• Include me in: user involvement in research and evaluation

      Grayson, T.; Hung Tsang, Y.; Jolly, D.; Karban, Kate; Lomax, P.; Midgley, C.; O'Rouke, I.; Paley, C.; Sinson, J.; Willcock, K.; et al. (2013-01)
      Purpose: This paper discusses the experiences of a group of ten user and carer researchers from mental health and learning disability services who worked together in a research and evaluation project between 2009 and 2012. The research project aimed to identify changes that took place as over 300 people moved from hostel accommodation into independent tenancies in flats and bungalows. These moves were part of a three year project involving a partnership between a local authority and a housing association. Design / approach: The paper describes the process of involving user and carers in the research process, identifying the challenges and benefits of involving users and carers. The ways in which people were trained and supported to take part and stay involved are outlined, as well as how the group felt they learnt new skills and increased their confidence. Findings: User involvement in research can mean different things with different levels of involvement, from consultation through to user-controlled research. The collaborative study had a range of benefits for the lives of the co-researchers, as well as contributing to the development of a new independent living service. A number of factors contribute to the success of user involvement in research and these are listed. Originality / value: This paper adds the voices of the co-researchers to the literature and provides ‘lessons learned’ for other researchers in this area.
    • Towards support: evaluating a move to independent living.

      Karban, Kate; Paley, C.; Willcock, K. (2013-05)
      Purpose – The purpose of this paper is to present results from an evaluation of the experience of a move to independent living for people with mental health needs or a learning disability. The discussion focuses on the shift in organisational culture from providing care within a hostel setting to supporting people in their own tenancies. Design/methodology/approach – The evaluation was underpinned by a participatory action research design. A total of ten co‐researchers with experience of using services or as carers were recruited. Qualitative data was obtained from “before” and “after” interviews with residents, staff and relatives. Findings – Widespread satisfaction was expressed with people's new homes. Many residents were found to be increasingly independent. There was some evidence of concerns regarding the pace and process of change and the introduction of new practices to promote independence. Research limitations/implications – The timing of the evaluation limited the opportunity for comprehensive “before” and “after” data collection. The involvement of co‐researchers required considerable time and support although the experience of those involved was positive. Practical implications – Learning from this evaluation emphasises the importance of support and preparation for staff as well as residents, in moving from hostel to independent living. Social implications – This study highlights the advantages of a participatory design in evaluating a major change in service delivery. Originality/value – This paper raises important issues about organisational change. It contributes to wider debates regarding the implementation of personalisation and recovery‐focused agendas.
    • Who calls the tune? Participation and partnership in research

      Karban, Kate; Paley, C.; Willcock, K. (2011)
      This paper explores issues of partnership and participation in research and evaluation, drawing on the experiences of evaluating a move from hostel accommodation to independent supported living for people with mental health difficulties or learning disabilities. The service change project involved a partnership between a local authority and a housing association with over 300 people moving into their own tenancies in newly-built flats and bungalows. The accompanying evaluation was designed on a model of service user participation and action research and was specifically concerned to explore the impact of the changes on people’s actual or perceived social inclusion into local communities. Ten service user and carer researchers, some of whom were directly involved in the move from hostel to independent living, were recruited and worked with ‘professional’ researchers to examine both the process and the outcomes of the move. The work will be viewed through the insights offered by feminist, transformative and participatory approaches to research. The ‘positioning’ of the researcher in relation to boundaries and the construction of the ‘other’ will be considered, emphasising an approach grounded in reflexivity and an acknowledgement of the complex ethical issues involved. A key feature of this study has been the negotiation involved between a complex change project and a participatory evaluation design. Learning points from the work so far will also be considered in terms of their wider application in future evaluations of complex change projects that involve multiple stakeholders.