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Emergent voices. Exploring the lived experience of seniors with intellectual disability
- Authors:
- HUTCHINSON Gunn Strand, SANDVIN Johans Tveit
- Journal article citation:
- European Journal of Social Work, 22(5), 2019, pp.738-748.
- Publisher:
- Taylor and Francis
In Norway, as in many European countries, there has been a major change in living conditions for people with intellectual disability over the last 30 years. State policy has changed, involving the reduction of institutional care with the aim of normalising people’s life situations and service provision. A challenge in the early years of reform was a lack of first-hand experiences. Researchers attempting to interview people with intellectual disabilities themselves about moving out of institutions concluded that this was methodologically problematic, as informants tended to answer what they thought was expected of them. While this may also reflect features of the research at that time, many of those with first-hand experiences of the reform have later confirmed that they had but a weak voice of their own. Today, their voices are stronger, and many of them provide important testimonies of the ‘true consequences’ of the reform. This article reveals some of these testimonies. Through in-depth interviews, six people with intellectual disabilities tell about their institutional lives and their present lives in the community. The strongest testimony to the reform is perhaps our informants’ ability to give words to, and reflect on, what was previously just a silent pain. (Edited publisher abstract)
Factors associated with the amount of public home care received by elderly and intellectually disabled individuals in a large Norwegian municipality
- Authors:
- DOHL Oystein, et al
- Journal article citation:
- Health and Social Care in the Community, 24(3), 2016, pp.297-308.
- Publisher:
- Wiley
This study reports an analysis of factors associated with home care use in a setting in which long-term care services are provided within a publicly financed welfare system. The study considered two groups of home care recipients: elderly individuals and intellectually disabled individuals. Routinely collected data on users of public home care in the municipality of Trondheim in October 2012, including 2493 people aged 67 years or older and 270 intellectually disabled people, were used. Multivariate regression analysis was used to analyse the relationship between the time spent in direct contact with recipients by public healthcare personnel and perceived individual determinants of home care use (i.e. physical disability, cognitive impairment, diagnoses, age and gender, as well as socioeconomic characteristics). Physical disability and cognitive impairment are routinely registered for long-term care users through a standardised instrument that is used in all Norwegian municipalities. Factor analysis was used to aggregate the individual items into composite variables that were included as need variables. Both physical disability and cognitive impairment were strong predictors of the amount of received care for both elderly and intellectually disabled individuals. The study identified a negative interaction effect between physical disability and cognitive impairment for elderly home care users. For elderly individuals, results also found significant positive associations between weekly hours of home care and having comorbidity, living alone, living in a service flat and having a safety alarm. The reduction in the amount of care for elderly individuals living with a cohabitant was substantially greater for males than for females. For intellectually disabled individuals, receiving services involuntarily due to severe behavioural problems was a strong predictor of the amount of care received. The analysis showed that routinely collected data capture important predictors of home care use and thus facilitate both short-term budgeting and long-term planning of home care services. (Edited publisher abstract)
‘If we are going to include them we have to do it before we die’: Norwegian seniors’ views of including seniors with intellectual disability in senior centres
- Authors:
- INGVALDSEN Anne Kristen, BALANDIN Susan
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(6), November 2011, pp.583-593.
- Publisher:
- Wiley
The relatively recent increase in the number of aged persons with intellectual disabilities is challenging concepts of inclusion and participation. The aim of this study was to identify senior centre users’ views of the barriers and solutions to the inclusion of seniors with intellectual disability in community senior centres. Thirty seniors (mean age 75.7 years, 23 women) without intellectual disability participated in one of four focus groups. Data were analysed for major themes. These included benefits, perceptions of people with intellectual disability, barriers and solutions to inclusion, need for support and need for information. There appears to be agreement that seniors with intellectual disability could benefit from being a senior centre user. However consideration needs be given to this group’s need for assistance, staff education, economic resources and ways to overcome negative community attitudes towards people with intellectual disability.
Ageing and health status in adults with intellectual disabilities: results of the European Pomona II study
- Authors:
- HAVEMAN Meindert, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.49-60.
- Publisher:
- Taylor and Francis
POMONA II was a European Commission funded public health project collecting information from 14 countries using a set of key health indicators specifically relevant for people with intellectual disabilities. This research focused on age-specific differences relating to environmental and lifestyle factors and the 17 medical conditions measured by the POMONA Checklist of Health Indicators. The article describes how information was collected using the POMONA Health Interview Survey and Evaluation Form from a sample of 1,253 participants in Austria, Belgium, Finland, France, Germany, Ireland, Italy, Lithuania, the Netherlands, Norway, Romania, Slovenia, Spain, and the United Kingdom. It then presents the results of the analysis, with tables showing characteristics of people with intellectual disabilities in the study, frequency of social contacts with relatives or friends according to age, lifestyle risk factors in people with intellectual disabilities according to age, and general and age-specific prevalence rates of health problems. The authors discuss how healthy older adults with intellectual disabilities are with regard to lifestyle factors, and whether there are health disparities between older adults with and without intellectual disabilities. They note that some evidence of health disparities was found for older people with intellectual disabilities, particularly in terms of under diagnosed or inadequately managed preventable health conditions.