meeting of minds 2015 “assessing well-being and quality of life“ "using the personal...
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Meeting of Minds 2015
“Assessing well-being and quality of life“
"Using the personal well-being index in relation to ASD“
Richard MillsUK
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Key questions
• What is ‘wellbeing’?
• Why and how do we measure it ?
• Is the Personal Wellbeing Index helpful?
• Implications for autism?
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How do we measure quality of life?
• Objective criteria – e.g. absence of disease- absence of poverty – personal possessions- family and relationships etc
• Subjective criteria- our feelings about our sense of wellbeing- also known as Subjective Wellbeing (SWB)
Quality of life
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How import
• How important is it– To compare QOL between countries?– Within countries?
• How big a deal is happiness?
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Quality of LifeWhy measure quality of life and subjective wellbeing?
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Why measure quality of life and subjective wellbeing?
Happy Citizens....(Lyubomirsky et al 2005) • Positive perceptions of self and others• Stronger creativity and problem solving• Work harder• Create more social capital• Healthier• Live longer• Better social relationships• More self-sufficient
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Personal Wellbeing IndexPWI (Cummins et al; Deakin 2006)
• Quality of life measures essentially about subjective wellbeing (SWB) – which is affected by:-
– Chronic pain – Chronic stress – Lack of intimacy– Living conditions – Incarceration (prisoners)– Poverty (and loss of wealth)– Lack of purpose in life – Degree of control/autonomy
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relationship between stressor events and SWB?
Cummins 2012
Very Weak Very Strong Stressor
SWB
High
Low
?
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So what?
• Measuring subjective wellbeing• How ?• The Personal Wellbeing Index (PWI)
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Personal Wellbeing IndexPWI (Cummins et al; Deakin 2006)
Why the PWI ? • Compatible with EU quality of life values• Since 2001/2002 adopted in over 40
countries• Translated in to more than 20 languages• Reported on in more than 120 journal
articles• ‘Autism friendly’ (as in jargon free/not
prescriptive- adapted for cognitive and intellectual disability)
• Succinct and its free!
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Personal Wellbeing IndexPWI (Cummins et al; Deakin 200
Questions and [domains]How satisfied are you with…?1. your life generally (question added in 2013)2. your standard of living? [Standard of Living]3. your health? [Personal Health]4. what you are achieving in life? [Achieving in Life]5. your personal relationships? [Personal Relationships]6. how safe you feel? [Personal Safety]7. feeling part of your community? [Community Connectedness]8. your future security [Future Security]9. your spirituality or religion? [Spirituality – Religion]
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How satisfied are you with your ----?
“Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer.”
0 1 2 3 4 5 6 7 8 9 10
No satisfaction at all
CompletelySatisfied
Personal Wellbeing Index (PWI) (Cummins et al; Deakin 2006)
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“Just think of the question you have been asked in the way it makes sense to you. There is no right or wrong answer
0 1 2 3 4 5 6 7 8 9 10
No satisfaction at all
CompletelySatisfied
Personal Wellbeing Index (PWI) (Cummins et al; Deakin 2006)
Questions and [domains]How satisfied are you with…?1. your life generally (question added in 2013)2. your standard of living? [Standard of Living]3. your health? [Personal Health]4. what you are achieving in life? [Achieving in Life]5. your personal relationships? [Personal Relationships]6. how safe you feel? [Personal Safety]7. feeling part of your community? [Community Connectedness]8. your future security [Future Security]9. your spirituality or religion? [Spirituality – Religion]
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Sat
isfa
ctio
n w
ith
Lif
eS
tan
dar
d o
f L
ivin
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Per
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al H
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Rel
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ips
Per
son
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om
mu
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arti
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utu
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ecu
rity
Sp
irit
ual
ity
or
Rel
igio
n
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Negative Outlook
Neutral Outlook
Positive Outlook
Sta
nd
ard
of
Liv
ing
Per
son
al H
ealt
hA
chie
vin
g in
Lif
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Rel
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ips
Per
son
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Sp
irit
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or
Rel
igio
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Negative Out-look Neutral Out-lookPositive Out-look
UK women controlsUK women with ASD
PWI RESULTS: Autism in Pink
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“How satisfied are you with your --------?”
Life as a whole
Personalrelationships
Community connectedness
Spirituality/Religion
Safety
Futuresecurity
Standard ofliving
Achieving in life
Personal Health
How people feel about the domain
How satisfied people feel in
general
Cummins 2012
1. An overall average [Subjective wellbeing]
2. A value for each domain that can be used diagnostically as well as potentially an input to policy development
Personal Wellbeing Index
Mexico Australia Ireland Spain Italy Romania Argentina Algeria50
55
60
65
70
75
8077.4
73.0 72.871.1 71.0
69.6
65.6
52.3
Strengthof
satisfaction
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PWI: Satisfaction with life control v autism
UK women- control UK women -autism0
10
20
30
40
50
60
70
80
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conclusion
• Initial findings– Autistic participants scored lower on both qualitative and
quantitative measures of the PWI ….This is important– The PWI is promising in terms of providing a thematic and
structured means of organising information for autistic adults- means of facilitating group work.
• Leading to tangible outcomes for participants• More needed on how well it measures wellbeing
– Overall perception of wellbeing not the same as the sum of the parts
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conclusion
implications…… ?– Does being autistic guarantee a lower quality of life … or is it just
different?– Are there intrinsic factors associated with autism and reduced quality
of life and lower subjective wellbeing– e.g. anxiety, ‘autism symptoms’?
– Are there societal factors implicated in reduced subjective wellbeing- e.g. stress, discrimination, isolation ?
– Does it help policy makers identify specific vulnerabilities? – Does measuring quality of life help all of us understand issues – get
control over our lives and play to our strengths? – Sometimes we just need to relax………
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Acknowledgements and thanks to
• Kabie Brooke, ARGH, Highland, Scotland• Bob Cummins, Deakin University, Australia• Judith Gould, NAS, UK• Sylvia Kenyon, NAS UK• Damian Milton, Research Autism, UK• The Autism in Pink women, UK• Vicki Bitsika and Chris Sharpley, Bond University, Australia• Mark Brosnan, University of Bath
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Thank you…
Richard Mills
rm874bath.ac.uk