To Örebro University

In Swedish special service housing, support staff are expected to translate rights-based ambitions concerning autonomy and participation into everyday support. In practice, this work often involves negotiating self-determination alongside concerns about protection, routines and organisational responsibility. This study aimed to explore and describe how support staff understand and enact their role in promoting autonomy and participation. A phenomenographic design was employed. Semistructured interviews were conducted with 12 support staff members working in nine publicly operated special service housing settings across seven municipalities in mid-Sweden. The analysis identified three interrelated ways of understanding this role: supporting a functioning everyday life as a basis for autonomy and participation, enabling autonomy without becoming controlling and working relationally within organisational conditions. Across the categories, autonomy was described as something worked out in everyday interactions: by asking, waiting, encouraging, adapting support and responding to organisational limits. The findings indicate that autonomy-promoting support depends on staff judgement, continuity, team reflection and organisational flexibility.

Background: Participation and functioning are fundamental human rights, but individuals with intellectual and developmental disabilities( IDD) are more often excluded from essential life areas compared to peers without disabilities. Participation restrictions can be operationalised as problems to be involved in important everyday situations. Self-rated participation restrictions is considered reflective of people’s perceived disability across different life situations. For individuals with IDD, cognitive functioning, including aspects of time management skills, have a critical role in participation restrictions and have shown improvement through the 10-session group intervention Let’s Get Organised-Swedish version (LGO-S). The present study aimed to explore changes in self-rated participation restrictions in adults with IDD after undergoing the LGO-S intervention.

Method: A cross-sectional and pre-post non-controlled study included 16 persons with IDD, five with intellectual disability, and eleven with autism (10 women, 6 men, mean age = 28.4 years). Data was collected pre-/post-intervention and at 12-month follow-ups with Participation Questionnaire-short version, conducted as a structured interview assessing participation in 35 different life situations.

Findings: Post-intervention at the group level, there was a 22% decrease in life situations rated as restricted, and from pre-intervention to 12-month follow up, this decrease was 30%. Post-intervention, there were 23 situations rated as less restricted, and 13 of these stayed less restricted at 12-month follow-up (e.g. Taking part in discussions, Using bus or train, Managing diet, and Handling money). At 12-month follow-up, 19 situations were rated less restricted and 11 of these were rated more restricted post-intervention (e.g. Getting in time, Relating with friends or parents, Engaging in culture, and Visiting restaurants, cafés or cinema).

Conclusions: Interventions targeting time management skills can bring about changes in participation restrictions across various life situations. However, further and controlled studies are needed to gain a more robust understanding of the relationship between the intervention and changes in participation restrictions.

Background: Social vulnerability, sometimes called gullibility (i.e., an individual’s susceptibility to manipulation and victimization), is a significant concern for adults with intellectual disabilities (ID). However, there is a lack of consensus on its definition and measurement, hindering effective interventions and abuse prevention. This contribution synthesizes the results of two research studies conducted in Sweden and Switzerland that explored social vulnerability in adults with ID. By comparing data from these studies, we aim to address theoretical and methodological questions about what social vulnerability entails and how it should be measured.

Method: Twenty-nine Swiss participants (mean age: 29.1) completed the ‘Test of Social Vulnerability’ (TV-22), containing 22 items, each describing specific risky scenarios. Forty Swedish participants (mean age: 24.1) completed ‘A Measure of Social Vulnerability’ (SV-15), containing 15 items encompassing concrete situations and general risky scenarios. Both groups underwent self-ratings/structured interviews and measures related to participation in everyday activities, adaptive behaviour, and IQ.

Findings: Both studies found that greater participation in everyday activities is associated with reduced social vulnerability. The Swiss study found no correlation between social adaptive behaviour and social vulnerability, while the Swedish study showed a strong negative correlation. The Swiss study found a moderate association between social vulnerability and IQ, but no such association was found in the Swedish study. In the TV-22, the vulnerability ranged between 3-45% for each item; for the SV-15 this range was 19-69%.

Conclusions: The similarity between the studies, showing that participation in everyday activities is associated with reduced social vulnerability, highlights the potential of a standardised definition/measurement in, e.g., developing prevention programmes. The differences between the two studies, e.g., differences in the role of IQ and adaptive behaviour, emphasise the need for further research to deepen the understanding of social vulnerability and reduce the susceptibility to victimisation in adults with ID.

Purpose: This Round Table will provide a forum for researchers and practitioners to discuss issues of elder maltreatment for people with intellectual and developmental disabilities (IDD) to help promote a better understanding of elder maltreatment’s risk and protective factors and its prevention. The inputs provided by participants will allow for ane xamination of the definition and measurement of elder maltreatment with attention to specific forms of vulnerabilities to maltreatment that are more commonly associated with aging, such as financial exploitation, participation restrictions and social exclusion. The risk and protective factors to elder maltreatment at individual (e.g., memory, decision making), interactional/societal (e.g., role of trusted others, caregiver training), and contextual levels (e.g., ageism, protections available, resources, health care collaboration) will be identified. The physical and mental health consequences of maltreatment, the prevention and intervention needs, and the development and implementation of research-informed training strategies for building individual abilities for active prevention of maltreatment will also be discussed.

Rationale: Individuals with IDD represent a fast-growing segment of the population of older adults. The phenomenon of aging for older adults with IDD is extremely complex, with chronic age-related impacts on functioning and greater dependency on others. Research documents high rates of maltreatment worldwide. Despite increasing awareness of elder maltreatment as a growing social problem, the understanding of elder maltreatment for older adults with IDD is still limited, particularly around effective measures to prevent or reduce the harmful consequences of maltreatment.

Summary: The discussion will provide an improved understanding of the issues of elder maltreatment and challenges for older adults with IDD by sharing research and clinical perspectives. It will help identify key priorities in research and practice aimed at risk mitigation of maltreatment in older adults with IDD while fostering a greater commitment to providing essential identification and prevention resources in this important area.

Background: Individuals with intellectual disabilities (ID) are more vulnerable to experiencing abuse in interpersonal social situations compared to the general population. ESCAPE-NOW (Effective Strategy-Based Curriculum for Abuse Prevention and Empowerment for Individuals with Developmental Disabilities-NOW) is an American group intervention where individuals with ID learn to understand and manage the risk of abuse, using an active prevention-focused decision-making framework. This study aimed to evaluate ESCAPE-NOW in a Swedish context.

Method: ESCAPE-NOW (12 sessions) was implemented within a Swedish adult habilitation centre. A single-group design (n=4) with basic descriptive statistical analyses was used to evaluate changes in decision-making abilities in social situations (Decision-Making Scale), general well-being (one-item, self-rated on a 5-point Likert scale), and participation in everyday life (Self-Rated Participation). All outcomes were measured pre-, post- and three weeks after the intervention. Well-being was also measured at every session. After every session, the group leaders reflected on the implementation and content analysis was used to describe the feasibility of the implementation from their point-of-view.

Findings: The analyses indicated increased social decision-making abilities, 5-8 points higher (of 30) for all participants. General well-being decreased during the first intervention sessions, improved towards the last sessions, and was, on average, 1 point higher (of 5) three weeks after the intervention compared to pre-intervention. Participation problems decreased by 3-5 activities (of 13) for three participants. Qualitative content analysis found two themes of appropriate adaptations, one based on the participants’ cognitive/neuropsychological levels, and one targeting a complex profile of cognitive/neuropsychological functioning.

Conclusions: This study’s results align with previous efficacy studies, suggesting that ESCAPE-NOW is also applicable in a Swedish context. The changes in social decision-making abilities particularly support this conclusion. The intervention’s adaptability to varying cognitive challenges is also a strength. However, due to the small sample size, further extensive and controlled studies are necessary for conclusive results.

Purpose: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability.

Method: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being.

Results: Rankings of performance highlighted about the same items as "important participation", while rankings of low performance addressed quite different items compared with "important participation restriction". Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = -0.56) and low performance/high importance (important participation restriction; r -0.55).

Conclusions: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

The overall aim of this doctoral thesis was to explore an assessment of participation according to the International Classification of Functioning, Disability and Health (ICF) in people with a mild intellectual disability.

Study I used secondary data and explored how participation can be assessed. Study II-IV explored participation empirically regarding 68 everyday activities from all nine life domains according to the ICF. Study II explored assessment of self-rated participation by investigating to what extent perceived ability, actual performance and perceived importance correlated. Study III-IV explored the contribution of perceived importance to an assessment of participation; study III by investigating frequencies of everyday activities regarding performance and importance separately as well as regarding combined measures of performance and perceived importance, and study IV by comparing proxy ratings with self-rated measures regarding ability and measures of participation. Study III also correlated measures of participation with a single-item measure of subjective general well-being and study II and IV investigated internal consistency in terms of Cronbach’s alpha. Study II and III included 55 and 69 individuals with intellectual disability respectively. Study IV included 40 individuals with intellectual disability and 40 proxy persons. The informants from the target group were partly the same.

Study II and IV supported the suggestions from study I that participation should be assessed by self-ratings and study II found that this is an appropriate method also to people with a mild intellectual disability. Study III showed that participation is related to subjective well-being. Study III-IV found somewhat different results if measuring participation as performance solely or as a combination of performance and perceived importance. Overall, the results of the thesis suggest that performance solely might be sufficient to assess participation at a group level but in a clinical context, when the knowledge of a certain individual is of interest, the perceived aspect of involvement is necessary to include in an assessment of participation.

OBJECTIVE: This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions.

DESIGN: Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component.; RESULTS: Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did.

CONCLUSIONS: The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

Objective: To explore internal consistency and correlations between perceived ability, performance and perceived importance in a preliminary selection of self-reported items representing the activity/participation component of the International Classification of Functioning, Disability and Health (ICF).

Design: Structured interview study. Subjects: Fifty-five Swedish adolescents and adults with a mild intellectual disability.

Methods: Questions about perceived ability, performance and perceived importance were asked on the basis of a 3-grade Likert-scale regarding each of 68 items representing the 9 ICF domains of activity/participation.

Results: Internal consistency for perceived ability (Cron-bach's alpha for all 68 items): 0.95 (values for each domain varied between 0.57 and 0.85), for performance: 0.86 (between 0.27 and 0.66), for perceived importance: 0.84 (between 0.27 and 0.68). Seventy-two percent of the items showed correlations >0.5 (mean =0.59) for performance vs perceived importance, 41% >0.5 (mean =0.47) for perceived ability vs performance and 12% >0.5 (mean =0.28) for perceived ability vs perceived importance.

Conclusion: Measures of performance and perceived importance may have to be based primarily on their estimated clinical relevance for describing aspects of the ICF participation concept. With a clinimetric approach, parts of the studied items and domains may be used to investigate factors related to different patterns and levels of participation, and outcomes of rehabilitation.