Early childhood development in a low-income community : caregiver perceptions and contextual adaptation of the PEDS developmental screening tools

Abstract

Background: Screening tools are often developed and standardised in high-income countries (HICs), then adapted and translated for lower-middle income countries (LMICs) to save costs of developing a new tool. However, adapting and translating screening tools for a low-income community (LIC) is challenging due to cultural and contextual differences and viewpoints. Objectives: This study aimed to describe caregivers' views on early childhood development (ECD), resources and available services in a LIC South African community. Caregiver perspectives on linguistic and cultural appropriateness of the Parents’ Evaluation of Developmental Status (PEDS) and the PEDS: Developmental Milestones (DM), as a first step in the cultural adaptation of the tool, was also determined. Lastly, the PEDS tools were adapted for a LIC using a novel multi-phased cultural and contextual adaption process. Methods: A multi-phased mixed-method design relying on triangulation of data was employed in this study. Convenience sampling was used in phases A to C of the research. Caregivers at a clinic in Mamelodi volunteered to participate for focus group discussions and the completion of surveys. Purposive sampling was employed to form an expert panel that agreed to partake in an online questionnaire. In phase A the qualitative data was analysed using a hybrid approach of inductive and deductive analyses; qualitative data in phase C was analysed through an inductive process. Phase D involved a two-round modified Delphi method. Results: Core themes were identified in phase A a priori, and subthemes emerged using thematic analysis. The findings shed light on caregivers' knowledge needs related to ECD, the importance of developmental screening in identifying delays and disabilities, and the need for services to be extended. In phase B, the qualitative data showed that 38.2% of participants found the term “development” on question 1 on the PEDS not suitable; and 51% preferred the phrase “sometimes worry” more than the phrase “have any concerns” for questions 2-9. On the PEDS:DM 58 of the 124 questions were deemed difficult. Most questions were problematic due to cultural or linguistic differences (49 questions); and some questions too difficult for the child’s age (9 questions). The expressive language developmental domain had the most challenges. In phase C the topics of the focus group explored the possible changes on the PEDS tools to make it more relevant for the community. Themes identified included to describe/elaborate and item; to change the wording; to change the item; to add/leave out parts; and for some items no input could be given. In phase D 12 experts in the field of ECD achieved consensus on the recommended changes on the PEDS tools, based on the community suggestions in phase C. In phase E, a draft of the PEDS tools-SA was presented to the authors of the PEDS tools for final approval. A final version of the PEDS tools-SA was created. Conclusion: This study used a novel method to adapt the PEDS tools for a LIC. Cultural changes were based on community views from the initial steps, making the PEDS tools-SA more contextually relevant and clinically applicable. The cultural and linguistic applicable PEDS tools-SA was developed through a high-quality adaptation, which may successfully be implemented in similar LICs in the future.