Transcript Slide 1

Roy Brown PhD., (All slides copyright 2009)
Individual and Family Quality of Life:
Issues of Ageing and Intellectual
Disability
Roy I. Brown PhD, FIASSID.
Ageing Seminar
2009
Hong Kong Joint Council for People with Disabilities /
Hong Kong Council of Social Service
AGEING - THE PROCESS
AND THE CHALLENGE.
Two types of People -Two Issues:
Those who are aged now
Those who are young and will
age
Similar conditions do not mean the
same psychological or social
behaviours are shown or that
needs or requirements are
identical.
Ageing and disability represent a final
life frontier. Decisions will at times
need to be made without
experimental or other scientific
evidence. (note: Science is not just
experiment but observation).
Practice is knowledge based on
science, experience & common sense).
Diseases and restrictions of ageing
are interactive with a person’s
personal characteristics and
environmental experience, causing
an infinite range of responses.
QUALITY OF LIFE
What does quality of life approach mean?
a) For the individual.
b) For the family.
c) For the community
d) For services.
e) For policy.
IT MAY BE USEFUL TO NOTE DOWN YOUR VIEWS
If we use a quality of life approach
 How do we define quality?
 What are we prepared to do socially and
psychologically
 How will we sensitize our services
 What are we prepared to do economically?
 How can we help to shape policy
Quality of Life
Quality
of Life
Age
C 2000 Roy Brown
FIGURE
QUALITY OF LIFE - THEMES AND CONCEPTS
QUALITY OF LIFE
Sensitizing concept relevant to individual perceived
needs
Definitions Various
SPECIFIC QUALITY OF LIFE CONCEPTS
Intervention
Research
Measurement
Professional Practice / Education, Policy & Ethical
Issues
Programme Evaluation and Quality Assurance
Quality of life is:A Sensitizing concept relevant to
individual perceived needs
Policy making, health-education, social
promotion, advocacy etc.
e.g. Taylor 1994
Definitions
Quality of life is the social well-being enjoyed by
people, communities and their society. (Bach &
Rioux)
Is both objective and subjective, involving material
well-being, health, productivity, intimacy, safety,
community and emotional well-being.(Cummins)
Is experienced when a person’s basic needs are
met and when he or she has the opportunity to
pursue and achieve goals in major life
settings.(Goode)
Def Contin
The discrepancy between a person’s
unmet needs and desires. Referring to
the subjective or perceived as well as
objective assessment.
Relates to all life domains.
Recognises interaction between
individual and environment
(Brown,Bayer & Macfarlane)
Being
Belonging
Becoming
Ivan Brown et al
Some key descriptors of quality of life
• A multidimensional concept involving
well-being across life domains
• Relates to the objective and
subjective experiences of well-being
• Satisfaction of the individual
• Individual well-being across the
lifespan
SPECIFIC QUALITY OF LIFE CONCEPTS
Domains of well being
Holism
Lifespan
Choices
Personal Control
Perception
Self Image
Empowerment
Inter & Intra Personal Variability
Values
e.g. Goode 1994, Renwick , Brown,I., & Nagler 1996, Felce & Perry, 1996,
Brown 1997, Schalock 1997
Exclusion & Inclusion
CAN BE:PHYSICAL
SOCIAL
PSYCHOLOGICAL
EDUCATIONAL
Exclusion & Inclusion can
be:1. Short or long term
2. Individual or Group (e.g. Gender or
Intercultural)
3. Inter Generational
4. Institutional
5. Within the Community
6. Within the Home
Exclusion has rules and values which are
exclusive & hierarchical
See Brown & Brown (2003)
MEASUREMENT
INDIVIDUAL & FAMILY QUALITY OF LIFE
Individual and Social Indicators
Perceptual and Objective
Personal not Proxy
Quantitative and Qualitative
Aims
Assessment
Practical application and intervention
Evaluation
Research
Measurement QOL (Instruments)
• The Resident
(Burnett, 1989)
Satisfaction Inventory
• Rehabilitation
Questionnaire. A
Personal
Guide to the Individual’s Quality of Life
(Brown & Bayer 1992)
• The
Comprehensive Quality of Life
Scale
(Cummins, 1993)
•Quality of Life Questionnaire
(Schalock & Keith, 1993)
• The Quality of Life Instrument
(Brown, Raphael & Renwick, 1997)
• The Family Quality
(Brown et al, 2006)
of Life Survey
The professional behaviour of all
personnel is guided by a well
thought out value system.
What are your value systems a)
professionally and
b) personally?
Do these 2 systems differ in your
professional and private
behaviour?
Quality of Life and the Family
All the above concepts can be
applied
to the family with a member who is
ageing
Measurement (instruments)
Family Quality of Life
The Family Quality of Life Survey (Brown
et al, Revised 2006)
The Beach Center Family Quality of Life
Scale (FQOL Scale)
Hoffman, Marquis, Turnbull, Poston, & Summers, 2005;
Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J.,
Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and
measuring family quality of life.
Journal of Intellectual Disability Research, 49(10), 777-783.
Measurement (instruments) Family Quality of Life
The Family Quality of Life Survey
(Brown et al, Revised 2006)
The Beach Center Family Quality of Life Scale
(FQOL Scale)
(Hoffman, Marquis, Turnbull, Poston, & Summers, 2005;
Summers, J. A., Poston, D. J., Turnbull, A. P., Marquis, J.,
Hoffman, L., Mannan, H., et al. (2005). Conceptualizing and
measuring family quality of life.
Journal of Intellectual Disability Research, 49(10), 777-783.
Family Quality of Life Survey
• www.surreyplace.on.ca
• Once you have accessed the website
click on research and evaluation
on the left column and you will see
the link to family quality
International Family Quality of Life Project
Family Quality of Life Survey (FQoL)
The International Family Quality of Life Project
examines the quality of life of families who have
one or more members with an intellectual or
developmental disability. The project was initiated
in 1997 by researchers from Australia, Canada, and
Israel. The organization of the project is led by
researchers in Canada at Surrey Place Centre,
MukiBaum Treatment Centres, and faculty from
the University of Toronto and the University of
Victoria. Many other countries are now involved.
Countries involved
•
•
•
•
Australia Austria
India Iran Ireland
Malaysia Mexico
Slovenia Taiwan
Bosnia Belgium Canada
Israel Italy Japan
Netherlands Poland
USA
Domains
•
•
•
•
•
•
•
•
•
Health of the family
Financial well-being
Family relationships
Support from other people
Support from disability related services
Influence of values
Careers and preparing for careers
Leisure and recreation
Community interaction
Dimensions (to Family life)
• importance,
• opportunities,
• initiative,
• attainment,
• stability, and
• satisfaction
AUSTRALIA
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
AUSTRALIAN
100%
1.
2.
3.
4.
90%
80%
70%
60%
5.
50%
6.
40%
30%
7.
20%
8.
10%
9.
0%
1
2
3
4
5
6
7
8
9
Total Australia (n=55)
Respondent: Mean Age = 49 yrs Age Range = 32-77
Child: Mean Age = 15 yrs Age Range = 2-41
DOMAINS
Health
Financial Well-Being
Family Relations
Support From Other
People
Support From Disability
Related Services
Spiritual and Cultural
Beliefs
Career and Preparation for
Career
Leisure and Enjoyment of
Life
Community and Civil
Involvement
CANADA
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
CANADA
100%
1.
2.
3.
4.
90%
80%
70%
60%
5.
50%
40%
6.
30%
7.
20%
8.
10%
9.
0%
1
2
3
4
5
6
7
8
9
Canada (n=51)
Parent: Mean Age = 40yrs Age Range = 27-60
Child: Mean Age =7.6 Age Range = 2-12
DOMAINS
Health
Financial Well-Being
Family Relations
Support From Other
People
Support From Disability
Related Services
Spiritual and Cultural
Beliefs
Career and Preparation for
Career
Leisure and Enjoyment of
Life
Community and Civil
Involvement
AUSTRALIA & CANADA
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
CANADA and AUSTRALIA
DOMAINS
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
1
2
3
4
Australia
5
6
7
8
9
1. Health
2. Financial Well-Being
3. Family Relations
4. Support From Other People
5. Support From Disability
Related Services
6. Spiritual and Cultural
Beliefs
7. Career and Preparation for
Career
8. Leisure and Enjoyment of
Life
9. Community and Civil
Involvement
Canada
Australia (n=55)
Respondent: Mean Age = 49yrs Age Range = 32-77 // Child: Mean Age = 15yrs Age Range = 2-41
Canada (n=51)
Respondent: Mean Age = 40yrs Age Range = 27-60 // Child: Mean Age =7.6yrs Age Range =2-13
CANADA: ASD & DOWN
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
CANADA
100%
1.
2.
3.
4.
5.
90%
80%
70%
60%
6.
50%
40%
7.
30%
8.
20%
9.
10%
DOMAINS
Health
Financial Well-Being
Family Relations
Support From Other People
Support From Disability
Related Services
Spiritual and Cultural
Beliefs
Career and Preparation for
Career
Leisure and Enjoyment of
Life
Community and Civil
Involvement
0%
1
2
3
4
Down
5
6
7
8
9
Autism
Autism (n=18) Mean Age: 7.78 yrs Age Range: 6-13
Down (n=33) Mean Age: 7.55 yrs Age Range: 2-12
CANADA: ASD, DOWN, CONTRAST
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
CANADA
DOMAINS
1. Health
2. Financial Well-Being
3. Family Relations
4. Support From Other People
5. Support From Disability
Related Services
6. Spiritual and Cultural
Beliefs
7. Career and Preparation for
Career
8. Leisure and Enjoyment of
Life
9. Community and Civil
Involvement
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
1
2
3
4
Down
5
Autism
6
7
8
9
Contrast
Autism (n=18) Mean Age: 7.78 Age Range: 6-13
Down (n=33) Mean Age: 7.55 Age Range: 2-12
Contrast (n=18) Mean Age: 6.81 Age Range: 4-12
AUSTRALIA AGEING
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
AUSTRALIAN AGEING
100%
1.
2.
3.
4.
90%
80%
70%
60%
5.
50%
6.
40%
30%
7.
20%
8.
10%
9.
0%
1
2
3
4
5
6
7
8
9
Australian Ageing (n=12)
Parent: Mean Age = 63 Age range = 56-77
Child: Mean Age = 26 Age range = 14-41
DOMAINS
Health
Financial Well-Being
Family Relations
Support From Other
People
Support From Disability
Related Services
Spiritual and Cultural
Beliefs
Career and Preparation
for Career
Leisure and Enjoyment
of Life
Community and Civil
Involvement
AUSTRALIA 55+ 54-
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
AUSTRALIAN 55+
AUSTRALIAN 54100%
1.
2.
3.
4.
5.
90%
80%
70%
60%
50%
6.
40%
7.
30%
20%
8.
10%
9.
0%
1
2
3
4
Australian 55+
5
6
7
8
9
DOMAINS
Health
Financial Well-Being
Family Relations
Support From Other People
Support From Disability
Related Services
Spiritual and Cultural
Beliefs
Career and Preparation for
Career
Leisure and Enjoyment of
Life
Community and Civil
Involvement
Australian 54-
Australian 55+ (n=12)
Parent: mean age = 63 Age Range = 56-77 // Child: Mean Age = 26 Age Range = 14-41
Australian 54- (n=27)
Parent: Mean Age = 43 Age Range = 32-54 // Child: Mean Age = 12 Age Range = 5-34
•
Family Quality of Life & Older-Aged Families of Adults with an Intellectual Disability
By Nancy S. Jokinen and Roy Brown (In Press)
In R. Kober (Ed) Enhancing the quality of life of people with intellectual disability:
From theory to practice ,New York: Singer.
Family Quality of Life & Older-Aged Families of Adults with an Intellectual Disability
By Nancy S. Jokinen and Roy Brown (In Press)
In R. Kober (Ed) Enhancing the quality of life of people with intellectual disability:
From theory to practice ,New York: Singer.
Data percentage of respondents satisfied or very satisfied with
Family Quality of Life for each domain
TAIWAN and KOREA
DOMAINS
100%
1. Health
2. Financial Well-Being
3. Family Relations
4. Support From Other People
5. Support From Disability
Related Services
6. Spiritual and Cultural
Beliefs
7. Career and Preparation for
Career
8. Leisure and Enjoyment of
Life
9. Community and Civil
Involvement
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
1
2
3
4
T aiwan
5
6
7
8
9
Korea
Taiwan (n=83)
Parent: Mean age =37.9 Age range =26-58 // Child: Mean age = 5.4 Age Range = Child 1-14
Korea (n=81)
Parent: Mean age =37.7 Age Range =21-51 // Child Mean age =8.4 Age Range = 4-18
Some families appear particularly vulnerable:Older families who support fully or partially their adult
child with a disability
They include:-
Families who suffer from financial poverty
Single parent families
Families where there are high levels of stress
(eg a parent with health issue, disability, financial
concerns)
Families where there is an adult child with severe and/ or
multiple disabilities particularly where there are major
behavioural/ emotional challenges
Overall concerns
Lack of adequate services
Particularly :
Respite and in this context emergency respite
Long waiting lists for services
Concerns about expertise and experience of
personnel in providing services.
Mental health services
Confusion about which services and how to access.
So many of them and disonnected!
Major Behavioural Challenges
which appear to cause family distress and often
an inability to cope.
These behaviours include smearing of feces,
throwing, spitting, hitting, scratching, bedwetting, soiling, rushing into traffic, climbing
over fence, forcibly breaking out of their home,
screaming for long periods, uncontrolled and
unpredictable behaviour and violence, major
sleep disturbance and self-mutilating behaviour.
Support and allied needs continued
Parents unable to get out together as a couple on a
weekly or even monthly basis and no time for
themselves
Individual family members ,whether children or
adults, unable to study or pursue their major
interests
Instances where employment or retirement activities
have to change or to terminate in order that one or
both parents can provide better support for their
child in the home.
Financial impact on each member of the family.
Other Issues 2
A need to talk to a professional about family issues
and concerns as well as disability
Experience suggests that most individuals (families)
want to function effectively. They do not wish to
be dependant “on the system”
They want to solve their own problems but need
support for the family for key items and for
stressful periods.
They wish to avert major stress and therefore
services need be forward looking with forward
planning.
Other Issues 3
Lack of support from relatives
Lack of help from friends and
neighbours
Lack of support from religious
communities to which individual
families are affiliated
Challenges for siblings
Internal and external aspects of family and
individual quality of life
1) Those who have positive and
satisfactory internal family
dimensions, but lack adequate
support for aspects of external
family life, and
2) Those families who have low
levels of satisfaction in both
internal and external aspects of
family life.
• Internal family quality life relates to how families see
themselves functioning in terms of:• a) health,
• b) family relations
• c) spiritual and cultural beliefs
These reached at least 60 per cent levels of satisfaction,
and the highest domain percentages recorded in most
of our research.
These domains are intrinsically about internal aspects of
family life, which to a large degree relate to family
values and internal relationships.
External domains of family quality life relate to how families see
themselves functioning in terms of outside events, and these
impact the family and individual somewhat differently.
They include domains such as:• a) Financial Well- Being (i.e. essentially what the family earned from
outside employment including disability allowances & pensions)
• b) Support from other People in the Community
• c) Support from Disability Related Services
The above 3 were the lowest 3 domains in terms of satisfaction
in our studies.
Areas to look for if overall FQoL is low
Internal FQoL
• a) health,
• b) family relations
• c) spiritual and cultural beliefs
External FQoL
• a) Financial Well- Being (i.e. essentially what the
family earned from outside employment including
disability allowances & pensions)
• b) Support from other People in the Community
• c) Support from Disability Related Services
Some of the positives for older
parents (Note such parents often have children
who are mildy or moderately disabled)
• Companionship particularly if a single parent
• Help with household matters (e.g. making
beds)
• Help in the community (E.g. help with
shopping)
Where to from now?
The challenge is how we work with
families, older persons with
intellectual disabilities, policy
makers, agencies and frontline
personnel to move concerns to
supportive action.
What do the following aspects imply for those
who work with and support them?
Psychological and Social Needs of Ageing
Persons with Intellectual Disabilites
Apart from basic health also maintain hearing
and vision
Keep environmental and Social aspects of life
familiar
Maintain choices
Promote self image
Maintain familiar and enjoyed routines
Keep contact with family and friends
Make allowance for slowing pace of
understanding and action
Provide supports in order to maintain and
encourage activities
Ensure activities like work,
helping & interacting routines are encouraged
Maintain choices
Promote self image
Maintain familiar and enjoyed routines
Keep contact with family and friends
Recognise and make allowance for their history
What does this imply for those who work with and
support older people with intellectual disabilities and
their families?
Make allowance for slowing pace of understanding
and action
Help to reduce guilt and/or feelings of shame
Provide supports in order to maintain and
encourage activities
Ensure activities like work, helping and
interacting routines are encouraged
Recognise and make allowance for the
individual’s history
Selected References
Bigby, C. (2003) Ageing with a Lifelong Disability. A Guide to Practice, program and
Policy Issues for Human Service Professionals. London: Jessica Kingsley Publishers.
Brown , I. & Brown , R. I. (2003). Quality of life and Disability: an Approach for
Community Practitioners. London: Jessica Kingsley. See Chapter 8 Quality of Life in
Families. 173-196.
Brown, I. & Percy, M. (2007) A Comprehensive Guide to Intellectual and
Developmental Disabilities. Baltimore:Brookes.
Brown, I., Anand, S., Fung, W. L. A., Isaacs, B., & Baum, N. (2003). "Family quality of
Life: Canadian results from an international study". Journal of Developmental &
Physical Disabilities, 15, 377.
Brown, Ivan., Brown, Roy I., Baum, Nehama., Isaacs, Barry J., Myerscough, Ted.,
Neikrug, Shimshon, Roth, Dana., Shearer, Jo & Wang, Mian. (2006). Family Quality of
Life Survey. General Version. Toronto, Canada:Surrey Place Centre,
www.surreyplace.on.ca
Brown R.I. (2000). Learning from quality of life models. In M.P. Janicki & E.F. Ansello
(Eds)., Community Supports for aging Adults with Lifelong Disabilities.
Brown, R.I (Ed) (2004-08). Adult Down Series. 12 volumes each approx 50 pages.
Portsmouth, UK: Int. Downs Syndrome Educational Trust. Inc.
Brown, R. I., & Brown, I. (2005). The application of quality of life. Journal of
Intellectual Disability Research, 49, 718-727.
Brown,R.I., MacAdam-Crisp, J., Wang, M., & Iarocci, G (2006). Family Quality of life
when there is a child with a disability. . Journal of Policy and Practice in Intellectual
Disabilities, 3(4) 238-246.
References (Contin)
•
Brown, R.I., Hong, K., Shearer,J., Wang, M & Wang, S. (In Press). Family Quality of Life in Several Countries: Results and Discussion of Satisfaction in
Families where there is a Child with a Disability.In R. Kober (Ed) Enhancing the quality of life of people with intellectual disability: From theory to
practice ,New York: Singer.
Brown, R.I., Schalock, R.L., and Brown, I (Eds). (2009) Special issue: Quality of Life and its Applications. Journal of Policy and Practice in Intellectual
Disabilities. 6(1), 1-64
Chou, Y.-C., & Schalock, R. (2009). Survey outcomes and cross-national comparisons of quality of life with respect to people with intellectual disabilities in
Taiwan. Journal of Policy and Practice in Intellectual Disabilities. Intellectual and Developmental Disability, 6 (1), 6-9.
•
Isaacs, B. J., Brown, I., Brown, R.I, Baum. N., Myerscough, T., Neikrug,S.,, Roth.D., Shearer, J., & Wang M. (2007) The International Family Quality of
Life Project: Goals and Description of a Survey Tool. Journal of Policy and Practice in Intellectual Disabilities.4(3), 177–185.
•
Jokinen, N. S., & Brown, R. I. (2005). Family quality of life from the perspective of older parents. Journal of Intellectual Disability Research, 49, 789793.
•
Jokinen, N.J., & Brown,R.I (In Press).Family Quality of Life & Older-Aged Families of Adults with an Intellectual Disability
By Nancy S. Jokinen and Roy Brown (In Press)
In R. Kober (Ed) Enhancing the quality of life of people with intellectual disability: From theory to practice ,New York: Singer.
•
Manna, H., Summers, J. A., Turnbull, A.P., & Poston, D.J. (2006) A review of outcome measures in early childhood programs. . Journal of Policy and
Practice in Intellectual Disabilities 3(4),219-228.
•
Turnbull, A.,, Brown, I., Turnbull, H.R.(Eds) ((2004) Families and People with Mental retardation and Quality of Life: International Perspectives.
Washington: AAMR.
•
Wang, M & Brown, R. (in press). Family quality of life: A framework for policy and social service provisions to support families of children with
disabilities. Journal
of Family Social Work.
•
•
Werner, S ., Edwards, M., Baum, N.T. (2009)Family Quality of Life before and after placement of a family member with a developmental disability in
residential placement: A qualitative inquiry. Journal of Policy and Practice in Intellectual Disabilities ,6(1) In Press.
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Yang, O., 1998. “Social stigma on people with mental disorder”, The Korean Journal of Social Welfare, 35, 231-260
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Zuna, N Turnbull, A., and Summers (2009).Family Quality of Life: Moving from Measurement to Application. Journal of Policy and Practice in
Intellectual Disabilities. 6(1), 25-31