The goal of this systematic review is to identify personal, social, and methodological factors that improve the effectiveness of social participation promotion programs for people with intellectual disability. Our secondary goal is to delineate a set of best practices for social participation promotion programs based on the evidence collected. To this end, this proposed review will attempt to answer the following questions:
- Do social participation promotion programs have an effect on subsequent social participation of people with ID?
- For question 1, which kind of programs appear to increase social participation?
- For question 2, are there personal factors shared by participants in those programs?
- For question 2, are there social factors shared by participants in those programs?
- For question 2, are there methodological factors shared by those programs?
- For questions 3 to 5 above, is there a common set of personal, social and methodological factors shared by successful programs?
Studies will be selected according to the criteria outlined below.
We will include randomized control trials, nonrandomized control trials, and controlled before and after studies that compare an intervention designed to improve social participation of people with ID. If not enough controlled studies are found, we will also include uncontrolled before and after studies. We will exclude observational or qualitative studies.
We will include studies about promotion programs involving people with ID as part of the participants. We will include studies about programs where at least 50% of the participants are people with ID. We will include studies about promotion programs referring to other disabilities if a) there are participants with ID in those programs, or b) the studies report results separately for people with ID. We will include studies that recruited people regardless of gender, ethnic group, medical diagnosis or multiple diagnoses, as long as they have been identified as people with ID.
We are interested in social participation promotion programs involving people with ID, taking a broad perspective. Besides programs that focus on people with ID, we will also consider programs that address social participation of people with disability in general but include people with ID in the participant groups. We will consider both offline and online programs. We will include studies reporting either successful or unsuccessful impact on social participation.
We broadly define social participation promotion programs as interventions targeting one or more of the ecological pathways of the social inclusion model with the explicit goal of facilitating people with ID to participate, that is, to perform actions contributing to themselves and others, in the Community and Socio-political domains of the model. We will exclude studies reporting programs that do not fit the previous definition.
The primary outcome is intervention success, a dichotomous outcome that indicates whether the social participation program was considered successful or not. Secondary outcomes will include any measures of social participation reported by the studies: well-being, stigma, employment rate, weekly hours of community work, membership in advocacy networks, etc. Secondary outcomes will also include measures of knowledge about rights and advocacy processes if they are available. Outcomes will be collected as reported. We will consider creating an aggregate index of success if the collected studies warrant it.
Studies will be selected for inclusion regardless of the duration of the intervention. Outcomes will be grouped into three categories to represent short-term (less than 6 months), medium-term (between 6 and 12 months) and long-term outcomes (more than 12 months).
There will be no restrictions by type of setting.
We will include articles reported in Spanish, Portuguese and English.
1st, 2004 and December 31st, 2019) in the following databases: Web of Science, EBSCO, Scopus, LILACS and PubMed. We will also conduct a grey literature search.
We will seek peer-reviewed articles about quantitative studies. No study design, date, or language limits will be imposed on the search, although only articles in Spanish, Portuguese and English will be included. We will search the databases Web of Science, EBSCO, Scopus, LILACS and PubMed for articles between January 1st, 2004 and December 31st, 2019. The search strategy for Web of Science can be found in Additional file 1. The strategy will be adapted to the specific syntax of each database. We will also conduct a grey literature search. This protocol conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P, 14) guidelines, found in Additional file 2.
We will follow a two-stage screening process. First, review authors will independently screen the titles and abstracts yielded by the initial search against the inclusion criteria. Two senior reviewers will check a report about all titles appearing to meet the inclusion criteria, and those where there is uncertainty. Second, full texts of all retained articles will be procured and assessed independently by two reviewers. Any disagreement will be solved through a discussion between the two reviewers and, if necessary, the involvement of a third reviewer. In case it is needed, we will seek additional information from study authors to determine eligibility. We will record the reasons for excluding studies. No review authors will be blind to the journal titles, the study authors or institutions.
Data extraction and management
The team will design and pilot standardized forms for data extraction. The information to be extracted includes: study methodology, study setting, study population, participant demographics, baseline characteristics, intervention details, outcome measurements and timing, and information for the assessment of risk of bias. Due to the broad perspective for programs, the forms may require constant refinement during the data extraction process to include previously unidentified outcome measures. Four reviewers will participate in the data extraction process. To ensure consistency, we will conduct calibration exercises before starting the review. For each study, data will be extracted independently by two reviewers. Reviewer’s disagreement will be resolved by discussion, and one of two arbitrators (MT or PA) will adjudicate unresolved disagreements. We will contact corresponding authors if necessary, to seek out further information.
We will use Mendeley to manage the references. We will use Covidence to carry out the review.
Risk of bias in individual studies
The methodological quality of each of included study will be assessed independently by two reviewers. As we will be including both randomizes and nonrandomized study designs, we will use Cochrane’s respective risk of bias tools: RoB for randomized designs and ROBINS-I for nonrandomized designs. For each study, all risk of bias domain will be rated and categorized as low, high or uncertain. If there is disagreement between reviewers, it will be solved by discussion and one of two arbitrators (MT or PA) will adjudicate unresolved disagreements.
Measures of effect
Whenever possible, we will calculate measures of effect. For studies with a separate control group, we will express the intervention effect as either a risk ratio (for dichotomous variables) or standardized mean differences (for continuous variables) with corresponding 95% confidence intervals. For studies without a separate control group and at least three measures before and three measures after the intervention, we will express the effect as standardized level and slope differences of before and after regression lines (15). For studies without a separate control group and less than three measures before and after the intervention, we will use the standardized mean difference between the latest measure before intervention and the earliest measure after intervention.
We will provide a systematic narrative synthesis of the results extracted from the full-text articles. We will include a summary of studies including information about authors, study design, participants and their characteristics, success of the intervention as the primary outcome, any secondary outcomes, and limitations of the studies. Given our interest in identifying the characteristics of successful intervention programs, we will emphasize identifying and classifying which program characteristics may be factors for success. We will weigh the relative strength of each factor taking into account how many studies provide evidence for it and the qualities of those studies. A summary of these findings will be provided as an attempt to characterize a set of best practices for social participation programs for people with ID.