Esta tese toma como problema a "produção de cidadania e autonomia do usuário de saúde mental'·. Esta formulação. bastante recorrente mas pouco discut ida dentro do campo da saúde mental. é tomada como uma espécie de '·missão'· da reforma psiquiátrica. Cidadania e autonomia. nesta formulação apresentam-se como algo a ser produzido no "usuário". seja em se rviços de saúde. em espaços polít icos. em associações de saúde mental. Esta noção é estr nhada. primeiramente apartir do contraste estabelecido entre um movimento social estrangeiro o movimento bri técnico de sobreviventes e o usuá rio de saúde mental" dentro da reforma psiquiátrica. Colocando estas d uas realidades lado a lado. pro curamos evidenciar que. sob os ideais pouco d iscut idos de cidad a nia e a utonomia. encontram-se práticas que muitas vezes reforçam ae o silenciamento da experiência dos "usuários". As associações de saúde mental emergem no campo problemático como ent idades onde cidadania e a utonomia ocupam um lugar central. visto q ue acumulam dema ndas de inclusão social. defesa de direitos geração de renda e autonomização dos "usuários". A aposta metodológica na pesquisa-intervenção possibilitou que pmticipássemos diretamente da const it uição de uma associação de saúde mental. a Associação Construção. Explicitou-se então o caráter paradoxal da proposta de produzir cidada nia e a utonomia. visto que a sobrecarga de demandas e a fragilidade do contexto social em que se inserem as associações fazem com que elas se vejam facilmente a prisionadas em relações verticais. Algo que experimentamos no processo mesmo em meio a tentativas de imprimir horizontalidade às relações. de produzir autonomia e cidadania. A partir desta experiência inicial propusemos um novo dispositivo dentro da associação que pudesse modificar as relações de saber/poder entre usuários e profissionais. Os associados foram convidados a compartilhar a atividade de pesquisa. em um aprofundamento da dimensão participativa da pesquisa-intervenção. Nesta pesquisa. realizada ao longo de um ano um saber distinto se produz pa rt ir do agenciamento entre saberes. pert urba ndo ident idades. transversa lizando o colet ivo. A exper iência de pesquisar perm itiu reconfigurar o problema da tese. colocando a q uestão da a utonomia e da cidada nia de outra forma. Não mais lgo a ser produzido no usuário mas em uma perspectiva micropolítica na qual só se tornam possíveis como exercícios realizados entre os sujeitos envolvidos. em uma relação de a fetação mút ua e de invenção ou seja em associação. / This thesis takes as a problem the produ tion of itizenship and autonomy of the men- tal health servi e user . This formulation, quite re urrent but not very oftenly dis ussed within the eld of mental health, is taken as a kind of mission of the brazilian psy hi- atri reform. Citizenship and autonomy are interrogated and investigated to emerge as something to be produ ed from an external, instrumental a tion. The entral argument of the thesis is that what we all autonomy and itizenship are nothing more than exer ises, than relationships. We propose to think of itizenship and autonomy in a mi ropolit- i al perspe tive, in whi h they only be ome possible between the subje ts involved, in their asso iation, that is, in a relationship of mutual a e tation and invention. From the ontrast between the British survivor movement and the pla e of mental health servi e users within the psy hiatri reform, we try to show that under the ideals of itizenship and autonomy may be hidden pra ti es that reinfor e the tutoring and silen ing of the user experien e. Mental health asso iations in Brazil, usually omposed of users , pro- fessionals and family members, re eive demands for so ial in lusion, advo a y, in ome generation, and empowerment of the users , making them relevant pla es to resear h this problem. The methodologi al tool of intervention-resear h allowed the resear her to par- ti ipate in the onstitution of a mental health asso iation, alled Asso iação Construção. In this experien e, it be ame possible to re ognize diverse for es that ross the prob- lemati eld, explaining the paradoxi al hara ter of the aforementioned mission. The overload of demands and the fragility of the so ial ontext in whi h the asso iations are inserted make them easily trapped in verti al relations, something that was experien ed by the resear her, despite attempts to a hieve horizontality. From this initial experien e, the asso iates were invited to ondu t a parti ipatory resear h. Deepening the parti i- patory dimension of intervention- resear h was thought as a devi e, as something that ould modify the relationships that had been established within the group, in reasing its oe ient of transversality. From the parti ipatory resear h experien e, displa ements were produ ed that allowed to rethink the gures of itizenship and autonomy, from its mi ropoliti al dimension.

Papers one and two have been prepared for submission to the journal Psychology and Psychotherapy: Theory, Research and Practice. Paper one provided a review of studies investigating staff views about psychosocial aspects of recovery in psychosis. Fifteen studies met the criteria for the review. The first eight studies investigated staff views about recovery in psychosis more broadly. The remaining studies were grouped together according to similarities of recovery themes being investigated. Each study was summarised and critiqued with regards to their findings and limitations. Limitations to the review are also considered. The overall literature is evaluated and discussed with regards to clinical implications and suggestions for future research. Paper two investigated staff and service user views about mindfulness-based cognitive therapy groups for psychosis (MBCT). Q-methodology was used to explore participants’ beliefs about a range of views about MBCT for psychosis and to compare similarities and differences between views. Staff and service user data were analysed separately. Analysis resulted in a single consensus factor for staff views, and four factors for service user views about MBCT for psychosis. Overall, the staff sample strongly disagreed that mindfulness is harmful but were uncertain about its usefulness in the treatment of psychosis. The service user sample advocated the utility of mindfulness interventions for promoting wellbeing and reducing the symptomatic distress associated with psychosis. Paper three provides a critical reflection of the systematic review (paper one), and the empirical paper (paper two). An appraisal of the research process as whole is provided, in addition to how findings from paper one and paper two relate to the wider context of theory, research and practice.

No / This paper will provide an overview of the specific issues related to involving service users and carers in work-based practice assessment of health and social care students. The outcomes of a shared workshop that involved service users and carers, practice assessors and students in the development of an interprofessional assessment tool, will be discussed. Key areas of concern, across all participants, were related to ethical, reliability and validity issues. These will be explored against the of current literature, and recommendations will be made for involving service users and carers in assessment of practice. The original work for this paper was part of the Assessment and Learning in Practice Settings (ALPS) Centre for Excellence in Teaching and Learning (CETL), which is working towards a framework of interprofessional assessment of common competences in the health and social care professions.

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.

Yes / Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. Objective To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. Design Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations. Setting and participants Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study. Results Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. Discussion and conclusions Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities. / National Institute for Health Research. Grant Number: PB-PG-1112-29064

Yes / The importance of involving members of the public in the development, implementation and dissemination of research is increasingly recognised. There have been calls to share examples of how this can be done, and this paper responds by reporting how professional and lay researchers collaborated on a research study about falls prevention among older patients in English acute hospitals. It focuses on how they worked together in ways that valued all contributions, as envisaged in the UK standards for public involvement for better health and social care research. The paper is itself an example of working together, having been written by a team of lay and professional researchers. It draws on empirical evidence from evaluations they carried out about the extent to which the study took patient and public perspectives into account, as well as reflective statements they produced as co-authors, which, in turn, contributed to the end-of-project evaluation. Lay contributors' deep involvement in the research had a positive effect on the project and the individuals involved, but there were also difficulties. Positive impacts included lay contributors focusing the project on areas that matter most to patients and their families, improving the quality and relevance of outcomes by contributing to data analysis, and feeling they were 'honouring' their personal experience of the subject of study. Negative impacts included the potential for lay people to feel overwhelmed by the challenges involved in achieving the societal or organisational changes necessary to address research issues, which can cause them to question their rationale for public involvement. The paper concludes with practical recommendations for working together effectively in research. These cover the need to discuss the potential emotional impacts of such work with lay candidates during recruitment and induction and to support lay people with these impacts throughout projects; finding ways to address power imbalances and practical challenges; and tips on facilitating processes within lay groups, especially relational processes like the development of mutual trust. / Funded by the National Institute for Health Research (NIHR) Health and Social Care Delivery Research (HSDR) Programme (Project Number NIHR129488).

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.

This thesis aimed to explore personal definitions and experiences of recovery from psychosis for service users (SUs) and general practitioners (GPs), as well as indentify factors which might promote or hinder recovery in a primary care context, and identify interventions which might be required to enhance the promotion of recovery in primary care. A review of existing literature pertaining to the concept of 'recovery' was undertaken, and differing conceptualisations of 'recovery' were analysed and synthesised through the use of a Critical Interpretive Synthesis. Semi-structured interviews were conducted with 24 GPs and 20 SUs. Two mixed focus groups were also carried out as follow-ups with 5 GPs and 5 SUs. The data was analysed using a modified grounded theory approach. Factors reported to promote recovery in primary care included: autonomy, choice, and empowerment for SUs in treatment decisions; signposting of peer-supported groups and services by GPs; enhancement of SUs' social support networks by GPs; advocacy and independent analysis provided by GPs; a whole-person approach to recovery (social and biomedical); less stigmatising environment of primary care; and families of SUs and GPs working together in collaboration, often having built up a trusting relationship over time through continuity of care. The following potential interventions for enhancing recovery in primary care were identified: SU-led training for GPs regarding psychosis knowledge and attitudes; raising GPs' awareness of local services and groups by encouraging service managers and group organisers to visit GP practices; establishing GP peer supervision forums; improving access to GPs with a Special Interest in Mental Health (GPwSIs); shifting a greater degree of responsibility for recovery from psychosis to primary care from secondary care; reinforcing amongst GPs an awareness of the important role which primary care can play in promoting recovery; facilitating continuity of care within large practices where feasible; and encouraging GPs to alert SUs to seriousness of potential side-effects of medication before and during treatment. The implications of the findings for policy, practice, and future research were discussed.