Children with intellectual disabilities’ perceptions of their participation in activities in everyday life – a pilot study : A minor field study conducted in Ethiopia

Background: Children with disabilities living in low and middle income countries’ perceptions of participation are not shown in research. These perceptions are important for providing appropriate interventions. Aim: To describe how children aged 8-12 with an intellectual disability living in Ethiopia perceive their situation regarding participation in activities in everyday life. Method: A descriptive design with a quantitative approach was used. The sample was gathered using consecutive sampling. Fifteen structured interviews were conducted, using “Picture my participation,” an instrument under development. Analyses were made using SPSS Statistics and Microsoft Excel. Results: The children perceived that they participated in activities in everyday life. There was a broad variation in the activities the children prioritized as most important. On a group level, they were very involved in these activities. The majority did not experience any barriers to perform these activities. Conclusions: The perceptions of the majority of the children were that they were involved in daily activities. They did not experience any barriers to participation. The results should be read with caution and generalization is not possible, due to the sample characteristics and that the instrument is under development.

Using health-related quality of life instruments for children with long-term conditions : On the basis of a national quality registry system

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments. Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system. Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings. Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations. Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Moving together – conditions for intercultural development at a highly diverse Swedish school

This thesis is a case study of a primary school in a highly diverse urban neighbourhood in Sweden. Basic pre-conditions for intercultural school development are studied by examining the overall organisation of teaching, learning and opportunities for collaboration in the investigated case. The study focuses on the targeted support measures to enhance learning for students with an immigrant background: Mother tongue instruction, Swedish as a Second Language, and tutoring in the mother tongue, as well as looking at pedagogical support provided by the school library. The latter has a mission to promote learning and inclusion, where non-native speakers of Swedish are a prioritised group. Communities of practice linked to the work organisation at a meso-level are investigated, and the collaborative relationships between professional groups at the school involved in the various support measures. Teacher relationships and categorisations implied by support measures impact the learning spaces that are shaped for students and the teaching spaces within which teachers work. Collaborative opportunities and convergence of concerns in the teaching spaces combine to shape the overall space for intercultural development. The raw data for the case study consists of interviews, national policy documents and additional information on local work organisation gained through documents and observations. Four articles resulted from the case study, each focusing a specific support measure. An overarching analysis is then made of findings from these articles and the other dimensions of the investigation. The analysis describes the organisation in terms of monocultural or intercultural school cultures, pointing to significant characteristics of the landscapes of practice, with respect to their overall implications for the spaces of school development. In the discussion, findings are considered in relation to research on professional development in education, collaboration, democracy and inclusive schooling. The relative positioning of languages and cultures is given particular attention, to ascertain if the school culture is monocultural or intercultural in the sense given by Lahdenperä (2008), and to what extent it could enable intercultural development. Such positioning plays a role interms of affordances for identity, participation and engagement discussed by Wenger (1998). This case study should be understood against the wider background of recent social developments in Europe linked to globalisation and technological changes. It is argued that looking at the concrete specifics which facilitate or obstruct school development, and simultaneously reflecting on how the different forms of teaching interrelate in the overall organisation and in policy may provide a useful vantage point from which structural changes can be contemplated.The discussion underlines the importance of the physical localisation of activities, continuity in personal contacts and time available for joint pedagogical reflection, as basic conditions for effective intercultural dialogue in the organisation. Finally, the impact of policy is considered, looking at connections between levels of policy, expressed in official steering documents, and conditions for teaching and learning at the level of an individual school.

Tid, rum och självbestämmande : Möjligheter och hinder i vardagen för äldre personer med intellektuell funktionsnedsättning på gruppboende

People with intellectual disability are living longer, which creates new demands for the support and care of this target group. Participation and autonomy at all ages, regardless of functional capacity, are cited in legislation and among the key objectives of disability policy. As a group, older people with intellectual disability have previously been almost invisible in both policy documents and research. Information regarding this group is thus limited, and more systematic knowledge is needed about older people with intellectual disability, their daily lives, and especially their opportunities for autonomy. The purpose of this thesis is to learn more about the role of influence and autonomy in everyday life from the perspective of older people with intellectual disability living in group homes. This will be achieved by studying situations in which opportunities and obstacles arise for these residents to exercise their autonomy in daily life, and identifying and analysing how autonomy is expressed in the meeting between residents and staff. The study applies an ethnographic approach, using methods including field studies with observations and videotaped meetings between residents and staff. The sample consists of residents aged 65 and over and staff at three group homes for people with intellectual disability. One resident at each group home is followed in greater depth. The analysis uses the time-geographic concepts of project, activity and restrictions in order to clarify where and when different projects are carried out, as well as who has the power to determine what is to be carried out. Interaction analysis is used to analyse the videotaped meetings between residents and staff. The analysis is based on Goffman’s interaction order and interaction rituals, theories about turntaking, both verbal and non-verbal, and theories about power and counter-power. In accordance with Goffman’s framework concept, the starting point is the concrete framework that reflects spatiality, which in turn becomes a way to place the more abstract framework of the situation into a specific context. Two major projects were identified: Sleep and Rest and Meals. The analysis reveals projects that are governed by the resident’s own preferences (individual projects) and projects that are governed to a greater degree by the staff’s objectives and opportunities (institutional projects). Some guidance also derives from municipal decisions and guidelines (organizational projects). Many projects were carried out based on staff decisions and objectives, but in actual practice many projects failed to get off the ground. Some projects were at risk of failure until something happened or someone intervened and thereby rescued the project so that it could be implemented. The interactional analysis perspective shows how autonomy is constructed in the meeting. Autonomy is situation-bound, and shifts more on the basis of context than in relation to specific individuals. The study includes decision situations mainly between autonomy and its opposite, paternalism, which are viewed as extremes on a continuum. However, certain factors lead to stronger autonomy in certain situations. When a resident can define the situation, they also have greater power to determine the outcome. In situations characterized by paternalism, the staff have a preferential right of interpretation and the power to decide, both on the basis of their knowledge and because of the asymmetrical interdependence that characterizes the resident-professional relationship. Such situations are also governed by the rules and procedures of the group home to a greater degree than those situations in which the resident exercises autonomy. The thesis discusses strategies that could increase the residents’ opportunities for autonomy. Greater communication skills among staff can be viewed as a step on the path toward greater autonomy for the residents. Staff have the potential to eliminate obstacles, to strengthen inadequate skills or create new ones by providing choices and assistive devices, and to exercise an affirmative approach.

Disabling and Enabling Technologies for Learning in Higher Education for All : Issues and Challenges for Whom?

Integration, inclusion, and equity constitute fundamental dimensions of democracy in post-World War II societies and their institutions. The study presented here reports upon the ways in which individuals and institutions both use and account for the roles that technologies, including ICT, play in disabling and enabling access for learning in higher education for all. Technological innovations during the 20th and 21st centuries, including ICT, have been heralded as holding significant promise for revolutionizing issues of access in societal institutions like schools, healthcare services, etc. (at least in the global North). Taking a socially oriented perspective, the study presented in this paper focuses on an ethnographically framed analysis of two datasets that critically explores the role that technologies, including ICT, play in higher education for individuals who are “differently abled” and who constitute a variation on a continuum of capabilities. Functionality as a dimension of everyday life in higher education in the 21st century is explored through the analysis of (i) case studies of two “differently abled” students in Sweden and (ii) current support services at universities in Sweden. The findings make visible the work that institutions and their members do through analyses of the organization of time and space and the use of technologies in institutional settings against the backdrop of individuals’ accountings and life trajectories. This study also highlights the relevance of multi-scale data analyses for revisiting the ways in which identity positions become framed or understood within higher education.