Recent research on working with families in which one child is suffering from a developmental disability has indicated a need for more focused clinical attention on the well sibling or neurotypical sibling experience. Research has also suggested that a systemic approach to the therapeutic process would be the most beneficial to all members of the family system, including the well sibling. Although the literature supports the use of systemic interventions in supporting the well sibling, there is a gap between what the research is suggesting and the clinical application. In an effort to fill this gap, this study sought to explore how Marriage and Family therapists are working systemically with families in which one child has a disability to incorporate the needs of the well sibling. After conducting four qualitative interviews and analyzing the data, three central themes emerged: 1) stabilization; 2) involving the well sibling; and 3) methods of support. Clinical implications as well as suggestions for future research are also addressed. / Master of Science

Parents of children with severe developmental disabilities face a variety of unique circumstances as they raise a child who requires specialized care. Accessing the support of other parents of children with developmental disabilities can be a valuable external resource for managing the stress associated with raising a child with special needs. The literature on support groups for parents of children with disabilities predominantly focuses on evaluating existing support groups rather than designing support groups based on the recommendations of the population that would utilize them. The purpose of this study was to determine the perceived value of support groups and identify recommendations for support group design based on the experiences and feedback of 19 interviews with parents of children with severe or profound developmental disabilities. Despite varied experiences with support groups, most participants indicated the value of support groups is in providing a place where parents can feel understood, share information, and gather information. There was a high degree of variability among parents' recommendations for support group design, with the preferences of some parents being in direct contrast to the preferences of others; the summary recommendations for support group design address a wide range of preferences: a qualified group leader to organize groups that are highly flexible in structure, composed of parents with a high degree of similarity, and that offer a wide variety of content in various formats. / Master of Science / Parents of children with severe developmental disabilities (any type of impairment that is chronic and affects functioning) are often confronted with unique challenges because of the extra care their child may require. Having a child that requires full-time care, while in some ways rewarding, is also often difficult for parents, and may affect many different areas of their lives. As a result, parents may seek additional support, including seeking support from other parents of children with severe developmental disabilities. Support groups are groups of people with a shared interest or need—in this case, parents of children with severe developmental disabilities—who meet in a variety of possible formats. The purpose of this research study was to get a better understanding of the value parents perceive support groups to have, and the specific formats they recommend to facilitate what they would most like to get out of support groups. The results of this research study provide recommendations that can be used by parents or by professionals to design support groups to best meet the needs of parents of children with severe developmental disabilities.

<b>Background:</b> Individuals with intellectual disabilities (ID) have a higher prevalence of comorbid psychiatric disorders and challenging behaviours compared to the general population. Though less common, one area of concern among those with ID is pica (the ingestion of inedible substances). To date, there is little knowledge of pica, particularly with respect to its risk factors and social consequences. The closure of Ontario's three remaining facilities by 2009 underscores the importance of having knowledge of complex behaviours such as pica for improving supports and services in the community for these individuals. The aim of this study is to better understand the characteristics and support needs of adults with ID and pica. This study is comprised of a quantitative and qualitative component. <b>QUANTITATIVE STUDY</b> <b>Objectives:</b> To investigate the prevalence, risk factors, social and medical characteristics of pica. To determine how pica is managed in terms of hours of supervision, receipt of interventions, and psychotropic medication. <b>Methods:</b> Secondary data analysis was performed on two samples as part of cross-sectional study: 1008 persons with ID from Ontario's facilities and 420 community-dwelling adults with ID from southwestern Ontario. All persons had been assessed using the interRAI Intellectual Disability (interRAI ID)?a comprehensive and standardized instrument that measures a variety of domains for support planning. Bivariate and multivariate analyses were restricted to the facility sample due to the small size of persons with pica in the community. <b>Results:</b>The overall prevalence of pica was 22. 0% and 3. 3% in the facilities and the community, respectively. Logistic regression analysis showed that being male, cognitive functioning, autism, and being non-verbal were associated with a higher odds of having pica, whereas activities of daily living (ADL) was a protective factor. A quadratic relationship was observed between cognitive function and pica: the risk of pica increased with severity of cognitive impairment up to moderate to severe levels of impairment and then diminished among those with very severe cognitive impairment. Behaviour management, self-care skills, and 8 hours or more of one-to-one supervision were more likely to be provided to persons with pica. Compared to persons without pica, persons with pica had higher rates of being prescribed antipsychotic medication. Surprisingly, pica was not associated with higher rates of gastrointestinal health problems, with the exception of acid reflux. The negative social outcomes of pica, however, were many: pica was associated with higher odds of not having a strong and supportive relationship with family, lack of contact with family or other close relations, and absence of participation in social and recreational activities. <b>QUALITATIVE STUDY</b> <b>Objective:</b> To determine the support needs of adults with ID and pica from the perspective of direct-care staff of facility and community settings. <b>Methods</b>: Through two focus groups, the perspectives of four staff from Huronia Regional Centre (HRC), and six staff from community agencies from southwestern Ontario were examined. Transcripts were analyzed thematically for factors that facilitated or hindered the management of pica. <b>Results:</b> Qualitative data revealed three categories that underpinned reduction in pica: preventative measures (environmental controls, close supervision, and the provision of alternative activities), formal supports, and familiarity with the individual. On the other hand, inadequate staff support, lower functioning level of the individual, and lack of knowledge acted as barriers to managing and reducing pica. These barriers were associated with persons participating in fewer recreational activities and community outings, and in some cases the use of mechanical restraints. Barriers specific to each setting in the management of pica were also illuminated. Staff in both settings tended to be self-sufficient and isolated in managing this complex behaviour. <b>Conclusions:</b> Results suggest that attention should be equally paid to the potential social consequences of pica rather than solely to its health risks. Higher staff to client ratios, and training and education for staff to provide more active support to promote individuals' engagement in recreational activity and community integration is needed. Key recommendations also focus on educating and training staff on the risk factors and appropriate management of pica. Improving the collaboration and knowledge exchange among developmental service agencies is also recommended to enhance the management of pica among caregivers. Lastly, the community at large needs education on pica to foster more inclusive community living for those with ID.

The purpose of this study was to assess the relationship between parental responsivity and language outcomes after a 24-session language intervention in a sample of 62 toddlers with significant developmental delays and fewer than 10 spoken words. The data for this secondary analysis were taken from a longitudinal study that evaluated language outcomes after augmented or spoken language intervention (Romski et al., 2010). Instances of parental responsivity increased from pre-intervention to post-intervention and directive behaviors decreased slightly across all intervention groups. The results suggest a relationship between parental responsivity and expressive language outcomes in children with developmental delay who use augmentative and alternative communication. These findings support the role of parents as social partners in language interventions.

Orientador: Eliane Mauerberg de Castro / Banca: José Angelo Barela / Banca: Renato de Moraes / Banca: Edison de Jesus Manoel / Banca: Marli Nabeiro / Resumo: Gestos perseverativos são respostas inapropriadas para uma demanda da tarefa e eles são comuns em algumas idades. Diariamente, adultos repetem inconscientemente muitos gestos simples que são automáticos nas suas rotinas. Quando o ambiente é alterado, a sinergia do movimento não é necessariamente ajustada. Isto tem sido associado à disfunção neurológica. Por outro lado, perseveração motora tem sido recentemente usada para interpretar a canônica tarefa Piagetiana A-não-B. Na tarefa Anão- B, bebês são "incentivados" a alcançar e pegar um de dois objetos (localização chamada "A") algumas vezes, com poucos segundos de demora entre dar a dica (chacoalhar o objeto e motivar a criança a pegá-lo) e dar o estímulo para a criança. Depois de um número de tentativas em "A", o experimentador dá a dica no alvo B. Tipicamente, por volta dos 10 meses de idade, bebês com desenvolvimento normal, mesmo olhando esse jogo de esconder e procurar, voltam a alcançar na tampa A depois do experimentador ter dado a dica na tampa B. A proposta deste estudo foi determinar se crianças com e sem retardo mental perseveram ou não na tarefa modificada Piagetiana de alcançe A-não-B, também, identificar o relacionamento entre o olhar e o alcançar durante sua performance, bem como o padrão do alcançar. Nós utilizamos a tarefa modificada da caixa de areia em que um objeto é escondido em uma localização A ou B. Vinte bebês com desenvolvimento normal (GC) (média de idade de 27,3 l 3.82 meses) e vinte crianças com atraso no desenvolvimento (GD) (média de idade de 55,62 l 9.24 meses) foram autorizados por seus pais para participarem do estudo. Enquanto realizaram a tarefa A-não-B na caixa de areia, todos os participantes foram filmados por 3 cameras. Os resultados revelaram que o GD perseverou mais do que o GC ao longo de todas as tentativas... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: Perseverative gestures are inappropriate responses to a task demand and they are common at any age. Daily, adults repeat unconsciously many simple gestures that are automatic in their routines. When the environment is slightly altered, the movement synergy is not necessarily adjusted. This has been associated to neurological dysfunction. On the other hand, motor perseveration has recently been used to interpret the canonical A not B Piagetian task. In the A not B task, infants are "enticed" to reach for and grasp at one of two objects (location called "A") a few times each, with few seconds delay between cuing (shaking the object and enticing the child to grab it) and giving the stimulus to the child. After a number of trials in A, the experiment cues the B target. Typically, around the age of 9 months, normally-developing infants, even though they watch this "hide and seek" game, return to reach for the "A" lid after being cued to reach for the "B" lid. The purpose of this study was to determine whether or not children with and without mental retardation (MR) perseverate in a modified Piagetian "A not B" reaching task, and also to identify the looking and reaching relationship during their performance as well as the reaching pattern. We modified the traditional Piagetian "A not B" task by placing one of two identical targets (lids) inside a sand box. Twenty normally developing infants (ND) (mean age of 27,3 l 3.82 months), and twenty children with mental retardation (MR) (mean age of 55.62 l 9.24 months) were authorized by their parents to take part in this study. While performing the "A not B" sand box task, all participants were videotaped with three cameras. A section experiment shows results confirming that the MR group perseverated throughout all trials. The MR group decoupled looking at the targets from the reaching gesture, while ND group kept lookingreaching coupled ... (Complete abstract click eletronic access below) / Doutor

Adolescents with developmental disabilities (DD) experience regular physical and sexual development. Some adolescents with developmental disabilities engage in problematic sexual behaviors (PSB). In order to be able to address the needs of this population in terms of prevention of PSB, and provision of effective treatment after PSB has begun, their experience must be understood and contributing factors identified. It is with this in mind that this study was designed, with the purpose being the exploration of the experiences of adolescents with DD who have engaged in sexually problematic behaviors, including compulsive or addictive patterns of behavior, and to identify the contributing factors for engaging in these behaviors. A grounded theory approach with a directed analysis component was used. Eleven participants were interviewed including five persons with developmental disabilities (PWDD) and six parents regarding the experiences of seven different individuals with DD who have engaged in PSB. Results of this study indicate that the presence of a DD increases the complexity of this experience. A model was created to explain the overall process of engaging in PSB as requiring exposure, motivation, opportunity, and deficits in sexual education. In addition, nine different factors were identified that may be contributing factors that increase the risk of an individual with DD engaging in PSB. These results may be of value for parents of children with DD, service providers, and educators.

The purpose of the study was to examine the effectiveness of teaching sight words using an iPad app with embedded models to students with developmental disabilities. The experimental design used was multiple probe (conditions) across behaviors replicated across students. All sessions occurred in a one-to-one format. The results showed the iPad app with embedded models were effective in teaching sight words to students with developmental disabilities.

Current research indicates that parents of children with developmental disabilities experience more parental stress than parents of typically developing children, yet most are able to successfully cope with the additional care giving demands. There has been little research however, on the role of the communication ability of children with developmental disabilities on parental stress. This study examined the effects of a parent-implemented language intervention on parental stress and its relation to parental perceptions of communication development in young toddlers (N = 59) and their parents. Results indicate that parent stress did not decrease significantly following language intervention. Parents’ perceptions about the severity of their child’s communication deficits partially mediated the relationship between expressive language at baseline and parent stress at post-intervention. In addition, exploratory results begin to support the idea that parents who are initially high in parent stress are able to decrease their overall parent stress following language intervention.

Att ha en utvecklingsstörning leder ofta till svårigheter att utföra dagliga aktiviteter. Detta resulterar i behov av anpassat stöd för att kunna vara delaktig. Personer somhar en utvecklingsstörning blir allt äldre och går inte i pension vid samma ålder somden övriga befolkningen. Därför har den dagliga verksamheten en stor betydelse förderas vardag. Syftet med studien var att undersöka hur äldre personer som har enutvecklingsstörning upplever sin delaktighet i daglig verksamhet. För att få svar pådetta genomfördes kvalitativa intervjuer med nio personer som har enutvecklingsstörning, regelbundet gick på daglig verksamhet och var över 50 år. Ianalysen framkom tre teman, personliga faktorer, miljöfaktorer och bestämmande,vilka påverkade informanternas upplevelse av delaktighet. Studien visade attupplevelsen av delaktigheten på daglig verksamhet hade förbättrats jämfört med närde var yngre. Det framkom att åldrandet påverkade delaktighet eftersom erfarenhetupplevs leda till ökad kunskap om sin egen aktivitetsförmåga. Informanterna menadeatt de nu hade större möjlighet att fatta egna beslut och själva påverka sitt görande på daglig verksamhet. En slutsats var att informanterna inte reflekterat så mycket överatt bli äldre, vilket kan bero på att övergången till ålderdomen inte blir så tydlig då pensionering är ovanligt. / Having an intellectual disability often leads to limitations in performing daily activities. It also results in a need for tailored support to be able to participate. The mean age for persons with an intellectual disability is increasing and they do not retire at the same age as people without intellectual disability. Daily activities therefore have an important role in their everyday life. The aim was to investigate how older persons with intellectual disabilities perceive their participation in daily activities. Nine qualitative interviews were conducted with persons over 50 years old who had an intellectual disability and who regularly engaged in daily activities. The analysis highlighted three themes,- decision-making, personal factors and environmental factors,- that affect the informants’ perception of participation in daily activities. The study showed that the perception of participation in daily activities had improved compared with when they were younger. Ageing affects participation because experience is perceived as bringing greater knowledge about performance capacity.The informants reported that they now had more opportunities to make decisions and influence their situation in daily activities. One conclusion is that people with intellectual disabilities do not reflect much about becoming older since the transition to being old is not that clear because retirement is unusual.

<b>Background:</b> Individuals with intellectual disabilities (ID) have a higher prevalence of comorbid psychiatric disorders and challenging behaviours compared to the general population. Though less common, one area of concern among those with ID is pica (the ingestion of inedible substances). To date, there is little knowledge of pica, particularly with respect to its risk factors and social consequences. The closure of Ontario's three remaining facilities by 2009 underscores the importance of having knowledge of complex behaviours such as pica for improving supports and services in the community for these individuals. The aim of this study is to better understand the characteristics and support needs of adults with ID and pica. This study is comprised of a quantitative and qualitative component. <b>QUANTITATIVE STUDY</b> <b>Objectives:</b> To investigate the prevalence, risk factors, social and medical characteristics of pica. To determine how pica is managed in terms of hours of supervision, receipt of interventions, and psychotropic medication. <b>Methods:</b> Secondary data analysis was performed on two samples as part of cross-sectional study: 1008 persons with ID from Ontario's facilities and 420 community-dwelling adults with ID from southwestern Ontario. All persons had been assessed using the interRAI Intellectual Disability (interRAI ID)?a comprehensive and standardized instrument that measures a variety of domains for support planning. Bivariate and multivariate analyses were restricted to the facility sample due to the small size of persons with pica in the community. <b>Results:</b>The overall prevalence of pica was 22. 0% and 3. 3% in the facilities and the community, respectively. Logistic regression analysis showed that being male, cognitive functioning, autism, and being non-verbal were associated with a higher odds of having pica, whereas activities of daily living (ADL) was a protective factor. A quadratic relationship was observed between cognitive function and pica: the risk of pica increased with severity of cognitive impairment up to moderate to severe levels of impairment and then diminished among those with very severe cognitive impairment. Behaviour management, self-care skills, and 8 hours or more of one-to-one supervision were more likely to be provided to persons with pica. Compared to persons without pica, persons with pica had higher rates of being prescribed antipsychotic medication. Surprisingly, pica was not associated with higher rates of gastrointestinal health problems, with the exception of acid reflux. The negative social outcomes of pica, however, were many: pica was associated with higher odds of not having a strong and supportive relationship with family, lack of contact with family or other close relations, and absence of participation in social and recreational activities. <b>QUALITATIVE STUDY</b> <b>Objective:</b> To determine the support needs of adults with ID and pica from the perspective of direct-care staff of facility and community settings. <b>Methods</b>: Through two focus groups, the perspectives of four staff from Huronia Regional Centre (HRC), and six staff from community agencies from southwestern Ontario were examined. Transcripts were analyzed thematically for factors that facilitated or hindered the management of pica. <b>Results:</b> Qualitative data revealed three categories that underpinned reduction in pica: preventative measures (environmental controls, close supervision, and the provision of alternative activities), formal supports, and familiarity with the individual. On the other hand, inadequate staff support, lower functioning level of the individual, and lack of knowledge acted as barriers to managing and reducing pica. These barriers were associated with persons participating in fewer recreational activities and community outings, and in some cases the use of mechanical restraints. Barriers specific to each setting in the management of pica were also illuminated. Staff in both settings tended to be self-sufficient and isolated in managing this complex behaviour. <b>Conclusions:</b> Results suggest that attention should be equally paid to the potential social consequences of pica rather than solely to its health risks. Higher staff to client ratios, and training and education for staff to provide more active support to promote individuals' engagement in recreational activity and community integration is needed. Key recommendations also focus on educating and training staff on the risk factors and appropriate management of pica. Improving the collaboration and knowledge exchange among developmental service agencies is also recommended to enhance the management of pica among caregivers. Lastly, the community at large needs education on pica to foster more inclusive community living for those with ID.