Parent Activation in the Neonatal Intensive Care Unit.

OBJECTIVE: Patient activation is the knowledge, skills, and confidence to manage one's health; parent activation is a comparable concept related to a parent's ability to manage a child's health. Activation in adults is a modifiable risk factor and associated with clinical outcomes and health care utilization. We examined activation in parents of hospitalized newborns observing temporal trends and associations with sociodemographic characteristics, neonate characteristics, and outcomes. STUDY DESIGN: Participants included adult parents of neonates admitted to a level-IV neonatal intensive care unit in an academic medical center. Activation was measured with the 10-item Parent version of the Patient Activation Measure (P-PAM) at admission, discharge, and 30 days after discharge. Associations with sociodemographic variables, health literacy, clinical variables, and health care utilization were evaluated. RESULTS: A total of 96 adults of 64 neonates were enrolled. The overall mean P-PAM score on admission was 81.8 (standard deviation [SD] = 18), 88.8 (SD = 13) at discharge, and 86.8 (SD = 16) at 30-day follow-up. Using linear mixed regression model, P-PAM score was significantly associated with timing of measurement. Higher P-PAM scores were associated with higher health literacy (p = 0.002) and higher in mothers compared to fathers (p = 0.040). There were no significant associations of admission P-PAM scores with sociodemographic characteristics. Parents of neonates who had a surgical diagnosis had a statistically significant (p = 0.003) lower score than those who did not. There were no associations between discharge P-PAM scores and neonates' lengths of stay or other indicators of illness severity. CONCLUSION: Parental activation in the NICU setting was higher than reported in the adult and limited pediatric literature; scores increased from admission to discharge and 30-day postdischarge. Activation was higher in mothers and parents with higher health literacy. Additional larger scale studies are needed to determine whether parental activation is associated with long-term health care outcomes as seen in adults. KEY POINTS: · Little is known about activation in parents of neonates.. · Activation plays a role in health outcomes in adults.. · Larger studies are needed to explore parent activation..

Health Management in the Home: A Qualitative Study of Pregnant Women and Their Caregivers.

With growth in consumer health technologies, patients and caregivers have become increasingly involved in their health and medical care. Such health-related engagement often occurs at home. Pregnancy is a common condition and, for many women, their first exposure to health management practices. This study examined how pregnant women and caregivers managed health in their homes. Participants completed sociodemographic surveys and semi-structured interviews about living situation, information needs, and technology use. Using an iterative, inductive coding approach, we identified themes about health management, including the physical home, help at home, community, the virtual home, and biggest concerns. Most expectant mothers encountered everyday problems with mobility and household management. Pregnant women desired more assistance from caregivers, who often did not know how to help. Caregivers who provided help took on new roles. Many expectant families did not trust advice found online. Over half of expectant families had biggest concerns that involved the home.

Common Consumer Health-Related Needs in the Pediatric Hospital Setting: Lessons from an Engagement Consultation Service.

BACKGROUND: Informed and engaged parents may influence outcomes for childhood illness. Understanding the needs of the caregivers of pediatric patients is a critical first step in promoting engagement in their child's care. In 2014, we developed an Engagement Consultation Service at the Monroe Carell Jr. Children's Hospital at Vanderbilt. This service determines the health-related needs of the caregivers of hospitalized children and makes educational or technology recommendations to meet those needs and support engagement. OBJECTIVES: This report describes the most common health-related needs identified in the caregivers of hospitalized pediatric patients and details the recommended interventions to meet those needs. METHODS: The most commonly reported consumer health-related needs from our 3-year experience with the Engagement Consultation Service were extracted from consultations notes. Each need was classified by semantic type using a taxonomy of consumer health needs. Typical recommendations for each need and their administration were detailed. RESULTS: The most frequently recognized needs involved communicating with health care providers after discharge, using medical devices, distinguishing between benign and concerning symptoms, knowing what questions to ask providers and remembering them, finding trustworthy sources of information online, understanding disease prognosis, and getting emotional support. A variety of apps, Web sites, printed materials, and online groups were recommended. CONCLUSION: The parents of hospitalized patients share several common health-related needs that can be addressed with educational and technology interventions. An inpatient Engagement Consultation Service provides a generalizable framework for identifying health-related needs and delivers tools to meet those needs and promote engagement during and after hospitalizations.