Purpose: To gain insight into how parents develop their beliefs of health promotion for their children with spina bifida (SB) and how they develop and promote health promotion practices for their children.
Design: Qualitative, exploratory design with semi-structured interviews of parents of children between 6 and 12 years of age diagnosed with SB was used for this study.
Results: Perceptions of health promotion were maintaining healthy bowel function and managing SB care. Good bowel function and SB management is health promotion and adequate bowel function is viewed as a marker of health. Maintaining healthy bowel function was identified by parents as the key marker of health for their children with SB. Further, the term health promotion brought up plans, concerns, and goals more related to their child's physiologic functioning and health care needs rather than promoting health and avoiding preventable disease.
Practice implications: Nurses and healthcare providers are in unique and powerful positions for strategizing with parents on how to integrate health promotion into the lives of children with SB. Team-based, whole-person, holistic assessment and teaching inclusive of promoting healthy lifestyle behaviors in addition to providing excellent care related to their physiologic systems affected by SB can improve how we promote health for these children.
Keywords: Bronfenbrenner's Ecological Framework of Human Development; bowel function; children with disabilities; health promotion; managing care; physical disability; spina bifida.
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