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Supporting Information-Seeking Behaviors of Families in the 21st Century
FAMILY DYNAMICS
Supporting Information-Seeking Behaviors of Families in the 21st Century Whitney Hardy, BS undergraduate nursing student and Jacqueline M. McGrath, PhD, RN, FNAP, FAAN
Keywords: Internet; World Wide Web; Infant; NICU
Parents are entering the neonatal intensive care unit (NICU) with more medical information about their baby than ever before. They continue to actively broaden their knowledge throughout their infant's hospital stay. On average, up to half of parents spend 20 hours using the Internet to find information about their infant during the first week of hospitalization.1 Four weeks later, one third of parents are still using the Internet at this rate to continue to search for information related to their critically ill newborn.2 Research has shown that these information-seeking behaviors continue throughout the hospitalization and into the homecoming period. Health care providers must acknowledge this growing trend and offer support and guidance to parents as they navigate through the vast amount of information available on the Internet. Because parents are entering the health care system with information, it is important to ask what they already know about the care of infants in the NICU environment. It is also important to ask what resources were used to gather knowledge about their infant. The Internet is full of information that is not always accurate, and users do not always take this into account. In a study performed in a gastroenterology clinic, only 14% of patients were concerned about the quality of their Internet search results.3 With these findings, it would be beneficial for health care providers to recommend Web sites that provide accurate information to parents. In many ways, NICU nurses must care for two sets of patients with very different needs—the critically ill infant and the infant's family. While providing highly specialized nursing care to the infant, the nurse must also evaluate the parent's
From the School of Nursing, Virginia Commonwealth University, Richmond, VA. Address correspondence to Jacqueline M. McGrath, PhD, RN, NNP, FNAP, FAAN, School of Nursing, Virginia Commonwealth University, PO Box 980567, Richmond, VA 23298. E-mail: [email protected]. © 2008 Elsevier Inc. All rights reserved. 1527-3369/08/0803-0268$34.00/0 doi:10.1053/j.nainr.2008.06.013
knowledge about the infant's condition and provide health care information in an individualized manner. Researchers have found that using a pragmatic sequential approach to providing patient education may best support the synthesis of new information.4 By using this “representational approach” during parent education, nurses can better determine the knowledge base and any gaps or misconceptions that exist. Only then will new information be integrated into the parent's current understanding of the health condition of their infant. The representational approach to patient education is based on the theory of cognition of illness and the theory of how conceptual change occurs and can be applied to parent education in the NICU.4 Before any new teaching takes place, the representational approach calls for the nurse or other health care provider to elicit the parent's current knowledge and beliefs. Then together, the nurse and parent explore for any gaps or misconceptions in the knowledge. Once a parent recognizes that his or her knowledge base is incomplete or flawed, he or she is more open to conceptual change. Only at this phase is the parent ready for the nurse to provide additional information to fill the gaps and begin to rectify the misconceptions. A summary of the newly introduced information provides the nurse the opportunity to discuss how it can be used to improve outcomes in the infant. The representational approach is a fluid approach because the parent must again return to the new knowledge base and assess for gaps and misconceptions before new information can be added. Although the nurse strives to incorporate parent teaching into every interaction, he or she must also realize that parents seek information on their own. Helping parents to find the best information and communicate regularly with families can be an enormous undertaking. Providing a safe and easy way to facilitate communication between families and health professionals is important. Internet-based programs created by neonatologists, nurse practitioners, nurses, respiratory therapists, social workers, child life specialists, and technology support personnel can be found on the World Wide Web. They serve a wide variety of functions, including providing parents with a secure way to communicate with the health care team, allowing parents to receive updates on their infant's condition,
viewing daily photographs, searching topics that relate to their infant's medical conditions, learning about how to care for their critically ill newborn, and learning how to prepare for discharge. Studies of hospitals using these types of program have found that parents report a higher level of overall satisfaction with the care their infant received in the NICU. They also show that reports of problems with quality of care decreased by 75%.2 Initially, it was thought that such Internet-based programs would not serve all populations (ie, lower vs higher economic status) with infants in the NICU. Some thought that if a variety of social or economic factors existed, it was more important to address those through multiple strategies and provide handouts, booklets, individualized teaching off the unit, and/or taxi vouchers instead of technology-based resources.2 However, this way of thinking only results in more disparity and does not address the issue of the need for all to receive health care information in the most up-to-date fashion. Most households today have access to a computer, and computer/Internet access can also be made available within the health care setting. In today's world, most of us are being inundated with an abundance of information each day. Helping families to sift
through and make sense of this information is important in facilitating their transition to parenthood of a child who has required admission to the NICU. This different beginning makes these families more vulnerable, and we need to increase their confidence and competence in being able to care best for their infant. The sooner we help parents to assume this role for their child, the better the long-term outcomes for the infant and family.
References 1. Brazy JE, Anderson BMH, Becker PT, Becker M. How parents of premature infants gather information and obtain support. Neonatal Netw. 2001;20:41-48. 2. Safran C. The collaborative edge: patient empowerment for vulnerable populations. Int J Med Inform. 2003;69:185-190. 3. O'Connor JB, Johanson JF. Use of Web for medical information by gastroenterology clinic population. JAMA. 2000;284:1962-1964. 4. Donovan HS, Ward SE, Song MK. An update on the representational approach to patient education. J Nurs Scholarsh. 2007;39:259-265.
VOLUME 8, NUMBER 3, SEPTEMBER 2008
119
Supporting Information-Seeking Behaviors of Families in the 21st Century Whitney Hardy, BS undergraduate nursing student and Jacqueline M. McGrath, PhD, RN, FNAP, FAAN
Keywords: Internet; World Wide Web; Infant; NICU
Parents are entering the neonatal intensive care unit (NICU) with more medical information about their baby than ever before. They continue to actively broaden their knowledge throughout their infant's hospital stay. On average, up to half of parents spend 20 hours using the Internet to find information about their infant during the first week of hospitalization.1 Four weeks later, one third of parents are still using the Internet at this rate to continue to search for information related to their critically ill newborn.2 Research has shown that these information-seeking behaviors continue throughout the hospitalization and into the homecoming period. Health care providers must acknowledge this growing trend and offer support and guidance to parents as they navigate through the vast amount of information available on the Internet. Because parents are entering the health care system with information, it is important to ask what they already know about the care of infants in the NICU environment. It is also important to ask what resources were used to gather knowledge about their infant. The Internet is full of information that is not always accurate, and users do not always take this into account. In a study performed in a gastroenterology clinic, only 14% of patients were concerned about the quality of their Internet search results.3 With these findings, it would be beneficial for health care providers to recommend Web sites that provide accurate information to parents. In many ways, NICU nurses must care for two sets of patients with very different needs—the critically ill infant and the infant's family. While providing highly specialized nursing care to the infant, the nurse must also evaluate the parent's
From the School of Nursing, Virginia Commonwealth University, Richmond, VA. Address correspondence to Jacqueline M. McGrath, PhD, RN, NNP, FNAP, FAAN, School of Nursing, Virginia Commonwealth University, PO Box 980567, Richmond, VA 23298. E-mail: [email protected]. © 2008 Elsevier Inc. All rights reserved. 1527-3369/08/0803-0268$34.00/0 doi:10.1053/j.nainr.2008.06.013
knowledge about the infant's condition and provide health care information in an individualized manner. Researchers have found that using a pragmatic sequential approach to providing patient education may best support the synthesis of new information.4 By using this “representational approach” during parent education, nurses can better determine the knowledge base and any gaps or misconceptions that exist. Only then will new information be integrated into the parent's current understanding of the health condition of their infant. The representational approach to patient education is based on the theory of cognition of illness and the theory of how conceptual change occurs and can be applied to parent education in the NICU.4 Before any new teaching takes place, the representational approach calls for the nurse or other health care provider to elicit the parent's current knowledge and beliefs. Then together, the nurse and parent explore for any gaps or misconceptions in the knowledge. Once a parent recognizes that his or her knowledge base is incomplete or flawed, he or she is more open to conceptual change. Only at this phase is the parent ready for the nurse to provide additional information to fill the gaps and begin to rectify the misconceptions. A summary of the newly introduced information provides the nurse the opportunity to discuss how it can be used to improve outcomes in the infant. The representational approach is a fluid approach because the parent must again return to the new knowledge base and assess for gaps and misconceptions before new information can be added. Although the nurse strives to incorporate parent teaching into every interaction, he or she must also realize that parents seek information on their own. Helping parents to find the best information and communicate regularly with families can be an enormous undertaking. Providing a safe and easy way to facilitate communication between families and health professionals is important. Internet-based programs created by neonatologists, nurse practitioners, nurses, respiratory therapists, social workers, child life specialists, and technology support personnel can be found on the World Wide Web. They serve a wide variety of functions, including providing parents with a secure way to communicate with the health care team, allowing parents to receive updates on their infant's condition,
viewing daily photographs, searching topics that relate to their infant's medical conditions, learning about how to care for their critically ill newborn, and learning how to prepare for discharge. Studies of hospitals using these types of program have found that parents report a higher level of overall satisfaction with the care their infant received in the NICU. They also show that reports of problems with quality of care decreased by 75%.2 Initially, it was thought that such Internet-based programs would not serve all populations (ie, lower vs higher economic status) with infants in the NICU. Some thought that if a variety of social or economic factors existed, it was more important to address those through multiple strategies and provide handouts, booklets, individualized teaching off the unit, and/or taxi vouchers instead of technology-based resources.2 However, this way of thinking only results in more disparity and does not address the issue of the need for all to receive health care information in the most up-to-date fashion. Most households today have access to a computer, and computer/Internet access can also be made available within the health care setting. In today's world, most of us are being inundated with an abundance of information each day. Helping families to sift
through and make sense of this information is important in facilitating their transition to parenthood of a child who has required admission to the NICU. This different beginning makes these families more vulnerable, and we need to increase their confidence and competence in being able to care best for their infant. The sooner we help parents to assume this role for their child, the better the long-term outcomes for the infant and family.
References 1. Brazy JE, Anderson BMH, Becker PT, Becker M. How parents of premature infants gather information and obtain support. Neonatal Netw. 2001;20:41-48. 2. Safran C. The collaborative edge: patient empowerment for vulnerable populations. Int J Med Inform. 2003;69:185-190. 3. O'Connor JB, Johanson JF. Use of Web for medical information by gastroenterology clinic population. JAMA. 2000;284:1962-1964. 4. Donovan HS, Ward SE, Song MK. An update on the representational approach to patient education. J Nurs Scholarsh. 2007;39:259-265.
VOLUME 8, NUMBER 3, SEPTEMBER 2008
119