606 - A Systematic Review of Interventions for Families of Children with Intellectual Disabilities and Global Developmental Delay in Low- and Middle-Income Countries (LMICs)

Poster Number: 606
Publication Number: 606.402

Folasade Odeniyi, University of Illinois at Chicago College of Medicine, Chicago, IL, United States; Anjali Rao, Comer Children's Hospital at University of Chicago Medical Center, Chicago, IL, United States; Courtney R. Allen, Indiana University School of Medicine, Bourbonnais, IL, United States; Megan S. McHenry, Indiana University, Indianapolis, IN, United States; Reshma Shah, University of Illinois Chicago, Chicago, IL, United States

Background: Despite the high burden of neurodevelopmental disorders in LMICs, including intellectual disability (ID) and global developmental delay (GDD), there is limited data on interventions and outcomes of affected children. 

Objective: This is a systematic review of the current landscape of parent-child interventions for ID and GDD in LMICs.

Design/Methods: PubMed, EMBASE, CINAHL, Cochrane, PsychINFO, Web of Science, Scopus, and Clinical Trials databases were searched electronically (limited to English, Jan 2000- Dec 2021). A string of search terms was used to combine keywords for four main concepts: 1) neurodisability or developmental delay, 2) the type of intervention employed such as early intervention, rehabilitation, caregiver training, 3) LMIC, and 4) patient population. Reference lists of included studies and previous reviews were examined to identify potentially relevant publications not found through the electronic search. Inclusion criteria: 1) interventions including children< 18 years old who have been diagnosed clinically or by formal assessment with ID or GDD, 2) the intervention to have taken place in a LMIC as defined by the World Bank Criteria, 3) outcomes measured in child or family/caregiver (e.g., quality of life, functional status, mood/behavior, developmental outcomes, 4)studies used a randomized control design or quasi-experimental design. Three reviewers independently screened the titles and abstracts.

Results: 9,893 articles were screened, 586 full-text studies were reviewed, 244 assessed for eligibility. 13 articles met inclusion criteria. The articles described interventions utilizing a variety of modalities including: occupational performance coaching, caregiver self-help groups, caregiver skills training, and home therapy sessions. Studies described the use of professionals (e.g. occupational therapists, nurses, psychologists), family members, and community health workers to train parents in the different modalities. Parent outcomes included parent knowledge, competence, perceptions of child’s disability, and perception of social support. Child outcomes explored development (e.g. speech), goal attainment, and sense of self. Limitations include variability of method of diagnosis, and instruments used to measure outcomes.

Conclusion(s): Our study illustrates the inclusion of family members in interventions for children with ID and GDD in LMICs may be a promising approach to improve outcomes for children with intellectual disability and their caregivers. Strategies to support scalability and expand reach will be important steps to consider.