Background: This thesis contains two elements: the first is a systematic review examining some of the determinants of quality of life for people with intellectual disability. Understanding these determinants can drive improvement at both individual and societal level. Yet there are a number of quality of life measures which might confound findings between studies. This systematic review sought to identify factors that influence quality of life using self-report on one measure developed for use with people with intellectual disability, the ‘Quality of Life Questionnaire’ (Schalock & Keith 1993). The second element is an empirical study that aims to explore the lived experience of aging for older adults with intellectual disability. There are noted differences between people with and without disability as they grow older, for example in terms of health and social opportunity. Previous studies have not consistently sought the experience of the people with intellectual disability themselves, or have used participants not traditionally considered older adults. This study aims to address gaps and further our knowledge in the lived experience of getting older for older adults with intellectual disability. Method: Within the systematic review a systematic search of relevant studies to 20th January 2015 was completed using a specified inclusion criteria, yielding 13 peerreviewed journal articles. These were scored on 11-point purpose-designed quality criteria. For the empirical study semi-structured interviews were completed with ten participants with intellectual disability (age range 60 – 74 years, five female) regarding their understanding of getting older and their experience of ageing. Nine transcribed interviews were analysed using interpretative phenomenological analysis. Results: The systematic review found that living in a semi-independent environment or an urban setting, being employed, being involved in domestic and community activities, receiving social support and possessing social skills and self-determination were factors that improved quality of life for people with intellectual disability. Three major themes emerged from the empirical study data when participants discussed getting older: ‘Not changed by ageing’, ‘Thinking about the ageing process’ and ‘What happens when getting older’. Participants tended to feel that they were still the same due to continuation of the same activities and social support. They demonstrated confusion in the ageing process, considering the process ‘inevitable’ but insignificant, although also recognising some changes associated with the process. They discussed their views about what they considered happens when people get older, which tended to be stereotypical and often negative. However they also reflected on their own experiences and how they had changed. Discussion: The methodological quality of the studies reviewed was found to be generally low due to a range of factors including study design, measurement of intellectual disability and reporting of sample demographics and results and therefore conclusions should be treated with caution. This highlights a need for further research with people with intellectual disability of a higher methodological quality. The empirical study is discussed in reference to previous research and gerontological theories of ageing. The study highlighted that staff or family did not broadly discuss ageing with participants and their views often changed over the course of the interviews from more physical and negative aspects to how ageing impacted them. This research demonstrated older adults with intellectual disability do have opinions on ageing. Further exploration with people with intellectual disability on this topic is to be encouraged in the future to develop a more balanced view.

Introdução - A obesidade é uma doença crônica de origem multifatorial, considerada como um dos principais problemas de saúde pública nos países desenvolvidos, que constitui fator de risco para outras doenças graves. Sua prevalência vem aumentando mundialmente e em especial, em crianças e adolescentes. Acredita-se que as principais causas estão ligadas tanto a fatores genéticos como ambientais. Objetivo - Identificar por meio do relato de pais e de equipe interdisciplinar as facilidades e as dificuldades à adesão de adolescentes obesos com deficiência intelectual e de suas famílias para cumprir programa de orientação e prevenção das complicações da obesidade. Métodos - Trata-se de estudo de coorte histórica, descritiva e quali-quantitativa com um número de 47 adolescentes obesos com deficiência intelectual, seus responsáveis e equipe interdisciplinar, que no período de 2006 a 2008, participaram de um programa de orientação e prevenção de complicações da obesidade (POPO), oferecido pela Sociedade Pestalozzi de São Paulo. Os dados foram coletados dos prontuários, das fichas de acompanhamento do programa, dos questionários de estudo sócio-econômico e por meio de entrevistas utilizando um roteiro de questões específicas dirigidas às famílias e profissionais envolvidos no processo. Resultados - A caracterização dos adolescentes envolvidos no estudo mostrou uma prevalência da Síndrome de Down representada em 19 (40,4%) deles. Observou-se também, concentração de maior grau de obesidade com aumento da idade sendo, 63,2% estão na faixa etária de 17 a 20 anos e foram conceituados ao Grupo 3 (IMC>35). As famílias estudadas foram caracterizadas em sua grande maioria moradoras da Zona Norte SP, condições sócio-econômicas precárias com renda familiar de 1 a 2 salários mínimos e grau de escolaridade da mãe apresentando na sua grande maioria o ensino fundamental incompleto. Os profissionais que compõem a equipe interdisciplinar são na maioria absoluta do sexo feminino, atuam as áreas da medicina, psicologia e fisioterapia e apresentam experiência na área da deficiência intelectual que varia de um a 21 anos. Os resultados foram apresentados e descritos segundo dois eixos norteadores: Conclusão - A falta de locais especializados para pratica de atividades físicas, preço elevado dos alimentos sugeridos, não colaboração dos demais familiares, falta de autonomia e independência dos deficientes intelectuais e pouca freqüência às reuniões de orientações realizadas pela equipe, foram apontados como sendo os principais fatores que dificultam uma maior adesão ao programa. E quanto aos aspectos facilitadores destacou-se a comodidade do programa ser na própria instituição, a persistência da equipe e preocupação com a saúde dos filhos. / Introduction - There are many factors that contribute to the chronic disease of obesity. It is regarded as a major public health problem in developed countries. It is also a risk factor for other serious diseases. It\'s prevalence is increasing worldwide and especially in children and adolescents. It is believed that the main causes are linked to genetic and environmental factors. Objective - To identify through the report of parents and interdisciplinary teams, the facilities and the difficulties that obese adolescents with intellectual disabilities and their families have in accessing the ***Obesity Education and Prevention Program (POPO). Méthodos - It refers to a historical cohort study, that was descriptive, qualitative and quantitative. It included 47 obese adolescents with intellectual disabilities, their caregivers and the multidisciplinary team that from 2006 to 2008, participated in an ***Obesity Education and Prevention Program (POPO), offered by the Pestalozzi Society of Sao Paulo. Data was collected from medical records, the monitoring reports of the program, questionnaires from a socio-economic study and through interviews using a script of questions targeted at families and professionals involved in the process. Results - The results were presented and described according to five guiding principles: The characterization of adolescents involved in the study showed a prevalence of Down syndrome represented in 19 (40.4%) of them. The results was also indicated a greater degree of obesity with increasing age and 63.2% are between the ages of 17 and 20 years, which was representede in the Group 3 (BMI> 35). The families studied were characterized mostly living in the North Zone - SP, the socio-economic situations indicated family income between 1 to 2 minimum wages, the majority of the mothers had elementary school education and the majority of the professionals who comprise the interdisciplinary team are female. They include medical professionals, psychologists and physical therapists who have between 1-21 years of experience in the area of intellectual disabilities.Conclusion - It was determined that the main factors that render lower adherence to the program are: the lack of places to practice physical activities, the high price of food, the lack of cooperation from other family members, lack of autonomy and independence of the intellectually disabled and the infrequently meetings for feedback from the team. However, it was indicated as a facilitie, that the program was convieniently located within the institution and the team was persistent and concerned about the health of the children.

In order to examine the literature on acceptance and mindfulness in parents of children with developmental disabilities a systematic review was conducted. Twelve studies were included in the review and provided some support for the relevance of these concepts in helping to support parents of children with developmental disabilities. However, general study quality was poor and methodological limitations hampered confidence in these findings. Research considerations are discussed. An empirical study was conducted to examine the relationship between psychological acceptance and family quality of life in parents of children with intellectual disabilities. One-hundred and twenty-nine parents of children with intellectual disabilities participated in a questionnaire based study. Participants completed measures of family quality of life, psychological acceptance, emotional adjustment, mental well-being and impact of the child. Parental psychological acceptance was positively associated with family quality of life and was found to account for around 1.9 per cent of its variance. Parental emotional adjustment was also positively associated with family quality of life, however, when parental psychological acceptance was added to the regression model emotional adjustment was no longer a statistically significant variable. The results of this study suggest that parental psychological acceptance may explain some of the variance in family quality of life. Further research is needed to ascertain whether interventions that improve parents' psychological acceptance also improve family quality of life.

The purpose of this study was to determine the effectiveness of a video-based instruction packet as a method of teaching math-based vocational skills delivered through augmented reality to three adults with intellectual disabilities. The dependent variable was the percentage of steps performed correctly to solve each selected type of math problem. The independent variable was the video-based math intervention delivered via augmented reality, which modeled the individual steps for solving three different multi-step math problems: (1) adjusting a recipe to serve a different number of people, (2) calculation of salary, (3) calculation of unit prices. Visual and statistical analysis demonstrated a functional relationship between the video-based math intervention and an increase in the percentage of steps completed correctly for each type of problem. All three participants showed significant gains immediately after receiving the intervention and maintained the learned skills even following the withdrawal of the intervention. Implications for practitioners and further research are discussed.

Parents of individuals with intellectual disabilities are confronted with challenging decisions regarding whether to place their adult child in a group-home. The research question for this study was to ascertain the lived experiences of parents confronted with this life altering decision. Limited research exists on parents who face this difficult life choice. The purpose of this study was to explore the lived experiences of parents of individuals with intellectual disabilities when contemplating residential placements. Ten participants from the north Atlantic coastline in the U.S. were recruited and shared their lived experiences during semi structured interviews. Utilizing qualitative methodology to undergird Heidegger's phenomenology framework, data was collected and analyzed using the hermeneutic circle. The thematic outcomes included best option, physical aggression, death/absence of a spouse, caregiver medical conditions, mental health-behavioral disorder, community integration, hospital/emergency, verbal aggression, and financial burden. The results can inform counselors regarding the struggles the parents of adult children with intellectual disabilities confront and how they influence decisions regarding alternative living arrangements. The findings inform parents enduring emotional and physical stressors, caregiver burden, and relationship strain. Positive social change can be realized through disseminating the results of this study to parents, counselor educators and supervisors. Coursework could introduce students and practitioners to the parental decision-making process to help understand family dynamics and alternative living arrangements for individuals with intellectual disabilities.

People with intellectual disabilities (ID) experience trauma and posttraumatic stress disorder (PTSD) in similar ways as individuals in the general population. The purpose of this phenomenological study was to explore and describe clinicians perceptions of trauma treatment for people with ID. Theories of trauma, PTSD, and stigma were part of the conceptual framework from which interview questions were developed. Purposive and snowball sampling were used to recruit 8 participants in the Denver, Colorado area. Four participants had experience working with people with ID, and 4 participants did not have this experience. Participants sat for semi structured open-ended recorded interviews, which were used to gather data for interpretation. Eight essential themes were identified: (a) chosen field, (b) lack of training, (c) stigma and stereotypes, (d) they're just folks like us, (e) preying on their vulnerabilities, (f) PTSD and trauma symptoms are the same with people with ID, (g) EMDR and the adaptive information processing theory, and (h) mindfulness interventions. The participants dispelled myths such as people with ID do not experience trauma and PTSD, and people with ID cannot participate in trauma therapy such as EMDR. Participants who had experience working with people with ID wanted more training on adaptations for treatment interventions, and participants without this experience welcomed advanced training on trauma treatment for people with ID. This study adds to the research on trauma treatment for people with ID and may affect social change by inspiring more conversations among clinicians on appropriate trauma treatment for people with ID. Clinicians with experience can build stronger relationships with community mental health centers, and continue to educate, clients, families, direct care providers, and agency personnel on trauma-informed care.

Adults with intellectual disabilities (ID) are at risk for negative health conditions due to high levels of sedentary behavior. Walking and cycling are the most common forms of physical activity engaged in by adults with ID. Research is limited in evaluating physical activity interventions for this population. The purpose of this study will be to evaluate the effectiveness of a token reinforcement intervention to increase distance walked for adults with mild to moderate ID at adult day training centers.

<p>This essay is about personal assistance for persons with considerable intellectual disabilities.</p><p>The purpose with the study is: to examine personal assistance for individuals, who can`t speak</p><p>for themselves, to examine how the individuals can determine and get influence into their</p><p>assistance and how they can get help with it, to examine the role of an representative in</p><p>relation to the serviceuser´s assistance and examine if there are factors of gender in the</p><p>interviews.</p><p>The chosen method is qualitative interviews.</p><p>The interviews has been analysed through earlier research about personal assistance and</p><p>theoretical perspectives like: influence, integration and citizenship and discussed through</p><p>perspectives of social psychology.</p><p>The main conclusions are: the influence the serviceusers can have is through persons who</p><p>know them very well, the role of the representatives are indistinct, the serviceusers can´t</p><p>determine their assistance themselves and need help with it from relatives, representatives,</p><p>personal assistants and managers, the persons who know the serviceuser intimately are best to</p><p>transform the needs to assistance. The factors of gender, are that there are more men as</p><p>personal assistants than in the care of elderly, and the representatives are mostly men. The</p><p>personal assistants appreciates the time they have for the serviceuser, the work can be lonely</p><p>and demanding.</p>

<p>This essay is about personal assistance for persons with considerable intellectual disabilities.</p><p>The purpose with the study is: to examine personal assistance for individuals, who can`t speak</p><p>for themselves, to examine how the individuals can determine and get influence into their</p><p>assistance and how they can get help with it, to examine the role of an representative in</p><p>relation to the serviceuser´s assistance and examine if there are factors of gender in the</p><p>interviews.</p><p>The chosen method is qualitative interviews.</p><p>The interviews has been analysed through earlier research about personal assistance and</p><p>theoretical perspectives like: influence, integration and citizenship and discussed through</p><p>perspectives of social psychology.</p><p>The main conclusions are: the influence the serviceusers can have is through persons who</p><p>know them very well, the role of the representatives are indistinct, the serviceusers can´t</p><p>determine their assistance themselves and need help with it from relatives, representatives,</p><p>personal assistants and managers, the persons who know the serviceuser intimately are best to</p><p>transform the needs to assistance. The factors of gender, are that there are more men as</p><p>personal assistants than in the care of elderly, and the representatives are mostly men. The</p><p>personal assistants appreciates the time they have for the serviceuser, the work can be lonely</p><p>and demanding.</p>

This essay is about personal assistance for persons with considerable intellectual disabilities. The purpose with the study is: to examine personal assistance for individuals, who can`t speak for themselves, to examine how the individuals can determine and get influence into their assistance and how they can get help with it, to examine the role of an representative in relation to the serviceuser´s assistance and examine if there are factors of gender in the interviews. The chosen method is qualitative interviews. The interviews has been analysed through earlier research about personal assistance and theoretical perspectives like: influence, integration and citizenship and discussed through perspectives of social psychology. The main conclusions are: the influence the serviceusers can have is through persons who know them very well, the role of the representatives are indistinct, the serviceusers can´t determine their assistance themselves and need help with it from relatives, representatives, personal assistants and managers, the persons who know the serviceuser intimately are best to transform the needs to assistance. The factors of gender, are that there are more men as personal assistants than in the care of elderly, and the representatives are mostly men. The personal assistants appreciates the time they have for the serviceuser, the work can be lonely and demanding.