Borgunn Ytterhus

The Use and Non-Use of Assistive Technologies from the World of Information and Communication Technology by Visually Impaired Young People: A Walk on the Tightrope of Peer Inclusion.

In affluent societies how people use technology is symbolic of various values and identities. This article investigates the symbolic values and use of assistive technologies from the world of information and communication technology (ICT) in the daily lives of 11 visually impaired young Norwegians. The article draws on a qualitative interview study and employs an interactionist approach. While the use of ICT is found to symbolise competence, belonging and independence, the use of ICT assistive technologies is found to symbolise restriction, difference and dependency. Thus, ICT and ICT assistive technologies have inherently contradictory sets of associations. To fit in as ordinary young people the visually impaired participants reject ICT assistive technologies whenever possible. The partially sighted participants who are somehow capable of participating in online interactions with their peers without ICT assistive technologies reject them. The blind participants, however, do not have the option of participating online without ICT assistive technologies and, consequently, they accept ICT assistive technologies.

Not worth the paper it's written on? Informed consent and biobank research in a Norwegian context

In January 2003 the Norwegian Parliament passed the Biobanks Act, regulating biobank research in Norway. There have been strong differences of opinion both in the process of making the law as well as in its first years of implementation. The main controversy relates to what kind of informed consent should be required for biobank research. Central to the controversy over current interpretations of the Biobanks Act is the informed consent given by the donors to the biobank of the Nord-Trøndelag Health Study (HUNT), and whether the consent given ‘was worth the paper it was written on’. This article traces the history behind the informed consent procedure of the blood samples in the largest research biobank in Norway, the HUNT biobank. Second, findings from a focus group study with biobank participants are presented. Third, a philosophical analysis is made of the concept of informed consent in light of the findings from the focus-group study as well as the history behind the HUNT biobank. Findings from the focus-group study show that the consenters base their participation on trust in the researchers and the regulation of research in Norwegian society, rather than on specific information on the research in question. The history behind the HUNT biobank fosters trust. The story provides a strong case for not limiting the debate to legalistic and formalistic ethics but also including a research ethics that says that process and trust matter. Otherwise no informed consent in medical research is worth the paper it is written on.

HOW CHILDREN WITH PARENTS SUFFERING FROM MENTAL HEALTH DISTRESS SEARCH FOR 'NORMALITY' AND AVOID STIGMA To be or not to be ... is not the question

Using data from in-depth interviews with 20 children, this study finds that children with parents suffering from mental health distress struggle hard to present themselves as ‘normal’ and equal among their peer group. The study shows how they avoid stigma in their presentation of self in everyday life. All the children in this study, regardless of age or parents’ suffering, are active participants and impression managers in and of their own lives. The authors question whether their active responsibility for their own and their family’s well-being becomes too heavy a burden and should be moved from children’s private sphere into public arenas such as schools or social and healthcare services.

The "double life" of bulimia: patients' experiences in daily life interactions.

This qualitative study, using interviews with 38 subjects, explored how and why they conceal bulimic symptoms and the understanding of concealing in terms of social interaction. A “double life” was described as a dichotomy between being active and outgoing versus performing shameful bulimic behaviors and constantly living with fear of stigmatization, and striving against exposure. Concealing was well planned to avoid such fear, and to preserve dignity. Bulimia may be understood as volitional exertion of interaction control, not just as a result of poor impulse regulation. Understanding the meaning of secrecy and “double life” may facilitate help seeking behavior and guide treatment.

Managing turning points and transitions in childhood and parenthood – insights from families with disabled children in Norway

This article explores turning points and transitions emerging in the life course of children with disabilities and their parents. Through in‐depth interviews with parents we found that a change appears in disabled children’s social participation and belonging, at approximately eight years of age for children with learning difficulties and at approximately ten years of age for children with mobility difficulties. Most of the parents experienced a ‘turning point’ that directed them into either marginal or inclusive positions in adulthood. The ‘transition’ emerges at a time described as a stable period of life for families in general and illustrates parents’ experiences of the importance of both ‘doing’ and ‘being’ in parenthood and childhood. Parents’ experiences are strongly interwoven with the child’s life and access or lack of access to services and relational responses.

Physical integration and social marginalization in Norwegian nursery schools: attitudes, rank‐ordering or situation dynamics?

ABSTRACT The paper presents a study of the social aspects of integration of disabled children in regular Norwegian nursery schools. The main purpose is to contribute to the understanding of social marginalization of disabled children ‐ if, how and when social interaction between disabled and non‐disabled children becomes problematic or breaks down. The paper is based on observations of face‐to‐face interaction in the everyday life of four nursery schools. It is suggested that, among young children, processes linked to ‘situation dynamics’ and to ‘interaction rules’ might be more important than attitudes and preconceptions among non‐disabled children.

Friendship between children using augmentative and alternative communication and peers: A systematic literature review

ABSTRACT Background Although research on friendship among children without any reported disability is extensive, the investigation of the characteristics of friendship among children who are using augmentative and alternative communication (AAC) has received little attention. In this systematic literature review we investigated the current research on friendship between children who use AAC under 13 years of age. Method Database searches were undertaken with English search terms. The review included 8 articles. Results The results revealed that current research lacks systematic development of knowledge. Children using AAC have a different basis for establishing and developing friendship, due to restrictions in presence, participation, interaction, and communication with peers. Conclusions Future research could pay closer attention to how children using AAC develop friendship, and how such relationships can be supported. This research could usefully incorporate the body of research on friendship among children without disability.

‘Talking bodies’ : Power and counter-power between children and adults in day care

The article examines how children use bodily expressions as an instrument of power and a method of being heard when adults place them in positions of powerlessness in everyday life practice. The main focus is on children with social difficulties. The article focuses on children and adults in situations during time spent outdoors. The findings show that children and staff have different perceptions of what is desirable, and that they use different power mechanisms to change or maintain the power of definition.

When everyday life becomes a storm on the horizon: families’ experiences of good mental health while hiking in nature

ABSTRACT Hiking in nature is often presented as a yearning for lost harmony premised on an alleged divide between nature as authentically healthy and society as polluted. This papers aim is to question this strict divide and the strong belief in nature as having an innate health-providing effect, the biophilia hypothesis, by examining what Norwegian families with young children experience when walking in the forest. Twenty-four conversations with families during a hiking trip in the forest were recorded, and the data were analysed with Giorgis descriptive phenomenological research method. The paper introduces the general descriptive meaning structure of the phenomenon ‘family-hiking with young children’. It shows that a hiking trip clears space for the family in their everyday lives which is largely dominated by relations with non-family members at both work and leisure. The families experience that they actively generate a different existence with a sense of here-and-now presences that can strengthen core family relations and also provide the opportunity to pass down experiences that can be recollected and realized by future generations. This experience is complex and constituted by social practices, which indicate that the biophilia hypothesis seems to be an insufficient explanation of why families go hiking in nature. Nature rather represents a peaceful background that allows for the perpetuation of the family as a social institution and the recreation of cohesion in everyday life.

Self-determination of pupils with intellectual disabilities in Norwegian secondary school

This article examines how the self-determination of pupils with intellectual disabilities is practised in secondary school in Norway and discusses possible challenges connected to this practice. The argumentation builds on the fieldwork of qualitative interviews (N = 55) and participant observations in schools in Norway (pupils 13–16 years old). The pupils attend a variety of educational settings, including ordinary classes at mainstream schools, the department of special education at mainstream schools and special education schools. The study reveals considerable variations in the pupils’ opportunities to practise self-determination. While the self-determination of pupils with intellectual disabilities is rather extensive when it comes to their influence over informal and minor decisions in everyday life at school, it is very limited when it comes to formal and major decisions. Furthermore, the implementation of the pupils’ self-determination is primarily spontaneous and seldom anchored in the pupils’ Individual Education Plans. Such an implementation practice limits the pupils’ opportunities to participate in democratic processes, learning and social interaction.