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.

“Jag vet faktiskt inte varför ingen vill anställa någon som mig” : En studie om arbetslösas upplevda delaktighet i aktivitet.

Syftet med studien var att beskriva hur arbetslösa personer i tjänsten Stöd och matchning upplever delaktighet i aktivitet. Författaren använde kvalitativ metod med induktiv ansats. Datainsamlingen genomfördes genom intervjuer med bedömningsinstrumentet OCAIRS-S som grund. Fem deltagare rekryterades med bekvämlighetsurval på en mindre ort i Sverige. Författaren spelade in intervjuerna för att sedan transkribera och bearbeta dem genom en kvalitativ innehållsanalys med stöd av komponenter i ICF. Resultatet visade bland annat att deltagarna hade lätt att ge upp och saknade rutiner i sitt vardagsliv. Alla upplevde även att de klarar sig bra på sin inkomst och hade möjlighet att utföra alla aktiviteter de ville och behövde göra. De spenderade mycket tid ensamma och hade några få nära relationer. De flesta trivdes i arbetslösheten och alla såg positivt på framtiden. Ingen av dem letade aktivt efter möjligheter till arbete och de var inte heller initiativtagande. Slutsatserna som gjordes var att deltagarna saknar proaktivitet och motivation till att skaffa arbete. De skulle ha nytta av arbetsterapi för aktivitetsträning och/eller anpassning av aktiviteten ”att söka arbete”. Vidare forskning med större underlag behövs för en djupare förståelse.

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.