Betydelse av erhållet särskilt stöd för livsvillkor och eget välbefinnande

The significance of received targeted support for living conditions and self-perceived health

Importance of personal assistance financed by the Swedish social insurance for meeting national health objectives for men and women with serious functional impairment

Participants: Ieva Reine, Heléne von Granitz, Edward Palmer, Karin Sonnander
The aim of this project is to analyze the significance of the state assistance benefit for the wellbeing and health of people with state personal assistance. A direct relationship is drawn to the public health objectives and the project is conducted with a gender perspective. The study is based on national cohorts from 2010 to 2015 and contains a large number of analysis variables, such as demographic and health variables, in-cluding health-related selection, participation and empowerment, labor market participation and economic factors. Identification of the mechanisms that explain the relationship between personal assistance and self-perceived health is central to the analysis

Implementing legally secured governance of individual rights: Does the exercise of discretion in the decision-making process of granting assistance allowance for personal assistance fulfil the intentions of the LSS Act?

Participants: Heléne Wernöe von Granitz, Karin Sonnander, Ieva Reine, Ulrika Winblad
The Swedish disability policy express the vision of a community based on diversity, designed to allow people with disability of all ages to participate fully in society with equal opportunities. The ambition of the policy is strongest outlined in the LSS Act, concerning Support and Service for Persons with Certain Functional Impairments (1993:387). The LSS Act aims to guarantee good living conditions for the users, by stringent requirements to meet individual rights and covers a wide range of user groups with regard to age, disability and severity of needs. The Act frames an ambitious reform of fulfilling disability rights and has been described as the prime political tool to strengthen citizenship of persons with disability in Sweden. There is however a lack of knowledge about the extent to which personal assistance meets the intentions set out in the LSS Act, i.e., if the support given promotes participation in society on equal terms or con-tributes to health and wellbeing of the user. Further on, the exercise of discretion in the decision-making process of granting assistance allowance for personal assistance is known to be difficult. This seems to be partly due to inadequate administrative guidelines, which has raised issues of legal security. The project thus derives from these two perspectives; to examine if the support received corresponds to the intentions set out in the LSS Act and secondly to what extent the intentions of the LSS Act are met in the decision-making process in granting assistance allowance for personal assistance. Overall, the project aims to pro-vide improved knowledge of the conditions for the government to implement social reforms and to fulfil disability rights.

Changes in living conditions of people with intellectual disability:
a follow up after 15 years

Participant: Õie Umb-Carlsson
One aim of the Swedish disability policy is to promote equality in living conditions for people with disa-bilities and people without disabilities. National statistics illustrate annual changes in the population´s liv-ing conditions but do not allow the disclosure of people with intellectual disabilities. Special studies are therefore necessary.
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 comparison showed that people with intellectual disabilities had worse living conditions compared to that of the general popu-lation.
The aim of this project is to conduct a 15-year follow up of living conditions of people with intellectual disabilities and compare with those of corresponding age groups in the general population. Another aim is to explore experience of living conditions of people with intellectual disabilities and to compare with gen-eral populations´ perception of their living conditions.
The study group consists of 110 people who participated in the Uppsala study in 2001. Information on the living conditions of people with intellectual disabilities will be obtained by relative and staff question-naire reports and interviews with people with intellectual disabilities. A study specific questionnaire is developed based on the questionnaire used in the 2001 study. The questionnaire includes six domains: housing, employment and daily activities, finances, recreation and culture, family and social relations, and personal safety. For the interviews, people with intellectual disabilities will prepare an interview guide. Thereby the guide will be based on the perspective of those in question regarding what counts as important and relevant to focus. It also increases the possibility that many people understand the issues and are able to provide answers.
National welfare statistics will be used to collect data on the general population. In addition to a compari-son between people with intellectual disabilities and the general population information concerning the living conditions of people with intellectual disabilities will be analyzed across gender, age and disabili-ties. This project reveals similarities and differences that are important to identify in a diversity perspec-tive. This is of particular importance because people with intellectual disabilities should have the oppor-tunity to live like others and be included in the community.

Nutritional support for people with intellectual disabilities

Participants: Päivi Adolfsson, Õie Umb-Carlsson, Pia Ek
The purpose of the project is to investigate how dieticians work with and provide nutritional support to people with intellectual disabilities and to develop an instrument for the diet-related health to be used in community residences for persons with intellectual disabilities.

Promoting a healthy lifestyle for adults with intellectual disabilities

Participant: Õie Umb-Carlsson
One aim of the Swedish public health policy is to promote societal preconditions for good health on equal terms for the entire population. A large part of health problems are among people with disabilities. Sev-eral health problems are related to disability but in many cases affected by lifestyle such as unhealthy eat-ing habits and sedentary leisure.
It is essential that both staff providing support in housing and people with disabilities have knowledge about diet and other health issues as well as the fitness activities available.
The aim of this study is to evaluate how a health promotion intervention influences staff knowledge and way of working, as well as health literacy and lifestyle of the people living in a group home. The health promotion is inspired by the programme "Health promotion in community residences for people with in-tellectual disabilities" developed in Stockholm county and consists of four competence-enhancing parts: (1) a course for day staff in the group home, (2) appointment of a health ambassador among the staff, (3) a course for people with intellectual disabilities living in the group home, and (4) fitness activities for people with intellectual disabilities living in the group home. The intervention will be conducted during one year (spring 2016-spring 2017).
The study sample comprises day staff (n=6) and people with intellectual disabilities (n=5) in a group home in a city in Sörmland county.
Quantitative data on changes in fitness activities, diet and other health related issues (e.g. weight and blood pressure) will be obtained by study specific measures. In addition, two focus groups will be created, with staff and people living in the group home respectively, in order to evaluate the experiences of partic-ipating in the project.
The project will contribute to the scarce knowledge of health promotion interventions for people with in-tellectual disabilities and may be used in the development of health promotion environments in group homes.

Men and women with intellectual disabilities and quality of life

Participants: Õie Umb-Carlsson, Päivi Adolfsson
Quality of Life (QoL) has become an important outcome in evaluations of services and support for people with intellectual disabilities. Models and measures are typically based on the perspectives of professionals and researchers and are thus developed at a distance from those in question. Including people with intel-lectual disabilities as active parts in the research process and taking the starting point in their views may broaden our understanding of QoL and help us find adequate criteria for assessing QoL.
The Uppsala QoL (UQoL) model describes QoL from the perspective of people with intellectual disabili-ties through individual interviews. UQoL is build-up of a general essence (well-being) and five hierarchi-cally ordered themes (adult social status, control of life, personal safety, social belonging and self-chosen solitude).
This project aims to examine the UQoL model regarding its inherent component parts and explore the in-terrelatedness and boundaries between the building component parts. A qualitative research approach was chosen. Four focus groups (n=30) were created with people with mild and moderate intellectual disabili-ties in different life stages and situations. Each group discussed and reflected on the prerequisites for QoL in various life domains.
The study will contribute to the understanding of the concept QoL from the perspective of people with intellectual disabilities. Thus, the point of departure of the UQoL model is the users´ perspective rather than user perspective as perceived by professionals and researchers.