1. Psychological support by knowledgeable personnel

  2. Free counseling services  3. Help with grieving and loss.13. Counseling with respect to accepting disabilities42. More sensitivity to needs of working mothers41. More sensitivity to needs of single parents47. Support for parents from services39. Better parent-to-parent networking

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Theme Two: RespiteTheme Two: Respite26. Training for parents in managing and hiring

helpers20. More out-of-home respite services21. More in-home respite services22. Free respite services24. More help for working moms.28. Ability to pay family members for services33. More financial support34. More financial support for the family35. Easier tax relief36. Compensation for loss salary38. Workshops for parents46. Parent mentoring services

26. Training for parents in managing and hiring helpers

20. More out-of-home respite services21. More in-home respite services22. Free respite services24. More help for working moms.28. Ability to pay family members for services33. More financial support34. More financial support for the family35. Easier tax relief36. Compensation for loss salary38. Workshops for parents46. Parent mentoring services

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Theme Three: SchoolTheme Three: School18. Smaller class sizes19. Smaller junior high schools30. Having the school as the center

of services31. More school psychologists55. School funding should be tied

to child with disabilities56. Inadequate funding for schools

for special need students57. School principals diverting

funds from special need students

18. Smaller class sizes19. Smaller junior high schools30. Having the school as the center

of services31. More school psychologists55. School funding should be tied

to child with disabilities56. Inadequate funding for schools

for special need students57. 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 services59. Parental involvement in school

funding62. Parental choice of consultants

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 services59. Parental involvement in school

funding62. Parental choice of consultants

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Theme Four: AdministrationTheme Four: Administration

4. Coordination of services5. Advisory Board.6. Timely access to information12. Better referral process14. Better coordination of children services23. More consistency of services across the

province7. Timely access to services25. Less territorialism services29. Less paternalism27. More consistency in staffing

4. Coordination of services5. Advisory Board.6. Timely access to information12. Better referral process14. Better coordination of children services23. More consistency of services across the

province7. Timely access to services25. Less territorialism services29. Less paternalism27. More consistency in staffing

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Theme Five: QualityTheme Five: Quality

40. Stop hiding of supposed available services44. More sensitive and less bureaucratic53. Clarification of roles of agencies37. More open information on available funds43. Reduction of waiting period for services45. Proactive delivery of services48. Less aversive gate keeping49. Help in navigating services50. child- versus discipline-focused services

40. Stop hiding of supposed available services44. More sensitive and less bureaucratic53. Clarification of roles of agencies37. More open information on available funds43. Reduction of waiting period for services45. Proactive delivery of services48. Less aversive gate keeping49. Help in navigating services50. child- versus discipline-focused services

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Theme Six: Developmental Issues

Theme Six: Developmental Issues

15. More Speech Therapists16. More Audiologists 8. Assistance with social skills52. Help in making age transitions61. Needs for close-by services65. Who should be eligible for supports for

special needs?32. More recreation programs for kids with

disabilities

15. More Speech Therapists16. More Audiologists 8. Assistance with social skills52. Help in making age transitions61. Needs for close-by services65. Who should be eligible for supports for

special needs?32. More recreation programs for kids with

disabilities

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Parents’ ViewParents’ 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.

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.

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What does the research tell us?

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.

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.

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How do definitions differ?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.

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.

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Are family Support Programs Effective?

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.

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.

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What are the 9 Outcome measures?

What are the 9 Outcome measures?

1. Child social-emotional development2. Child Cognitive development3. Child physical health4. Family functioning and resources5. Reduced child maltreatment6. Parenting Behavior7. Parenting knowledge and attitudes8. Family economic self-sufficiency9. Improved parent mental & physical health

1. Child social-emotional development2. Child Cognitive development3. Child physical health4. Family functioning and resources5. Reduced child maltreatment6. Parenting Behavior7. Parenting knowledge and attitudes8. Family economic self-sufficiency9. Improved parent mental & physical health

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How large are the effect sizes?

How large are the effect sizes?

Castro & Mastropieri (1986) +.68

Layzer, Goodson, Bernstein, and Price (2001) +.54

Castro & Mastropieri (1986) +.68

Layzer, Goodson, Bernstein, and Price (2001) +.54

NEGATIVE POSITIVE

-1.00 +1.000.00

0.50 0.50

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NEGATIVE POSITIVE

-1.00 +1.000.00

0.50 0.50

Perceptual Motor Training .08

Computer Assisted Instruction .52Computer Assisted Instruction .52

Stimulant Stimulant Medication .58Medication .58

Psycho-Linguistic Training .30

Relative Effect Sizes

Relative Effect Sizes

Mnemonic Strategies 1.62Mnemonic Strategies 1.62

Direct Instruction .84

Family Support Programs +.54 to +.68Family Support Programs +.54 to +.68

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Boosting Effect SizesBoosting 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

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

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Early Intensive Behavioral Intervention

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

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

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Family Support & Institutional CareFamily 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.

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.

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StressStress 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

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

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Appraisal, Gratification, Hope, & TransformationAppraisal, 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.

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.

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FAAR Model & FAAR Model & TransformationTransformation

Pre-existingFamily

Global MeaningsRelationships

Behavior

BonadaptationBonadaptationSuccessful meanings

Successful relationshipsSuccessful behavior

MaladaptationMaladaptationUnsuccessful meanings

Unsuccessful relationshipsUnsuccessful behavior

Transformation

Child with a disability & associated Child with a disability & associated challengeschallenges

Homeostatic Coping

Spiral of Appraisals, Spiral of Appraisals, Meanings, & InteractionsMeanings, & Interactions

Range o

f Outco

mes

Family Adjustment and Adaptation (FAAR) modelJoan Patterson, 1989

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Parental HealthParental 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.

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.

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Martial Stability & Martial Stability & SatisfactionSatisfaction

Martial Stability & Martial Stability & SatisfactionSatisfaction

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.

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.

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Siblings of Children with Disabilities

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.

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.

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CostsCosts

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?

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?

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Future Directions IFuture 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

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

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Future Directions IIFuture 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

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