Living Conditions of People with Intellectual Disabilities : A Study of Health, Housing, Work, Leisure and Social Relations in a Swedish County Population

The general aim of this thesis is to describe mortality, health and living conditions in an administratively defined county population of people with intellectual disabilities born between 1959 and 1974 (N=213). The living conditions of persons with intellectual disabilities were compared with those of the general population. Moreover, the reports of relatives and staff were compared on the living conditions of people with intellectual disabilities. Information on the living conditions of persons with intellectual disabilities was provided by proxy (relative and staff) questionnaire reports and national welfare statistics conducted by Statistics Sweden (SCB). Medical examination and medical case records were used to obtain data on health and medical services. People with intellectual disabilities lived in the community and took part in numerous common recreational and cultural activities. However, the comparison with the general population indicated clear differences in living conditions, particularly regarding employment and social life. In contrast, surprisingly little variation in living conditions was found in people with intellectual disabilities, despite varying ages and a wide range of level of disabilities. In addition, gender related differences of persons with intellectual disabilities were few when compared with those found in the general population. A wide range of physical and mental health problems were identified in the group with intellectual disabilities. Although a majority of persons with intellectual disabilities had access to a family doctor and attended regular health checks, a number of needs of specialist examinations were identified indicating shortcomings in the quality of health care. Analyses indicated differences in the reports of relatives and staff on living conditions of most domains included in the questionnaire. In general, disagreement was higher on subjective than on objective items. Relative and staff responders contribute dissimilar information that is related to varying viewpoints and different types of information

Changes in living conditions of people with ID : a follow-up after 16 years

Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with intellectual disabilities born 1959-1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances and social life. Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with intellectual disabilities in a 16-year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups. Method: Information on the living conditions of people with intellectual disabilities for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with intellectual disabilities including housing, occupation, finances, recreational and cultural activities, family and social relations, society participation, and personal safety. Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with intellectual disabilities. However, no differences related to gender and level of functional limitations were identified within the study group. Discussion:  Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with intellectual disabilities in community-based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with intellectual disabilities share welfare benefits over time

Support in Housing : A Comparison Between People with Psychiatric Disabilities and People with Intellectual Disabilities

The primary objective of this study was to compare type of housing and support in housing in two groups (people with psychiatric disabilities and people with intellectual disabilities) typically dependent on support in everyday life. A second objective was to examine whether type of housing and support in housing were related to gender within the two groups. Information was obtained by available questionnaire reports provided by staff members. The results indicate unequal accessibility of support in housing in relation to the two groups. Moreover, the findings suggest that type of disability is a more determining factor than gender regarding support in housing.

Dietitians’ challenges when consulting to adults with intellectual disabilities

Purpose: The purpose of this paper is to investigate registered dietitians' (RDs) experiences in consulting to adults with intellectual disabilities (ID) in Sweden. Design/methodology/approach: A descriptive study using a study-specific web-based questionnaire was administered, comprising both multiple-choice questions with a space for comments and open-ended questions. The open-ended answers and comments from 53 respondents were analysed with systematic text condensation. Findings: Four categories were identified: RDs' experiences from the first meeting; explanations for late initial contact; the actions taken by RDs; and necessary measures for more sustainable nutrition care. Ten sub-categories described the challenges that RDs experience in more detail. Practical implications: It is necessary to provide adults with ID and their supporting staff with individually tailored nutritional information. Individuals with ID must be actively involved in lifestyle changes that affect their everyday life. The RD must be included in the interdisciplinary team supporting adults with ID. If a new practice is to be implemented, it should be compatible with the existing values of adults with ID and their staff and must be feasible to implement in the everyday life of the individual. Originality/value: This paper identified several barriers that should be overcome in relation to the preparation of RDs for consultation with adults with ID about nutritional health issues. A systematic structure, knowledge about nutrition and knowledge about adults with ID and their living situations are needed. An assessment instrument may meet health promotion needs and facilitate longitudinal follow-ups of nutritional problems

Significant others’ perspectives on experiences of meal-oriented support and diet counselling for adults with intellectual disabilities who live in supported housing

The quality of meal-oriented support for people with intellectual disabilities is important for their health. The aim of the present study was to explore the experiences of meal-oriented support and diet counselling for adults with intellectual disabilities living in supported housing, from the perspective of housing staff and mothers. Five focus group interviews, including nine supporting staff members and nine mothers, were conducted. The interviews were analyzed using systematic text condensation. Five themes appeared; Extensive needs of the individual, Staff skills determine the food intake, Informal caregivers make up for shortage of support, Effective collaboration with a registered dietitian is needed and Responsibility of the organization state that professionalization of staff is needed. Lacking resources, such as time and nutritional knowledge, insufficient considerations of individual needs, and high staff turnover influence the meal-orientated services negatively. This study brings to the fore, staff working practices and the complexity of providing meal-oriented support for people with intellectual disabilities. Staff need skills to perform individually tailored support. This is best accomplished through effective collaboration between housing staff and relatives underpinned by knowledge from a registered dietitian. The working practices must be structured at the organizational level of the services

Older adults’ experiences with mHealth for fall prevention exercise : usability and promotion of behavior change strategies

Background: With the rapidly growing aging population, older adults need to stay healthy andactive for a longer time. Mobile health (mHealth) solutions could help support, prevent, or delayfunctional decline and falls in old age. Purpose: The aim was to explore older persons’ experiences of a mobile application for fallprevention exercise, and to identify what possible behavior change techniques to include in thefurther development of the application. Methods: Two focus groups were conducted with 12 older adults (seven women and five men) 70to 83 years of age. A qualitative content analysis was performed. Results: Two main results emerged: 1) external facilitators for using the application; and 2)internal facilitators for using the application and perceived gains, in addition 10 behavior changetechniques were identified. Conclusion: With support, an application could be adapted for older adults to manage, motivate,and adhere to fall prevention exercise. To achieve long-term adherence to health behaviorchanges, behavior change strategies and techniques are recommended to be included in furtherdevelopment of the fallprevention application

Support in Housing : A Comparison Between People with Psychiatric Disabilities and People with Intellectual Disabilities

The primary objective of this study was to compare type of housing and support in housing in two groups (people with psychiatric disabilities and people with intellectual disabilities) typically dependent on support in everyday life. A second objective was to examine whether type of housing and support in housing were related to gender within the two groups. Information was obtained by available questionnaire reports provided by staff members. The results indicate unequal accessibility of support in housing in relation to the two groups. Moreover, the findings suggest that type of disability is a more determining factor than gender regarding support in housing.