monitoring changes to quality of life during recovery an ngo exploration into the use of the whoqol...
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Monitoring changes to Quality of Lifeduring Recovery
An NGO exploration into the use of the
WHOQOL BREF as an outcome measure
Melissa Rowthorn (Connect Supporting Recovery) & Sarah Andrews (Richmond Services Ltd)
Positive Psychology Conference
Auckland8 June 2013
Today’s Focus
Introducing our services
Outcome measurement
The 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
Overview
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.
Who are we?
Connect Supporting RecoveryRichmond Services Ltd
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
Why Measure Outcomes
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)
So what is an intended result?
What is the WHOQOL BREF?
Cross cultural HRQOL tool – WHOQOL 100 [6 Domains]
WHOQOL BREF [26 items ] – 4 Domains
AUT – 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).
World Health Organization’s HRQOL Assessment tool
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 researched
Yet not used alone – alongside other measures
Why use the WHOQOL BREF as an outcome measure?
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.
WHOQOL & recovery
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 SocialSupports
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 see him/her as sick
Untrained person sees person 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
National Empowerment Centre - Daniel Fisher
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,
What is improving for people?
Organisation wide outcome measurement – roll out and use… Tool & user manual
Develop supplementary tools to aid communication & standardisation
Option for NZ items (5)
Staff 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
Getting ready to collect data
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 this into personal planning What's going on for me now? What do I want the future to look like? Motivational interviewing techniques
Context of a trusting relationship ++ Enhances relationship but trust a pre requisite Can be perceived as “a test”
Collecting data in the context of relationship
“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”
Quotes from end users
Implications for practice: Ethics & Sensitivity
Perceived iIntrusive nature of questions – particularly Q21
Navigating privacy issues Cultural normsBoundaries of support
work Collecting & using data
in an anti paperwork and over-assessment culture
Collecting data safely
Multi-level analysis Client
Informs Personal Planning Self – evaluation Identification of strengths and resources
Service level Expected and identified patterns of
change Used alongside other evidence sources Contribution to QOL –direct and indirect
Organization level Trends over time for service population Health promotion role
Sector learning [ future potential]
Measuring outcomes on many levels
One client’s relapseTriggers – Loss of job & relationship
Individual Level Analysis
QOL Deteriorated QOL remained stable QOL improved
Q7 Concentration 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
Q22 Support from friends
Q30 Feelings of belonging
Q 12 Money
Q14 Leisure opportunities
Q24 Access to healthcare
Q25 Transport
Facets that changed / remained stable
Do they make sense in light of the triggers and person’s vulnerabilities?
One service: work and QOLRichmond: 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 facet rating change varied (1-5) 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 reflections Holistic benefits of employment Reduced self stigma - milestone Changed routines
Service Level Analysis
QOL changes over time
Organisational Level Analysis – Domain Level
Richmond: Mean domain ratings (initial cohort)
57% 55% 55%62%59% 58% 57%
63%59% 57% 59% 63%58% 58% 58%
63%
0%10%20%30%40%50%60%70%80%90%
100%
Physical domain Psychological domain Social/ Relationshipsdomain
Environmental domain
Mea
n %
ratin
gs
mean baseline mean 3 month mean 6 month mean 9 month
Initial cohort over four quarters n= 897, 522, 270 & 165
QOL changes over time
Organisational Level Analysis – Facet Level
Implications for practice: Statistics
The unit of analysisLevel of analysisTime periodComparisonsCapability and
capacityTriangulating
results with other evidence
Practice challenges
In Summary ….Philosophical match with sector
direction
Outcomes for learning & improvement
Still exploring utility
“Recovery is happening when people can live well in the presence or absence of mental health problems” Scottish Recovery Network
WHOQOL in NGO’s
For further information:The World Health Organisation quality of life assessment (WHOQOL) tools and their development: http://www.who.int/mental_health/media/68.pdfhttp://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 New 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: [email protected] Rowthorn: [email protected]
Research & Resources
Questions
Your Turn …