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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Neutral Outlook

Positive Outlook

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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

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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