Neurosurgery NursingConstruction and Validation of Educational Material for Children with Hydrocephalus and Their Informal Caregivers
Introduction
Congenital hydrocephalus occurs at a frequency of 1:1000 live births; in developing countries, this number increases to 3.16:1000 live births.1 It is one of the most common neurosurgical diseases in childhood and is generally treated with a ventriculoperitoneal (VP) shunt.2, 3 Although this treatment is quite effective in most cases, there is a considerable risk of dysfunction and infection, especially in the first year of use.4
After the birth of a child with hydrocephalus, the families, especially the mother, usually develop fear of the unknown and the unexpected in relation to the disease and of the need for surgery in the first hours or days of life.1, 5 In the course of their lives, these children have special health needs and require specific care at home from their informal caregivers (i.e., the family members who care for the child). This care usually includes preventing postoperative complications; tissue care to prevent pressure injury to the head; identifying the warning signs for intracranial hypertension; and other measures to improve hydration, nutrition, and comfort.6 It is especially important that caregivers are able to monitor and detect changes in a child with shunted hydrocephalus. They need to promptly identify signs and symptoms of shunt malfunction and seek immediate medical assistance, as delay in treatment is hazardous and life threatening. Many families, however, care for their children using the popular knowledge, based on beliefs, customs, culture, and resources that are considered inconsistent with the practices of the health care system.6, 7, 8, 9
Educational material in print or digital format is becoming increasingly popular for health education. A literature review stresses the importance of the Internet as a health education tool for informal caregivers to prevent significant morbidity and mortality owing to shunt failure.10 According to this study, most informal caregivers (91.7%) used the Internet, and 90.3% of these caregivers accessed the Internet from home. Most caregivers (81.9%) who used the Internet reported having looked for information on hydrocephalus. Of these caregivers, 52.7% considered the information they found on hydrocephalus very useful, whereas 2.5% rarely used the information or believed that it was not useful. Moreover, 89.8% of the caregivers who used the Internet reported that they would like their neurosurgeons to recommend the best resources.10 Furthermore, the informal caregivers who used the Internet did not believe that the information they obtained was fully reliable; 57.8% reported that they sometimes trusted the information on hydrocephalus obtained from the Internet. A small proportion of these caregivers (21.7%) always trusted the information from the Internet. Additionally, 28.6% of the caregivers used the Internet to find support groups, whereas 34.8% used the Internet to communicate with other caregivers of children with similar conditions.10 The Internet is a popular source of information among patients and their families, although the information is not always reliable. Consequently, educational material created by the health care team to assist the patients would facilitate communication and clarify doubts regarding the reliability of information.
The lack of guidelines from the health care team or the lack of communication for this specific population after hospital discharge increases the difficulties of caregivers.11 Health education is an important intervention strategy to prepare and provide information to the caregivers, thereby increasing the quality of life of the children.12 This education can be provided using printed educational material. This form of material can potentially ensure the shared creation of knowledge and emerges as a new health promotion proposal based on the participation of the population. Manuals, leaflets, brochures, booklets, flip charts, and guidebooks all are accessible alternatives that patients and their families can read after hospital discharge to support the verbal guidelines of the health care teams, to clarify future doubts, and to assist in decision making.11 For these resources to be used effectively, however, they must be developed and validated.13
For the target public to use educational material and benefit from this tool, it is important to translate the knowledge. Knowledge translation is defined by the Canadian Institute of Health Research as “a dynamic and iterative process that includes synthesis, dissemination, exchange, and ethically-sound application of knowledge to improve the health, provide more effective health services and products, and strengthen the healthcare system.”14 Considering that many children must use the VP shunt throughout their lifetime, considering that care provided by the medical and nursing staff must include health education for the families during treatment, and considering the lack of appropriate educational material for children with hydrocephalus available in Brazil, it was necessary to create a printed and digital educational material for the families of patients with hydrocephalus. The aim of this study was to develop an educational material and validate it by experts and the target population in terms of content and appearance, considering semantics and appropriateness to our cultural context.
Section snippets
Study Design
This research was approved by the research ethics committee of the Botucatu Medical School, UNESP–Universidade Estadual Paulista (CAAE: 64119917.6.0000.5411) and complies with resolution No. 466/12, which establishes the guidelines and regulatory standards for research involving humans. A methodologic descriptive study was used for the creation and validation of educational material intended for the health education of informal caregivers of children with hydrocephalus in perioperative care for
Results
The educational material (paper and electronic formats) consisted of a journal shared between a child with hydrocephalus and her mother. In the journal, the child and mother write about their experience of VP shunt dysfunction through a logical series of events covering the following topics: definition of hydrocephalus, recognition of signs and symptoms of VP shunt dysfunction, an instructional explanation of VP shunt obstruction, and care in the perioperative period. In addition, the material
Discussion
The material proposed in this study was created as self-explanatory material for health care workers to use in the health education of families who care for children with VP shunts, who generally undergo various surgeries in their lifetime.20, 21 These children and their families are faced with a lot of stress when they are informed that surgery is required and when they are referred to the surgical unit. Lack of knowledge about the surgical environment, the surgery itself, and the child's
Conclusions
Communication is a tool nurses and physicians use in care. Written communication is a widely used method of providing health education information. Consequently, free educational material was created in the form of a 21-page journal entitled, “Laura's Diary: Understanding Hydrocephalus and Its Treatment,” to help recognize the role of nurses, minimize the negative impact of surgery, and empower families. The educational material presented in this study enables the provision of humanized care,
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Cited by (0)
Conflict of interest statement: This work was supported by FAPESP–Fundação de Amparo à Pesquisa do Estado de São Paulo (grant number 16/17581-4).