This thesis investigated the views, opinions and experiences of children, young people and parents of mental health services and Triple P parent training using qualitative methods. It is divided into four separate papers, the first three written as standalone journal papers. Paper 1 is a systematic review and synthesis of qualitative studies exploring children’s views and opinions of mental health services. The review used specific databases, a search of qualitative journals and a general Internet search to identify relevant studies. The paper utilized inclusion/exclusion criteria and a quality appraisal assessment. Fifteen studies meeting inclusion and quality criteria were identified exploring the experiences of 378 children and young people aged between 5 and 16 years, from a range of countries. The review then involved synthesising the findings of these studies to generate several overarching themes. Themes that emerged were; the stigma of mental health difficulties; alliance making and breaking properties; the physical location of services; consent and confidentiality; preferences for creative therapies and a recognition of therapeutic stages. Paper 2 is an original research study that explored the experiences of parents of Triple P parent training. Eight parents were interviewed using a semi-structured protocol. Data were analysed using Interpretative Phenomenological Analysis. Emergent themes were; a search for a cause; the stigma of parenting difficulties; the destruction and recreation of family life and a shift in perspective. Paper 3 explores the views and opinions of children whose parents have recently undertaken Triple P parent training. This qualitative study used ‘In My Shoes’, a computer assisted interview tool, to explore the experiences of eleven children from England aged between five and sixteen years. Children’s data were analysed using Thematic Analysis. Children’s themes were; a search for a cause; changes in life brought about by Triple P and wider difficult life circumstances. Parents and children’s narratives broadly agreed though children talked about being smacked before Triple P and parents did not comment about chastisement. The final section of the thesis was a critical appraisal of the literature review, research study and research process as a whole, including methodological reflections, implications for future research and clinical practice, and the researcher’s personal reflections in undertaking the research.

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 s 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 / 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.

Yes / Service user involvement is embedded in the United Kingdom's National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. To explore the personal impact of involvement on the lives of service users affected by cancer. DESIGN: We conducted eight focus groups with user groups supplemented by nine face-to-face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. SETTING AND PARTICIPANTS: Sixty-four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. RESULTS: We identified three main themes: (i) 'Expectations and motivations for involvement'- the desire to improve services and the need for user groups to have a clear purpose, (ii) 'Positive aspects of involvement'- support provided by user groups and assistance to live well with cancer and (iii) 'Challenging aspects of involvement'- insensitivities and undervaluing of involvement by staff. CONCLUSIONS: This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers' activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.

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.

No description available.

Detta är en kvalitativ studie med syfte att få en djupare förståelse av klienters delaktighet i samverkansmöten. Fyra klienter från Socialtjänsten har intervjuats i en semistrukturerad intervju. Det har sedan gjorts en innehållsanalys på empirin. Studien visar att ett samverkansmöte är uppbyggt av sociala processer som antingen kan skapa delaktighet för klienten eller försvåra för densamma. Studien påvisar även att det finns maktskillnader i samverkansmöten och att dessa måste synliggöras kontinuerligt för att kunna skapa en mer jämlik diskussion. Det har också framkommit att det finns faktorer på individ- grupp- och strukturellnivå som försvårar eller främjar klientdelaktighet. / This is a qualitative study aimed to gain a deeper understanding of a client´s participation in collaboration meetings. Four clients that get interventions from the Social services have been interviewed with a semi-structured interview. After the intake of empirical data it has been made a content analysis. The research shows that a collaboration meeting is built out of social processes that can either create participation of the client or obstruct it. The study also shows that there are power differences in collaboration meetings and that these must be made visible continuously in order to create a more equal discussion. It has also emerged that there are factors at an individual, group and structural level which hinders or promotes client participation.

This thesis addresses the relationship between citizens and the welfare state with a focus on the collaboration between service users and professionals in Swedish health and social care services. The overall aim of the thesis was to explore how professionals and service users experience collaboration in health and social care. Descriptive and interpretative study designs were employed in the four studies that comprise this thesis. A total of 87 persons participated in the four studies, including 22 service users and 65 front-line professionals. The research methods included focused group interviews, individual interviews and interactive participant reflection dialogues. The first study describes the discursive patterns in the front-line professionals’ constructions of ‘we the team’ which positions the service user as both a member and a non-member of the interprofessional team. The second study surfaces the difficulties of interprofessional teamwork as perceived by professionals. The third and the fourth studies explore how service users and professionals construct and perceive the concept of service user participation. The findings show that collaboration in terms of service user participation cannot only be understood as contract relationships between consumers and service providers. Service users and professionals perceive that there are several other ways to act as a citizen and for people to exercise human agency in relation to the welfare state. This thesis shows that the various conceptions of service user participation in interprofessional practice encompass dimensions that include themes of togetherness, understanding and interaction within the clinical microsystem. The findings of the four studies are discussed and used to create models that aim to conceptualise collaboration. These models can contribute to learning and improvement processes which facilitate the development of innovative service user-centered clinical microsystems in health and social care.

L'énigme de cette recherche peut se formuler ainsi: "Peut-on considérer que les personnes en souffrance psychique sont des personnes à part entière, et non des personnes à part?" Cette question part du constat de la disqualification sociale des "fous" et aboutit à la reconnaissance de leur prise de parole. Faire le constat de la disqualification nécessitait qu'on la définisse, que l'on s'assure de son existence à l'égard des fous et que l'on comprenne le processus d'un triple point de vue existentialiste, critique et psychanalytique. Il nous est apparu, dans un deuxième temps que la médicalisation n'était pas une réponse suffisante à la disqualification. La spécificité du concept de maladie mentale repose sur la (con)fusion de deux idées: l'interaction du corps et de l'esprit et l'analogie de la souffrance somatique et de la souffrance psychique. Les théories kraepeliniennes sont à la base de la psychiatrie postmoderne, pourtant il y des possibilités d'une prise en compte non médicale de la souffrance psychique. Les "alternatives" du XXème siècle (antipsychiatries, psychothérapie institutionnelle, Deleuze et Guattari, Foucault) ne nous paraissent pas encore suffisantes. Bien qu'elles reconnaissent dans la personne en souffrance psychique un sujet, elles restent à l'intérieur d'une pensée psychiatrique, à l'exception de Foucault qui s'appuie sur la question essentiel des rapports de pouvoir, mais en évoquant, non la parole des intéressés, mais une supposée "vérité de la folie". Pour prendre en compte les "disability studies" en santé mentale, il faut définir les concepts sur lesquels elles s'appuient: la souffrance psychique, la notion d'usager en santé mentale, la situation de handicap, l'empowerment, la notion de personne. Reconnaître la personne en souffrance psychique comme citoyen à part entière, ce n'est pas nier la spécificité de sa situation. C'est comme acteur social qu'elle demande à être entendu et c'est dans ce geste même qu'elle se réapproprie, dans l'action partagée, le sentiment d'exister. / The enigma behind this research topic can be summed up in the following question:"Is it possible to consider persons who suffer from mental health problems as equals with us living on the 'inside' of society with full rights and freedoms or - are they really people who are on the 'outside' with lesser rights and freedoms?" This question will be dealt with from the starting point that "mad" persons have been disqualified socially and conclude with the fact that their voice must now be heard today. Understanding their disqualification requires defining what that means, proving how this happens to people with mental health problems considered "crazy" and analyzing a three-fold point of view - existentialist, critical and psychoanalytical.This initial study demonstrates that the medical model does not appear to provide an adequate response to this situation of social disqualification. The specific features of the actual concept of "mental illness" are based on a (con)fusion between two ideas: the interaction between the body and the mind, and the analogy made between physical and mental suffering. Kraepelinian theories are still used as a basis for post-modern psychiatry, whereas it remains possible to take into account mental suffering and anguish from a non-medical standpoint. The "alternatives" found throughout the 20th Century (ranging from the anti-psychiatry movement to institutional psychotherapy, Deleuze and Guattari, as well as Foucault) have not gone far enough. Although they recognize the person with a mental health problem as a "subject" rather than an "object", they remain based on psychiatric theory with the exception of Foucault who looks into the fundamental question of the balance of power, yet who does not rely on the voice of the persons concerned, but rather a supposed "truth about madness". Mental health disability studies also need to be taken into account in order to define the concepts on which they are based: living with a mental health problem, what it means to be a "service user" or a person with a psychiatric disability, the theory of empowerment and fully taking into account each individual for what they are. Recognizing that persons with mental health problems are full-fledged citizens does not mean denying the specific nature of their personal situation. They demand to be heard as members of society and by doing so, they take ownership of their right to exist alongside others who must lend their support.

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.