This study aims to develop an understanding of the lived experience of family carers of people with PIMD and dysphagia, in relation to mealtimes and food. Policy in recent years has begun to address the inequalities faced by people with learning disabilities and it is striving to improve their lives and the services offered to them. People with profound intellectual and multiple disabilities (PIMD) often have additional eating and drinking difficulties (dysphagia). People with dysphagia require ongoing support and guidance, to maximize their health, specifically their nutrition and hydration. In order to ensure that this support is appropriate, useful and sensitive to the needs of individuals and their families, it is important to try and view mealtimes through the eyes of these individuals and their families. The aims of this study emerged from observations made during my clinical work as a Speech & Language Therapist (SLT) and from engaging in discussion with family carers. In particular it has become increasingly clear from clinical practice that family carers often have different points of view about their son or daughter with profound intellectual and multiple disabilities, than those of professionals. These different points of view are often not clearly articulated by carers or professionals, and clinical interventions may become marked with conflict. This study is sited within a mental health and learning disability NHS trust in the north east of England. It utilises a phenomenological methodology and employs mixed methods to obtain data. Data collection took place between June 2013 and August 2014. Medical descriptions do not capture how it feels to live with impairment and resulting disability. Only when we examine this and allow individuals to tell their stories, as experts in their experiences, can we understand and offer support accordingly and ensure more functional and beneficial interactions and interventions. Findings are presented around four themes – the meaning of food and mealtimes, relationships, roles within the family and challenges. Findings are discussed in relation to the existing literature and recommendations are made for practice and for future research. During this study the adult child is mainly referred to as the ‘child’. For clarity, this is not in any way meant to convey the individual’s presentation as having PIMD as akin to being a child. The term is used to represent the relationship between the parents and the child. Despite the fact that the individuals are adults, they are still the children of the parents, and the relationship is a parent-son/daughter relationship. For brevity the term ‘child’ is used in preference to ‘adult child’. The use of the term has been agreed with the parents participating in the study. All names are assumed and have been chosen by the participants. In the course of this thesis the direct giving of food to the individuals with disabilities is termed ‘feeding’. I acknowledge this term may be associated with potentially negative connotations. The term ‘feeding’ has been used because it is the term used widely in the literature, because it was used by the family carers in their narratives and because there is no other suitable substitute which adequately describes the direct provision of food from one person in to the mouth of another.

The purpose of this study was to review systematically the research on the challenges and profound changes cloud computing conveys within organizations especially in cloud security. The cloud-computing phenomenon is an example of a disruptive technology rapidly transforming the Internet, social media, and business practices throughout the world. The research method proposed in this study was a systematic literature review following the protocol outlined by the Guidelines for performing Systematic Literature Reviews from the Campbell Collaboration and the PRISMA (Preferred Reporting Items from Systematic reviews and Meta-Analyses) checklist along with consultation in Software Engineering Systematic Literature Reviews. Databases consulted were ERIC, Elsevier, IEEE, EBSCOhost, and ProQuest Central. The search identified 218 potential studies and after the screening, 33 studies were selected that met the inclusion criteria and formed the basis of this review. The findings revealed the adoption of cloud computing triggered a business transformation initiative within organizations. And, as organizations discovered the transformative benefits of the cloud delivery service, business transformation became the primary reason for cloud implementation and expansion. Cloud security remained one of the most prominent challenge organizations faced in the cloud adoption decision. The evidence shows a yearly decrease in cloud security concerns beginning in 2014, and the trend continued up to the latest assessment in 2016. In addition, the evidence found that chief information officers (CIO) and chief technology officers (CTO) were losing influence in the cloud business transformation process, and to succeed, these leaders were required to develop a digital vision and strategic plans to lead their organizations into the new digital era cloud computing represents.

No description available.

Résumé : Introduction : Au Québec, jusqu’à l’âge de 21 ans, les enfants et adolescents ayant une déficience intellectuelle (DI) profonde ont des services de pédiatrie adaptés et l’opportunité de fréquenter des écoles spécialisées publiques. Toutefois, au-delà de cet âge, l’accès à ces services spécialisés est plus limité : le financement pour la fréquentation scolaire cesse et les jeunes adultes transfèrent des services de santé pédiatriques vers le secteur adulte. Malgré la mise en place de solutions visant à faciliter cette transition, des difficultés tendent à persister, une situation pouvant avoir des effets négatifs considérables au niveau de la personne ayant un handicap et de sa famille. Cependant, peu d’études se sont intéressées aux facteurs qui influencent le vécu de la transition vers la vie adulte des familles de jeunes personnes présentant une DI profonde, rendant difficile l’adaptation des programmes déjà existants de planification de la transition à la réalité de ces familles. Objectif : Ce projet vise à décrire les besoins des personnes présentant une DI profonde et de leur famille lors de la transition vers la vie adulte, en décrivant le vécu des parents lors de cette période et les facteurs qui l’influencent, ainsi qu’en explorant les pistes de solution à mettre en place. Méthodologie : Afin de réaliser cette étude qualitative, un devis descriptif interprétatif a été choisi. Deux entrevues semi-dirigées individuelles ont été réalisées auprès de quatorze parents, la deuxième entrevue permettant de valider et d’approfondir les résultats à l’aide d’un résumé de la première rencontre. Résultats : Plusieurs facteurs multisystémiques de l’ordre du soutien matériel, informatif, cognitif et affectif semblent influencer la transition vers la vie adulte. Ces différents facteurs contribuent au vécu particulièrement difficile des familles, qui vivent beaucoup d’anxiété et de frustration face au peu de soutien qui leur est offert. Plusieurs idées intéressantes ont été proposées par les parents pour répondre à ce manque de soutien, autant au plan du partage des connaissances, de l’amélioration de la collaboration inter-établissement que du soutien psychologique. Conclusion : Cette étude souligne l’importance d’impliquer l’ensemble des acteurs œuvrant auprès du jeune adulte et de sa famille dans la planification de la transition. La compréhension de la réalité des personnes avec une DI profonde et de leur famille devrait permettre de développer des interventions concrètes leur étant destinées dans de futurs projets. / Abstract : Introduction: In Quebec, until the age of 21, children and teenagers with profound intellectual disability (ID) have adapted pediatric health services and the opportunity to attend specialized public schools. However, beyond this age, access to specialized services is more limited: funding for school attendance ceases and young adults have to transfer from pediatric health services to the adult health services. Despite the implementation of solutions to facilitate transition to adulthood, some difficulties tend to persist, a situation that could have significant adverse effects on the person with a disability and their families. However, only few studies have focused on factors that influence the experience of the transition to adult life of families with a young people having profound ID, making it difficult to adapt transition planning programs to the reality of these families. Objective: This project aims to describe the needs of people with profound ID and their families during the transition to adulthood, by describing the experience of parents during this period and the factors influencing it, and by exploring potential solutions to implement. Methodology: In order to achieve this qualitative study, an interpretative descriptive design was used. Two individual semi-structured interviews were conducted with fourteen parents, the second interview was made to validate and deepen the results with a summary of the first interview. A semi-structured interview guide was created for the first interview and was previously validated by two families with a child with ID. Results: Several multisystemic factors targeting material, informative, cognitive, and emotional support seem to influence the transition to adulthood. These factors contribute to the particularly difficult experiences of families who live a lot of anxiety and frustration facing the lack of support offered. Several interesting ideas have been proposed by parents to address this lack of support, both in terms of knowledge sharing, improvement of inter-institutional collaboration, and psychological support. Conclusion: This study highlights the importance of involving all stakeholders working with young adults and their families in planning the transition. Understanding the reality of people with profound ID and their families will help to develop concrete actions for future projects.

In work with clients having profound learning disability, music therapists may include in sessions assistants not trained as music therapists. This study is a qualitative inquiry addressing the questions: 1) How does improvised music influence the interaction between teenagers with profound and multiple disability and learning support assistants? 2) Which aspects of the music are associated with any influences found? A survey of music therapists, exploring how assistants are used and how effectively they perform their role, found that assistants are often used as ‘interaction partners’. To explore how the therapist may facilitate client-assistant interaction, about which little is known, video clips from the writer’s clinical practice were purposively selected in order to illustrate an approach entitled Triadic Support of Interaction by Improvisation (TSII). Seven learning support assistants (LSAs) each viewed a video clip showing her own interaction with a teenager having profound disability, supported by the writer’s improvised music. Semi-structured interviews explored the LSAs’ understanding of the behaviour and inferred mental processes of the teenagers, their own behaviour and mental processes and the music improvised by the therapist to support the interaction. A variant of Interpretative Phenomenological Analysis generated shared themes, which included concern for the teenagers’ autonomy, interest in their communicative behaviour and understanding of the mutuality of interaction. The therapist’s improvisation was seen by the LSAs as influencing only the teenagers. All the clips were also viewed by three music therapists, who used a mechanical continuous response device to register the influence of the therapist’s improvisation on four ‘scenarios’: the teenagers’ behaviour, their inferred mental processes, the LSAs’ behaviour and their inferred mental processes. Inter-rater agreement between the three therapists’ continuous responses was generally low, but some intra-rater correlations were found between pairs of scenarios, which the music was perceived as influencing in similar ways. This finding supports the conclusion that musical influences, although they may be analysed according to the four scenarios, actually function as a mutually inter-related system rather than as four independent processes. Each therapist selected decision points from the graphic record of her/his individual responses to discussed with the other therapists as a panel. Positive evaluations were made of the role of TSII in supporting the observed teenager-LSA interactions and the inferred underlying mental processes. This research design was exploratory, and not intended to test specific hypotheses about the mechanisms of musical influence. Tentative suggestions of associations between influences and musical features are however offered by the writer. Indications for the use of TSII are given and other applications suggested for novel aspects of the methodology developed for this study. A refinement of the continuous response task is proposed, and the requirements for any future formal evaluation of TSII are outlined.

There are some human beings who live their lives at the extremes of the human condition because of some gross intellectual, cognitive, neurological, or developmental impairment to their human nature. The evidence from practices of care and concern towards such people – the profoundly impaired – suggests that they are acknowledged and respected as moral peers within the human community. Such pre-reflective intuitions and commonplace practices lend credence to the anthropological claim that the profoundly impaired are recognisably persons. Yet what might an argument in support of this intuition look like? How is it that the profoundly impaired are recognisably persons among fellow persons? This thesis is a theological response to that question. The presupposition underpinning the question is that there is something at stake for the humanity of the profoundly impaired in their being the particularly conditioned human beings that they are. There are, however, those who do not allow for the personhood of the profoundly impaired precisely because of the impaired condition in which they live their lives, and there are others who do uphold the personhood of the profoundly impaired precisely by sidelining their impairment. Peter Singer is representative of the first position. Christian theology can and should make an effective response to Singer’s challenge. An emerging field in Christian theology seeks to do so by proposing a distinct theology of disability that re-imagines Christian anthropology. The aim is to secure the humanity of the disabled without the condition of their humanity becoming an obstacle to their moral status within the community of persons. Key to this re-imagining is the adoption of a paradigm of inclusion towards the disabled. However, a critique will be offered of those theological re-imagined Christian anthropologies that centre on a paradigm of inclusion, and on a commitment to separating out the condition of the profoundly impaired from the question of their humanity. The Dutch Protestant theologian Hans Reinders proposes one such re-imagined anthropology in his recent major work, Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics. His claim is that the humanity of the profoundly disabled cannot be secured by the traditionally held Christian doctrine of the imago Dei because that doctrine treats personhood as something intrinsic to human beings, thereby making it inaccessible to the profoundly disabled who do not have the personalising capacities of reason and will. Instead, he proposes ‘being chosen as a friend’ by God as the only way in which the humanity of the profoundly disabled can be secured, thereby rejecting an immanent reading of the imago Dei in favour of a transcending conception of friendship. This thesis will argue that Reinders’ anthropological project fails because his transcendent concept cannot do for the humanity of the profoundly disabled what it sets out to do. Consequently, a return will be made to that tradition of Christian anthropology centred on the imago Dei to see what may be retrieved from it, such that the condition under which the profoundly impaired live their lives is central to them being recognisably the persons that they are. This is a proposition which says that the personal presence of the profoundly impaired among other persons is not to be denied to them (contra Singer), nor only extended to them as a means of belonging (contra a paradigm of inclusion), nor simply eschewed of them so that they may thereby be included by other means (contra Reinders). In placing the doctrine of the imago Dei at the heart of the creaturely life of human beings, the Catholic Church has made this doctrine the structural centre of any theological account of the personhood of the profoundly impaired. It will be the positive task of this thesis to uncover the theological import of this Catholic anthropological imagination. The two authors most significantly engaged with in undertaking this task will be C S Lewis and Josef Pieper.

No description available.

There is much research literature on quality of life with people with varying mild to moderate levels of developmental and intellectual disabilities. A gap remained in the current literature regarding differences between the severe to profound levels of intellectual and developmental disability across residential settings. The purpose of this study was to assess the level of support of people with severe to profound levels of developmental disabilities who resided and received services either in an institution and those who receive services within the community. The theoretical foundation for this study was Maslow's theory of humanism along with the contemporary theory of quality of life. Using a quantitative research design, the Support Intensity Scale (SIS) was administered to a convenience sample of 60 adults who receive supports while residing in the community and 60 adults who receive supports and reside in an institution in the southeast U.S. The data was analyzed using 1-way analyses of variance (ANOVA) on the SIS subtest scores. Although the levels of support for the basic needs were not statistically different between the 2 residential settings, there was a significant difference in the need for medical and/or behavioral needs. The findings of this study promoted social change as these differences can be presented as part of the individualized needs assessment to prevent Reinstitutionalization of these stakeholders.

<p>In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities matched for communicative ability and age respectively, and, (d) how social networks and family accommodations were linked to child/parent interaction and child behavior style over time for these families according to parental appraisals. The results in study I showed that child/parent interaction occurred through out the day and constituted of mutual experience and joy. There were two processes in interaction: monitoring interaction and successful interaction. Study II found hypo- and hyper dominated behaviour style of the children to influence interaction differently. The parents were found to be experts on their children in monitoring interaction to achieve more frequent periods of successful interaction. Study III found few differences in wishes about ideal interaction between parents of children with profound multiple disabilities and parents of typically developing children. Study IV showed that the children were communicative dependent on their parents; there were few complete overlaps between the children’s and the family’s social networks; and although family accommodations were child-driven, sustainability of family life evolved around other factors. There was a “contradiction” in results for the whole thesis: child/parent interaction occurred through out ordinary everyday life and constituted of mutual experience and joy versus the children’s communicative dependency and the distance found between social networks of families and children and child/parent interaction.</p>

In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities matched for communicative ability and age respectively, and, (d) how social networks and family accommodations were linked to child/parent interaction and child behavior style over time for these families according to parental appraisals. The results in study I showed that child/parent interaction occurred through out the day and constituted of mutual experience and joy. There were two processes in interaction: monitoring interaction and successful interaction. Study II found hypo- and hyper dominated behaviour style of the children to influence interaction differently. The parents were found to be experts on their children in monitoring interaction to achieve more frequent periods of successful interaction. Study III found few differences in wishes about ideal interaction between parents of children with profound multiple disabilities and parents of typically developing children. Study IV showed that the children were communicative dependent on their parents; there were few complete overlaps between the children’s and the family’s social networks; and although family accommodations were child-driven, sustainability of family life evolved around other factors. There was a “contradiction” in results for the whole thesis: child/parent interaction occurred through out ordinary everyday life and constituted of mutual experience and joy versus the children’s communicative dependency and the distance found between social networks of families and children and child/parent interaction.