The Division of Dementia Studies at the University of Bradford has a 3-stage strategy to involve service users with dementia in practitioner education. This year¿s conference will be a perfect opportunity for us to show how the involvement of people with dementia in our Dementia Studies courses has moved from rhetoric to reality over the past three years. We now have people with dementia involved in the management, delivery and assessment of our degree programmes. A participatory video outreach project carried out in a day centre for people with dementia in 2009 produced a variety of audio-visual material including voice recordings, photographs, and film which people with dementia were directly involved in making, and which are now used as learning resources for students. In a parallel project, former carers contributed to a DVD that was developed as part of a dedicated training programme for Bupa care staff. Students on the MSc Dementia Studies (Training in Dementia Care) pathway are now also beginning to include people with dementia in the training they provide in order to complete their award. A further project to pilot methods of involving service users in long-term care, including those with severe dementia is to begin in March 2011, and early findings from this will also be presented. The presenters include an academic course lead, a MSc student, a researcher, a service user/campaigner, and current and former family carers. We will present using a variety of formats including small case studies, film, audio, photographs and service user narratives. We will also be open to questions and comments about the practical, ethical and educational challenges arising from this ongoing work.

no / Dementia has been a latecomer to the field of service user involvement. Although there are now beginning to be welcome signs of improvement in the inclusion of the service-user voice, at present those with milder cognitive impairment, those who are still living at home, and those who come from white, professional backgrounds are over-represented. The BSc/MSc Dementia Studies programmes at the University of Bradford recruit part-time students who are already employed in the field of dementia care. The majority of students work in long-term or intermediate care, with smaller sub-groups working in the community, in acute care and on general hospital wards. The client groups with dementia they encounter in these settings are diverse, and tend to have different needs and perspectives from those articulated by mainstream service user groups. For this reason we have been seeking to develop an inclusive approach to service user involvement in the degree programmes we run, in order to ensure that the whole range of experiences of dementia is covered. Over the last five years this has involved developing an outreach programme in order to involve people with dementia in the environments where they spend their time, rather than restricting service user involvement to on-site activities at the University. This presentation showcases one such project which involved members of the course team working with clients attending a resource centre for older people with dementia to develop a series of short film clips (Bay Tree Voices) which were then embedded into the course learning materials in order to model alternative approaches to communication. The presentation includes formal and informal evaluations of these film-based teaching resources from service users, students and care staff.

No / This paper presents the findings of the third stage of a research study, the overall aim of which was to evaluate the educational preparation for cancer and palliative care nursing for children and adolescents in England. The specific aim of this stage was to define the attributes of `threshold' and `higher level' practice in nursing in order to inform the outcomes of future educational programmes. The research design involved children, their parents and their nurses at two different stages in the study. The first stage was the construction of the research instruments, in this case video and audio recordings of episodes of care in which the children participated. The second stage was the review of the recordings by the children, their parents and other stakeholders involved in their care. Service users were also involved in the management of the project. The study findings suggested that although there was considerable agreement between service users and other stakeholders about the characteristics of adequate or threshold practice, for both cancer and palliative care, there was less agreement about what constituted higher level or expert practice — other than `more of the same but better'. The key areas of importance for future professional development courses were agreed as partnership working, clinical skills, multidisciplinary working and the personal attributes of the nurse.

This study was concerned with exploring the meaning birth relatives gave their experiences of counselling following the removal of their children from their care. An exploratory research question was formulated and addressed using a qualitative approach. The involvement of a service user as expert supervisor added an important element and certain validity to the design, analysis and findings. Interviews took place with five birth mothers who had received counselling from one birth relatives counselling service. Three master themes were constructed from the data: From feeling alone, judged and let down to feeling part of a special relationship; "The healing process"; and "My children are my world".

Yes / The mental health benefits of physical activity and exercise are well-documented and asylum seekers who may have poor mental health could benefit from undertaking recommended levels of physical activity or exercise. Digital mobile applications are increasingly seen as feasible to precipitate behaviour change and could be a means to encourage asylum seekers to increase their levels of physical activity and exercise. This paper reports on a study that aimed to assess the feasibility of asylum seekers using the digital animation as a tool to change behaviour and increase their physical activity and exercise levels. A feasibility study underpinned by the principles of the COM-B behaviour change model was undertaken in West Yorkshire, UK, in 2019. Thirty participants were purposively recruited and interviewed. Peer interpreters were used as necessary. Deductive thematic analysis was undertaken to analyse the data. Overall, participants were positive about the feasibility of asylum seekers using the application as a behaviour change intervention. All expressed the view that it was easy to follow and would motivate them to increase their physical activity levels. Participants identified facilitators to this as the simplicity of the key messages, the cultural neutrality of the graphics and the availability of the mobile application in different languages. Identified barriers related to the dialect and accents in the translations and the over-simplicity of the application. This study has identified that a targeted digital animation intervention could help asylum seekers change their behaviour and hence improve their health and well-being. In designing such interventions, however, researchers must strongly consider co-design from an early stage as this is an important way to ensure that the development of an intervention is fit for purpose for different groups. / University of Bradford Research Development Fund

This thesis explores the barriers to effective tenant involvement at an organisational level in housing associations by tracking, over a long period of time, the experience of tenants who get involved in the forums, panels and boards of housing associations. The focus of the research is the relationship between the tenants and the professional staff, in corporate environments where delivery of a user-focused service is purported to be the shared goal. The aim has been to explore with tenants and staff their experiences of trying to make tenant involvement work at a strategic level within the organisation. My research seeks (a) to unravel the methods used by the different actors to influence activities and outcomes, and (b) to examine their effects on the power balance in and between the groups of people in question. Clegg’s 1989 ‘Circuits of power’ theory is used to plot and analyse the processes involved in the transformation (or not) of power within the culture and practice of tenant involvement and the empowerment (or not) of the tenants who work with staff at the heart of these corporate cultures. In addition I use Somerville’s 1998 typology of empowerment to illustrate the potential for organisational change. I gather a wide range of material, using a detailed questionnaire, 17 case studies plus a further three of national level involvement initiatives, and an analysis of 112 Housing Corporation and Audit Commission inspection reports (from 2003 and 2008). To this I add my own experience as a participant observer in a range of settings over the period. This thesis is intended to shed some light on why the same barriers continue to exist and why so many involved tenants and their housing associations are still struggling to make involvement really make a difference at this level, despite a decade of intensive regulations and inspection of involvement activities.

Background: There is a great need for effective treatments for mental health problems. Randomised controlled trials are the gold standard for evaluating treatments, however recruitment into trials is challenging, highlighting a clear need for evidence-based recruitment strategies. This thesis aimed to systematically develop a recruitment intervention and evaluate its effectiveness for improving the recruitment of participants into mental health trials. Methods: A mixed-methods approach, adopting the Medical Research Council’s complex interventions framework: 1) a systematic review to identify the evidence base and describe the factors affecting recruitment into depression trials; 2) a qualitative study to understand patients’ decision-making process in declining to enrol in a depression trial; 3) development of a recruitment intervention, using Participatory Design methods; and 4) evaluation of the recruitment intervention, using a randomised controlled trial, embedded in an ongoing mental health trial (the EQUIP trial). The primary outcome was the proportion of participants enrolled in EQUIP. Results: From the systematic review, a conceptual framework of factors influencing the decision to participate was developed, which highlighted that the decision to enrol involves a judgement between risk and reward. Findings suggested that patient and public involvement in research (PPIR) might be advertised to potential participants to reduce such perceived risk. The qualitative study found positive views of trials. Interviewees’ decision making resembled a four-stage process; in each stage they either decided to decline or progressed to the next stage. In Stage 1, those with an established position of declining trials opted out – they are termed ‘prior decliners’. In Stage 2, those who opted out after judging themselves ineligible are termed ‘self-excluders’. In Stage 3, those who decided they did not need the trial therapy and opted out are termed ‘treatment decliners’. In Stage 4, those who opted out after judging that disadvantages outweighed advantages are termed ‘trial decliners’. While ‘prior decliners’ are unlikely to respond to trial recruitment initiatives, the factors leading others to decline are amenable to amelioration as they do not arise from a rejection of trials. We recruited a host mental health trial (EQUIP), and worked with key stakeholders, including mental health service users and carers, to develop an intervention using a leaflet to advertise the nature and function of the PPIR in EQUIP to potential trial participants. 34 community mental health teams were randomised and 8182 patients invited. For the primary outcome, 4% of patients in the PPIR group were enrolled versus 5.3% of the control group. The intervention was not effective for improving recruitment rates (adjusted OR= 0.75, 95% CI= 0.53 to 1.07, p=0.113). Conclusions: This thesis reports the largest ever trial to evaluate the impact of a recruitment intervention. It also reports the largest trial of a PPIR intervention and makes a contribution to the evidence base on trial recruitment as well as to that assessing the impact of PPIR. Two further embedded trials are underway to evaluate the effectiveness of different versions of the recruitment intervention in different trial contexts and patient populations. This will also allow the results to be pooled to generate a more precise estimate of effect; to evaluate the impact of the intervention on trial retention; and to explore patient experiences of receiving the intervention.