Syftet med denna studie är att undersöka professionellas erfarenheter av att arbeta med sexualitet och sexuell hälsa med personer med intellektuella funktionsnedsättningar. I studien har fem yrkesverksamma personer på olika LSS-verksamheter i Malmö stad med olika yrkestitlar och bakgrund inom socialt arbete intervjuats. Eftersom studien ämnade att undersöka professionellas erfarenheter antog vi en kvalitativ ansats där vår datainsamling utgick från semistrukturerade intervjuer. Resultatet analyserades utifrån ett abduktivt förhållningssätt och vi alternerade därför mellan teori, tidigare forskningsläge och empiri. De centrala teoretiska begrepp som togs fram i relation till empirin var normer, avvikelse och stigmatisering. Vi fann även att vissa fenomen i vår empiri beskrev mer praktiska skeenden på arbetsplatserna. Dessa fenomen relaterade vi till teorier kring försvarsstrategier mot förändring och begreppet sunt förnuft. Resultatet visade en motstridighet till att arbeta aktivt med frågor som rör sexualitet och sexuell hälsa vilket hade en koppling till stigmatiserande normer om personer med intellektuella funktionsnedsättningars sexualitet. Andra anledningar till motstridigheten hade att göra med de yrkesverksammas egna erfarenheter av sexualitet och sexuell hälsa, då många uppgav att det var ett mycket privat ämne att tala om. Resultatet visade även på att en tillåtande arbetsgrupp och chef som prioriterade kontinuerlig samtalsträning i ämnet sexualitet och sexuell hälsa var framgångsrikt. Till skillnad från tidigare forskning visade våra resultat att yrkesverksamma i Malmö stad både hade tydliga riktlinjer och kunskap kring ämnet. Resultaten indikerar ett behov av att utbilda professionella kring hur man hanterar personer med intellektuella funktionsnedsättningars sexualitet och sexuella hälsa, inte bara i teorin utan också i praktiken inom socialt arbete. / The purpose of this study was to analyze the professionals experience of working with sexuality and sexual health with people with intellectual disabilities. LSS stands for “The Swedish Act concerning Support for Persons with Certain Functional Impairments''. In the study we interviewed five professionals at various LSS -workplaces in Malmö municipality, with different professional titles and backgrounds in social work. Since the study aimed to examine professionals' experience, we adopted a qualitative approach where our data collection was based on semi-structured interviews. The results were analyzed on the basis of an abductive approach and we therefore alternated between theory, previous studies and empirical data. The central theoretical concepts that were developed in relation to the empirical data were norms, abnormality and stigmatization. We also found that certain phenomena in our empirical data described more practical events in the workplace. We related these phenomena to theories about strategies of change and the concept of common sense. The results showed a reluctance to activly work with issues related to sexuality and sexual health, which was linked to stigmatizing norms about the sexuality of people with intellectual disabilities. Other reasons for the reluctance had to do with the professionals' own experiences of sexuality and sexual health, as many stated that it was a very private topic to talk about. The results also showed an example of an encouraging work group and manager who prioritized continuous conversational training in the subject of sexuality and sexual health, that was successful. Unlike previous studies, our results showed that professionals in the Malmö municipality had both clear guidelines and knowledge about the subject. Results indicate the need to train and educate professionals about handling people with intellectual disabilites’ sexuality and sexual health not just in theory but also in the everyday practice of social work.

Genom definitionen av sexualitet från Världshälsoorganisationen (WHO) tydliggörs sexualitetens centrala och grundläggande del av att vara människa. Rätten att oberoende av bland annat funktionsnedsättning själv bestämma över sin kropp och sexualitet står formulerad i de mänskliga rättigheterna, vilka förtydligas ytterligare i konventionen om rättigheter för personer med funktionsnedsättningar. För personer med intellektuella funktionsnedsättningar har omgivningen och framförallt yrkesverksammas attityder och föreställningar kring sexualitet visat sig påverka möjligheterna till dessa sexuella rättigheter. I detta tar denna studie sin utgångspunkt. Syftet för studien är att identifiera och belysa attityder och föreställningar kopplat till sexualitet, kön och intellektuella funktionsnedsättningar bland yrkesverksamma inom gruppbostäder enligt LSS. Vidare syftar studien också till att belysa yrkesverksammas syn på den egna rollen i relation till stödanvändares sexualitet. Genom semistrukturerade intervjuer, vilka kompletterades med vinjetter, har materialet till undersökningen samlats in och vidare analyserats. Resultatet tyder på överlag positiva och tillåtande attityder och föreställningar bland yrkesverksamma. Gällande kön uppvisades vissa skillnader bland de yrkesverksammas föreställningar, vilka främst berörde risker för sexuella övergrepp. Av resultatet framkom vidare en central upplevelse av ansvar. De yrkesverksamma uttryckte att det genom deras yrkesroll åligger dem ett ansvar att såväl stötta, främja, skydda och möjliggöra för stödanvändare att uttrycka och utveckla sin sexualitet. Vidare uttrycktes svårigheter att veta hur detta ansvar kan erbjudas i form av stöd och ett behov av vägledande riktlinjer som stöttar yrkesverksamma i situationer kring stödbehov kopplat till sexualitet blev tydligt. / From the definition of sexuality by the World Health Organization (WHO), sexuality stand as a central and fundamental part of being human. The right to independently, regardless of e.g. disabilities, decide over your own body and sexuality is written in the declaration of human rights, which is further clarified in the convention of the rights of people with disabilities. For individuals with intellectual disabilities, the surrounding community and foremost the professionals’ attitudes and perceptions about sexuality, has proven to influence the concession of these sexual rights. The aim of this study is to identify and elucidate attitudes and perceptions connected to sexuality, gender and intellectual disabilities among professionals working at group homes in accordance with LSS. Further, this study aims to illuminate the professionals’ view on their own role, relating to the user’s sexuality. Semi-structured interviews, supplemented with case-descriptions, formed the material which was then transcribed and further analysed. The results mainly indicates positive and allowing attitudes and perceptions among the professionals. Regarding gender, certain discrepancies among the professionals’ perceptions were shown, which mainly concerned the risks of sexual abuse. The personnel articulated that, embedded in their professional role, laid a responsibility to support, enable and protect the users’ opportunities to express and develop their sexuality. Further, difficulties knowing how this responsibility could be offered as support was expressed by the sample. A need for guidelines serving the professionals in situations connected to user-support and sexuality was identified as essential.

Research indicates a connection between successful outcomes for students with significant intellectual disabilities and the individual education program (IEP) team's efforts in the IEP development process. However, little research has been conducted on the perceptions of parents and teachers of students with significant disabilities about parent participation in the IEP development process. Therefore, the purpose of this phenomenological study was to explore parent and teacher perceptions of parent participation in the IEP development process. The conceptual framework of this study was ecological design theory, based on Bronfenbrenner's theory of human development and Neal and Neal's theory of networked systems. Participants consisted of 4 parents and 5 teachers of students with significant intellectual disabilities who have participated in the IEP development process. The interviews conducted with participants were analyzed for patterns and themes. Findings showed that teacher descriptions centered on actions connected with fulfillment of state guidelines, which create the setting in which the IEP development takes place. Parent participants acknowledged compliance to state guidelines based on teacher actions, but parent commentary was centered on elements of the parent-teacher relationship. Responses indicated that actions to strengthen the school-parent partnership may improve parent and teacher experiences of IEP development. This study contributes to positive social change by providing administrators and teachers information to better support the IEP development process toward improved outcomes for students with significant intellectual disabilities.

This study investigated a process for identifying the reasons why a person with an intellectual disability has problem behaviors. This process is called a trial-based functional analysis (TBFA). The researchers wanted to know if a person who was not an expert behavior analyst could be trained to perform the TBFA and if the results obtained from the TBFA could be used to create a program to reduce the problem behavior of a person with an intellectual disability living in a community-based group home for persons with disabilities. The results of this study show that a person who is not an expert behavior analyst can be trained to perform a TBFA and that the results obtained from the TBFA were useful in creating a program to reduce the problem behavior of an adult male person living in a rural area in Utah.

"September 2008" A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Occupational Therapy. Typescript Project Advisor : Elysa Roberts Occupational justice recognizes that all people have the right to occupational engagement because it is through occupational engagement that people experience well-being. Occupational injustice occurs when outside forces prevent people from engaging in occupation, require participation in activities that they find meaningless, or prevent people from making choices about their occupations. People with developmental disabilities in a day program are at risk for occupational injustice because they require environmental support in order to engage in occupation. This phenomenological study explored occupational engagement of adults with moderate to severe disabilities in a day program by examining what the staff members and consumers found meaningful within the program activities and capturing how the consumers exhibited occupational engagement. This study understood occupational engagement in terms of meaning, self-choice, and motivation leading to involvement in occupation. The methods involved phenomenological interviews with 10 staff members regarding satisfying and dissatisfying experiences working with the consumers, interviews with 10 consumers with moderate to severe developmental disabilities regarding the activity groups using visual supports to enable participation, and four observations of consumers in preferred and less preferred activity groups using the Volitional Questionnaire. Strategies were employed to ensure trustworthiness of the data and analysis including dense description, data triangulation, member checks, peer review, reflexive journaling, and the use of a structured observation tool with demonstrated reliability and validity. Thematic analysis demonstrated that staff members found meaning in the day program activities through Consumer Engagement in Program Activities and Reciprocal Interaction, and the consumers found meaning in the day program activities through Doing/Active Engagement and Respectful Interaction. The consumers demonstrated occupational engagement through the following themes: Doing Activity/Initiating Action, Positive Affect, and Focused Attention. The findings demonstrated the influence of a supportive environment, choice, and relationships between consumers and staff members that may be reflective of co-occupation on occupational engagement. This information is important in order to build the body of knowledge regarding occupational engagement in an infrequently studied population, understand the implications related to such persons' occupational justice, and include the perspectives of people with moderate to severe cognitive disabilities in the study of occupation.

Föräldrar till barn med intellektuella funktionsnedsättningar har genom historien haft en mer eller mindre betydande roll i sina barns liv. Unga med intellektuella funktionsnedsättningar har blivit tvångssteriliserade, omyndigförklarade och inlåsta på institutioner ofta utan att föräldern har kunnat säga något om saken. Samhället har haft stor makt och inflytande över dessa ”annorlunda” familjer. I dag ser både förälderns roll och ungdomens situation och samhällets makt annorlunda ut. Fördomarna om intellektuella funktionsnedsättningar är seglivade och påverkar än idag den situation föräldrarna har att uppfostra sina barn i. Denna studie har som syfte att undersöka hur föräldrar till ungdomar med intellektuella funktionsnedsättningar tänker kring sina ungdomars vuxenblivande och sexualitet. Vår studie baseras på kvalitativa datainsamlingsmetoder i form av fokusgrupper och enskilda intervjuer med föräldrar till ungdomar med intellektuella funktionsnedsättningar. Uppsatsens teoretiska ramverk baseras på fem sociologiska och psykologiska teorier och perspektiv: symbolisk interaktionism, sexuellt script, KASAM, mognadsprocessen och Eriksons utvecklingsteori. Studiens resultat visar att föräldrar till ungdomar med intellektuella funktionsnedsättningar är till viss del fokuserade på att dra sig undan och låta samhället ta över ansvaret. Samtidigt är de oroliga över de brister som de ser finns i samhällets insatser för unga vuxna med intellektuella funktionsnedsättningar. / Parents of children with intellectual disabilities have historically had a more or less significant role in their children's lives. Young people with intellectual disabilities have been victims of forced sterilization, made legally incompetent and locked up in institutions, often without their parents having been able to say something about it. The community has had great power and influence over these "different" families. Today the parent's role, situation of the youth and power of society is different. Prejudices about intellectual disabilities are long-standing and influence even today the situation of parents to raise their children in. This study aims to investigate how parents of adolescents with intellectual disabilities think about their youths process of becoming an adult and sexuality. Our study is based on qualitative data collection methods in the form of focus groups and individual interviews with parents of adolescents with intellectual disabilities. The thesis theoretical framework is based on five sociological and psychological theories and perspectives: symbolic interactionism, sexual scripts, SOC (Sense Of Coherence), maturation and Erikson's developmental theory. Our results demonstrate that parents of adolescents with intellectual disabilities are partly focused on pulling back and letting the community take over. Yet they are concerned about the shortcomings they see in society's efforts for young adults with intellectual disabilities.

One of the most prevalent human rights violations in the world is Violence Against Women and Girls. It is estimated that 1 in 3 women, which is equal to 736 million women, have been experiencing sexual and/or physical violence in her lifetime since the age of 15. Previous research states that women with intellectual disabilities are more vulnerable to Gender Based Violence (GBV) than other women in Tanzania. A minor field study was done in Tanzania with the ame to; finding how women with intellectual disabilities are more vulnerable than other women in Tanzania, understand how the society's support for abused women with disabilities can be improved in Tanzania and to find how stakeholders perceive that violence against women with intellectual disabilities can be prevented. The study has been carried out by holding key informant interviews with employees of NGOs, lawyers and teachers that work for these women's rights in different ways in Tanzania. To analyze the empirical material, the Human rights based approach has been made made into an analytical framework by identifying and defining the key concepts: capability, functionings and freedom and with the perspective of Leave no one behind. The findings show that poverty, cultural beliefs and beliefs in witchcraft, among other things contribute to the fact that women with intellectual disabilities are extra vulnerable in Tanzania. They are at great risk of being locked up, become victims of human trafficing, subjected to rape and murder.  Society should raise awareness that GBV is illegal and wrong to improve the situation of women with intellectual disabilities. The police and healthcare workers should be better trained to respond to women with special needs who have been subjected to violence or sexual violence. The government could also give these women support to be able to work on their own terms. Through work, the women get a better life and meaning, which reduces the risk that she will be exposed to GBV. To prevent violence against these women the government should offer availability to adapted and inclusive schools with trained staff who know the needs of disabled children. If these kids can go to school with others, people with disabilities will be normalized and the stigma will reduce. To conclude, women with intellectual disabilities are extra vulnerable in Tanzania and much can be done to improve their situation.

Many children with life-limiting health conditions in pediatric palliative care have cognitive impairments or intellectual disabilities (ID). They are confronted with their own death and need adapted psychosocial support. The assumption that children with ID might not understand death and dying can lead to limited support. Little is known about psychosocial support in pediatric palliative care around death, dying, and grief for this population. The study aimed to capture professionals' experiences in supporting children with ID in pediatric palliative care around topics of death, dying, and grief. Seven professionals who worked in pediatric palliative care in Germany were interviewed utilizing a qualitative research approach with semi-structured interviews. Inductive thematic analysis was used, and three major themes were identified: Communication about death and dying involves both verbal and non-verbal means, Child-centered interventions are employed to enhance the child's well-being, and Personal factors of involved individuals influence the support provision. The provided support was highly individualized to children's needs. Communication difficulties were identified as a challenge for professionals when providing psychosocial support for children with ID. Children's health condition and functioning, parents' beliefs, and professionals' attitudes towards ID and uncertainty about children's needs were identified as crucial factors influencing support provision for children with ID. The need for further research was highlighted.

Educators of students with moderate and severe intellectual disabilities face a significant challenge in preparing their students while in school to function, acquire, and maintain skills that would facilitate successful performance in the workforce while in supported and/or independent employment after graduation. The field of special education still debates about the best way to teach students with moderate intellectual disabilities, the best setting for their instruction and the best instructional schedule. The current research investigated the effectiveness and efficiency of three instructional schedules in the skill acquisition and generalization of two-way radio usage to report task completion by high school students with moderate intellectual disabilities. The instructional schedules investigated were: (a) community-based instruction only (CBI), (b) community based instruction plus simulated instruction in the classroom-same day (CBISC) and (c) simulated instruction in the classroom only (SICO). A Multiple Probe Design across participants with intermittent probe trials within each instructional group, and an added generalization phase (Horner & Baer, 1978; Tawney & Gast, 1984; Alberto & Troutman, 2003) was employed in this study. Nine high school students with moderate intellectual disabilities, three in each instructional schedule, were taught to use a two-way radio to report task completion. The results of the study revealed that the CBI instructional schedule was the overall most efficient instructional schedule for skill acquisition. Two of the CBI participants required the least number of trials to learn to use a two-way radio to report task completion. The second most efficient schedule was the CBISC and the least efficient instructional schedule was the SICO. Based on Mean scores, learning efficiency appeared to be greater for the participants in the CBI and CBISC instructional schedule. These participants required the least number of intrusive prompts. Results indicated that the SICO instructional scheduled was more efficient for only one participant. This participant only required verbal prompts for acquisition of the skill. However, participant one on the SICO instructional schedule required the most intrusive prompts of all participants across groups. For generalization, the CBISC instructional schedule appeared to be the most effective. In this schedule, the two participants that concluded the study generalized the skill across three novel settings with 100% accuracy. The SICO schedule, also had two participants generalized the skill across three novel settings; however, one participant in that group failed to generalize the skill in two settings. The CBI instructional schedule appeared to be the least effective for skill generalization in this study. In this schedule, only one participant generalized the skill in all three novel settings.

Bakgrund Intellektuell funktionsnedsättning [IF] omfattar komplexa och varierande hälsoproblem. Personer med IF lider ofta av samsjuklighet och är därför en vanligt förekommande patientgrupp inom hela den somatiska hälso- och sjukvården. Det är däremot inte lika vanligt förekommande att det finns hälso- och sjukvårdspersonal som besitter speciell kunskap om personer med IF. Hälso- och sjukvårdspersonalens begränsade kunskap om IF i kombination med kommunikationshinder som kan uppstå i vårdmötet riskerar att resultera i att personcentreringen i omvårdnaden brister och patienter med IF löper en högre risk att drabbas av vårdskador jämfört med personer utan IF. Syfte Syftet med denna litteraturöversikt var att undersöka hur personer med intellektuell funktionsnedsättning och deras vårdare upplever den somatiska hälso- och sjukvården. Metod Databassökningar utfördes i PubMed och CINAHL och 14 vetenskapliga originalartiklar som uppfyllde författarnas inklusionskriterier valdes ut för att inkluderas i resultatet. Samtliga 14 artiklar kvalitetsgranskades utifrån Sophiahemmet Högskolas bedömningsunderlag för vetenskaplig klassificering och kvalitet. Författarna utförde sedan en integrerad dataanalys för att sammanställa resultatet. Resultat Tre huvudteman och sju underteman identifierades efter att ha sammanställt resultaten av de 14 originalartiklarna. Dessa tre huvudteman var: upplevelser av information och kommunikation; upplevelser av kunskap och attityder; och upplevelser av relation och tillit. Resultatet belyste att personer med IF och deras vårdare upplevde bristande kommunikation, otillräcklig kunskap och negativa attityder hos hälso- och sjukvårdspersonalen. Dessa brister tillsammans med otillgänglig information, undermåliga vårdanpassningar och dålig kontinuitet resulterade i bristande tillit till hälso- och sjukvården och dess personal. Slutsats För att främja en personcentrerad och patientsäker vård och förbättra personer med IF:s och deras vårdares upplevelser av den somatiska hälso- och sjukvården är det nödvändigt att sjuksköterskor får en ökad kunskap om IF och kommunicerar med personer med IF på ett tydligt och respektfullt sätt. / Background People with intellectual disabilities [ID] have complex and varied health issues and commonly suffer from co-morbidity. Therefore, it is not uncommon to find patients with ID within the somatic health care system. It is, however, not as common for health care staff to possess knowledge about people with ID. The health care staff's limited knowledge of ID in combination with communication barriers that can arise often result in a lack of person-centered care. Patients with ID are therefore at a greater risk of getting harmed in health care compared to people without ID. Aim The aim of this literature review was to investigate how people with intellectual disabilities and their carers experience somatic health care. Method Database searches were performed in PubMed and CINAHL and resulted in the inclusion of 14 original scientific articles that met the authors' inclusion criteria. All 14 articles were quality-checked based on Sophiahemmet University's assessment document for scientific classification and quality. The results were then compiled using integrated data analysis. Results Three main themes and seven sub-themes were identified after collating the results of the 14 original articles. The three main themes were: experiences of information and communication; experiences of knowledge and attitudes; and experiences of relationship and trust. The result highlighted that people with ID and their carers experienced inadequate communication and knowledge, as well as negative attitudes from health carestaff. These faults, in combination with inaccessible information, substandard care adaptations and poor continuity, resulted in a lack of trust in the health care system and itsstaff. Conclusions It is of necessity that nurses gain an increased knowledge about people with ID and learn how to communicate with them in a clear and respectful manner, to ensure that people with ID receive a safe and person-centered care and to improve people with ID and their carers' experiences of health care.