SSR-1: A Systematic Scoping Review of the Literature
Studying Risk Factors for Institutionalization; Study Design and Procedures
While all of the above reasons for conducting a scoping review are relevant in studying institutionalization risk factors for people with disabilities, several are particularly relevant. First, there is no single, narrow research question that would be adequate to identify risk factors for institutionalization that can be used as the basis for a systematic literature review.
The factors are likely to vary based on different subgroups of people with disabilities, could be related to the person or the environment, and, particularly, to differ based on the age of the population being studied. For example, a brief search of the Cochrane Collaboration database for the years 2001-2011 using the terms “institutionalization” and “risk” yielded 107 reviews. Only five reviews (4.7%) addressed institutional risk factors for working-aged (e.g., 18-65) people with disabilities, including personal care for people with physical disabilities, home-based care for people with HIV/AIDs, and pharmacological treatment for dementia or self-injurious behavior in people with Down syndrome.
Most (82.2%) reviews addressed health issues in elderly persons (e.g., dementia or stroke). The remaining reviews (20.1%) addressed issues related to children and other miscellaneous topics. It is notable that the above mentioned review on personal care for working-aged people with disabilities resulted in inclusion of only one study. The same search conducted in the Social Work Abstract database yielded 12 studies, with only one relevant study (8.0%) that examined homelessness for adults with mental illness. Of the remaining 11 studies, five (4.2%) addressed elderly issues and six (5.0%) addressed children at risk.
Additionally, a search of the Campbell Collaboration database, using the same search terms, yielded seven reviews, six of which addressed issues related to incarceration and delinquency and only one of which addressed issues related to disability. Thus, there does not appear to be a plethora of literature on this topic of institutional risk factors for working-aged people with disabilities. A systematic scoping review of this literature could serve to identify gaps, and disseminate findings – two goals articulated in the current NIDRR Long Range Plan and important to further this area of research.
Study Design and Procedures
The goal of this project is to conduct a systematic scoping review of the literature on risk factors affecting institutionalization of working-aged people with disabilities and disseminating the results broadly.
The steps to accomplish this goal include:
1. Assemble and orient a Review Advisory Panel to regularly consult on the review;
2. Establish an analytic framework to guide the review;
3. Develop key questions, inclusion and exclusion criteria, search terms, and data extraction
4. Identify electronic databases most relevant to the topic;
5. Explore other sources of literature that may not be entered in databases (e.g., searching the
Internet to find organizations that may have funded studies, accessing governmental reports,
asking experts in the field, reviewing reference lists of identified articles, and hand-searching
some key journals);
6. Conduct search and review all abstracts for exclusion according to pre-determined exclusion
7. Review full text of remaining articles for exclusion;
8. Assess the quality of each included article;
9. Extract data from articles;
10. Analyze and synthesize data;
11. Report the findings to the Review Advisory Panel for feedback and future direction if
12. Summarize findings and present at the bridging meetings for RRTC/CL research partners.
13. Present findings in snapshot format for consumer groups and policy-makers
14. Write a manuscript of findings and submit to a peer-reviewed journal
The systematic scoping review will be conducted according to rigorous procedures specified by experts in the field. At the project start, the staff will receive two days of training in procedures by a consultant with experience in systematic scoping reviews to ensure adherence to methodological guidelines. A resource librarian from the University of Kansas libraries will provide consultation on the overall search, with special attention to searching for “gray literature” that may be widely dispersed and not included in electronic databases.
The project staff will meet regularly with a Review Advisory Panel comprised of persons with expertise in both content and procedures to ensure both rigor and relevance, and to implement Participatory Action Research (PAR) procedures. Inclusion of advisory groups whose members can provide a broad range of expertise in the systematic review process is recommended to increase the relevancy and quality of the end product.
Several of the Review Advisory Panel members have conducted systematic scoping reviews and will provide consultation. While we plan to target the population of people with disabilities aged 18-64, we will search for literature on risk factors for persons of any age group, and then examine it for subgroups and potentially relevant factors across ages.
Initial plans are to limit the review to literature published between the years 2001-2011, a 10-year period when studies resulting from Olmstead decision in 1999 were likely to be published, up to the present time. The Supreme Court’s Olmstead decision is a critical turning point as it reiterated the ADA’s requirement that services (including housing) be provided in the most integrated setting appropriate to individuals, and jumpstarted efforts to redirect long term care funding from institutions to community-based services, as in the Money Follows the Person demonstrations. However, the time frame and other parameters may change based on the Review Advisory Panel’s assessment of initial searches.
The following initial key questions, search terms, and databases represent drafts that will be revised upon training, and upon consultation by the Review Advisory Panel.
Initial Key Questions for a Systematic Scoping Review of the Literature
2001-2011 (inclusive) that focus on risks for institutionalization (i.e., nursing homes, group homes and similar congregate living facilities) among people with disabilities?
a. What disability subgroups are represented in the literature on risks for institutionalization?
b. What factors emerge as institutionalization risks for the population of people with disabilities?
i. Environmental factors, if not available in sufficient amount, duration, frequency, proximity, or quality (e.g., accessible housing, health care, financial benefits, personal assistance, social support, or transportation)
ii. Personal factors (e.g., advocacy skills, ability to manage incontinence)
c. What types of literature (intervention, non-intervention, survey, grey literature) are available regarding the risks of institutionalization of people with disabilities?
Initial Search Terms
Institutionalization, deinstitutionalization, risk factors, housing, housing, health care, personal assistance, financial benefits, social support, transportation, advocacy skills, independent living skills, advocacy skills, incontinence
Initial Databases to Be Searched
PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Social Work Abstracts