Background: Diabetes is a chronic disease affecting more and more people and placing increasing demands on health care. The increasing numbers of adults diagnosed with type 2 diabetes are in need of self-management strategies. Learning self-management includes mastering the skills required to complete the complex emotional and physical tasks necessary to manage well-being and to prevent future complications. A technological service developed with the participation of stakeholders may be an alternative way to meet rising needs for self-management. The involvement of various stakeholders enables cooperation, facilitates patient empowerment, and takes into consideration how adults with type 2 diabetes manage their everyday activities. Aim: The overall aim of the licentiate thesis is, by participatory research methods identify self-management support of a future ICT service to facilitate adults with type 2-diabetes. Methods: Two studies were conducted using participatory design (PD) with qualitative methods. Data were collected among recently diagnosed adults and those with longer experience of type 2 diabetes. The adults were recruited from a primary healthcare centre and from a diabetes hospital clinic in Sweden. Study I identified perceived challenges related to self-management among recently diagnosed adults and those with longer experience of type 2 diabetes by using multistage focus groups. Study II reported needs and wishes for an ICT self-management service to facilitate their everyday life and to deal with type 2 diabetes by using a future workshop. Results: Three main challenges were identified; understanding; developing skills and abilities; and mobilizing personal strengths. Both recently diagnosed adults and those with longer experience of diabetes described challenges in understanding the causes of fluctuating blood glucose and in developing and mobilizing skills for choosing healthful food and eating regularly. The recently diagnosed group were more challenged by learning to accept the diagnosis and becoming motivated to change habit while the experienced group were mainly challenged by issues about complications and medications. The adults with type 2 diabetes expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with the three suggestions; Trust in partnerships, Communication and Individualized information. Acceptance of the diagnosis was a prerequisite for managing diabetes successfully. Acceptance of the diagnosis also made the participants accept information, learn about their condition, and understand how to personally manage their everyday lives. Trust in partnership with caregivers and Communication facilitated that acceptance and understanding of the disease. Main findings: The adults with type 2 diabetes stated different needs for support during different phases of the disease. The expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with three other suggestions; Trust in partnerships, Communication, and Individualized information. The participants’ experience of the participatory methodology as a democratic process and their appreciation of mutual learning contributed to these results, which are consistent with the aims of person centred care. Conclusions: Adults with diabetes have different needs for support during different phases of the disease. From a person-centred perspective it would be desirable to meet individual needs for self-management on peoples’ own terms through a technological service that could reach and connect to a large number of people. Healthcare practitioners need to address the knowledge needs of patients with type 2 diabetes and support them in developing self-management skills. Consistent with person-centred care, practitioners should also encourage patients’ abilities to mobilize their own personal strengths to maintain self-management. / <p><strong>Forskningsfinansiärer:</strong></p><p>Kommunerna i Skåne Nordost</p><p>Högskolan Kristianstad</p>

Background: Diabetes is a chronic disease affecting more and more people and placing increasing demands on health care. The increasing numbers of adults diagnosed with type 2 diabetes are in need of self-management strategies. Learning self-management includes mastering the skills required to complete the complex emotional and physical tasks necessary to manage well-being and to prevent future complications. A technological service developed with the participation of stakeholders may be an alternative way to meet rising needs for self-management. The involvement of various stakeholders enables cooperation, facilitates patient empowerment, and takes into consideration how adults with type 2 diabetes manage their everyday activities. Aim: The overall aim of the licentiate thesis is, by participatory research methods identify self-management support of a future ICT service to facilitate adults with type 2-diabetes. Methods: Two studies were conducted using participatory design (PD) with qualitative methods. Data were collected among recently diagnosed adults and those with longer experience of type 2 diabetes. The adults were recruited from a primary healthcare centre and from a diabetes hospital clinic in Sweden. Study I identified perceived challenges related to self-management among recently diagnosed adults and those with longer experience of type 2 diabetes by using multistage focus groups. Study II reported needs and wishes for an ICT self-management service to facilitate their everyday life and to deal with type 2 diabetes by using a future workshop. Results: Three main challenges were identified; understanding; developing skills and abilities; and mobilizing personal strengths. Both recently diagnosed adults and those with longer experience of diabetes described challenges in understanding the causes of fluctuating blood glucose and in developing and mobilizing skills for choosing healthful food and eating regularly. The recently diagnosed group were more challenged by learning to accept the diagnosis and becoming motivated to change habit while the experienced group were mainly challenged by issues about complications and medications. The adults with type 2 diabetes expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with the three suggestions; Trust in partnerships, Communication and Individualized information. Acceptance of the diagnosis was a prerequisite for managing diabetes successfully. Acceptance of the diagnosis also made the participants accept information, learn about their condition, and understand how to personally manage their everyday lives. Trust in partnership with caregivers and Communication facilitated that acceptance and understanding of the disease. Main findings: The adults with type 2 diabetes stated different needs for support during different phases of the disease. The expressed needs and wishes for an ICT service all fell under the broad category of Acceptance of the diagnosis, with three other suggestions; Trust in partnerships, Communication, and Individualized information. The participants’ experience of the participatory methodology as a democratic process and their appreciation of mutual learning contributed to these results, which are consistent with the aims of person centred care. Conclusions: Adults with diabetes have different needs for support during different phases of the disease. From a person-centred perspective it would be desirable to meet individual needs for self-management on peoples’ own terms through a technological service that could reach and connect to a large number of people. Healthcare practitioners need to address the knowledge needs of patients with type 2 diabetes and support them in developing self-management skills. Consistent with person-centred care, practitioners should also encourage patients’ abilities to mobilize their own personal strengths to maintain self-management. / <p><strong>Forskningsfinansiärer: </strong>Kommunerna i Skåne Nordost, Högskolan Kristianstad och Region Skåne</p>

Detta arbete utgör en första del av ett forskningsprojekt vars intentioner är att synliggöra och öka kunskapen om SFI (svenska för invandrare) och SVA (svenska som andraspråk). Studien är kopplad till min egen arbetsplats. Intentionen med detta projekt är att beskriva och analysera både process och innehåll i en gemensam kunskapsutveckling i en forskningscirkel. Projektet fokuserar i första hand på kulturmöten, livsåskådning och livsfrågeperspektiv samt olika livssituationer. Dessa betraktas huvudsakligen utifrån de medverkande lärarnas perspektiv. Detta medför att invandrarelevernas uppfattning och upplevelser i berörda aspekter inte berörs direkt i detta projekt. Det är deltagarnas, lärarnas, livserfarenhet från hans/ hennes klassrum och möte med invandrarelever som står primärt i fokus. Det är också utifrån detta perspektiv som relevant tidigare forskning och litteratur belyses i detta arbete. Uppsatsens ansats och metod bygger på deltagarbaserad forskning/ aktionsforskning, forskningscirkeln och en livsberättelsemetod. I resultatet redovisas de innehållsliga resultaten likaväl som forskningscirkelns deltagares, både jag som forskare/ projektledare och lärarnas, engagemang och betydelse i forskningsprocessen. Slutligen följs arbetet upp av en diskussion och analys i ett diskussionskapitel. Här diskuteras också hur arbetet kan fortsätta.

In this thesis my aim is to analyse and discuss discourses of Swedish disability research, with focus on participation in research by disabled people. My research question is based on an observation that research overviews and evaluations repeatedly argue for the importance of participation of disabled people. This request has been recurrent and more or less intact in its form for over 20 years. My question is why this request has not been fulfilled or altered in its form. I base my theoretical framework and methodology on Critical Discourse Analysis, and the power of language in a constructed and reconstructed social reality, with a semi-structuralist approach as developed by the British sociolinguist Norman Fairclough. In focus is the discursive construction of research participation and participants. My result after a systemic-functional grammar analysis of governmental research reports and peer-reviewed articles published in English, in international academic journals, by researchers with affiliation to Swedish universities, is that participation is discussed in terms of disabled people primarily as the source of information rather than as actual actors in a research process. The discursive construction of disabled participants rests on identification and representation connected to being disabled / having an impairment. A discourse of knowledge validation is based on a division of roles, tasks and labour, in which researchers and participants are constructed in opposing subject positions. Participant influence is constructed in terms of subjectivity and personal interest, as opposed to the objective expertise of the researchers. Discourses are, however, found to be contested and inconsistent, both in terms of conceptual definitions of disability and disability research, and as manifested in actual use of language. The most fixed discourse seems to be that of requests for increased participation, and the attributing of personal experiences to participants, in contrast to attributing professional expertise to researchers.

Förekomsten av övervikt och fetma hos barn ökar i världen trots insatser. Studier visar att förebyggande interventioner för barn och unga har blygsam effekt. Deltagarbaserad forskning har visat sig vara ett sätt att hitta hållbara lösningar inom hälsointerventioner. Övergripande kunskap saknas dock om hur deltagandet för barn och vuxna kan tillämpas inom deltagarbaserade övervikt- och fetmainterventioner riktade till barn. Syftet med denna studie var att kartlägga deltagandet inom deltagarbaserad övervikt- och fetmaprevention riktad till barn. Hur tillämpas deltagande inom deltagarbaserad övervikt- och fetmaprevention? I vilken utsträckning deltar barnen?    En litteraturbaserad design användes enligt Arksey och O’Malley’s ramverk för scoping review, som innebär fem steg; identifiera forskningsfrågan, identifiera relevanta studier, val av studier, kartläggning av data samt samla in, summera och rapportera resultat. Studier till resultatet samlades in från databaserna Medline, Academic Search Elite, Cinahl och Scopus samt via manuella sökningar.  Inklusionkriterier var peer-reviewed, empiriska studier med fokus på interventioner mot förebyggande av övervikt/fetma för barn och unga (0–18 år) samt med en deltagande ansats med föräldrar, barn eller samhälle. Studier på annat språk än engelska eller svenska, som inte fokuserade på förebyggande interventioner mot övervikt/fetma för barn och som inte tydligt definierat studien som deltagarbaserad exkluderades. Sökningen resulterade initialt i 995 artiklar. Urvalsprocessen med vidare granskning resulterade slutligen i 34 studier som inkluderades i denna studie. Graden av delaktighet analyserades vidare med Shier’s Modell, som innebär 5 steg; 1. barn blir lyssnade på, 2. barn stöds i att uttrycka sina åsikter, 3. barns åsikter beaktas, 4. barn är involverade i beslutsprocessen, 5. barn delar makt och ansvar för att ta beslut”.    Resultatet visade att de flesta interventioner skedde i skolan. Både föräldrar, barn, lärare och samhället involverades i olika grad och inom olika metoder. Flera studier rapporterade dock deltagandet bristfälligt. I 12 studier exkluderades barn som deltagare. När barn deltog var det ofta äldre barn i tonåren. Vid analys av barns deltagande med Shier’s Modell var flest studier inom steg 4 (deltagande i beslut, n= 7) och steg 3(konsultation, n=7) följt av steg 5 (delat ansvar och makt, n=6). Framtida forskning bör fokusera på att mer utförligt beskriva den deltagande processen, involvera yngre barn samt undersöka hur barn upplever sitt deltagande, för att skapa ett meningsfullt deltagande. Prevention för övervikt och fetma kräver innovativa lösningar och fokus inom framtida studier bör vara på att öppna upp för deltagande genom en deltagande utgångspunkt, att skapa möjligheter genom tillräckliga resurser och passande metoder samt att inkludera deltagandet som en inbyggd policy genom arbetsprocessen. / The prevalence of overweigth and obesity in children is increasing in the world despite efforts. Studies show that preventive interventions for children and young people have a modest effect. Participatory research has proven to be a way to find sustainable solutions in health interventions. However, there is no comprehensive  knowledge on how participation for children and adults can be applied within participant-based obesity interventions targeting children.The purpose of this study was to map participation in participant-based obesity prevention targeting children. How is participation in participant-based obesity prevention applied? To what extent do the children participate?   A literature-based design was used according to Arksey and O’Malley’s scoping review framework, which involves five steps; identifying the research issue, identifying relevant studies, selecting studies, charting data, and collecting, summarizing and reporting results. Studies for the results were collected from the databases Medline, Academic Search Elite, Cinahl and Scopus as well as through manual searches. Inclusion criteria were peer-reviewed, empirical studies focusing on interventions to prevent obesity for children and adolescents (0–18 years) and with a participatory approach with parents, children or society. Studies in languages ​​other than English or Swedish, studies which did not focus on preventive interventions against obesity for children and studies that did not clearly define the study as participant-based, were excluded. The search initially resulted in 995 articles. The selection process with further examination finally resulted in 34 studies that are included in this study. The degree of participation was further analyzed with Shier's Model, which involves 5 steps; 1. children are listened to, 2. children are supported in expressing their opinions, 3. children's opinions are taken into account, 4. children are involved in the decision-making process, 5. children share power and responsibility in making decisions.    The result showed that most interventions took place in school. Both parents, children, teachers and society were involved to varying degrees and within different methods. Several studies reported the participation poorly. In 12 studies, children were excluded as participants. When children participated, they were often older, in their teens. When analyzing children´s participation with Shiers’s Model, most studies were in step 4 (participation in decisions, n=7) and step 3 (consultation, n= 7) followed by step 5 (shared responsibility and power, n=6).   Future research should focus on more fully describing the participatory process, involving younger children and examining how children experience their participation, in order to create meaningful participation. Prevention for obesity requires innovative solutions and the focus of future studies should be on opening up for participation through a participatory starting point, creating opportunities through adequate resources and appropriate methods, and including participation as an embedded policy through the work process.