1. Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas Presented by Julia Waldman, Senior Research Fellow, Department of Social Work Studies, University of Southampton and Maggie Shergill, Residential Social Worker, Behaviour Resource Service

2. Presentation Outline Context of service user participation About the BRS About the evaluation study A framework for understanding participation Participation in research and practice What inhibits participation Key messages Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

3. What is the Behaviour Resource Service? A Multi Agency approach to meeting the Health, Education and Social care needs of children and young people with complex needs The service is shared between :- Education Health Social Services An integrated service comprising two teams: – 4 bedded residential unit for 13 - 16 year olds – Community Team for children 5 - 18 years: –Psychiatry, clinical psychology, educational psychology, teaching, social work, occupational therapy, community support and nursing. –Managed together in one service Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

4. Who receives the service? Children and young people ages 5 - 18 years Extreme behaviour related to mental health /severe emotional difficulties Difficulties with education placement related to mental health/severe emotional problems Risk of self harm or harm to others Home or living circumstances vulnerable to breakdown Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

5. How is the Behaviour Resource Service different from other services? – Government Grant (Part) funded project for innovative mental health services for children – Three year project – Project fills a gap in previous provision – Set up as an additional service for a small group (approximately 50 per year) not as a substitute for existing service – Service addresses the needs of children with extreme complex needs Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

6. The evaluation has four aims :  to describe the organisation and operation of the BRS as it evolves over the three-year period  to identify and analyse outcomes for Service users (children, young people, kin and other carers) both in terms of behavioural and social changes and Service satisfaction levels  to examine the nature of inter-agency relationships and collaborative working arrangements established within the BRS  to understand the impact of the BRS on Services and agencies associated with children and young people presenting challenging behaviour Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

7. The BRS as a complex and diverse social experiment "Rather than treating such diversity as problematic, pluralistic evaluation acknowledges, even gives central place to, the varying perspectives proffered by different parties within a particular initiative” Fuller and Petch The pluralism of the Service required that these perspectives be gathered whilst the complexity indicates that outcomes need to be understood alongside process issues influencing progress. The evaluation team also had a commitment to the principles of partnership and participation that demanded a negotiating approach to the design of the study, the methods of data collection and presentation and use of findings (Guber & Lincoln). Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

8. Context of service user participation  Charterism  Consumerism  Children’s Rights-based  Lobbying  Legislative Framework for understanding levels of participation Community Care Support Force  veto  control  consultation  involvement  campaigning Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

9. Veto Referral process – young people and carers have to agree for planned placements - (emergency may not have this choice) choice to consent to participate – encouraging young people rather than parents signing on their behalf Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

10. Control Control within certain issues recognising constraints – eg. Utilising time Behaviour management wheel – Ways in which young people take control for themselves, challenging control of the unit Choices about interview/form – where to meet, to withdraw involvement, how to be consulted and how much to say Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

11. Consultation Through systemic work changes this happens in relation to individual needs but not at a wider organisational level Feedback at end of service stay SSI Inspections Consultation phase to help define outcomes and methods for obtaining further feedback Service satisfaction feedback at case closure Other research Feedback on design of forms Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

12. Involvement Information gathering process – views and perspective on situation, their difficulties and strengths – response can be tailored to be sensitive these self- concepts Application of partnership principles – with and alongside process Research group turned down suggestion to involve parents or carers – expert driven model Planned in line with phases of development – conference and website Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

13. Campaigning Service initially being an advocate and campaigning for the rights and needs of young people and their families eg. in professional networking trying to get other services to take responsibility and provide resources for these young people Citizen to self advocacy – staging process from involvement Dissemination of research & practice Awareness raising Working with campaigning bodies like Young Minds and MHF Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

14. What gets in the way of young people’s participation Expectations of professionals and parents/carers of the potential of young people Challenge is working with families and young people to encourage them to see the need to be active participants in their own change management - shift from a doing to towards a doing with approach (partnership) Expert models that some professionals and families feel comfortable with - inhibits seeing potential for valuing different kinds of contribution Cultural shift needed to see young people’s participation from a strategic perspective Individual focus means that there are limited opportunities for young people to form a collective voice to influence the service Circumstances and state of health may mean young people are not always able to make their own informed choices, over a sustained period of time Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas

15. Key Messages Once young people realise they have a voice that is heard and respected, followed up this has impacted significantly on relationships with families, schools and on their behaviour Participative approaches make sense, because they enable the development of autonomy, self-esteem and self- control in young people and a decrease in dependency. Confidence and self-esteem soar through rook and this impacts on other areas - for even the most stigmatised young people a ‘children first’ approach is possible and productive This may mean being opportunistic and creative in how participation happens It may mean small steps first, enabling control to develop in small but significant aspects of young people’s lives, building trust and confidence to make choices and decisions over bigger issues Adult workers need to be advocates for young people Need to value each element of their contribution to make a bigger whole A coordinated multi-agency approach has opened doors, professionals need to pull together and then barriers will break down that once seemed insurmountable Involving young people as mental health service users and their carers in service evaluation – a research team’s challenges and dilemmas