1. Monitoring changes to Quality of Life during 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 Auckland 8 June 2013

2. 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

3.  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 Recovery Richmond Services Ltd

4. 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

5. 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?

6. 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

7. 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?

8. 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

9. Characteristics of recovery 7 characteristics Person with SchizophreniaPerson 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 requirementOne 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

10. Can the NZ WHOQOL BREF evaluate features of recovery? 7 CharacteristicsRecovered PersonWHOQOL 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?

11. 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

12. 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

13. “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

14. 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 Collecting data safely

15. 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

16. One client’s relapse Triggers – Loss of job & relationship Individual Level Analysis

17. QOL DeterioratedQOL remained stableQOL 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?

18. 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 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

19. QOL changes over time Organisational Level Analysis – Domain Level Initial cohort over four quarters n= 897, 522, 270 & 165

20. QOL changes over time Organisational Level Analysis – Facet Level

21. Implications for practice: Statistics  The unit of analysis  Level of analysis  Time period  Comparisons  Capability and capacity  Triangulating results with other evidence Practice challenges

22. 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

23. 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/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 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.nzsandrews@richmond.org.nz Melissa Rowthorn: melissa.rowthorn@connectsr.org.nzmelissa.rowthorn@connectsr.org.nz Research & Resources

24. Questions Your Turn …