Factors related to self-rated participation in adolescents and adults with mild intellectual disability: a systematic literature review

Authors:
ARVIDSSON Patrik, GRANLUND Mats, THYBERG Mikael
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 21(3), May 2008, pp.277-291.
Publisher:
Wiley

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. Four databases were used, 756 abstracts examined and 24 studies were evaluated in-depth. 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. The review concludes 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.

Extended abstract:
Author

ARVIDSSON Patrik; GRANLUND Mats; THYBERG Mikael;

Factors related to self-rated participation in adolescents and adults with mild intellectual disability: a systematic literature review.

Journal citation/publication details

Journal of Applied Research in Intellectual Disabilities, 21(3), May 2008, pp.277-291

Summary

Twenty-four studies (qualitative, quantitative and mixed-method) are reviewed. People with mild intellectual disabilities themselves relate their experience of participation in everyday life in terms of involvement or a sense of belonging, perceptions of self, self-determination and psychological well-being. External observers identify a range of environmental factors and individual characteristics as having an influence on participation. Although of good quality, the variability of the studies makes comparisons difficult and suggestions for future research are offered.

Context

The International Classification of Functioning, Disability and Health (ICF) views participation as involvement in specific life situations, and distinguishes it from the skills needed to perform different activities and from the emotional sense of belonging. At the practical level, the assessment of participation in people with mild intellectual disabilities is often conducted by observers (parents, carers etc.) but more meaningful information may be provided by individuals themselves whenever they are able to communicate. This review accordingly examines self-rated participation and the environmental, physical, personal and activity skill factors that might influence it.

Methods

What sources were used?
The following databases were searched: PsycINFO; Medline; CINAHL (Cumulative Index to Nursing and Allied Health Literature); and ERIC (Education Resources Information Center). In addition, three key journals were searched between 1999 and April 2005: Journal of Applied Research in Intellectual Disabilities; Mental Retardation; and Journal of Intellectual Disability Research.

What search terms/strategies were used?
The search terms were developed through discussion and tested in several pilot searches. The same strategy was used in each database and consisted of two sets of terms describing the target group and the outcome of interest, i.e.

(intellectual disability OR learning disability OR mental retardation)
AND
(participation OR adaptive behaviour OR adaptive functions OR adaptive functions OR autonomy OR independence OR self-determination OR self-efficacy OR locus of control OR practical intelligence OR activities of daily living).

What criteria were used to decide on which studies to include?
Eligible studies reported empirical research in English language, peer reviewed journals between 1999 and 2005. Studies had to focus on people in the age range 15-40, with mild intellectual disability. Full inclusion/exclusion criteria are available from the lead author and were developed on the basis of studying 170 abstracts from the pilot searches.

Who decided on their relevance and quality?
The initial searches delivered 756 abstracts, which were examined by the first author to select any that included at least one participation factor and one other identifiably relevant factor. Of the 156 that remained after this process, 150 were acquired in full and further subjected to the inclusion/exclusion criteria. The first and second authors examined 50 of these independently (0.96 inter-rater reliability), after which the first author applied the criteria to all 150. Reasons for the exclusion of 127 of these are summarised in Table 1.

The final set of studies was assessed using the EPPI-Centre review method to weight the evidence in relation to trustworthiness; appropriateness of design, method and analysis; and relevance of focus in relation to the aims of the review. A proportion of the studies was examined independently by the first two authors (inter-rater reliability 0.8), after which the remainder were examined by the first author. The application of the method is described in detail.

How many studies were included and where were they from?
Twenty three qualitative, quantitative and mixed-method studies identified by the searches, plus one identified for journal hand searching, were reviewed. They were conducted in the UK (6), USA (6), Australia (3), Israel (2), Sweden (2), Canada (2), France (1), the Netherlands (1) and Japan (1). Table 4 summarises the characteristics of the studies and their weight of evidence ratings.

How were the study findings combined?
The variety of approaches, definitions and methods used in the studies precluded synthesis of relationships between self-rated participation and potentially influential factors. ‘Instead, reported relations from each study were described briefly.’

Findings of the review

The quality of the studies is described as high, but differences in conceptual frameworks, the variables studied and other factors make comparisons difficult.

Self-rated factors influencing participation
Individuals themselves identified the following factors as affecting their participation in life situations: a sense of belonging in the community, social network or support process; perceptions of self, including personality factors such as self-esteem and self-efficacy; self-determination, including autonomy, independence and self-empowerment; and psychological well-being as expressed in lifestyle satisfaction.

When self-reported aspects of everyday functioning are studied, ‘environmental factors and complex individual characteristics such as social and adaptive skills seem to be more important than specific cognitive factors.’ Overall, the results suggest that adults with mild intellectual disabilities ‘are competent in making nuanced descriptions of their experienced participation in different life areas.’ They also suggest that self-rated participation is a relevant measure of clinical outcome, at least as a complement to the ratings of participation by outsiders.

Factors rated by others
These included individual factors and environmental factors perceived by observers such as carers, relatives and professionals to influence the participation of those with mild intellectual disabilities. Individual factors that have been studied include adaptive skills, social skills, physical health, age and gender. Environmental factors include social support from significant individuals or social networks; living conditions; school or work conditions; life choice opportunities; attitudes, both on the part of the individual (e.g. awareness of stigma) and those around them (e.g. employers); the physical availability of participation opportunities; and wider social factors relating to policy and resource provision. However, because researchers have discussed these factors in relation to different aspects of participation, ‘it is difficult to analyse to what extent the conclusions of one study are supported by the other studies.’

Authors' conclusions

One of the reasons for the development of the ICF was to address the variability of research in this field and to provide a unifying conceptual framework. ‘It would probably be easier to compare the results from different studies if, for example, research questions, conceptual frameworks, studied variables and conclusions were discussed in terms of the ICF as far as possible.’

The relative lack of studies of self-rated participation is noted, and the importance of covering both environmental factors and individual characteristics in future studies is emphasised. Person-based approaches that focus on how different patterns of environmental and individual factors influence the profile of participation as experienced by an intellectually disabled person may be a useful way forward to providing evidence on which intervention strategies might be based.

Implications for policy or practice

None are discussed
Subject terms:
learning disabilities, participation, social inclusion, young people, adults, behaviour, environmental factors;
Content type:
systematic review
Link:
Journal home page
ISSN online:
1468-3148
ISSN print:
1360-2322

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