13:30-14:00 Co-producing the ENRICH study: using our lived experience

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Gary Shelton
5 years ago
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co-facilitates ENRICH LEAP Jacqueline Marks: Service User

1 One step beyond. 13:30-14:00 Co-producing the ENRICH study: using our lived experience Represented here by: Rhiannon Foster: Service User Researcher Sarah Gibson: Service User Researcher & co-facilitates ENRICH LEAP Jacqueline Marks: Service User Researcher & ENRICH Trial Manager Lecture Theatre, Sussex Education Centre, Mill View Hospital, Hove BN3 7HZ

2 What is ENRICH? Enhanced discharge from inpatient to community mental health care (ENRICH): a programme of applied research to manualise, pilot and trial a peer worker intervention.

3 What does this mean?! Big project A five year study We have been awarded funds by National Institute for Health Research (NIHR) Improve the experience of discharge and the first few months post-discharge for people leaving psychiatric units, by employing peer workers. What do we mean by peer workers? Peer workers are people who are employed to use their own experience of mental ill health to help other people experiencing similar mental ill health problems.

In trial speak. We are going to compare the experience of those who are allocated a peer worker with those who are not. In this case the peer worker and the job they do become the intervention.

4 In trial speak. We are going to compare the experience of those who are allocated a peer worker with those who are not. In this case the peer worker and the job they do become the intervention. Fair and well conducted? We wanted the crucial input from those who understand and know about peer support In this way call our work co-produced. Co-production is essentially where professionals and citizens share power to plan and deliver support services together, recognising that both partners have a vital contribution to make.

5 Contributors: Funder: Voluntary partners advising on the study: Other partners: Study sites: Voluntary partners delivering the project:

6 Co-production To ensure that the research is properly handled and that the information that finally filters through to the handbook depicts peer support, is of the best quality. Academic knowledge Lit. Review Experiential knowledge Grey Lit. Experiential knowledge - LEAP DESIGN Phase Funding HANDBOOK Production Comparison Phase Lived experience : coapplicants Mixed knowledge LAG s & NEP s Mixed knowledge Team expertise Mixed knowledge- SUR with BCT s

7 Co-producing Knowledge Multiple Perspectives on the team Types of researcher: Health services, Clinical trialist, statistician, Health economists, Service User Clinical or professional backgrounds: Psychologists, psychiatrists, nursing, NHS manager, peer worker Types of lived experience: Service user involvement in research, mental health problems and using services, working as a peer worker, developing services,

8 Behavioural Change Techniques (BCTs) BCTs are often used to aid quitting smoking, diet and exercise interventions. The component of an intervention that has been designed to change behaviour, such as social support. It should be observable and irreducible (behaviour change techniques are the smallest 'active' component of an intervention (NICE, 2015).

9 ENRICH BCTs: Using Michie et al s (2013) list of 93, we adapted for ENRICH. Keep: Goal setting: Aim to meet with another person twice per week to avoid isolation. Adapt: Shaping knowledge & instructing how to perform behaviours: Adapted to appropriate disclosure of PW s lived experience: Discuss that someone is not alone with their thoughts nor on their path back to an independent lifestyle (recovery is and can be possible). Not relevant: Punishment-based techniques, as they could induce feelings of guilt and would be likely to lower selfesteem, self-worth and confidence and so wouldn t be appropriate for ENRICH. Also inappropriate power imbalance between participant and peer worker. Missing: values, relationship building, trust, empathy etc.

10 The ENRICH LEAP Lived Experience Advisory Panel What kinds of Lived experience? Survivor Research/ User Involvement in Research Multiple perspective large scale research teams Peer support (giving and receiving) Peer-led/ NHS Inpatient and community, voluntary sector services Partnerships with NHS services Different backgrounds (ethnicity, gender, experiences of mental health problems and services)

11 The ENRICH LEAP Design - Role description and person spec Number of places, payment, time commitment Frequency of input to research process Forming the Team Recruitment process Running the meetings (prebriefs, notes, contact) Practical (travel, food, payment, support) Making sure everyone is heard Keeping track of the difference we make - impact

12 The future of Lived Experience in ENRICH Service User researchers on site at all 6 sites nationally. Participant recruitment, planning data collection tools, data collection, analysis and write up. Ethical issues in randomisation of RCT participants. Authenticity of peer support being delivered.

13 Why Co-produce ENRICH? What difference will it make? Authentic Peer support for discharge will be designed and offered across the country and we will be able to see & show what difference it makes to people s lives and to the peer workers who offer the support. The findings will be relevant to people looking at them and using them from all the different perspectives we have included in the study.

References http://www.mind.org.uk/information-support/yourstories/co-production-in-mental-health-why-everybodywins/#.vhu7agefnaq Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J.

14 References Michie, S., Richardson, M., Johnston, M., Abraham, C., Francis, J., Hardeman, W., Eccles, M., Cane, J. & Wood, C.E. (2013). The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Annals of Behavioral Medicine, 46 (1), NICE (2015). National Institute for Health and Care Excellence: behaviour-change-techniques-2 retrieved 01/10/15.

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