Initial emotional responses of families of children with cleft lip and/or palate: A systematic review and thematic synthesis

Objective: To synthesize findings on the initial emotions experienced by families of children with cleft lip and/or palate(CLP) after diagnosis or birth and explore implications for early nursing support.

Introduction: CLP is a common congenital anomaly involving visible facial differences and requiring long-term multidisciplinary care, including feeding management, surgical repair, speech therapy, and orthodontic treatment. After a diagnosis during pregnancy or at birth, families often experience complex psychological distress, including emotional shock, self-blame, and anxiety about child-rearing and future outcomes. Although individual studies have addressed parental psychological responses, a comprehensive synthesis focused on initial emotions is needed to inform family-centered nursing interventions during early diagnosis and the perinatal period.
Inclusion criteria: This review included qualitative primary studies focusing on the initial psychological experiences and emotional responses of families, including parents and grandparents, of children with CLP. Studies were eligible if they addressed prenatal diagnosis or the immediate postpartum period and if full text was available, regardless of publication year.

Methods: Literature searches were conducted in five databases: Ichushi-Web, MEDLINE, CINAHL, PsycINFO, and ProQuest Dissertations & Theses. Methodological quality was critically appraised using the JBI Critical Appraisal Checklist for Qualitative Research. Textual data, including verbatim quotations and findings related to initial family emotions, were extracted and analyzed using thematic synthesis. Codes were iteratively compared, aggregated into subcategories and categories, and synthesized into overarching themes under academic supervision.

Results: Forty-nine studies were included. Quality appraisal showed that most studies met JBI standards for methodological consistency, although reporting on researchers’ cultural or theoretical perspectives and influence was generally limited. From 704 extracted verbatim statements, we generated 258 codes, seven subcategories, and three overarching categories. These categories were (1) psychological distress arising from diagnosis and birth, characterized by emotional shock, self-blame, anxiety about unpredictable caregiving and future outcomes, and distress related to appearance and social scrutiny; (2) dynamic emotional shifts through interactions with others, influenced by reassurance or distrust involving healthcare professionals and by support or stigma from family and social networks; and (3) acceptance of the condition and positive adaptation grounded in bonding with the child, whereby direct contact and caregiving fostered parental attachment and supported empowerment, coping, and personal growth.

Conclusions: Initial emotional responses among families of children with CLP represent a dynamic process that evolves from acute psychological distress to adaptive coping through social interactions and parent-child bonding. Nursing care during this early phase should validate family distress without judgment, provide staged and individualized information, and actively facilitate early parent-child contact to support attachment. Nurses should also involve extended family members, facilitate peer support networks, and establish continuous interprofessional support systems from prenatal diagnosis through long-term developmental milestones.