Dr Sarah Cook s.p.cook@shu.ac.uk

1. Being an occupational therapy researcher and collaborating on the current study: Lifestyle Matters Dr Sarah Cook s.p.cook@shu.ac.uk OT Educator's conference SHU 18.06.14

2. Aim of this talk • Picture a career of an OT involved in research • Look at the many ways and levels OTs can be involved in research • Stress that collaboration is vital • Demonstrate the importance of OT informed research for our clients and populations • use the Lifestyle Matters study as an example

3. It starts with curiosity As children we all engage in the occupation of research

4. Save the Children Fund programme evaluation: Community Based Rehabilitation in Zanzibar

5. Improving Anxiety Management Groups Learning to use a standardised outcome measure Together with Jan Duffy, Clinical Psychologist DESCRIPTION • Service evaluation in a Community Mental Health Team. 1990? • Problems with staffing, timing, poor attendance Methods: • Staff discussion groups; standardised symptom questionnaire completed by clients. Results: • As a team we changed things: • rolling programme of anxiety management courses, • day time and an evening course; and a woman only and a mixed courses • paired inexperienced staff with experienced group leaders • Routinely measured clients' outcomes

6. A study of outcomes of Occupational Therapy in mental health services Masters dissertation DESCRIPTION Research Question: • What outcomes do clients attribute to their experiences of the therapy process? • How do these outcomes relate to any goals or expectations? Methods: • Qualitative • researcher’s fore-understandings in generating interpretations • focussed interviews with 7 former clients of mental health OT Results • Intermediate outcomes: • Engagement in activity • Learning, and regaining confidence in abilities • Achievement of satisfying results • Contribution to other people • Creative expression

7. Intrapersonal Outcomes: Increased motivation Release of emotional pressure Changes in attitudes and beliefs Increased self awareness Improved self value or acceptance Adaptive Outcomes: Acquisition of skills Acquisition of knowledge Management of time and routines Acquisition of coping strategies concerning: Altering negative habits of thinking Controlling and expressing emotions Solving problems Coping with disabilities Managing anxiety and panic attacks Pacing time spent on work, leisure and rest Being assertive Subjective outcomes: Lifting of mood Reduction of distress Reduction of feeling isolated Feeling in control Experience of pleasure Feeling physically fit and reduction of pain Performance outcomes: Changed roles Improved ways of relating to others Functional competence and independence in the community Engagement in productive and creative activities Interaction with the local environment and community Final outcomes of OT

8. Trent Region Occupational Therapy Clinical Audit and Outcomes Project. a research job! DESCRIPTION • With my job share partner, Penny Spreadbury, Trent Region Head OTs employed us to stimulate, support and study clinical audits across the region, in a wide range of OT teams. Methods: • Literature searching and putting on a database • Participant observation, • Developing tools for outcome measurement, • Group interviews evaluating the process, thematic analysis Results: • Several barriers and enablers were established. • Individualised goal setting way forward • Development of a tool: Binary Individualised Outcome Measure. • Alternative to SOAP notes: ACTOR notes (Activity, Client’s observations, Therapist’s observations Overall analysis, Re-planning.)

9. Mental Health Advocacy Group evaluation Paid consultancy work DESCRIPTION group of service users had set up their own organisation, commissioned an evaluation. Methods: qualitative analysis of: • Individual interviews, group interviews, • Observed meetings, • Evaluation workshop (including a roving microphone). Results: recommendations on • policy and implementation for the organisation • staff roles, • clarification of different types of advocacy

10. Primary Mental Health Care Project a research-practitioner job, gave me the data for my PhD DESCRIPTION Job as a research practitioner in an inner-city GP surgery. About 100 patients with psychotic conditions, became my PhD study. Methods: • 1) Needs Assessment Survey using standardised assessments • Development of new service • 2) Case study of the new primary care mental health service • Single cohort, before and after quasi-experimental study using standardised assessments • Qualitative interviews with staff (interviews carried out by a student OT) • Survey of patient satisfaction (interviews carried out by service user interviewers) • Economic evaluation of costs

11. Dancing for Living Worked as a volunteer DESCRIPTION. Mental Health Foundation promoting service user led research, What was the impact of dance on emotional wellbeing, as a health promotion activity, and what helps people take part. Methods: Participatory research with members of the public and service user researchers • 5 Rhythms dance – free classes • Quantitative survey questionnaire, • Qualitative diaries, peer-pair interviews, focus groups, and feedback on draft report

13. Dancing for Living Results • Themes: • Specific to the dance group: A safe place; freedom of expression; structure of the rhythms; power of music; group connections. • Transformation through dance: moving from being stuck; releasing powerful feelings; integrating parts of ourselves. • Effects on day to day living: Part of life now; physical wellbeing; dancing as a strategy for emotional wellbeing; appreciating music. • What helps people take part: Out of 19 women, top scores: • Can go on your own without a partner (18), • Toilet nearby (17) • Friendly and welcoming (16) • Able to express self in own way (16) • No spectators watching (15) • Don’t need special clothes or equipment (14)

14. Occupational Therapy for people with psychotic conditions I won the award to pay for my salary and research costs DESCRIPTION • Post doctoral award from the Dept of Health research capacity awards. • 4 years funding (75% time), a programme of research, + local research grants, funded a small research team. • http://www.nihr.ac.uk/Lists/Research%20Training%20Awards/awards_current.aspx • Research team:& collaborators: Julie Coleman, Eleni Chambers, Melanie Hart, Sally Bramley, Nicky Watson, Helen Tompkins, Steve McGrath. Methods • Delphi survey, asking OTs to help define the intervention • Pilot Randomised Controlled Trial & economic evaluation using standardised outcome measures, in community mental health teams. • Qualitative study, individual interviews of people with psychotic conditions, carried out by a service user-researcher, using Framework analysis.

15. Occupational Therapy for people with psychotic conditions Results: Intervention schedule for OT for people with psychosis, 11 stages listing 82 actions (obligatory & optional components). Pilot RCT showed that: • no difference between the intervention and control groups, except • OT group had more clinical improvement in relationships, independence performance, independence competence and recreation, and reduced negative symptoms. Qualitative study showed that: • Some non OTs did OT, probably due to inter-disciplinary team working • Wide range of factors impacted on what people wanted in their daily lives. • OT was appreciated as focussing on achievement or independence; overcoming fears; organising time and widening horizons. • This was different from having things done for you, or having someone as a companion or coming along for re-assurance.

16. My recent collaboration in large research studies Improving Quality and Effectiveness of Services Therapies and Self-management on longer term depression (IQUESTS). • a literature review and qualitative study of self-management strategies used by people with long term depression and development of a Guide. • Sarah's contribution: • co-leading Work Package 2. • 10 Qualitative interviews and analysis • helping to write report and article This study is within the Collaboration and Leadership in Applied Health Research and Care for South Yorkshire (CLAHRC-SY). 2010 - 2011. Rehabilitation Effectiveness and Activities for Life (REAL): • a multicentre study of rehabilitation services and the efficacy of promoting activities for people with severe mental health problems. • Sarah's contribution: • a co-applicant on the bid • member of the steering group • developing the intervention for the cluster randomised trial, • supervising the therapists • monitoring fidelity to the intervention. January 2009 - March 2014.

17. Lifestyle Matters: A large collaborative study involving OTs at every level Principle investigators: • Prof. Gail Mountain (University of Sheffield) and Gill Windle (Bangor University) Research Teams: • Sarah Cook and Claire Craig (Sheffield Hallam University) • Bob Woods, Cath Brannan, (Bangor University) • Kirsty Sprang, Danny Hind, AnjuKeetharuth, Lauren O'Hara, Katy Treherne, Maggie Spencer, Tim Chater, Lauren Powell, Stephen Walters, John Brazier (University of Sheffield) Facilitators delivering the intervention: • Johanna Warren & Samantha Bryan (Sheffield) + OT clinical supervisor • Elaine Hughes & Jessica Shirley (Bangor) + 2 OT clinical supervisors

18. Thanks to Prof. Gail Mountain for being an inspiring research leader, and Clair Craig for her creativity - both developed and piloted 'Lifestyle Matters' and both are OTs. Gail produced the following slides.

19. The importance of ageing well Active ageing and prevention of ill health in older people is a priority for policy makers across Europe But also… Beautiful Old Age It ought to he lovely to be old To be full of the peace that comes of experience And wrinkled life fulfilment…………. DH Lawrence

20. The Well Elderly study of Lifestyle Redesign Clark, et al (1997) Occupational Therapy for independent older living adults: a randomised controlled trial. Journal of the American Medical Association, 278, 1321-1326 • Participants experienced benefit; health, function and quality of life • Benefit was sustained six months later • The interventions were cost effective

21. Lifestyle Redesign Would this programme from the USA work with community living older people in the UK?

22. Outputs from the feasibility study Results used to inform national guidance alongside well elderly study: http://guidance.nice.org.uk/PH16 Intervention published

23. Lifestyle Matters Programme Ethos • A preventive health approach which focuses on the benefits of activity • Underpinned by the belief that what we do on a day to day basis is central to our health and wellbeing • And that positive changes can only be sustained if they are embedded within what a person does on a day to day basis Programme Delivery • The older person is the expert • peer support • sharing information and positive coping • rooted in the local community

24. Lifestyle Matters: selecting from a menu of activities Beginnings: celebration Activity and health The ageing process and activity Personal energy, time and activity Goals; realising hopes and wishes Pulling things together – how is activity related to health

25. Lifestyle Matters: Ideas continued… Maintaining mental wellbeing Sleep as an activity Keeping mentally active Memory Maintaining physical wellbeing Nutrition Pain Keeping physically active

26. Lifestyle Matters: More ideas….. Occupation in the home and community • Transportation • Opportunities for new learning • Experiencing new technologies Safety in and around the home • Keeping safe in the community • Keeping safe in the home

27. Lifestyle Matters: yet more….. Personal circumstances • Dealing with finance • Social relationships and maintaining friendships • Dining as an activity • Interests and pastimes • Caring for others, caring for self • Spirituality Endings

28. Ideas for group outings and further activities; some examples • T’aichi • Exploring community resources – yoga, relaxation courses at community colleges • Aromatherapy, hand massage • Outing to a spa or leisure centre • Problem solving techniques – assertiveness, saying no • Individual sessions

29. Lifestyle Matterstrial • A pragmatic, two-arm, parallel group, individually randomised controlled trial in two study sites funded by LLHWB (6) • Included an evaluation of clinical and cost effectiveness of the intervention (Lifestyle Matters) and a process evaluation (fidelity checks and qualitative interviews) • Is examining the long term benefits of the intervention through a 2 year follow up

30. Intervention delivery & participants • Target reached: 270 randomised participants • 16 weekly meetings (11 groups ran) • Monthly 1:1 sessions to pursue individual goals • Groups supported by 2 trained facilitators (Band 4 NHS Equivalent) • Attended by 8-16 individuals • Central, accessible venues with appropriate facilities • Activities and outings designed to help people achieve or maintain a happy, healthy and fulfilling later life

31. Outcome measures For all participants, at baseline (after cognitive screening, 6 months after randomisation and once more two years later • Mental health dimension of the SF36 (primary) • Other dimensions of the SF-36 to measure all aspects of health including physical health; • EQ-5D (for health economic analysis (Brazier et al, 2007); • The Brief Resilience Scale (Smith et al, 2008); • General Perceived Self Efficacy (GSE) Scale(Schwarzer & Jerusalem, 1995); • Patient Health Questionnaire to determine extent of depressive symptomology (PHQ-9) (Spitzer et al, 1995); • de Jong Gierveld loneliness scale (de Jong, 1985); • An adapted Client Services Receipt Inventory (CSRI) to collect participants’ use of health, social care and community services for health economic analysis; • A simple socio-demographic questionnaire constructed for the purposes of the study No measure of participation!

32. Fidelity assessment

33. Fidelity assessment & process evaluation • Qualitative interviews and Framework data analysis • Interviewed all 4 facilitators, 2 time points • Interviewed all 3 OT supervisors post intervention • Interviewed 13 participants (10% purposive sample) post intervention • Participants from 6 groups across all 3 cycles • Both sites (Sheffield n=7, Bangor n=6) • Selection criteria included age, sex, geographical area, attendance as individual or part of a couple, education, previous occupation, level of current activity, number of sessions attended

34. Emergent results from process evaluation (participants) Most of those interviewed indicated that with the support of the group and the facilitators they had found the impetus to pursue one or more activities or interests since taking part in the programme I think what we’re going to do now, [wife] and I have decided that on Thursdays it should be an activity day for us…Erm but we’ve said, ‘OK, Thursday, we’ve enjoyed it so much, why don’t we go out and make Thursday an activity day’. We’ve nothing else to worry about, we’ve no dependents as such, we can go, go out any day, but Thursday ‘cause we’ve got into a routine, ‘yeah, let’s go and try so-and-so.

35. Emergent results from process evaluation (10% of participants) • Main reasons for not attending were illness or being ‘too busy’ but non attendance was also viewed negatively • Initial concerns over male/ female mix "I remember when I went in there that first day and, oh god, I was the only bloke there and I thought, what the hell have I let myself in for here? And when I was going, the last one [group meeting], I was quite, I was quite sad that it was over with, you know, because the group had joined in…as a gel, yeah, you know.

36. Emergent results from process evaluation (participants) Challenges were posed by transport and the climate; Shall we go, shan’t we go because of the snow and one thing and another, which again was unfortunate...when er, you know, we had two out of the, three out of the sixteen weeks...where I couldn’t go, er, and I mean I only live a couple of hundred yards away”.

37. Emergent results from process evaluation (facilitators) • Over time, the facilitators did not change attitudes and understanding but did develop and improve their skills and confidence • Rather than the facilitators instructing and directing, they encouraged the group to make decisions and enabled people to contribute and for some, to take leadership. • Group dynamics were very important. Group facilitation needed to include subtle and nuanced responses to complex relationships and behaviour including conflict. This enabled trust and respect for difference, expression of feelings and knowledge, and for the group to gel. • Older people shared and developed coping strategies for managing the challenges of ageing. This included increased assertiveness at home and with GPs, balancing occupations and routines, and finding new ways to be active.

38. Emergent results from process evaluation (facilitators) • The programme provided opportunities to try out new activities and community facilities, which led to changes in routines and behaviour • There was little evidence of the older people taking over and continuing the organisation of the whole group by the end of the programme • People built new friendships which they planned to continue after the programme, and do activities together. • It may have needed longer than 16 weeks, and a gradual withdrawal of facilitation, for groups to take over running themselves • Facilitators found it challenging to engage people in the 1:1 sessions which were initially seen as optional • The clinical supervision was much appreciated, but in future supervisors should have experienced delivering the programme themselves. • Recruitment challenges – how to reach those in most need? Some people took part to help the researchers, not because they were isolated or inactive. But they did say they benefited from the programme.

39. What have we learnt?? • No definitive trial results due to 2 year follow up – interim analysis not allowed • From the feasibility study to the major trial • Methodological contribution - evaluation of complex, group based interventions • Have we measured the right dimensions? – would have liked a measure of participation • Need to target recruitment to those most in need • Need to establish 1:1 sessions as essential.

40. Future Research and You • Two feasibility studies have been started: Lifestyle Matters for older people with dementia, and for older people with depression. • Could Lifestyle Matters be modified for other client groups in your settings? • and with other age groups?

41. How can you see yourself as an occupational therapist contributing to research? • Evidence based practice - implementation in routine services • Funding bids need clinical expertise • Development of new or modified OT interventions • Delivery and supervision of new interventions being researched • Fidelity checking (to monitor adherence to the intervention) • Research steering or management group • Member of a research team collecting and analysing data. • MSc or PhD study to learn research skills • and if this is not for you, SUPPORT your colleagues and students to get involved.

42. Thank you!

43. References • Clark F, Azen S, Zemke R, Jackson J, Carlson M, Mandel D: Occupational Therapy for Independent-Living Older Adults. Journal of the American Medical Association 1997, 278(16):1321-1326. • Clark F, Azen S, Carlson M, Mandel D, LaBree L, Hay J: Embedding Health-Promoting Changes Into the Daily Lives of Independent-Living Older Adults: Long-Term Follow-Up of Occupational Therapy Intervention. Journal of Gerontology: Series B Psychological Sciences 2001, 56(1):60-63. • Hay J, LaBree L, Luo R, Clark F, Carlson M, Mandel D: Cost-Effectiveness of Preventive Occupational Therapy for Independent-Living Older Adults. Journal of the American Geriatrics Society 2002, 50(8):1381-1388. • Clark F, Jackson J, Carlson M, Chou C, Cherry B, Jordan-Marsh M, Knight B, Mandel D, Blanchard J, Granger D et al: Effectiveness of a lifestyle intervention in promoting the well-being of independently living older people: results of the Well Elderly 2 Randomised Controlled Trial. Journal of Epidemiology & Community Health 2011. • National Institute for Health and Care Excellence (NICE): Guidance on occupational therapy and physical activity interventions that promote good health and wellbeing in older people. In. London: National Institute for Health and Care Excellence; 2008. • Sprange, K. Mountain, GA. Brazier J. Cook, SP. Craig, C. Hind, D. Walters, SJ. Windle, G. Woods, R. Keetharuth, AD. Chater, T. Horner, K. (2013) Lifestyle Matters for maintenance of health and wellbeing in people aged 65 years and over: study protocol for a randomised controlled trial. Trials 14:302 • Bellg A, Borrelli B, Resnick B, Hecht J, Minicucci D, Ory M, al. e: Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH Behavior Change Consortium. Health Psychology 2004, 23(5):443-451 • National Institute for Health and Care Excellence (NICE): Public Guidance 6: Behaviour change at population, community and individual levels. In.: London: National Institute for Health and Care Excellence; 2007.