Positive Psychology
Conference
Monitoring
changes to
Quality of Life
during Recovery
Auckland
8 June 2013
An NGO exploration into
the use of the WHOQOL
BREF as an outcome
measure
Melissa Rowthorn (Connect Supporting Recovery)
& Sarah Andrews (Richmond Services Ltd)
Overview
Today’s Focus
 Introducing
 Outcome
 The
our services
measurement
WHOQOL BREF tool
 Exploring
Links between – the WHOQOL BREF &
mental health recovery
 Process
& learning - introducing outcome
measurement into service delivery
 Value
of and limitations of the WHOQOL BREF as an
outcome measure
Who are we?
Richmond Services Ltd
Connect Supporting Recovery
 Representatives
of a community of interest
supported by The NZ WHOQOL Group & Platform
 Not for Profit NGO Support Services
 Providing Recovery orientated support services:

Service Delivery is typically - strengths focussed, goal
orientated, focussed on life-skill development,
increased insight, new coping skills, community
integration and social reconnection drawing on
Psychosocial models of recovery.
Why Measure Outcomes
The call to measure outcomes
 Accountability
 MOH
Goal - outcome
focused health system
 Programme
evaluation –
learning & CQI
 Commitment
to client
welfare and wellbeing
“Determining and evaluating the results of an
activity, plan, programme & comparing it with the
intended or projected results” Business Directory.com
So what is an intended result?
What is Recovery?
“The barriers brought about by being placed in the category of ‘mentally
ill’ can be overwhelming. These disadvantages include loss of rights and
equal opportunities, and discrimination in employment and housing, as
well as barriers created by the system’s attempt at helping- e.g., lack of
opportunities for self-determination and disempowering treatment
practices.” Anthony, 1993 (p.533)
“Recovery is not about going back to who we were. It is a process of
becoming new. It is a process of discovering our limits, but it is also a
process of discovering how these limits open upon new possibilities.
Transformation, rather than restoration, becomes our path.” Deegan
“Recovery is not what services do to or for people. Recovery is
what people experience themselves as they become empowered
to manage their mental illness and/or substance misuse in a
manner that allows them to achieve a meaningful and a positive
sense of belonging in their community. National Institute for Mental
Health in England (NIMHE)
World Health Organization’s
HRQOL Assessment tool
What is the WHOQOL BREF?
 Cross
cultural HRQOL tool – WHOQOL 100 [6 Domains]
 WHOQOL
 AUT
BREF [26 items ] – 4 Domains
– NZWHOQOL BREF [26 + 5 NZ cultural items]
Hsu, P (2009); Feng (2011) & NZWHOQOL Group
 WHO’s definition of QOL:
“An individual’s perception of their position in life in the context of the
culture and value systems in which they live and in relation to their
goals, expectations, standards and concerns. It is a broad ranging
concept affected in a complex way by the person’s physical health,
psychological state, personal beliefs, social relationships and their
relationship to salient features of their environment ”
(Oort, 2005).
Why use the WHOQOL BREF
as an outcome measure?
Strengths of the WHOQOL BREF
 Fits
with the holistic nature of our service delivery, a
client’s changing definitions of self and is responsive
to the changing perceptions of his/her own life as
recovery progresses.
 Short,
self determined evaluation
 Validated
with the NZ population
 Cross
cultural applicability
 Valid
and Reliable
 Internationally
 Yet
researched
not used alone – alongside other measures
WHOQOL & recovery
How might the WHOQOL BREF
evaluate recovery outcomes?
WHOQOL facets
cover core areas of
life that can be
negatively impacted
by mental illness,
then improved over
time.
It can also pick up
areas of life
satisfaction, what is
working well at the
moment.
National Empowerment Centre
- Daniel Fisher
Characteristics of recovery
7 characteristics
Person with Schizophrenia
Person who has recovered
from Schizophrenia
Decision Making
Professionals need to make major
decisions
Self Determining
Major Social
Supports
Mental health system provides
social supports
Friendship network provides
majority support
Social Role/Identity
Consumer, a schizophrenic, or
mental health patient
Person is worker, student,
parent, or other role
Role of Medication
Considered a requirement
One tool among many chosen
by the individual
Emotional Intelligence
Strong emotions are symptoms to
be treated, not learnt from or used
to relate
Person expresses and works
through emotions by self or with
friends, used actively
Global Assessment of
Functioning
60 or below: untrained person would Untrained person sees person
see him/her as sick
as normal, not sick
Sense of Self
Weak, defined by others, no sense
of future, life meaning / purpose
Strong, defined by self, peers,
sense of meaning and purpose
What is improving for people?
Can the NZ WHOQOL BREF
evaluate features of recovery?
7 Characteristics
Recovered Person
WHOQOL Facets
Decision Making
Self Determining
Q17, 29, 31
Social Supports
Non MH system
Q20, 22, 30
Role of Medication
Choice & tool among
many
Q4
Social Identity
Non-consumer
Q27, 18, 19
Emotional Intelligence
Expresses and works
through emotions
Q26, 29
Global Functioning
Untrained person sees
as normal
Q17, 27, 29, 15
Sense of Self
Strong, life has purpose,
future
Q5, 6, 19,
Getting ready to collect data
Organisation wide outcome
measurement – roll out and use…
 Tool


Develop supplementary tools to aid
communication & standardisation
Option for NZ items (5)
 Staff



& user manual
training
The tool and purpose of measuring
self rated QOL
Self completion
Use of results to inform individual planning
and review – integrating into service delivery
 Systems


to manage data
Data entry
Data analysis and reporting at different levels
Collecting data in the
context of relationship
Enhancing the
quality and nature of conversations
 The



meaning assigned by clients to ratings
Insight into their world
Recognising strengths & resources
Establishing client’s priorities re change
 Translating



What's going on for me now?
What do I want the future to look like?
Motivational interviewing techniques
 Context


this into personal planning
of a trusting relationship ++
Enhances relationship but trust a pre requisite
Can be perceived as “a test”
Quotes from end users
“Certainly evidence of people using QOL as conversation starter…or
opening a wondering about what’s happened. I’m surprised about how
useful that has been in helping people focus conversations; it provides
a neat little structure with a number of domains. (Richmond Practice
Leader)
Client quotes:
“Its good, it’s visual and its something you have done your self. It’s not
like somebody had interpreted it for you. You have had to do it yourself,
so you can’t say somebody else thought that, you must have thought
that at the time. It's a really good thing.”
“I was worried some answers may show a set back…it’s hard to be
completely honest…I felt I needed to keep something back”
“I’m honest with him so he can help me”
“Reminded me of therapy”
“The timing aspect is interesting; if you get me on a good day then its
good, if you got me on a bad day then it wouldn’t be so good”
Collecting data safely
Implications for practice: Ethics &
Sensitivity
 Perceived
iIntrusive
nature of questions –
particularly Q21
 Navigating privacy
issues
 Cultural norms
 Boundaries of support
work
 Collecting & using data
in an anti paperwork
and over-assessment
culture
Measuring
outcomes on many levels
Multi-level analysis

Client




Service level




Expected and identified patterns of
change
Used alongside other evidence sources
Contribution to QOL –direct and indirect
Organization level



Informs Personal Planning
Self – evaluation
Identification of strengths and resources
Trends over time for service population
Health promotion role
Sector learning [ future potential]
Individual Level Analysis
One client’s relapse
Triggers – Loss of job & relationship
Facets that changed / remained
stable
Do they make sense in light of the triggers and person’s vulnerabilities?
QOL Deteriorated
QOL remained stable
QOL improved
Q7
Q 5 Life enjoyment
Q 3 Pain
Q11 Body Image
Q 6 Meaning in life
Q 4 Medication
Q 19 Satisfaction with Self
Q 26 Mood
Q 10 Energy levels
Q 15 Mobility
Q 17 Ability to perform ADLS
Q 16 Sleep
Q18 Capacity to work
Q 8 Safety
Q 20 Personal Relationships
Q 9 Health of environment
Q21 Satisfaction with sex life
Q13 Access to information
Concentration
Q22 Support from friends
Q30 Feelings of belonging
Q 12 Money
Q14 Leisure opportunities
Q24 Access to healthcare
Q25
Transport
Service Level Analysis
One service: work and QOL
Richmond: Individual placement and support service
WHOQOL pre & post employment n=16
All




mean domain scores increased
Physical +2%
Psychological + 8%
Social + 3%
Environmental + 2%
Mean



18 increased (negative feelings + 0.69, money + 0.63)
3 no change (meds, healthy environment & ADLs)
5 decreased (sleep – 0.50, access health services – 0.38
Staff



facet rating change varied (1-5)
reflections
Holistic benefits of employment
Reduced self stigma - milestone
Changed routines
Organisational Level Analysis
– Domain Level
QOL changes over time
Mean % ratings
Richmond: Mean domain ratings (initial cohort)
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
57% 59% 59% 58%
55% 58% 57% 58%
55% 57% 59% 58%
Physical domain
Psychological domain
Social/ Relationships
domain
mean baseline
mean 3 month
Initial cohort over four quarters
mean 6 month
62% 63% 63% 63%
Environmental domain
mean 9 month
n= 897, 522, 270 & 165
Organisational Level Analysis
– Facet Level
QOL changes over time
Changes in facet 19 ratings among a cohort of complete’s [entry,
review exit] clients at CSR ‘Satisfaction with self’ on the
WHOQOL BREF over time
6
5
4
Self ratings on
WHOQOL BREF
From 1-5
3
2
1
0
-1000
-500
0
500
Days within CSR
1000
1500
2000
Practice challenges
Implications for practice: Statistics
The
unit of analysis
Level of analysis
Time period
Comparisons
Capability and
capacity
Triangulating
results with other
evidence
WHOQOL in NGO’s
In Summary ….
 Philosophical
 Outcomes
 Still
match with sector direction
for learning & improvement
exploring utility
“Recovery is happening when people can live well in
the presence or absence of mental health problems”
Scottish Recovery Network
Research & Resources
For further information:
The World Health Organisation quality of life assessment (WHOQOL) tools
and their development: http://www.who.int/mental_health/media/68.pdf
http://www.who.int/substance_abuse/research_tools/whoqolbref/en/
Hsu, P. (2009). Development of a New Zealand version of the World Health
Organisation Quality of Life survey instrument (WHOQOL). A dissertation submitted to
Auckland University of Technology in partial fulfillment of the requirements for the
degree of Master of Health Science in Psychology.
Billington, R., Landon, J., Krageloh, C., Shepherd, D (2010). The New Zealand World
Health Organisation Quality of Life (WHOQOL) group. Journal of the N ew Zealand
Medical Association, Vol 123(315).
Feng, X. (2011). Selection of National Items for the New Zealand WHO Quality of Life
Questionnaire. A thesis submitted to Auckland University of Technology in partial
fulfillment of the requirements for the degree of Bachelor of Health Science (Honors).
Sarah Andrews: sandrews@richmond.org.nz
Melissa Rowthorn: melissa.rowthorn@connectsr.org.nz
Your Turn …
Questions