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

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. Final outcomes of OT Subjective outcomes: Intrapersonal 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
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

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 Themes:
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.
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)
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 March 2014.

17. A large collaborative study involving OTs at every level
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, Anju Keetharuth, 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,
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?
However, there were questions that we needed to consider before we could promote the introduction of this programme in the UK; for example
Would community living older people living in the UK want the programme and how would we recruit them?
Would occupational therapists want to be involved?
Could the programme be delivered by other staff under the supervision of occupational therapists?
What interventions would be appropriate for older people living in the UK?
How can we measure health gain in this population?

22. Outputs from the feasibility study
Results used to inform national guidance alongside well elderly study:
Intervention published

23. Lifestyle Matters Programme Ethos Programme Delivery
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’ai chi
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 Matters trial
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
Showed that on the whole fidelity to the intervention was good
Goal
Fidelity
Standardised training
Facilitator skill acquisition
Standardised delivery
Minimise drift in skills/ delivery
Participant observation of 2 day training, using content checklist
Monitoring of attendance and delivery numbers
Audit of records
Observation of a purposive sample of video recorded weekly sessions using a content checklist
Participant and facilitator semi-structured interviews

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):
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):
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):
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.