Factors Related to Self‐Rated Participation in Adolescents and Adults with Mild Intellectual Disability – A Systematic Literature Review

Abstract

Background Self-rated participation is a clinically relevant intervention outcome for people with mild intellectual disability. The aim of this systematic review was to analyse empirical studies that explored relationships between either environmental factors or individual characteristics and aspects of participation in young adults with mild intellectual disability. Method Four databases were used, 756 abstracts examined and 24 studies were evaluated in-depth. Results Four aspects of participation were found: involvement, perceptions of self, self-determination and psychological well-being. Reported environmental factors were: social support, choice opportunity, living conditions, school, work and leisure, attitudes, physical availability and society. Reported individual characteristics were adaptive and social skills. Conclusions There is a relative lack of studies of factors influencing self-rated participation and existing studies are difficult to compare because of disparity regarding approaches, conceptual frameworks, etc. For adequate interventions, it seems important to study how profiles of participation are influenced by different patterns of environmental factors and individual characteristics.

Parachute Without a Ripcord: The Skydive of Communication Interaction

“…Measuring participation is complex. Self-rating of perceived participation is important (Arvidsson, Granlund, & Thyberg, 2008) and may inform understanding of personal quality of life indicators.…”

Important aspects of participation and participation restrictions in people with a mild intellectual disability

“…The intention was that the selected ICF items should be relevant to persons with a mild intellectual disability [3,6] and cover the nine domains [9], The selection was based on the authors' considerations concerning clinical rele vance, trying to pay attention to issues used in the Adaptive Behavior Assessment System-II [7] and discussions during clinical implementations of the ICF model and the development of the ICF Universal Code sets for children and youth [7,17,[32][33][34][35][36], The informants were interviewed by the first author, a clinical psychologist with experience from testing and rehabilitation with respect to intellectual disability. The interview was conducted according to the order of appearance in the ICF manual [9,17].…”

“…The ICF emphasizes that the concept of involvement is not automatically equated with performance but that participation should be distinguished from the subjective experience of involvement [9, footnote 14, p. 15]. In clinical practice, it is essential to deal with both the actual performance and the corresponding subjective experience of involvement [2][3][4][5][6]. To handle this, it may be reasonable to include adequate information about the person's perception of relative importance and perceived restrictions [6,15,[17][18][19].…”

“…problems in everyday functioning expressed in conceptual, social and practical skills [1][2][3][4][5]. Furthermore, intellectual disability is associated with participa tion restrictions in common human life activities [2][3][4][5][6][7][8] such as taking part in leisure activities, having a job and relating socially to other people [6].…”

“…In clinical practice, it is essential to deal with both the actual performance and the corresponding subjective experience of involvement [2][3][4][5][6]. To handle this, it may be reasonable to include adequate information about the person's perception of relative importance and perceived restrictions [6,15,[17][18][19]. Accordingly, conceptual frameworks discussed by Nordenfelt [20.21] put forward the need to include an aspect of volition to the ICF participation concept, and empirical studies indicate a need for a third qualifier of functioning operationalized as importance or intensity of the engagement in an activity [15.22] , In rehabilitation practices primarily aiming to improve the ICF aspects of functioning, some subjective aspect of quality of life or general well-being is assumed to be an important additional goal [12], The latter is relevant to include in order to heed the client's perspective as a complement to professional rehabilitation perspectives, which often focus on general ability or performance with regard to a selection of items that are easy to measure and fit well with psychometric standards [4,5].…”