The Psychosocial Impact of Cleft Lip and/or Palate on Caregivers and Individuals in Low- and Middle-Income Countries: A Narrative Review.

Abstract

Low- and middle-income countries (LMICs) represent the highest incidence, morbidity, and Disability Adjusted Life Years for cleft lip and/or palate (CL/P) globally. Most cleft care models now include psychosocial support, yet the psychosocial impacts of CL/P in LMICs are understudied. This narrative review aimed to synthesize published literature to provide a foundation for future research and evidence-based psychosocial support. Seventy-one peer-reviewed articles published between September 2003 and July 2024 were included. Themes pertaining to caregivers included Social Experiences, Emotional Well-Being, Treatment Experiences, and overall Quality of Life. Themes regarding individuals with CL/P included Developmental Trajectory, Social Integration, Emotional Health, Satisfaction with Treatment, and Health-Related Quality of Life. Most articles focused on upper-middle-income countries. East Asia and Pacific was the most studied geographical region in LMICs, while Europe and Central Asia was the least studied. Only 28 of 135 LMICs (20.7%) were represented in the included psychosocial literature. Most studies (69%) utilized a quantitative design. Sample sizes ranged from 2 to 295, with 73% of studies recruiting from a single site. Few studies (28%) compared their data to reference or control groups. Just over half of studies used standardized, validated measures. Most studies were led by LMIC teams. This review calls for ongoing monitoring of psychological health in individuals with CL/P and their caregivers and coordinated investment into multifaceted psychosocial program in LMICs. Building practice-relevant research capacity in LMICs to develop the evidence-base is essential.