The purpose of this study was to explore the lived experiences of older caregivers of adult AIDS ill children in Umlazi Township in the province of Kwa- Zulu Natal. A qualitative research design which was exploratory was executed with a sample of purposively selected participants who are the members of the organization that provides support to the older caregivers. Data saturation occurred after focus group and in depth individual interview with ten participants. The findings revealed that older caregivers experience lot of challenges which ranges from emotional, physical, financial, psychological, social and time constraints when caring for their adult AIDS ill children .The study further revealed that older caregivers developed a wide range of coping strategies to face their challenging caregiving task and most of the older caregivers utilized positive coping strategies. Recommendations that are described focus on the inclusion and consultation of older caregivers in all decisions and programmes about them. / Appendix C (Interview guide) in English as well as in Zulu / Social Work / M.A. (Social Behaviour Studies in HIV/AIDS)

Certaines personnes peuvent être stigmatisées quand elles présentent un attribut relié à une identité sociale qui est dénigrée dans un contexte particulier. Il existe plusieurs stéréotypes au sujet des personnes qui ont une perte d'audition. Le grand public associe souvent la perte d'audition à des comportements indésirables, au vieillissement et à une capacité intellectuelle réduite. Ces stéréotypes affectent négativement la participation des personnes ayant une perte auditive à diverses activités. Malgré les impacts évidents et importants que la stigmatisation a sur la participation sociale des personnes ayant une perte auditive et leur propension à recourir aux services de réadaptation, on constate une pénurie relative de recherche sur le stigmate lié à la perte d'audition. Ces dernières années, les chercheurs en sciences sociales ont fait de grands pas pour conceptualiser le stigmate selon la perspective des personnes qui sont la cible des attitudes nuisibles. La plupart de ces concepts peuvent s'appliquer au stigmate social lié à la perte d'audition. Le premier article de cette thèse tente de placer le stigmate lié à la perte d'audition dans un modèle de menace à l’identité induite par le stigmate (stigma-induced identity threat model). Ce chapitre explore comment les services pourraient être modifiés pour mieux soutenir les individus qui montrent des signes que leur identité personnelle est compromise à cause de leur perte d'audition. De façon générale, les buts de ce manuscrit sont a) de dresser un bref résumé de la question du stigmate lié à la perte d'audition ; b) de présenter un modèle spécifique de menace d'identité induite par le stigmate et d’incorporer des notions propres au stigmate lié à la perte d'audition à cette conceptualisation générale du stigmate et c) de réfléchir sur la pertinence de ce modèle pour la réadaptation audiologique. L'intention de la deuxième étude est de mieux comprendre comment le stigmate affecte les comportements de recherche d’aide des adultes ayant une perte d'audition acquise. Dix personnes ayant une perte d'audition, et appartenant à des groupes de soutien par les pairs ont participé à des entrevues semi-structurées audio-enregistrées. Les transcriptions de ces entrevues ont été analysées au moyen d’analyses thématiques. Les analyses ont indiqué que les répondants montre une plus grande propension à chercher de l'aide à la suite d’étapes charnières, où l’équilibre entre le stress négatif et l'énergie positive était rompu : a) un moment où le stress était de loin supérieur à l'énergie positive (première étape charnière) et b) un moment où l'énergie positive était de loin supérieure au stress négatif (deuxième étape charnière). On propose une série de représentations graphiques qui dépeignent comment les influences positives et négatives présentes dans l'environnement social et physique du répondant influencent la recherche d'aide. Le but de la troisième étude est d'identifier les facteurs qui amènent des individus à cacher ou révéler leur perte d'audition dans leur lieu de travail. Des entrevues semi-structurées ont été menées en utilisant une technique d’élicitation par photographies pour susciter des informations liées à la révélation de la perte d'audition. Les thèmes dégagés des entrevues incluent : l'importance perçue de la situation, la perception du sentiment de contrôle, l'affiliation à la communauté, le fardeau de communication et la présence de problèmes connexes à la perte d'audition. Les résultats de cette étude offrent un aperçu du monde caché des travailleurs ayant une perte d'audition. Cette étude sert à documenter certaines stratégies que les travailleurs avec une perte d'audition utilisent pour contrôler leur identité professionnelle et, plus spécifiquement, comment certains gèrent le dévoilement de leur perte d'audition dans leur lieu de travail. Les résultats fournissent des informations utiles pour le développement de programmes d'intervention appropriés pour des travailleurs ayant une perte d'audition. / Individuals are stigmatized when they possess, or are thought to possess, an attribute or characteristic that conveys a social identity that is devalued in a particular social context. There are several stereotypes, or commonly held (often erroneous) beliefs about people who have hearing loss. The general public often associate people with hearing loss to undesirable behaviours, ageing, and reduced intellect. Stereotypes such as these negatively impact upon activities of daily living engaged in by people with hearing loss. In spite of the obvious and important impacts that stigma has on social participation and inclination to use rehabilitative strategies, there has been a relative dearth of research on the stigma associated with hearing loss. In recent years, researchers in the social sciences have made great strides to conceptualize “stigma” from the perspective of people who are the target of prejudicial attitudes. Most of these concepts are applicable to the social stigma associated with hearing loss. The first study presented in this dissertation attempts to position hearing loss stigma within a model of stigma-induced identity threat. Overall, the goals of this paper are to a) offer a brief summary of hearing loss stigma; b) present a specific stigma identity threat model and incorporate ideas about hearing loss stigma into this general conceptualization of stigma; and c) reflect on the appropriateness of this model for the domain of rehabilitative audiology. The intent of the second study was to better understand how stigma impacted upon the help-seeking activities of adults with an acquired hearing loss. Ten people who had hearing loss, and were members of peer-support groups participated in audio-recorded semi-structured interviews. Thematic analyses of verbatim transcripts revealed that respondents experienced a heightened propensity to seek help following Critical Junctures, when negative stress and positive energy were out of balance: 1) a time when negative stress far outweighed positive energy (i.e., Critical Juncture One); and 2) a time when positive energy far outweighed negative stress (i.e., Critical juncture Two). A series of graphic representations are proposed that depict how positive and negative influences found in the respondent’s social and physical environment influenced help seeking. The purpose of the third study was to identify the factors that lead individuals to conceal or disclose their hearing loss in the workplace. We conducted semi-structured interviews using a photo-elicitation technique to aid in probing issues related to disclosure of hearing loss. Emergent themes included: Perceived importance of the situation, Perceived sense of control, Community affiliation, Burden of Communication and Coexisting issues related to hearing loss. This study serves to document some of the ways that workers with hearing loss manage their workplace identity, and more specifically, how some people manage revealing their hearing loss in workplace settings. The findings also inform the development of pertinent intervention programs for workers with hearing loss.

Submitted by Maicon Juliano Schmidt (maicons) on 2015-03-27T14:46:46Z No. of bitstreams: 1 Paulo Eduardo Duarte de Oliveira Junior.pdf: 957011 bytes, checksum: 3a2470b245c01a0d0f208a3a6b53011e (MD5) / Made available in DSpace on 2015-03-27T14:46:46Z (GMT). No. of bitstreams: 1 Paulo Eduardo Duarte de Oliveira Junior.pdf: 957011 bytes, checksum: 3a2470b245c01a0d0f208a3a6b53011e (MD5) Previous issue date: 2012-01-31 / CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / O objetivo do presente trabalho é analisar a relação existente entre mídia, processo penal e controle social. Isso para saber a razão que fundamenta a exploração da notícia sobre o crime e sobre o investigado, pelos meios de comunicação de massa, bem como os reflexos deste trabalho da imprensa no resultado do processo, na sociedade, na pessoa do investigado e na política criminal. O método escolhido para o desenvolvimento do estudo foi o fenomenológico-hermenêutico e o seu resultado foi verificação de que a mídia explora a notícia sobre o crime com o único objetivo de atrair consumidores para os produtos de seus anunciantes. Contudo, desta conduta resulta a violação de muitos direitos de quem faz parte do processo penal, uma vez que a mídia mitiga a presunção de inocência e os direitos e garantias individuais do acusado. Isso porque promove julgamentos antecipados, que resultam na estigmatização de determinados cidadãos e na seletividade operada pelo próprio Estado, através de uma legislação simbólica, desenvolvendo o que se denomina de processo penal do inimigo. Por fim, a única saída para minimizar os reflexos da atuação midiática no processo é a veiculação da notícia sempre com esteio na presunção de inocência, ampla divulgação das sentenças absolutórias e condenações para as hipóteses de ilícitos causados pelo abuso do direito de informar. / The objective of this study is to analyze the relationship between media, criminal and social control. That to know the reason underlying the exploitation of the crime and the investigation by means of mass communication as well as the reflections of this work of the press in the process output, in society, in the person of the investigation and criminal policy. The method chosen for the development of the study was the phenomenological-hermeneutic. And the result was the finding that the media operates on news of the crime with the sole purpose of attracting consumers to the products of their advertisers. However, this behavior results in the violation of many rights who is part of the criminal proceedings, since the media mitigates the presumption of innocence and the rights and individual guarantees of the accused. This is because it promotes early trials, which result in the stigmatization of certain citizens and selectivity operated by the state itself, through a symbolic legislation, developing what is called the prosecution of the enemy. Finally, the only way to minimize reflections of the media work in process is the placement of news always stay with the presumption of innocence, full disclosure of convictions and acquittals sentences for cases of illicit caused by abuse of the right to inform.

Despite the ongoing investments in programs to increase sexual health awareness among young adults globally, many youths remain vulnerable to sexually transmitted diseases (STDs). Two-thirds of all STDs occur among youths engaging in high-risk sexual behaviors, which put young adults at higher risk of STDs and can result in serious consequences including infertility. Additionally, the social consequences of STD affect families and communities. While a need exists for increased public awareness of STDs among young adults, extant intervention and prevention activities should be informed by a cultural perspective, including the integration of community and government roles. The purpose of this social ecological study was to investigate the perceptions of STDs and the potential factors responsible for the increased frequency of STDs based on the lived experiences of 20 young adults with STDs in Akwa Ibom State, Nigeria. Through a qualitative approach using a phenomenological research design, this study employed semi-structured interviews, and the resultant data were analyzed and coded. The findings indicated that college-aged students increasingly engaged in sexually risky behavior with multiple sexual partners for financial gain and power. Additionally, while institutions promoted abstinence as an effective strategy to reduce STD infections, the findings indicated a strong relationship between the phenomenon and individual interconnectedness with the larger society. Because the sexual behavior of young adults in Akwa Ibom State, Nigeria, is influenced at multiple ecological levels, effective and sustaining culturally appropriate STD interventions must involve the larger society including young adults in all stages of intervention development and implementation.

Sammanfattning Sedan början av 2000-talet har det skett en markant ökning av studier gällande barn och ungdomar och Autism. Dock är det så att den mesta forskningen fortfarande är inom det medicinska området. Endast ett fåtal av studierna rör vuxna med Asperger syndrom (AS) som studerar på högskola/universitet. Samtidigt sker en ökning av personer med AS som söker högre utbildning såsom högskola/universitet, vilket gör forskning gällande personer med diagnosen AS högaktuell. Antalet studenter med kognitiva funktionshinder, dit AS räknas, som sökt pedagogiskt stöd på högskola/universitet i Sverige, har ökat från 1 427 studenter 2010 till 1 943 studenter 2012. När man studerar på högskola/universitet så finns det pedagogiska stöd att tillgå, och till vardagen finns Lagen om stöd och service till vissa funktionshindrade (LSS) och Socialtjänstlagen (SoL) som personer med AS har möjligheter att söka stöd genom.  Personer med AS kan ibland ha svårt att utnyttja stödsystem som kräver att man själv identifierar och uttalar sina behov av stöd. Denna avhandling fokuserar på personer med AS i högre utbildning och stöd. I doktorsavhandlingen ingår två studier: Studie I som är en fallstudie och Studie II, som är en enkätstudie. Bindningspunkten för studierna är studenter med AS som fått pedagogiskt stöd i sin utbildning vid högskola/universitet. Studie I Studie I består av en fallstudie (Merriam, 1994, 2009; Patton, 2002) som innefattade tre fall. Studien redovisas i artikel I och II, där artikel I bygger på studenternas berättelser och artikel II på anhörigas och samordnares berättelser. Insamlandet av data har byggt på berättelser genom samtal (Doecke, Brown, & Loughran, 2000; Hydén & Brockmeier, 2008; Johansson, 2005; Skott, 2004). Valet av berättelser som metod, innebär att man som forskare fokuserar på att få möjligheter att lära känna en annan person, få kunskap om denna persons erfarenheter, känslor och förväntningar. För att säkerhetsställa undersökningens validitet, användes triangulering mellan tre olika källor: intervjuer med studenter, anhöriga och samordnare. Urvalet av högskola/universitet gjordes med avsikten att inkludera högskolor/universitet från olika delar av Sverige, olika stora högskolor/universitet med olika studieinriktningar. Syfte med Studie I är att undersöka hur studenter med AS i högre utbildning beskriver och förstår sin livshistoria och sin studievardag, vilket redovisas i artikel I och i kappans resultat. Anhöriga är en central resurs för personer med AS. Därför undersöks i den andra artikeln hur anhöriga uppfattar sina barns eller syskons studier och det stöd de tidigare fått i skolan och på högskola/universitet. I artikeln redovisas även hur man upplever det pedagogiska stöd som högskola/universitet erbjuder. Samordnare för studenter med funktionshinder har en central roll i vilka pedagogiska stöd som beslutas att students ska få, därför är det också av vikt att undersöka hur samordnare beskriver den stödverksamhet som finns på högskola/universitet. Även detta redovisas i andra artikeln samt i kappans resultat. Vid insamling av data var fokus på studenternas berättelser om sin studievardag och hur de beskrev sina skolerfarenheter, från förskola fram till högskola/universitet samt hur de såg på sin framtid (Hydén & Brockmeier, 2008). Vid samtalen med anhöriga och samordnare använde forskaren sina yrkeserfarenheter som berör AS, diagnossättande, mediciner, lagar och forskning samt personliga erfarenheter. De anhöriga som intervjuades bestämdes av studenterna och bestod av en mamma, en pappa och en syster. Samordnarna bestod av de som arbetade på den högskola/universitet som studenten studerade på. Samtalsmanual har använts som stöd vid varje samtal. Totalt har tolv samtalsmanualer använts. Samtalens längd för studenterna varierade mellan 1 timma och 4 minuter till 4 timmar och 50 minuter. Samtalens längd varierade mellan 1 timma och 10 minuter till 3 timmar och 23 minuter för de anhöriga. Samtalens längd varierade mellan 1 timma och 13 minuter till 3 timmar och 40 minuter för samordnare. Varje samtal anpassades helt efter varje anhörigs och samordnares intresse av att vilja samtala.  De tre fallbeskrivningarna omfattade femton transkriberade samtal: tre vardera för varje student, en för vardera anhörig och en för vardera samordnare. Första steget i analysen var att forskaren läste igenom det transkriberade materialet kring varje student upprepade gånger så att en känsla för helheten uppstod. Vid tredje genomläsningen gjordes noteringar i form av nyckelord som beskrev innehållet. Därefter plockades de meningar ut som innehöll information som byggde på nyckelorden och var relevanta för frågeställningarna. Den omgivande texten togs med så att sammanhanget kvarstod, det bildade meningsbärande enheter. De meningsbärande enheterna i samtalstexterna kondenserades i syfte att korta ner texten men ändå behålla innehållet. De kodades därefter och grupperades i kategorier som återspeglade det centrala budskapet i samtalen i relation till studenterna. Samma process gjordes med de anhörigas och samordnarnas transkriberade material. I Studie I framkom det att studenter med AS ofta behöver stöd i sin studievardag, det vill säga både i studierna och i vardagslivet, för att klara sina studier. Personer med AS har en kognitiv funktionsnedsättning som kan ge svårigheter i deras studievardag, och de har ofta en nedsatt förmåga att beskriva sina svårigheter och kan därför inte alltid redogöra för vilka behov de har. När man söker stöd bygger ansökan på att man själv kan beskriva sina behov av stöd och framför allt välja bland de stöd som finns utifrån det behov och de svårigheter man har, det vill säga man ges en stor valfrihet. För studenter med AS kan detta bli till en stor svårighet då de ofta inte själva vet vilka stöd de har behov av och vad de olika stöden skulle innebära för de studiesvårigheter de har. Studenterna i studierna angav att när de fick stöd hade de svårt att förstå hur stödet skulle fungera och hur det skulle kunna förbättra deras studier, och att det pedagogiska stödet i stället blev till ytterligare ett hinder, som tog tid och fokus från studierna. Stödinsatsen med vidhängande valfrihet kan ses som ett uttryck för en ekvifinalitet: stödsystemet har designats för att ge olika funktionshindrade samma möjlighet, och utgångspunkten är att valfrihet är bra för alla. Många av studenterna har beskrivit att de känner sig socialt begränsade och har kommunikationssvårigheter och de upplever att de är stigmatiserade och känner sig alienerade. I analysen av studenternas beskrivning av sin livshistoria och studievardag framstod två teman, Kamp och Utanförskap. Anhöriga beskrev att kraven på fokusering, både på vardags- och studentaktiviteter, blev övermäktiga för deras barn eller syskon. De kunde se att deras barn eller syskon hade svårigheter med att planera inköp av exempelvis mat, att laga mat, att tvätta och sköta andra vardagsrutiner i hemmet. Samordnare för studenter med funktionshinder utryckte att även om de kunde se att studenter hade problem med vardagsrutiner i hemmet,  kunde de inte ge något stöd för detta. De hade också svårt att erbjuda stöd i vissa studietekniska frågor. Samordnarna beskrev att det är svårt att ställa frågor om en students funktionshinder, diagnos och livssituation och att det är svårt att få grepp om vilket stöd som skulle kunna bli bra för varje enskild student. Sammantaget så har det framkommit att studenter med AS har behov av både pedagogiskt stöd och stöd i vardagsrutiner och det framkom också i studierna att de olika stöden behöver samordnas så att studenter med AS erhåller stöd i hela studievardagen. Det framkom också att det finns behov av ett kunskaps- och kommunikationsverktyg för framför allt samordnare och studenter. Detta verktyg skulle kunna användas av samordnare och student så att en tydlig agenda upprättas och följs vid samtalen och beslut om vad eller vilka pedagogiska stöd som studenten skulle kunna få som stöd i studierna. Studie II Studie II består av en enkätstudie, bestående av 55 frågor med både öppna och slutna svarsalternativ, riktat till studenter med AS, studenter med rörelsehinder (RH) och studenter med hörselnedsättning (HN). Även i denna studie står studenter med AS i fokus, men med mer generell frågeställningar: Hur beskriver studenter med AS, RH och HN upplevda problem, erhållet stöd och upplevt stöd? Finns det skillnader och likheter mellan dessa tre grupper av studenter? Resultatet redovisas i artikel III samt kappans resultat. Syftet med studie II är också att undersöka vilka karaktäristika för studenter med AS som kan identifieras och bedömas som så viktiga att de med stöd av Internationella klassifikation för funktionstillstånd, funktionshinder och hälsa kan behöva ingå i ett code set. Resultatet redovisas i artikel IV samt i kappans resultat. Under arbetet med Studie I uppkom funderingar på om det fanns studentgrupper med andra funktionshinder som har samma erfarenheter som studenter med AS. Därför utökades urvalet till studenter RH och HN. Studie II var beskrivande med en mixed methods design. Den första delen hade en huvudsakligen kvantitativ ansats med data insamlade via en enkät. Till enkätstudien tillfrågades alla högskolor/universitet om de var intresserade att delta i undersökningen. Det var 14 samordnare på 12 högskolor/universitet som tackade ja till att medverka och de tillfrågade sedan de studenter som kunde vara aktuella att medverka i undersökningen. Respondenter blev 34 studenter som studerade vid 12 svenska högskolor/universitet, 16 studenter med AS, 11 med RH och 7 med HN. Eftersom endast 34 studenter kunde rekryteras betraktas detta som en pilotstudie. Den kan ge en första antydan om hur studievardagen upplevs av studenter med funktionshinder och om det finns någon skillnad mellan de tre undersökta grupperna av studenter när det gäller svårigheter och behov av stöd.  I den andra delen av studie II togs ett första steg till ett code set, en början till ett kommunikationsverktyg, det vill säga en samtalsmanual mellan samordnare och studenter, samt som information till anhöriga. Analysen hade en deduktiv, kvalitativ ansats. Data från flera olika källor, bland annat enkäterna, analyserades och jämfördes genom att innehållet länkades till ICF-koder. Avsikten var att identifiera preliminärt innehåll i ett code set.   Analysen av enkäterna var kvantitativ så långt materialet medgav det, och grupperna jämfördes genom så kallad korstabulering. Nästa steg i analysen (Code set förberedelsen) fokuserade endast på studenter med AS. Information i enkäten länkades kvalitativt deduktivt till ICF tillsammans med information från fem olika källor som representerar olika perspektiv: 1) Studenters egna beskrivningar, 2) Internationella diagnosklassifikationer, 3) Nationella policy-dokument för högre utbildning, 4) Hälso- och sjukvården, 5) Brukarorganisationen Autism och Aspergerförbundet. De fem olika källorna innefattade tio dokument som valts utifrån inklusionskriterierna målgruppen AS, åldersgruppen unga vuxna, undervisning/utbildnings-krav för högre utbildning, insatser/behov av stöd samt nationella/internationella källor med anknytning till målgruppen. Syftet var att integrera flera olika perspektiv på behov av stöd i studievardagen för studenter med AS. Därmed kunde en första lista med ICF-koder identifieras som underlag till ett code set för studenter med AS på högskola/universitet. I Studie II framkom det att även om studenter med AS verkade rapportera samma svårigheter, varierade förklaringarna som gavs till problemen mellan grupperna. När det gällde förklaringar verkade det för studenter med AS vara kopplat till kognitiva svårigheter medan det för studenter med rörelsehinder (RH) och hörselnedsättning (HN) var kopplat till fysiska svårigheter. På ytan kan de olika gruppernas svårigheter alltså se lika ut och de kommer då att erbjudas samma pedagogiska stöd från sin högskola/universitet. I enkätsvaren framhölls att det var väldigt viktigt för studenterna att kunna få ett arbete efter avslutade studier för att därmed få möjligheter att kunna försörja sig och leva ett vanligt liv som alla andra. Innan dess måste dock studierna genomföras och i den studievardag som beskrevs, talades det om kamp och utanförskap. Några av de erfarenheter som lyftes fram av alla grupperna studenter var, stress och koncentrationssvårigheter, trötthet, och social begränsning . I Studie II framkom alltså samma problem som i Studie I med att tydligt uttrycka svårigheter och behov. Det indikerar att det finns behov av ett kunskaps- och kommunikationsverktyg för samtal mellan samordnare och studenter. Ett ICF baserat code set för högre utbildning för studenter med AS skulle kunna vara ett sådant verktyg. Ett code set består av ett antal kategorier från ICF och beskriver de svårigheter som studenter med AS kan ha och som kan bilda en checklista att arbeta utifrån vid samtal, planering av stöd och information till annan personal. Det ska vara så tydligt att det kan ges till studenten i förväg så att studenten får möjligheter att förbereda sig på vad samtalet och mötet innebär. Avslutningsvis har det framkommit att om studenter med AS ska bli inkluderade i högre utbildning och om uteslutningsmekanismer såsom stigmatisering och alienation ska motverkas, krävs det troligen tydligt strukturerade individuella lösningar: Stödet ska ge en öppning mot en multifinalitet istället för den ekvifinalitet som idag råder vid erbjudande av stöd. Lösningar och stöd ska inte bara vara baserade på en diagnos, utan på en analys av varje students upplevda svårigheter sett ur perspektivet hela studievardagen. Först då kan stöden bli till de verkligt frigörande möjligheter som är avsikten. / Summary Since the beginning of the 21st century there has been a significantly increased number of studies on children and young adults with Autism Spectrum disorder (ASD). Most of this research falls within the domain of Medicine and only limited number of studies focusses on adults with Asperger Syndrome (AS) as students at university. Considering that there is an increase in numbers of individuals diagnosed with AS attending tertiary education researching this group of individuals is both timely and opportune. The number of students with cognitive disabilities, such as AS, seeking assistance to help their study efforts along at universities has increased in Sweden from 1427 students in 2010 to 1943 students in 2012. It should be noted that support in everyday student-life is guaranteed by legislation (that is, by Social Service Act (SoL) and  Support and Service for Persons with Certain Functional Impairments (LSS)) and that this same guarantee is valid also of studying at university. However, individuals with AS may at times have difficulty using available support, since they must identify their own needs and also communicate the nature of their need. This doctoral thesis is focusing on individuals with AS in need of such support in tertiary education. The thesis is comprised by two main studies: Study I, which is a case study, and Study II, which is a survey. Their common denominator is students with AS who have received legally guaranteed support as university students. study I The first study is a case study of three cases. This research is reported in the two first articles of the four articles comprising the entire thesis. The first article focusses on student narratives, whereas article two rather focusses on the accounts of next of kin as well as those of university coordinators I charge of assisting students in need. Data were collected through conversations.  The particular choice of method allows for the researcher to acquire more intimate knowledge of the participants learning of their experiences, feelings and expectations. To secure validity the data from students, next of kin and university coordinators was triangulated. Number and type of universities included in the study were sampled on the principle that there should be included universities from different parts of Sweden, of different sizes and with different academic profiles. The aim of Study I was to investigate how students with AS, as students in tertiary education, describe their life history and their everyday student-life. This particular focus is reported in the first article. Next of kin are central to individuals with AS. In the second article therefore, the perceptions of next of kind and how these understand their children’s or sibling’s university studies as well as the available support for them are accounted for. Also university coordinators in charge of study assistance at universities are of considerable importance. They decide the manner of support provided. It is therefore important to also describe how these outline and assess the existing support. This too is the focus of the second article. During data collection the focus was on students’ narratives of their everyday student-life at university as well as how they experienced their entire education experience from pre-school and to tertiary education. The views of their own future was also an issue that was addressed. The conversations with participants were facilitated by the researcher in terms of conveying previous research results on the nature of AS individuals’ experience of university education; of the researcher’s professional experiences of the situation and also of herself being next of kin to an individual with an AS diagnosis. As a means of helping conversations with next of kin and coordinators along the researcher used her own professional experience in relation to AS individuals, diagnosing, medication, legal framework, previous research and personal experience. Which next of kin to be interviewed - a mother, father and a sibling - was decided by the participating students themselves. For each university there is generally only one coordinator. These participated in the study. A conversation manual has been used as support for each data collecting conversation. In all, twelve such manuals have been used. The length of the conversations with participating students varied between 1 hour and 4 minutes to 4 hours and 50 minutes. Conversations with next of kind varied between 1 hour and 10 minutes to 3 hours and 23 minutes and for coordinators the duration varied between 1 hour and 10 minutes to 3 hours and 40 minutes. Every conversation was entirely adapted to each participating individual and their willingness to converse about the subject matter. The three cases were comprised of 15 transcribed conversations: three for each student, one for each next of kin, and also one for each university coordinator. As a first step in analysing the data the researcher read transcriptions multiple times to lay foundations for an understanding of entirety. During the third read notes were taken in the form of key words significant to content. Extraction of sentences containing these keywords followed. Key words were always significant in relation to the research questions. The surrounding text was taken too in order to preserve context. Together the keywords, the sentences and the surrounding contexts constituted meaningful units of text. These units, in every transcribed conversation, were condensed in order to shorten texts but still maintain the essence of its meaningful content. The condensed text units were coded and grouped in categories that reflected the essential and meaningful content of the conversations. Data culled from the next of kin and the coordinators were submitted to the same process of data analysis. Results showed that students with AS often do need assistance at university both in terms of studying as well as in their daily life off campus in order to manage an existence as students. Individuals with AS however have a cognitive disability that may challenge their efforts as students. In addition, they have difficulties describing their problems and often find it hard to define which needs for assistance they do have. When applying for assistance students are required to specify their special needs of support, and more importantly, also choose what kind of assistance they require. In other words, they are given a considerable freedom of choice. To students with AS this presents an obstacle. They often do not know what kind of assistance they require and what a certain kind of support would entail. Participating students reported that it was difficult for them to grasp how the support would actually function and how it would improve their studying. Instead, the possibility of acquiring support became yet another problem which made studying even more difficult for them. The availability of support with the accompanying freedom of choice as to the manner and content of the support may be seen as an expression of equifinality. That is, the support system has been designed to provide each disabled individual with equal opportunity of attaining support. The basic value underpinning the support system is that freedom of choice is valuable to each and every one. However, many students with AS have reported that they feel socially limited, alienated even stigmatised and that they communicate poorly. In analysing the narratives of students’ life histories as well as their everyday student-life as students two themes emerged: Struggle and Alienation. The next of kin described the demands of focus, both on and off campus, to be overwhelming for their children or siblings. They observed difficulties with planning ahead to shop for groceries, to do laundry, to cook or to do sundry domestic chores at home. University coordinators understood that students had such problems off campus but could not offer assistance relating to off-campus difficulties. However, they also found it difficult to offer these students assistance pertaining to certain aspects of student life. They found it tricky to pose questions regarding students’ disability, diagnosis and general life situation. It was thus a problem for them to acquire an understanding of what kind of assistance that would be suitable for each individual student. In all, the research clearly showed that students with AS are in need of both educational support and everyday student-life support and that these two aspects of assistance need to be coordinated. Results also suggested the need of a tool for knowledge and communication, especially for students and university coordinators. Such a tool would facilitate the communication and would serve as a basis in deciding what kind of remedial action that needs to be taken for the benefit of students with AS. Study II The second study was operationalized as a survey study employing a questionnaire consisting of 55 questions of which some were open-ended. This instrument was administered to students with Asperger Syndrome (AS), to students with mobility impairment (MD) and to students with impaired hearing (HD). Note that abbreviations relate to the Swedish nomenclature for these disabilities. This study also focussed on students with AS but addressed more general questions: How do students with AS, MD and HD describe problems, provided support and the experience of being given support? Are there similarities or differences between these three groups of students? This research is presented in the third article of the doctoral thesis. The aim of the second study was also to explore what characteristics of students with AS could be identified as particularly important in an effort to classify them as a code set with the framework of the International Classification of Functioning, Disability and Health (ICF). A code set consists of a number of categories derived from the ICF classification system. It describes the type and nature of difficulties that for example students with AS may experience, thus constituting a checklist from which to work when university coordinators and students discuss the nature and manner of support needed and then succinctly be able to convey such information to other relevant staff. Such a tool will need to be straight-forward and given to students prior to meeting the coordinators in order to help students prepare for the meeting being fully informed of its content and purpose. The result of this exploratory second study is presented in the fourth article.  As the study of AS student cases progressed there arose questions regarding other students with different kinds of disability also. Do they have the same or similar problems? For this reason a second study was launched and mobility impaired students (MD) and hearing impaired students (HD) were included also. This study was descriptive but operationalized as a mixed methods design. The first part of it consisted of a quantitatively based questionnaire. All Swedish universities and higher education institutions were invited to take part. Fourteen coordinators from 12 universities accepted. They in turn asked students to take part. In all, 34 students decided to participate. These were divided into the following categories: 16 (AS), 11 (MD) and 7 (HD). Due to the relatively low number of participants the study is best considered to be a pilot study. It could be suggestive in reference to how everyday student-life on campus might be experienced by students with different disabilities and whether there are differences between the three studied groups in need of support. In the second part of the second study a first step was taken towards creating a code set; the beginning of a communication tool serving as a conversation manual between coordinator and students. The analysis of the data was qualitative but deductive. Data from several sources, including the questionnaire, were analysed, compared and linked to ICF-codes in order to identify a tentative content of a potential code set. The data culled by the questionnaires was first cross-tabulated. The next phase of the analysis was the code set preparation, focussing only on students with AS. Analysed data were linked qualitatively and deductively to ICF together with information from five different sources: 1) Student narratives, 2) International diagnosis classifications, 3) National policy-documents of higher education, 4) National healthcare and 5) The Swedish Autism and Asperger Syndrome Association. In all, 10 documents were included on the basis of  the AS target group, age group young adults, education and education guidelines for higher education, remedial work, need of support as well as national and international sources relating to the target group. The aim was to integrate several perspectives of needs of support in reference to AS students and their everyday student-life on a university campus. Results of the second study showed that even though other groups also reported problems similar to those of the AS students their explanations varied. While the problems of AS students appeared linked to cognitive difficulties, the problems of mobility impaired students (MD) and hearing impaired students (HD) were linked to physical difficulties. The difficulties and each group would appear similar at first sight which in practical terms means that they also would be offered the same kind of support as students at university The analysis of the questionnaire suggested the importance of students acquiring a job after graduation, to be able to earn a living and lead a normal everyday student-life like most others. However, prior to such a possible future studies must be completed and participants’ experiences of being university students appeared not the best. They spoke of struggle and alienation. Some of the experiences common to all three groups were stress and concentration difficulties, fatigue and social limitations. Hence, the second study, just like the first study, clearly showed both problems and needs, which suggested the necessity of a knowledge and communication tool for coordinators and students. An ICF-based code set for students with AS in higher education could serve as such a tool. In conclusion, results also suggested that if students with AS are to be included in higher education, and exclusion mechanisms such as stigmatisation and alienation be overcome, then clearly structured solutions - individual to each student - are also needed. Offered support must conform to multifinality rather than to equifinality as is currently the case in Sweden. Individual support cannot be based entirely on a diagnosis but also on an analysis of each student’s experienced difficulties in their immediate university environment of studying. Then, possibly, the available and legally guaranteed support would become as empowering as it was intended to actually be.

Certaines personnes peuvent être stigmatisées quand elles présentent un attribut relié à une identité sociale qui est dénigrée dans un contexte particulier. Il existe plusieurs stéréotypes au sujet des personnes qui ont une perte d'audition. Le grand public associe souvent la perte d'audition à des comportements indésirables, au vieillissement et à une capacité intellectuelle réduite. Ces stéréotypes affectent négativement la participation des personnes ayant une perte auditive à diverses activités. Malgré les impacts évidents et importants que la stigmatisation a sur la participation sociale des personnes ayant une perte auditive et leur propension à recourir aux services de réadaptation, on constate une pénurie relative de recherche sur le stigmate lié à la perte d'audition. Ces dernières années, les chercheurs en sciences sociales ont fait de grands pas pour conceptualiser le stigmate selon la perspective des personnes qui sont la cible des attitudes nuisibles. La plupart de ces concepts peuvent s'appliquer au stigmate social lié à la perte d'audition. Le premier article de cette thèse tente de placer le stigmate lié à la perte d'audition dans un modèle de menace à l’identité induite par le stigmate (stigma-induced identity threat model). Ce chapitre explore comment les services pourraient être modifiés pour mieux soutenir les individus qui montrent des signes que leur identité personnelle est compromise à cause de leur perte d'audition. De façon générale, les buts de ce manuscrit sont a) de dresser un bref résumé de la question du stigmate lié à la perte d'audition ; b) de présenter un modèle spécifique de menace d'identité induite par le stigmate et d’incorporer des notions propres au stigmate lié à la perte d'audition à cette conceptualisation générale du stigmate et c) de réfléchir sur la pertinence de ce modèle pour la réadaptation audiologique. L'intention de la deuxième étude est de mieux comprendre comment le stigmate affecte les comportements de recherche d’aide des adultes ayant une perte d'audition acquise. Dix personnes ayant une perte d'audition, et appartenant à des groupes de soutien par les pairs ont participé à des entrevues semi-structurées audio-enregistrées. Les transcriptions de ces entrevues ont été analysées au moyen d’analyses thématiques. Les analyses ont indiqué que les répondants montre une plus grande propension à chercher de l'aide à la suite d’étapes charnières, où l’équilibre entre le stress négatif et l'énergie positive était rompu : a) un moment où le stress était de loin supérieur à l'énergie positive (première étape charnière) et b) un moment où l'énergie positive était de loin supérieure au stress négatif (deuxième étape charnière). On propose une série de représentations graphiques qui dépeignent comment les influences positives et négatives présentes dans l'environnement social et physique du répondant influencent la recherche d'aide. Le but de la troisième étude est d'identifier les facteurs qui amènent des individus à cacher ou révéler leur perte d'audition dans leur lieu de travail. Des entrevues semi-structurées ont été menées en utilisant une technique d’élicitation par photographies pour susciter des informations liées à la révélation de la perte d'audition. Les thèmes dégagés des entrevues incluent : l'importance perçue de la situation, la perception du sentiment de contrôle, l'affiliation à la communauté, le fardeau de communication et la présence de problèmes connexes à la perte d'audition. Les résultats de cette étude offrent un aperçu du monde caché des travailleurs ayant une perte d'audition. Cette étude sert à documenter certaines stratégies que les travailleurs avec une perte d'audition utilisent pour contrôler leur identité professionnelle et, plus spécifiquement, comment certains gèrent le dévoilement de leur perte d'audition dans leur lieu de travail. Les résultats fournissent des informations utiles pour le développement de programmes d'intervention appropriés pour des travailleurs ayant une perte d'audition. / Individuals are stigmatized when they possess, or are thought to possess, an attribute or characteristic that conveys a social identity that is devalued in a particular social context. There are several stereotypes, or commonly held (often erroneous) beliefs about people who have hearing loss. The general public often associate people with hearing loss to undesirable behaviours, ageing, and reduced intellect. Stereotypes such as these negatively impact upon activities of daily living engaged in by people with hearing loss. In spite of the obvious and important impacts that stigma has on social participation and inclination to use rehabilitative strategies, there has been a relative dearth of research on the stigma associated with hearing loss. In recent years, researchers in the social sciences have made great strides to conceptualize “stigma” from the perspective of people who are the target of prejudicial attitudes. Most of these concepts are applicable to the social stigma associated with hearing loss. The first study presented in this dissertation attempts to position hearing loss stigma within a model of stigma-induced identity threat. Overall, the goals of this paper are to a) offer a brief summary of hearing loss stigma; b) present a specific stigma identity threat model and incorporate ideas about hearing loss stigma into this general conceptualization of stigma; and c) reflect on the appropriateness of this model for the domain of rehabilitative audiology. The intent of the second study was to better understand how stigma impacted upon the help-seeking activities of adults with an acquired hearing loss. Ten people who had hearing loss, and were members of peer-support groups participated in audio-recorded semi-structured interviews. Thematic analyses of verbatim transcripts revealed that respondents experienced a heightened propensity to seek help following Critical Junctures, when negative stress and positive energy were out of balance: 1) a time when negative stress far outweighed positive energy (i.e., Critical Juncture One); and 2) a time when positive energy far outweighed negative stress (i.e., Critical juncture Two). A series of graphic representations are proposed that depict how positive and negative influences found in the respondent’s social and physical environment influenced help seeking. The purpose of the third study was to identify the factors that lead individuals to conceal or disclose their hearing loss in the workplace. We conducted semi-structured interviews using a photo-elicitation technique to aid in probing issues related to disclosure of hearing loss. Emergent themes included: Perceived importance of the situation, Perceived sense of control, Community affiliation, Burden of Communication and Coexisting issues related to hearing loss. This study serves to document some of the ways that workers with hearing loss manage their workplace identity, and more specifically, how some people manage revealing their hearing loss in workplace settings. The findings also inform the development of pertinent intervention programs for workers with hearing loss.

No description available.

People living with HIV/AIDS have the right to be employed as long as they are physically fit to do the work. The unfortunate situation now is that in many South African workplaces employees who disclose their HIV/AIDS status or who are suspected of living with the disease face backlashes from fellow employees and sometimes even from employers. No one should be discriminated against or be prevented from being employed or dismissed from employment purely on the basis of having HIV or AIDS. Any form of discrimination against employees living with HIV/AIDS constitutes a violation of their constitutional rights to among others human dignity, equality and fair labour practices. Discrimination may take the form of pre-employment HIV testing or a dismissal due to HIV positive status. This research looks at the protection given to employees living with HIV/AIDS in the South African workplaces and whether the protection is adequate or not. / Mercantile Law / LL. M.

The purpose of this study was to explore the lived experiences of older caregivers of adult AIDS ill children in Umlazi Township in the province of Kwa- Zulu Natal. A qualitative research design which was exploratory was executed with a sample of purposively selected participants who are the members of the organization that provides support to the older caregivers. Data saturation occurred after focus group and in depth individual interview with ten participants. The findings revealed that older caregivers experience lot of challenges which ranges from emotional, physical, financial, psychological, social and time constraints when caring for their adult AIDS ill children .The study further revealed that older caregivers developed a wide range of coping strategies to face their challenging caregiving task and most of the older caregivers utilized positive coping strategies. Recommendations that are described focus on the inclusion and consultation of older caregivers in all decisions and programmes about them. / Appendix C (Interview guide) in English as well as in Zulu / Social Work / M.A. (Social Behaviour Studies in HIV/AIDS)

Cette thèse a été réalisée dans le cadre d'une formation doctorale en bioéthique au département de médecine sociale et préventive à l'École de santé publique de l'Université de Montréal (ESPUM). Elle a été complétée grâce au soutien financier des Fonds de recherche du Québec - Santé (FRQS) et des Instituts de recherche en santé du Canada (IRSC). / L’épigénétique est un champ de recherche qui s’intéresse aux variations dans l'activité des gènes n’impliquant pas de modification de la séquence d'ADN et pouvant être transmises lors des divisions cellulaires. Les chercheurs dans ce domaine se penchent principalement sur le rôle de changements très précis dans la structure 3D de l’ADN, qui sont imposés par la méthylation de l’ADN et d'autres réactions biochimiques et qui ont pour effet de contraindre ou de faciliter la lecture des gènes en fonction du besoin des cellules. De nombreuses maladies ont été associées à une perturbation des mécanismes épigénétiques, comme les cancers, les maladies cardiovasculaires, les désordres hormonaux et métaboliques, les maladies inflammatoires chroniques et les troubles neuropsychologiques. Au cours des quinze dernières années, l’épigénétique a connu un essor fulgurant. Elle fut particulièrement propulsée par la recherche en épigénétique environnementale, une spécialité qui s’intéresse aux causes externes de l’altération des mécanismes épigénétiques. Cette branche de la recherche a récemment suscité une vive attention de la part des médias et des chercheurs en sciences sociales et humaines, parce qu’elle met en évidence, au niveau moléculaire, l’influence critique de l’environnement physico-chimique et psychosocial des personnes sur leur santé. Elle apporte ainsi un éclairage supplémentaire sur la relation étroite qui existe entre les inégalités sociales et les inégalités de santé. L’épigénétique environnementale pourrait donc nous encourager, non seulement à imaginer des technologies biomédicales capables de renverser les perturbations acquises, mais aussi à élaborer des stratégies de santé publique préventives, soucieuses des considérations de justice sociale qui affectent la santé des personnes et des populations. Dans cette thèse, nous proposons une exploration des implications éthiques, légales et sociales de l’épigénétique (EpigELS). Nous présentons d’abord une revue exhaustive des différentes observations, interprétations et spéculations exprimées dans la littérature en sciences sociales et humaines au sujet des conséquences épistémologiques et normatives de ce jeune champ de recherche. Nous procédons ensuite à une analyse en trois temps de l’application des connaissances. Une première approche, que nous appelons la perspective rhétorique, fait la promotion de l’épigénétique environnementale comme plaidoyer en faveur de politiques de santé préventives et de l’expansion de la bioéthique nord-américaine pour y inclure les préoccupations environnementales et les enjeux relatifs aux déterminants sociaux de la santé (article 1). Une seconde approche, que nous appelons la perspective dialectique, offre un regard critique sur l’attribution de responsabilités morales fondée sur les découvertes en épigénétique. Elle démontre toute la complexité de cette entreprise en faisant la lumière sur les incertitudes scientifiques et les contradictions internes apparentes de ce champ d’étude, spécialement autour des concepts de norme épigénétique et de plasticité épigénétique (article 2). Une troisième approche, que nous appelons la perspective réflexive, se penche sur l’influence potentielle du paysage biopolitique contemporain – molécularisation de la santé et biomédicalisation de la vie – sur l’application des connaissances. Dans ce ‘régime de vérité’ néolibéral, qui favorise les processus d’internalisation, d’isolement, de marchandisation et de technologisation, il est probable que l’application clinique des découvertes en épigénétique soit injustement privilégiée, par défaut, au détriment de leur application en politiques de santé préventives (article 3). Nous terminons par une ouverture sur l’avenir du domaine EpigELS et une brève discussion sur la nature en partie interprétative du processus de passage des connaissances à la pratique. / Epigenetics is a field of research focusing on variations in gene activity that do not involve changes in the DNA sequence and that can be transmitted during cell divisions. Researchers in this field are studying the role of very precise changes in the 3D structure of DNA, imposed by DNA methylation and other biochemical reactions, that impede or facilitate the reading of genes depending on the need of the cells. Many diseases are associated with a disruption of epigenetic mechanisms, such as cancers, cardiovascular diseases, hormonal and metabolic disorders, chronic inflammatory diseases and neuropsychological disorders. Over the past fifteen years, epigenetics has grown rapidly. It was particularly propelled by research in environmental epigenetics, which is interested in the external causes of the alteration of epigenetic mechanisms. This branch of research has recently attracted considerable attention from the media and researchers in social sciences and humanities because it highlights, at the molecular level, the critical influence of the physico-chemical and psycho-social environment on people’s health. It also sheds additional light on the close relationship between social inequalities and health inequalities. Thus, environmental epigenetics could encourage us not only to conceive biomedical technologies capable of reversing the acquired detrimental variations, but also to develop preventive public health strategies that take into account social justice considerations affecting the health of individuals and populations. In this thesis, we propose an exploration of the ethical, legal and social implications of epigenetics. We begin by presenting a comprehensive review of the various observations, interpretations and speculations expressed in the social sciences and humanities literature about the epistemological and normative consequences of this young field of research. We then proceed to a three-step analysis of knowledge translation. A first approach, that we call the rhetorical perspective, promotes environmental epigenetics as an advocacy tool for preventive health policies and the expansion of North American bioethics towards a view that includes environmental concerns and social determinants of health (Article 1). A second approach, that we call the dialectical perspective, offers a critical look at the assignment of moral responsibilities based on epigenetic discoveries. It demonstrates the complexity of this endeavor by shedding light on the scientific uncertainties and apparent internal contradictions of this field of study, especially with regards to the notions of epigenetic normality and epigenetic plasticity (Article 2). A third approach, that we call the reflexive perspective, examines the potential influence of the contemporary biopolitical landscape – molecularization of health and biomedicalization of life – on knowledge translation. In this neoliberal ‘regime of truth’, which favors the processes of internalization, isolation, commodification and technologization, it is likely that the clinical translation of epigenetics will be unduly privileged, by default, impeding its translation into important preventive health policies (Article 3). We conclude with a view towards the future of the field of EpigELS and a brief discussion on the partly interpretive nature of the knowledge-to-practice process.