Jan Tøssebro

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

Abstract Background POMONA II was a European Commission public health-funded project. The research questions in this article focus on age-specific differences relating to environmental and lifestyle factors, and the 17 medical conditions measured by the POMONA Checklist of Health Indicators (P15). Method The P15 was completed in a cross-sectional design for a stratified sample of 1,253 adults with ID across 14 European member states. Results Older people (55+) were more likely to live in larger residential homes. Rates of smoking and use of alcohol were lower than in the general population but were higher with older age. More than 60% of older adults had a sedentary lifestyle. Cataract, hearing disorder, diabetes, hypertension, osteoarthritis/arthrosis, and osteoporosis were positively associated with advancing age; allergies and epilepsy, negatively associated. Conclusions Some evidence of health disparities was found for older people with ID, particularly in terms of underdiagnosed or inadequately managed preventable health conditions.

Marginalisation processes in inclusive education in Norway: a longitudinal study of classroom participation

The aim of this paper is to describe the classroom participation of primary school children with disabilities who attend regular schools in Norway; to explore how relations between children with disabilities and their environment change, and further to chart how schools act in response to such change. The analyses are based on a life course study with data gathered from interviews and questionnaires given to the parents of children with disabilities born in the period between 1993 and 1995. The results show an increasing marginalisation of children with disabilities who receive their primary school education at regular schools. Despite the fact that public policies in Norway are based on a relational understanding of disability, thus suggesting that educators would make considerable efforts to accommodate children with disabilities in regular schools, the reality is that schools take an individual approach to children with disabilities which reflects a medical understanding of disability.

School placement and classroom participation among children with disabilities in primary school in Norway: A longitudinal study

The purpose of this paper is to address changes in school placement and classroom participation with respect to children with disabilities of primary school age in Norway, as well as examining the factors which explain variation in school placement and classroom participation. School placement refers to whether children with disabilities attend regular school, while classroom participation refers to time spent in regular classrooms at regular schools. The analysis is based on longitudinal data drawn from surveys undertaken in 2003 and 2006, of parents of children with disabilities. Present findings suggest there are no major changes in school placement during primary school years, which is contrary to earlier findings. However, the amount of time children with disability are absent from regular classes does increase significantly as the children become older. Size of municipality population, type of disability and degree of impairment are the main factors which have an impact on school placement. In addition to these, the amount of special education also has an impact on classroom participation. There are small changes in mechanisms that lead children out of both regular schools and classrooms, during their primary school years. However, some of the identified factors strengthen in importance as the children become older. The apparent policy change for older children, from special school placement to an “out of class” practice, is discussed. It could be seen as regular schools’ adaptation to the tension between the prevailing ideology of inclusion and schools’ maintenance of existing practice.

The P15 - a multinational assessment battery for collecting data on health indicators relevant to adults with intellectual disabilities.

BACKGROUND Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. METHODS An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). RESULTS Overall, feasibility, internal consistency and face validity of the P15 was acceptable. CONCLUSIONS With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.

Educational arrangements and social participation with peers amongst children with disabilities in regular schools

The purpose of this study is to examine the relationships between educational arrangements and social participation amongst children with disabilities in regular schools. The analysis is based on data drawn from surveys of parents of children with disabilities, aged 11–13, who attend regular schools in Norway (N = 262). We have explored the relationships between the variables of interest by means of structural equation modelling linear structural relations (LISREL). The results show that (1) the present educational arrangements may hinder social participation with peers and (2) the type of disability and the degree of impairment have no direct effect on the degree of social participation with peers, but only an indirect effect via educational support and classroom participation. These findings suggest that if children with disabilities are equally entitled to have the opportunity of gaining the same social benefits as their peers, then regular schools should be careful not to segregate them from their peers in mainstream school activities.

Exploring the Experiences of “Not Being Listened To” from the Perspective of Parents with Disabled Children

Several studies report that parents of children with disabilities complain about professionals ignoring the parents’ view and understanding of the childs needs. The aim of this paper is to explore the parents’ experience of not being listened to from their own perspective. Findings are based on a longitudinal study including qualitative interviews with parents of 31 children with different types of impairments in pre-school (1999) and early school years (2002). Incidents where parents reported “not being listened to” were distinguished according to different types of conflicts or disagreements: (1) problem-defining; (2) gate-keeping; and (3) jurisdiction. The underlying problem as viewed by the parents was that their knowledge was not valued. Dilemmas and obstacles towards practising user-participation in parent–professional relationships are discussed. The findings suggest a necessity of negotiating partnership, as well as a more humble approach towards parents.

Sampling and ethical issues in a multicenter study on health of people with intellectual disabilities

OBJECTIVES To study health inequalities in persons with intellectual disabilities, representative and unbiased samples are needed. Little is known about sample recruitment in this vulnerable group. This study aimed to determine differences in ethical procedures and sample recruitment in a multicenter research on health of persons with intellectual disabilities. Study questions regarded the practical sampling procedure, how ethical consent was obtained in each country, and which person gave informed consent for each study participant. STUDY DESIGN AND SETTING Exploratory, as part of a multicenter study, in 14 European countries. After developing identical guidelines for all countries, partners collected data on health indicators by orally interviewing 1,269 persons with intellectual disabilities. Subsequently, semistructured interviews were carried out with partners and researchers. RESULTS Identification of sufficient study participants proved feasible. Sampling frames differed from nationally estimated proportions of persons with intellectual disabilities living with families or in residential settings. Sometimes, people with intellectual disabilities were hard to trace. Consent procedures and legal representation varied broadly. Nonresponse data proved unavailable. CONCLUSION To build representative unbiased samples of vulnerable groups with limited academic capacities, international consensus on respectful consent procedures and tailored patient information is necessary.

Negotiating individual accommodation in higher education

This article discusses ways of understanding the processes involved when disabled students negotiate accessibility in higher education. Despite legislation for universal design and political aims to increase the number of disabled students, individuals themselves have to take initiatives to obtain needed reasonable adjustments. Findings are drawn from a study of everyday lives of disabled students. Research methods employed were: time geographic diaries, in-depth interviews and focus groups. Findings include issues of disclosure and stigma management, supports provided with a twist of ambiguity, and experiences of combatting for individual accommodation. The process of negotiation is discussed in terms of traditions in higher education, the burden individual accommodation in practice place upon disabled students, and the need for changes based on universal design.

Disability measurements: impact on research results

Abstract This article addresses the issue of whether the choice of operational definition of disability in survey research affects findings. Earlier studies have shown that different definitions cause substantial variation in prevalence rates, as well as limited agreement on the classification of subjects as disabled or not disabled. The article addresses whether this leads to differences in research outcomes. The study compares seven existing measurements of disability. The analysis is carried out using a single dataset; the 2007 survey of disabled peoples living conditions in Norway (N=1652). Results are reported for subject descriptors (gender, age, marital status, characteristics of impairment), social indicators (education, income and employment), and predictors of income and employment. The impact of the definition of disability on results is found to be modest in general but with exceptions: The definition of disability clearly affects employment rates and the type and degree of impairment of peop...

Family attitudes to deinstitutionalisation: Changes during and after reform years in a Scandinavian country

Abstract Background Research shows that many families initially oppose relocation from institutions to community care, but also that a majority change their mind after resettlement. The paper addresses the question of whether this post‐resettlement preference for community services is only short‐term or likely to last. Method Data were gathered at three points in time on people resettling from institutions in Norway: before resettlement (1989/90), shortly after resettlement (1994/95), and about ten years after resettlement (2001). Participants in 1989/90 and 1994/95 were identical (N = 222, aged 18–67 in 1989). The 2001 sample was different (N = 176, aged 20–67). Data gathering consisted of interviews with staff and a postal questionnaire to families. Results In 1989/90, only 17% of families preferred community care, while in 1994/95 and 2001 respectively, 73% and 76% of families preferred community care. Conclusions The preference for community care appears not to be short‐term. The question of empowerment/choice associated with the pattern of change from before to after resettlement is briefly discussed.