Review article (meta-analysis)
A Systematic Review of Instruments Assessing Participation: Challenges in Defining Participation

Presented as a poster to Werkgroep Epidemiologisch Onderzoek Nederland, EMGO Institute for Health and Care Research, VU Medical Centre, June 11–12, 2009, Amsterdam, The Netherlands; and the International Society for Quality of Life Research, October 22–25, 2008, Montevideo, Uruguay.
https://doi.org/10.1016/j.apmr.2011.01.006Get rights and content

Abstract

Eyssen IC, Steultjens MP, Dekker J, Terwee CB. A systematic review of instruments assessing participation: challenges in defining participation.

Objectives

To evaluate: (1) whether instruments which intend to measure participation actually do and (2) how frequently specific aspects and domains of participation are addressed.

Data Sources

A systematic search was performed in PubMed.

Study Selection

Included were patient-reported instruments that primarily aim to measure participation.

Data Extraction

The full-text instruments were extracted from the articles or obtained from the authors. Two reviewers independently rated each item of the included instruments as measuring participation (yes, no, or undetermined). For each item, the specific aspect and domain of participation were categorized.

Data Synthesis

Included were 103 instruments (2445 items). Of the included items, 619 items concerned participation and 217 concerned undetermined items. In total, 68 instruments contained at least 1 (sub)scale with 50% or more participation or undetermined items. The participation items referred to the participation aspects: participation problems (53%), participation accomplishment (31%), and satisfaction with participation (9%). The domains of the participation items concerned: work/study (27%), social life (27%), general participation (19%), and home (11%). The undetermined items mainly referred to domains about leisure (43%), transport (26%), and shopping (12%).

Conclusions

According to our working definition of participation, most instruments that aim to measure participation do so only to a limited extent. These instruments mainly assess aspects of participation problems and participation accomplishment. The domains of participation covered by these instruments primarily include work/study, social life, general participation, home, leisure, transport, and shopping.

Section snippets

Defining Participation

Our definition of participation is based on definitions found in the literature.7, 8, 9, 11, 12 We defined participation as performing roles in the domains of social functioning, family, home, financial, work/education, or in a general domain. First, activities were distinguished from participation by stating that participation requires a social context, involving not just an environmental factor, but mainly involving other people. For example, we considered visiting friends as participation,

Screening Abstracts and Articles

The reviewers screened 4967 abstracts and 320 full-text articles including 222 instruments. Selected were 189 articles on 112 instruments that measured participation according to the authors of the included articles. The participation items were classified for 103 instruments because 9 instruments could not be retrieved. The selection process of abstracts and full-text articles is described in figure 1.

Number of participation items in the selected instruments

The 103 selected instruments contained 2445 items. Of the selected items 619 (25%) items were

Extent to Which Participation Items and Instruments Measure Participation

Based on a review of relevant literature, we used a definition of participation which was shared between the 2 raters and classified 25% of the items in our review as addressing participation, 66% as not addressing participation, and 9% of the items as undetermined items. According to our working definition of participation, only a few instruments (the Activity Participation Questionnaire [APaQ], the Global Assessment of Functioning [GAF], and the Personal and Social Performance [PSP] scale)

Conclusions

Our review shows that, according to our working definition of participation, most instruments that aim to measure participation do so only to a limited extent. Instruments differ in their content and operationalization of the concept participation. Most participation domains concerned the domains of work/study, social life, general participation, and home; fewer items concerned the domains family life and financial participation. Participation items mostly refer to participation problems and

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