roy brown phd., (all slides copyright 2009). individual and family quality of life: issues of ageing...

Individual and Family Quality of Life: Issues of Ageing and Intellectual

DisabilityRoy I. Brown PhD, FIASSID.

Ageing Seminar2009

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 nowThose 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 LIFEWhat 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 LifeQuality Quality of Lifeof Life

AgeAge

FIGURE QUALITY OF LIFE - THEMES AND CONCEPTS

C 2000 Roy Brown

QUALITY OF LIFE

Sensitizing concept relevant to individual perceived needs

Definitions VariousSPECIFIC QUALITY OF LIFE CONCEPTS

InterventionResearch

MeasurementProfessional Practice / Education, Policy &

Ethical IssuesProgramme Evaluation and Quality Assurance

A Sensitizing concept relevant to individual perceived needs

Policy making, health-education, social promotion, advocacy etc.

e.g. Taylor 1994

Quality of life is:-

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)

Definitions

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)

Def Contin

Being

Belonging

Becoming

Ivan Brown et al

• 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

Some key descriptors of quality of life

Domains of well beingHolismLifespanChoicesPersonal ControlPerceptionSelf ImageEmpowermentInter & Intra Personal VariabilityValues

e.g. Goode 1994, Renwick , Brown,I., & Nagler 1996, Felce & Perry, 1996, Brown 1997, Schalock 1997

SPECIFIC QUALITY OF LIFE CONCEPTS

Exclusion & Inclusion

CAN BE:-

PHYSICALSOCIAL

PSYCHOLOGICALEDUCATIONAL

1.Short or long term2.Individual or Group (e.g. Gender or

Intercultural)3.Inter Generational4.Institutional5.Within the Community6.Within the Home

Exclusion has rules and values which are exclusive & hierarchical

See Brown & Brown (2003)

Exclusion & Inclusion can be:-

INDIVIDUAL & FAMILY QUALITY OF LIFE

Individual and Social IndicatorsPerceptual and ObjectivePersonal not ProxyQuantitative and Qualitative

AimsAssessmentPractical application and intervention

Evaluation Research

MEASUREMENT

• The Resident Satisfaction Inventory (Burnett, 1989)

• Rehabilitation Questionnaire. A Personal Guide to the Individual’s Quality of Life (Brown & Bayer 1992)

• The Comprehensive Quality of Life Scale (Cummins, 1993)

Measurement QOL (Instruments)

•Quality of Life Questionnaire (Schalock & Keith, 1993)

• The Quality of Life Instrument (Brown, Raphael & Renwick, 1997)

• The Family Quality of Life Survey (Brown et al, 2006)

Measurement QOL (Instruments) 2

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?

All the above concepts can be applied

to the family with a member who is ageing

Quality of Life and the Family

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 evaluationon the left column and you will see

the link to family quality

http://www.surreyplace.on.ca/





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 Bosnia Belgium Canada • India Iran Ireland Israel Italy Japan • Malaysia Mexico Netherlands Poland • Slovenia Taiwan 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

Total Australia (n=55)

Respondent: Mean Age = 49 yrs Age Range = 32-77

Child: Mean Age = 15 yrs Age Range = 2-41

Data percentage of respondents satisfied or very satisfied with Family Quality of Life for each domain

AUSTRALIAN

0%

10%

20%

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40%

50%

60%

70%

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100%

1 2 3 4 5 6 7 8 9

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

CANADA

Canada (n=51)

Parent: Mean Age = 40yrs Age Range = 27-60

Child: Mean Age =7.6 Age Range = 2-12


CANADA

0%

10%

20%

30%

40%

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60%

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100%

1 2 3 4 5 6 7 8 9

DOMAINS

1. Health


3. Family Relations







AUSTRALIA & CANADA

Australia (n=55)Respondent: Mean Age = 49yrs Age Range = 32-77 // Child: Mean Age = 15yrs Age Range = 2-41Canada (n=51)Respondent: Mean Age = 40yrs Age Range = 27-60 // Child: Mean Age =7.6yrs Age Range =2-13


CANADA and AUSTRALIA

0%

10%

20%

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100%

1 2 3 4 5 6 7 8 9

Australia Canada

DOMAINS

1. Health


3. Family Relations







CANADA: ASD & DOWN

Autism (n=18) Mean Age: 7.78 yrs Age Range: 6-13

Down (n=33) Mean Age: 7.55 yrs Age Range: 2-12

DOMAINS

1. Health


3. Family Relations







CANADA: ASD, DOWN, 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

DOMAINS

1. Health


3. Family Relations







AUSTRALIA AGEING

Australian Ageing (n=12)

Parent: Mean Age = 63 Age range = 56-77

Child: Mean Age = 26 Age range = 14-41


AUSTRALIAN AGEING

0%

10%

20%

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70%

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100%

1 2 3 4 5 6 7 8 9

DOMAINS

1. Health


3. Family Relations







AUSTRALIA 55+ 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


AUSTRALIAN 55+ AUSTRALIAN 54-

0%

10%

20%

30%

40%

50%

60%

70%

80%

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1 2 3 4 5 6 7 8 9

Australian 55+ Australian 54-

DOMAINS

1. Health


3. Family Relations







• Family Quality of Life & Older-Aged Families of Adults with an Intellectual DisabilityBy 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 DisabilityBy 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.

Taiwan (n=83) Parent: Mean age =37.9 Age range =26-58 // Child: Mean age = 5.4 Age Range = Child 1-14Korea (n=81) Parent: Mean age =37.7 Age Range =21-51 // Child Mean age =8.4 Age Range = 4-18

DOMAINS

1. Health


3. Family Relations








TAIWAN and KOREA

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

1 2 3 4 5 6 7 8 9

Taiwan Korea

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 povertySingle 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

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!

Overall concerns

Major Behavioural Challengeswhich appear to cause family distress and often an inability to cope.

These behaviours include smearing of feces, throwing, spitting, hitting, scratching, bed-wetting, 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 continuedParents unable to get out together as a couple on a weekly or even monthly basis and no time for themselvesIndividual family members ,whether children or adults, unable to study or pursue their major interestsInstances 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.

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 2

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

Other Issues 3

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 beliefsExternal 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 visionKeep environmental and Social aspects of life familiarMaintain choicesPromote self image

Maintain familiar and enjoyed routinesKeep contact with family and friendsMake allowance for slowing pace of

understanding and actionProvide supports in order to maintain and

encourage activitiesEnsure activities like work,

helping & interacting routines are encouraged

Maintain choices

Promote self image Maintain familiar and enjoyed routinesKeep 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 shameProvide supports in order to maintain and

encourage activitiesEnsure activities like work, helping and

interacting routines are encouragedRecognise and make allowance for theindividual’s history

Selected ReferencesBigby, 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.caBrown 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, 789-793.

• Jokinen, N.J., & Brown,R.I (In Press).Family Quality of Life & Older-Aged Families of Adults with an Intellectual DisabilityBy 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.

• Yang, O., 1998. “Social stigma on people with mental disorder”, The Korean Journal of Social Welfare, 35, 231-260

• 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

roy brown phd., (all slides copyright 2009). individual and family quality of life: issues of ageing...

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