Parental Experiences in Caring for Children with Surgically Treated Hydrocephalus: A Phenomenological Study from Eastern India.

BACKGROUND: Congenital anomalies may be structural or functional and manifest at birth or be detected later in life. One such condition, hydrocephalus, is commonly managed with a Ventriculo-peritoneal (VP) shunt. As children grow with a shunt in situ, parents play a vital role in recognizing the symptoms of shunt malfunction and reporting for medical care. The possible complications are unpredictable and require a keen awareness of the associated symptoms and signs. MATERIALS AND METHODS: A qualitative descriptive phenomenological design explored experiences of parents caring for children with VP shunts at a tertiary care teaching hospital and specialty follow-up clinic. Ten purposively selected participants underwent an in-depth, face-to-face, semi-structured interview that was audio-recorded and transcribed verbatim. The qualitative data were analyzed using the Modified Colaizzi method to extract themes, and NVivo-12 software was employed for systematic data organization and management. RESULTS: The analysis generated four main themes from 22 subthemes, namely "Confound to comprehension," "Inconsistent support system," "Complexities of child care needs," and "Parental challenges and accommodation," which comprehensively elucidated the parental experiences of caring for a child with surgically managed hydrocephalus. CONCLUSION: Counseling service should be provided to the parents of children with surgically managed hydrocephalus by the physician and nurse about the disease, management, domiciliary care and follow-up. Emphasis must be placed on empowering them with coping strategies for common issues therein. Need specific, detailed education it be imparted to the parents while in the hospital and at discharge.