Abstract
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Objective: This study synthesized literature on the information needs of parents of children with cleft lip and/or palate (CLP), from diagnosis through the initial treatment process, and examined current information provision to clarify required information and appropriate delivery methods.
Introduction: Parents of children with CLP require wide-ranging information about the condition, treatment, breastfeeding, child-rearing, and the child’s future, often beginning at diagnosis or birth. However, reports indicate that parents may not obtain necessary information or may find explanations difficult to understand. Clarifying parents’ information needs and current information provision is essential for developing support strategies that meet those needs.
Inclusion criteria: This study included literature involving parents of children with CLP and qualitative data on information needs or current information provision from diagnosis, including prenatal diagnosis, through palatoplasty. No restrictions were placed on the child’s age at the time of the study, and accounts reflecting on past experiences were included.
Methods: Literature searches were conducted using Ichushi-Web, MEDLINE, CINAHL, PsycINFO, and ProQuest Dissertations & Theses. In total, 33 studies were analyzed. Articles selected for screening and analysis were assessed for quality using the JBI checklist for qualitative research. Descriptions related to information needs and information provision were extracted from the included studies and coded, subcategorized, and categorized using thematic synthesis.
Results: We extracted 128 verbatim data from 33 studies and generated 157 codes. Five categories were developed:
(i) information needs regarding the condition and treatment;
(ii) information needs regarding breastfeeding and childcare;
(iii) information needs regarding medical and social resources;
(iv) needs regarding the quality and methods of information provision;
(v) needs for peer support and support from close others.
Conclusions: Parents of children with CLP have diverse information needs and place importance on both information content and the quality and methods of delivery. Healthcare professionals should assess parents’ circumstances and needs from diagnosis, provide clear and consistent information at appropriate times, and support access to diverse information sources, including other professionals and peer support groups.
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