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: sandrews@richmond.org.nzMelissa Rowthorn: melissa.rowthorn@connectsr.org.nz

Research & Resources

Questions

Your Turn …