Accessible abstract

This paper is about a study in which five persons with intellectual disabilities used technology for better living. The technological tools they got were an Ipad, tablet, remote control and a Memoplanner. A Memoplanner is like a diary. The technology was used to know what was going to happen, and for entertainment. The technological tools were also used for communication and to choose what to do. The participants were satisfied with the technology. It made them more independent, and more self-determined. It is important that staff helps with the technology.

Abstract

Assistive technology aims to increase the possibilities for independence and participation in daily life. Although there has been an increase in studies on assistive technology for persons with intellectual disabilities, few studies have included persons with little or no speech as informants. Five persons with intellectual disabilities and little or no speech were interviewed about their experiences with such technology, supported by symbols, pictures and familiar persons as interpreters. The study had an inclusive approach, where one person with an intellectual disability participated as a co-researcher throughout the study. Data was analysed using simple content analysis. The results show a high degree of user satisfaction. The technology was used in many of the daily activities. Assistive technology has promoted predictability, self-determination, autonomy and age-appropriate activities. The project has an inclusive design, and the research team consisted of one co-researcher with intellectual disability and two researchers.

Background: The Norwegian health and care authorities expect the contributions from family caregivers and volunteers in the care for home-dwelling older adults to be kept up or increased in the years to come. In this article we explore the potential for informal care based on the demographic development from 2018 to 2040.

Methods: We used population numbers from 2018 and Statistics Norway’s population projections 2018-2040 to estimate the UN family caregiving coefficient (persons in the age groups 50-66/85+), the inverse old-age-dependency ratio (persons aged 16-66/67+), and the ratio of younger senior population (67-79)/older senior population (85+) until year 2040 in a sample of 49 Norwegian municipalities. We also examined the correlation between the three coefficients and the municipalities’ size and degree of centrality.

Results: We found a significant drop in the family caregiving coefficient in all municipalities from 2018 to 2040 (largest drop in the smaller municipalities). The inverse old-age-dependency ratio dropped in nearly all municipalities towards 2040, and the drop was largest in the smaller municipalities. For all municipalities, we found that the ratio of younger senior population/older senior population dropped markedly towards 2040, but this ratio was only weakly correlated with municipality size (largest drop in the smaller municipalities). For all three ratios, we see a gradual drop from the most central to the less central municipalities.

Conclusion: The authorities’ expectations of maintained or increased informal care are based on insufficient demographic assumptions. The demographic development is a crucial part of the knowledge base on which future policies for family caregivers and volunteers must be based.

This article examines the experiences of care staff with decision-making in daily care practice with people with profound intellectual disability living in residential accommodation. Three focus groups comprising a total of 19 service providers were undertaken in three different municipalities. A theme-centered analysis method inspired by systematic text condensation has been conducted. Our analysis revealed the following: (1) service providers express a lack of knowledge about decision-making; (2) embodied communication and knowledge about the other is crucial; (3) decision-making practices are closely related to daily life; (4) the service providers experience a high degree of uncertainty in decision-making practices, and (5) procedures and administrative structures challenge the supported decision-making practices. Existing research and policy guidelines emphasize the person’s cognitive and rational functions. This study provides knowledge about how supported decision-making in care practices is based on embodied knowledge and is embedded in daily care work. In addition, it points to how supported decision-making is both a complex and challenging task, followed by uncertainty and risks for misunderstandings. Care staff’s decision support in caring practices with people with profound intellectual disability is about ensuring basic human rights every day.

Background: Patients’ sense of security is a central aspect of quality. The study explores how patients in late palliative phase, living at home, perceive the relation between the importance of security with palliative care, and their experiences of security with the care they actually received.

Method: Sixty patients answered a modified version of «Quality from the Patient’s Perspective» (44 questions). The questions cover three dimensions: medical-technical competence, physical-technical conditions, identity-oriented approach, and four aspects: knowledge, continuity, coordination/cooperation, availability. Descriptive analysis and Wilcoxon’s signed rank test were conducted.

Results: The patients reported that the care was both of «very great importance» and «totally secure» with respect to the care received for the dimension medical-technical competence and nine questions within medical-technical competence, physical-technical conditions, identity-oriented approach and coordination/cooperation. They perceived continuity, symptom relief and information about prognosis as «fairly insecure». Significant differences between importance of care (highest) and perceived security (lowest) are shown in several questions dealing with the personnel’s medical-technical competence, knowledge and identity-orientation, the service’s continuity, coordination/cooperation and accessibility.

Conclusion: The study shows congruence between patients’ perceptions of the importance of palliative care, and their sense of security with the care they actually received, but also the need for quality improvement in all dimensions and aspects. The security aspects of continuity, symptom relief and information about prognosis should be prioritised because they show «fairly insecure» and significant differences.

In this article, we examine home-based care services for people with intellectual disabilities and discuss how service providers experience various cross-pressures between infection control and independent daily lives during the first Corona lockdown. Our article is based on a qualitative interview study including 19 service providers at municipal home care services by applying collective qualitative analysis. Our study indicates that the individuals’ right to infection control measures can represent unreasonable limitations considering the right to an independent, active and meaningful life for persons with intellectual disabilities. This new practice may imply new forms of «institutionalization».