Sandra Magaña, PI; Brian Grossman, Co-PI
Because families are very involved in supporting people with disabilities, it is important to expand research on family support to better understand their experiences across the life course and from an ecological and sociocultural perspective. The first step is to assess the level of research that has been conducted on family support and identify gaps in research. Since 2014, the Family Support Research and Training Center (FSRTC) has been developing a strategic research plan in the area of Family Support while engaging stakeholders (families of individuals with disabilities, service professionals, policy makers, researchers, activists, and persons with disabilities) in the research process, using participatory research method. We used feedback from stakeholders to identify key elements of Family Support related research and form relevant research questions. Below are a list of steps taken and the products of these research efforts.
- Need to Know Campaign: During the spring of 2016, we engaged stakeholders in identifying important family support research topics utilizing online and paper surveys. Click the link below to download the report entitled, Developing a National Agenda for Family Support Research:
https://fsrtc.ahslabs.uic.edu/wp-content/uploads/sites/9/2016/10/Need_to_Know_report_final.pdf
- Literature reviews across disabilities and life course and using the ecological framework: We published a special issue in the Journal of Family Social Work in the fall of 2016. The following is a list of articles we published in the order they appear in the journal and the topic covered:
- Introduction
Grossman, B. R., & Magaña, S. (2016). Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course. Journal of Family Social Work,19(4), 237-251. - Children
Vanegas, S. B., & Abdelrahim, R. (2016). Characterizing the systems of support for families of children with disabilities: A review of the literature. Journal of Family Social Work, 19(4),286-327. - Adolescents
Burke, M. M., Patton, K. A., & Taylor, J. L. (2016). Family support: A review of the literature of families of adolescents with disabilities. Journal of Family Social Work, 19(4), 252-285. - Adults
Barrio, C., Hernandez, M., & Gaona, L. (2016). The family caregiving context among adults with disabilities: A review of the research on developmental disabilities, serious mental illness, and traumatic brain injury. Journal of Family Social Work, 19(4), 328-347. - Older adults
Grossman, B. R., & Webb C. E., (2016). Family support in late life: A review of the literature on aging, disability, and family caregiving. Journal of Family Social Work, 19(4), 348-395.
- Introduction
- List and prioritize research topics: Using the findings from the Need to Know campaign and the gaps identified in the literature reviews, we asked stakeholders to prioritize research topics through a Qualtrics survey. We also convened an expert panel meeting on December 7, 2016 to discuss the research topic results generated from the Qualtrics survey. The panel confirmed whether the topics were appropriate, relevant and needed more research.
- State of the Science in Family Support Research: On June 11 and 12, 2018, FSRTC convened a State of the Science conference on Family Support Research. Prior to this, the FSRTC team developed a draft of the strategic plan which was distributed to participants before the conference and reviewed on the second day of the conference. We held a two-part discussion about the content of the document about the topics identified in the plan and the methods needed to address these topics. The feedback generated during the discussion was used to further refine the research plan. Click the link below for more information on the State of the Science Conference agenda and presentations for the first day of the conference:
- Strategic Research Plan: In November of 2018, the FSRTC released the Strategic Research Plan for Family Support Research. We held a webinar on January 10, 2019 that discussed the process of developing the plan and highlights from the plan. Click the link below to download and read the strategic research plan:
