The impact of COVID-19 related restrictions on caregivers of infants and young children (6 months–3 years) born with cleft lip and palate

Khoza, Nonhlanhla

The impact of COVID-19 related restrictions on caregivers of infants and young children (6 months–3 years) born with cleft lip and palate

Thesis / Dissertation

2026

Publisher

University of Cape Town

Department

Division of Communication Sciences and Disorders

Faculty

Faculty of Health Sciences

Abstract

Background: Cleft lip and/or palate (CL/P) is one of the most common craniofacial birth defects worldwide, with a global prevalence of approximately 1 in 700 live births. Infants and children with CL/P and their families require intervention and support from a multidisciplinary cleft team. Initial intervention focuses on information counselling, facilitation of feeding, surgical repair, and psychosocial support. These interventions are considered time sensitive to reduce potentially negative consequences. However, the COVID-19 pandemic in 2020 disrupted the typical timeline for CL/P interventions globally, and in South Africa, due to restrictions and regulations resulting in the suspension and cancellation of many healthcare services, including cleft services. Aim: To describe the impact of COVID-19 related restrictions on the caregivers of infants and young children (6 months to 3 years) born with CL/P, through exploring caregivers' perceptions of access to CL/P health services, difficulties related to feeding, and caregiver support. Methodology: A qualitative, narrative research design was employed. Semi-structured interviews were conducted with eight caregivers of children born with CL/P (6 months to 3 years at the time of data collection) attending the multidisciplinary cleft clinic at Chris Hani Baragwanath Academic Hospital. The interviews were transcribed, and data were thematically analysed. Results: One main theme and five subthemes emerged from the caregivers' perceptions of the impact of the COVID-19 related restrictions on their experience. The main theme, ‘a difficult journey', was further described through subthemes, which included: ‘limited/no access to cleft services', ‘delays, cancellations and poor communication', ‘feeding difficulties and experiences', ‘a roller-coaster of emotions' and ‘we just need support'. Every aspect of care was impacted and there was a ripple effect, for such as limited access to the cleft clinic and delays affected other areas, such as feeding and emotional support, which compounded the caregivers' difficult journey. Conclusion: Caregivers faced significant challenges during the pandemic. The main challenges were related to difficulties accessing the multidisciplinary cleft team, particularly the speech-language therapist; delays and cancellation of cleft repair surgeries; poor communication with the healthcare facility; difficulties related to feeding their child with CL/P; and psychosocial challenges and the need for professional and informal support. The findings also highlighted broader systemic issues within the healthcare system.