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The NetherlandsThe NetherlandsThe NetherlandsThe Netherlands
November /December, 2014November /December, 2014November /December, 2014November /December, 2014
Ivan Brown, M.Ed., Ivan Brown, M.Ed., Ivan Brown, M.Ed., Ivan Brown, M.Ed., Ph.D.Ph.D.Ph.D.Ph.D.Centre Centre Centre Centre for Applied Disability Studiesfor Applied Disability Studiesfor Applied Disability Studiesfor Applied Disability Studies
Brock University, St. Brock University, St. Brock University, St. Brock University, St. CatharinesCatharinesCatharinesCatharines, , , , CanadaCanadaCanadaCanada
Director, Director, Director, Director, IASSIDD Academy of Education, IASSIDD Academy of Education, IASSIDD Academy of Education, IASSIDD Academy of Education,
Teaching and ResearchTeaching and ResearchTeaching and ResearchTeaching and Research
C C C C 2014201420142014
1. What is quality of life?1. What is quality of life?1. What is quality of life?1. What is quality of life?
2222. . . . How do we use quality of life?How do we use quality of life?How do we use quality of life?How do we use quality of life?
3. What about families?3. What about families?3. What about families?3. What about families?
4. Your ideas and comments.4. Your ideas and comments.4. Your ideas and comments.4. Your ideas and comments.
�
WHAT IS QUALITY OF LIFE?
Being happy with things that are most important to you.
1.1.1.1. Things important to all peopleThings important to all peopleThings important to all peopleThings important to all people
2.2.2.2. Things important to just youThings important to just youThings important to just youThings important to just you
Excellence in aspects of life that Excellence in aspects of life that Excellence in aspects of life that Excellence in aspects of life that
are “you” or “your life”are “you” or “your life”are “you” or “your life”are “you” or “your life”
and are important and enjoyable and are important and enjoyable and are important and enjoyable and are important and enjoyable
to youto youto youto you
�
�Policy and service goalsPolicy and service goalsPolicy and service goalsPolicy and service goals
�Services and support evaluationServices and support evaluationServices and support evaluationServices and support evaluation
�Improving life for individualsImproving life for individualsImproving life for individualsImproving life for individuals
�
InputsInputsInputsInputs ThroughputsThroughputsThroughputsThroughputs OutputsOutputsOutputsOutputs
SystemSystemSystemSystem----Level ProcessesLevel ProcessesLevel ProcessesLevel Processes
o Value-based policies
o Resources
o Service delivery
framework
o Administrative
principles
o Advocacy framework
o System change
indicators
o Social indicators
OrganizationOrganizationOrganizationOrganization----Level PracticesLevel PracticesLevel PracticesLevel Practices
o Value-based policies
o Resources
o PWD and family
advocacy organizations
o Programs and services
o Managerial strategies
o Individual life outputs
o Family life outputs
o Organization outputs
IndividualIndividualIndividualIndividual---- and Familyand Familyand Familyand Family----Level LivingLevel LivingLevel LivingLevel Living
o Culture practices,
values and beliefs
o Characteristics of and
resources within
individuals and families
o Access to
environmental and
life’s resources and
opportunities to choose
among these resources
o Routines and activities
o Choices made and
followed
o Individual life outputs
o Family life outputs
OutcomesOutcomesOutcomesOutcomes
o Individual and family
observable well-being; e.g.
employment, social
network
o Perceptions of happiness,
satisfaction, fulfillment;
e.g. self esteem, job
satisfaction, acceptance of
diversity
Draft, submitted for
publication
Policy / service goals and evaluationPolicy / service goals and evaluationPolicy / service goals and evaluationPolicy / service goals and evaluation::::
�Indicators that are common to allIndicators that are common to allIndicators that are common to allIndicators that are common to all
Improving life for individualsImproving life for individualsImproving life for individualsImproving life for individuals
�Indicators Indicators Indicators Indicators that are common to allthat are common to allthat are common to allthat are common to all
�Indicators that are unique to the personIndicators that are unique to the personIndicators that are unique to the personIndicators that are unique to the person
Examples of indicators of shared QOL:Examples of indicators of shared QOL:Examples of indicators of shared QOL:Examples of indicators of shared QOL:
- 25 Quality Indicators (The Council on Quality and 25 Quality Indicators (The Council on Quality and 25 Quality Indicators (The Council on Quality and 25 Quality Indicators (The Council on Quality and
Leadership)Leadership)Leadership)Leadership)
- SchalockSchalockSchalockSchalock & Keith: 40 indicators in 4 life domains& Keith: 40 indicators in 4 life domains& Keith: 40 indicators in 4 life domains& Keith: 40 indicators in 4 life domains
- Cummins: 21 indicators in 7 life domainsCummins: 21 indicators in 7 life domainsCummins: 21 indicators in 7 life domainsCummins: 21 indicators in 7 life domains
- Brown et al.: 54 indicators in 9 life domainsBrown et al.: 54 indicators in 9 life domainsBrown et al.: 54 indicators in 9 life domainsBrown et al.: 54 indicators in 9 life domains
Policy / service goals and evaluationPolicy / service goals and evaluationPolicy / service goals and evaluationPolicy / service goals and evaluation::::
�Indicators of shared quality of lifeIndicators of shared quality of lifeIndicators of shared quality of lifeIndicators of shared quality of life
Improving life for individualsImproving life for individualsImproving life for individualsImproving life for individuals
�Indicators of shared quality of Indicators of shared quality of Indicators of shared quality of Indicators of shared quality of lifelifelifelife
�Indicators of quality of life unique to the personIndicators of quality of life unique to the personIndicators of quality of life unique to the personIndicators of quality of life unique to the person
Name ___________________ Date____________________Name ___________________ Date____________________Name ___________________ Date____________________Name ___________________ Date____________________
INDIVIDUALSINDIVIDUALSINDIVIDUALSINDIVIDUALS
SharedSharedSharedShared quality of life:quality of life:quality of life:quality of life: Cummins scaleCummins scaleCummins scaleCummins scale
Unique quality of life:Unique quality of life:Unique quality of life:Unique quality of life:
---- Making quiltsMaking quiltsMaking quiltsMaking quilts ---- Maps of subwaysMaps of subwaysMaps of subwaysMaps of subways -
---- Horseback ridingHorseback ridingHorseback ridingHorseback riding ---- Playing the harpPlaying the harpPlaying the harpPlaying the harp -
---- Hot yogaHot yogaHot yogaHot yoga ---- -
---- ---- -
For Quality of Life…For Quality of Life…For Quality of Life…For Quality of Life…
• Important + Happy • Important + Happy • Important + Happy • Important + Happy √√√• Important + Unhappy xxx• Important + Unhappy xxx• Important + Unhappy xxx• Important + Unhappy xxx
• Not important + Happy • Not important + Happy • Not important + Happy • Not important + Happy ------------
• Not important + Unhappy • Not important + Unhappy • Not important + Unhappy • Not important + Unhappy ------------
IndicatorIndicatorIndicatorIndicator Important?Important?Important?Important? Happy?Happy?Happy?Happy? QualityQualityQualityQuality of lifeof lifeof lifeof life
Work at homeWork at homeWork at homeWork at home 1111 5
Looking after meLooking after meLooking after meLooking after me 1111 2
Making quilts Making quilts Making quilts Making quilts 5555 5555 √√√
Hot yogaHot yogaHot yogaHot yoga 5555 1111 xxxxxxxxxxxx
Rating scale:1 Very little 2 A little 3 Some 4 Quite a bi t 5 A lot
Five steps:
1. Start from the place the person sees as
most important.
2. Provide opportunities to move forward.
3. Follow the person’s choices on how to
proceed.
4. Shape interventions to improve self-image.
5. Encourage and support empowerment.
GOAL: TO INCREASE HAPPINESS/ LIFE SATISFACTION.
�
What is a family?What is a family?What is a family?What is a family?
A A A A familyfamilyfamilyfamily includes the people who think of includes the people who think of includes the people who think of includes the people who think of
themselves as part of the family, whether related themselves as part of the family, whether related themselves as part of the family, whether related themselves as part of the family, whether related
by blood or marriage or not, and who support by blood or marriage or not, and who support by blood or marriage or not, and who support by blood or marriage or not, and who support
each other on a regular basis. each other on a regular basis. each other on a regular basis. each other on a regular basis.
(Beach Center on Disability)(Beach Center on Disability)(Beach Center on Disability)(Beach Center on Disability)
What is Family Quality of Life?What is Family Quality of Life?What is Family Quality of Life?What is Family Quality of Life?
FQOL is a dynamic sense of wellFQOL is a dynamic sense of wellFQOL is a dynamic sense of wellFQOL is a dynamic sense of well----being of the being of the being of the being of the
family, collectively and subjectively defined and family, collectively and subjectively defined and family, collectively and subjectively defined and family, collectively and subjectively defined and
informed by its members, in which individual and informed by its members, in which individual and informed by its members, in which individual and informed by its members, in which individual and
familyfamilyfamilyfamily----level needs interact. level needs interact. level needs interact. level needs interact.
((((ZunaZunaZunaZuna et al., 2010)et al., 2010)et al., 2010)et al., 2010)
Quality of family unit
Quality of
Life of each
family
member
+
+
+
+
Two perspectives
3 main conceptualizations of FQOL3 main conceptualizations of FQOL3 main conceptualizations of FQOL3 main conceptualizations of FQOL::::
1.1.1.1. Aznar & Aznar & Aznar & Aznar & CastanonCastanonCastanonCastanon (2005)(2005)(2005)(2005)
2.2.2.2. Beach Center on DisabilityBeach Center on DisabilityBeach Center on DisabilityBeach Center on Disability
3.3.3.3. International FQOL Project (Isaacs, 2007)International FQOL Project (Isaacs, 2007)International FQOL Project (Isaacs, 2007)International FQOL Project (Isaacs, 2007)
International Family Quality of Life Project
18 studies in 14 Countries
Principal Investigators and research teams in:AustraliaBelgiumBosnia & HerzegovinaCanadaIndiaIsraelItalyJapanMalyasiaNigeriaPolandRomaniaSloveniaUSA
Sincere Thanks
http://www.surreyplace.on.ca/Pages/Home.aspx
Own website
19 languages
• Family Quality of Life Survey: Main Caregivers of People with Intellectual or Developmental Disabilities2006
• Unique samples• All followed administration manual• All used same SPSS datafile• Data analyzed by SPSS
Methods:
Outcome indicators• Attainment• SatisfactionDetermining factors• Importance• Opportunities• Initiative• Stability
Concepts measured:
• Health• Finances• Family relationships• Support from other people• Support from services• Influence of values• Careers / preparing for careers• Leisure & Recreation• Community interaction
Domains measured:
• Australia (n=42)• Belgium (n=25)• Bosnia & Herzegovina (n=35)• Canada (n=79)• India (n=101) • Israel Jewish (n=103), Arab (n=96) • Italy (n=27), (n=104)• Japan (n=147)• Malaysia (n=52)• Nigeria (n=80), DS (n=31)• Poland (n=189), PKU (n=31)• Romania (n=30)• Slovenia (n=20)• United States (n=149)
Data collection countries:
Mean age of person with ID:
17.3
11.7
21.522.3
10.9
41.9
7.8
12.315.9
11.611.4
4.8
13.5
34.4
28.1
21.1
0
10
20
30
40
50
Aus tral iaBelgiu mBosni aCanada Isreal Jewish
ItalyM
alaysiaNigeri aPolandSloveniaUSAPoland 2Israel Arab
Italy 2Romani aNigeri a 2
Mean age of participant:
0
10
20
30
40
50
60
70
80
AustraliaBelgi umBosniaCanada Israel Jewish
ItalyM
alaysiaNigeriaPolandSlove niaUSAPoland 2Israel Arab
Italy 2RomaniaNigeria 2
% male persons with ID:
0%10%20%30%40%50%60%70%80%90%
100%
Austra liaBelg iumBosniaCanada Israel Jewis h
ItalyMalaysiaNigeriaPolandSloveniaUSAPoland 2Israel Arab
Italy 2Roman iaNigeria 2
Most common primary diagnosis of person with ID:• Australia: ID -cause unknown; ASD• Belgium: ID; Down syndrome• Bosnia: ID -cause unknown; Cerebral palsy• Canada: ASD; ID -cause unknown• Israel: Other; ID -cause unknown ; PDD // ID, DS, CP, Dual • Italy: ID -cause unknown; DS // ID, DS• Malaysia: Cerebral palsy, Other; ID -cause unknown• Nigeria: ID -cause unknown; Cerebral palsy // DS• Poland: ID -cause unknown; Down syndrome• Slovenia: ID -cause unknown; Cerebral palsy• US: ID-cause unknown; ASD; Other• Poland 2: PKU• Romania: ID, DS, ASD, DD
% two -parent families:
0%10%20%30%40%50%60%70%80%90%
100%
AustraliaBelg iumBosniaCanada Israel Jewish
ItalyM
alaysiaNigeriaPolandSloven iaUSAPoland 2Israel Arab
Italy 2Rom
aniaNigeria 2
Mean support level:
1
2
3
4
5
BelgiumBosniaCanada Israel J ewish
ItalyM
alays iaNigeri aPolandSloveniaUSAPoland 2Israel Ar ab
Ital y 2RomaniaNigeria 2
Mean communication level:
1
2
3
4
5
BelgiumBosniaCanada Israel Jew
ish
ItalyM
alaysiaNigeriaPolandSloveniaUSAPoland 2Israel ArabItaly 2Rom
aniaNigeria 2
Mean Scores for 6 Concepts
Att & SatImportance
Opportunities
InitiativeStability
Australia
Belgium
Bosnia
Canada
India
Israel Jewish
Italy
Japan
Malyasia
Nigeria
Poland
Slovenia
USA
Poland 2
Israel Arab
Italy 2
Mean Scores for Importance: 4 countries
0
1
2
3
4
5
6
Canada
Australia
USA
Nigeria
Mean Satisfaction & Attainment ratings: 9 domains
1
2
3
4
5
Health Finances
Family Rel.
Support Services
ValuesCareers
LeisureCommunity
Australia
Belgium
Bosnia
Canada
India
Israel Jewish
Italy
Japan
Malyasia
Nigeria
Poland
Slovenia
USA
Poland 2
Israel Arab
Italy 2
Romania
Nigeria 2
Mean Satisfaction & Attainment ratings : Support from Services
1
2
3
4
5
AustraliaBelgium
Bosni aCanada
Indi aIsrael Jewish
Israel Arab
Italy 1Italy 2
JapanMalaysia
Nigeria 1Nigeria 2
Poland 1Poland 2
RomaniaSlovenia
USA
Mean Satisfaction & Attainment ratings : Poland 2 samples
1
2
3
4
5
Health Finances
Family Rel.
Support Services
ValuesCareers
LeisureCommunity
Poland
Poland 2
Mean Satisfaction & Attainment ratings : Nigeria 2 samples
1
2
3
4
5
Health Finances
Family Rel.
Support Services
ValuesCareers
LeisureCommunity
Nigeria
Nigeria 2
Mean Satisfaction & Attainment ratings : Italy 2 samples
1
2
3
4
5
Health Finances
Family Rel.
Support Services
ValuesCareers
LeisureCommunity
Italy
Italy 2
Mean Satisfaction & Attainment ratings : Israel 2 samples
1
2
3
4
5
Health Finances
Family Rel.
Support Services
ValuesCareers
LeisureCommunity
IsraelJewish
IsraelArab
Applying FQOL data
Family Relationships:
o Reduce caregiver burdeno Reduce women’s responsibilityo Engage all family memberso Provide respiteo Provide opportunities for activities
Key Points:� Importance (higher) and Satisfaction / Attainment (lower) ratings similar in all studies.� Satisfaction / Attainment ratings similar in first 5 domains.� Families around the world may be more similar than different.
� Support from others low everywhere.� Support from services varied.
Indicators uniques to families?
Ideas???
Correlation among Dimensions
How do the Dimensions Interact With One Another to Influence Outcomes?
How do the Dimensions Interact With One Another to Influence Outcomes?
Final Path Model For Dimensions
Total (Direct + Indirect) Effects
• Based on the model providing Opportunitiesin domains that are important to families is key to enhancing FQOL outcomes
• The negative relationship betweenImportance and Satisfaction is problematic
• The trend toward reduced satisfaction if families have to work too hard to improve FQOL
• Adding Barriers into model might help further explain relationships
Conclusions
� Continue analysis of international data
� Path modeling with domains
� In regression using Canadian sample on Financial
attainment was a significant predictor of overall
FQOL rating
� Continue work on validation of survey
Future Directions
� Services are not an area of strength for families
� Need to provide opportunities for support in
important areas such as family relationships and
health
� Reduce Barriers
� About 25% of Canadian sample indicated they were not
getting services they needed with various barriers cited
� Be aware of impact that DD related issues have on
families and identify family outcomes for services
Implications for Policy and Services
BT
Program Logic Model
Identify appropriate mediator
Develop intervention based on
assessment
Teach intervention techniques and
principles
Monitor progress
Client maintains and generalizes
skills
Individualized service goals are
met
Mediator maintains,
generalizes and applies skills
Case review
Meet with other involved
clinicians
Caregiver interview
Assess Appropriateness of
referral
Functional Assessment
Develop intervention
based on
assessment and
deliver
Monitor progress
Assessment Mediator Training
(Individual and Group)
Direct Intervention
(Individual and Group)
ACTIVITIES
TARGET
GROUPS
SHORT-TERM
OUTCOMES
INTERMEDIATE
OUTCOMES
LONG-TERM
OUTCOMES
Define variables maintaining
problem behaviour
Identification of skills deficits
Reach consensus with client/
mediator about problems and/
or skills deficits and goals for
service
Identify and prioritize other
service needs and connect
client/mediator to these
Mediator learns and delivers
intervention appropriately
Increase in mediator
understanding of behaviour
and behavioural principles
Skill acquisition: e.g. self
management, adaptive
Reduction in problem
issues/behaviour
Children, youth & adults
w/ identified problem
behaviours and/or skills
deficits
Appropriate
Mediator
Children, youth & adults
w/ identified problem
behaviours and/or skills
deficits
Enhanced Quality of Life
Personal development
Improved social relations
Increased community
participation
Improved home/school/
work role performance
Increased independence
�
[email protected]@[email protected]@utoronto.ca
