Construction and Validation of Educational Material for Children with Hydrocephalus and Their Informal Caregivers

• Published in: World neurosurgery 2018-06, Vol.114, p.381-390
• Main Authors: Tavares, Paloma de Aro J., Hamamoto Filho, Pedro Tadao, Ferreira, Ana Sílvia S.B.S., Avila, Marla Andréia G.
• Format: Article
• Language: English
• Subjects: Caregivers; Caregivers - standards; Child; Female; Health education; Health Personnel - standards; Humans; Hydrocephalus; Hydrocephalus - surgery; Hydrocephalus - therapy; Male; Mother-Child Relations; Patient Education as Topic - methods; Patient Education as Topic - standards; Perioperative nursing; Rehabilitation; Teaching Materials - standards; Ventriculoperitoneal Shunt - education
• ISSN: 1878-8750; 1878-8769
• DOI: 10.1016/j.wneu.2018.03.082

To build and validate journal-type digital and printed educational material for informal caregivers (i.e., the parents who provide care) of children with hydrocephalus. This is a methodologic study conducted in the children's neurosurgery outpatient clinic of a university hospital. The content validity index with a concordance of ≥0.78 was used for validation. Content was validated with the participation of 5 nurses and 3 neurosurgeons, and appearance was validated with the participation of 9 informal caregivers of children with hydrocephalus. A 21-page journal was created to address hydrocephalus and its treatment. The content and semantics of this material were validated with a universal content validity index of 0.90 and 0.98, respectively. Content and appearance of the educational material for informal caregivers of children with hydrocephalus were successfully validated and considered suitable and user-friendly for health education. •Congenital hydrocephalus is common, especially in developing countries.•Caregivers experience difficulties owing to lack of guidelines on patient discharge.•Free printed educational materials can ensure shared knowledge.•Validation enables verification and acceptance by families.