NICU-2-HOME: Using Health IT to Support Parents of NICU Graduates Transitioning to Home (Illinois)

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Summary:

Transitioning to home from a neonatal intensive care unit (NICU) with a very low birth weight (VLBW) infant can be stressful for parents. VLBW infants who are discharged from the NICU have complicated home and outpatient care needs well into the first year of life, including home oxygen and monitoring, gastrostomy tube feeds, and complex medication regimens. These infants have a high rate of morbidity and have frequent re-hospitalizations. Little research has been done on factors that support parents for a successful transition to the home.

This project developed NICU-2-Home, a patient- and caregiver-centered mobile application (“app”), that provides information to parents of VLBW infants as they transition from the NICU to their homes. It is essential for parents of VLBW infants to feel competent in their ability to care for their high-risk infants to be successful in the parenting role. NICU-2-Home aimed to achieve the “four rights” of delivering the right information at the right time to the right person using the right medium.

The specific aims of this project were as follows:

  • To design a novel mobile phone application, NICU-2-Home, using qualitative methods that would support both mothers and fathers of VLBW NICU graduates as they transition to home. 
  • To implement NICU-2-Home in the NICU and during the transition to home. 
  • To conduct a feasibility study with randomization in the NICU to test the ability of NICU-2- Home. 

Qualitative interviews were conducted with parents to identify concerns about providing care to their infant with VLBW. The following four themes emerged: 1) mothers were the primary information seekers, and their preferred information source was parenting Web sites; 2) both parents were concerned with online privacy issues and mistrust in health information found on the Internet; 3) parents looked for people like themselves online; for instance, mothers looked for blogs written by other mothers in the same situation; and 4) choosing a health care provider and scheduling appointments typically fell to the mothers. These findings informed the design of the NICU-2-Home app.

A randomized controlled trial evaluated the effect of the app. At baseline, self-efficacy scores were equal for participants randomized to the NICU-2-Home intervention and the standard of care control group. At followup, the intervention group showed a moderate increase in parental sense of competence, and greater use of the app was associated with improved parental sense of competence, preparedness for discharge, and length of stay. The study team concluded that bolstering parents’ self-efficacy and competence using a mobile phone intervention supported primary caregivers, which may ultimately improve VLBW infant outcomes.

NICU-2-HOME: Using Health IT to Support Parents of NICU Graduates Transitioning to Home - 2012

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS08-269: Exploratory and Developmental Grant to Improve Health Care Quality through Health Information Technology (IT) (R21)
  • Grant Number: 
    R21 HS 020316
  • Project Period: 
    September 2011 – September 2013
  • AHRQ Funding Amount: 
    $299,999
  • PDF Version: 
    (PDF, 268.21 KB)

Summary: Transitioning to home from a neonatal intensive care unit (NICU) with a very low birth weight (VLBW) infant can be stressful for parents. VLBW infants who are discharged, or “graduate” from the NICU have complicated home and outpatient care needs well into the first year of life and beyond. Many are discharged from the hospital with special health care needs, including home oxygen and monitoring, gastrostomy tube feeds, and complex medication regimens. These infants have a high rate of morbidity and frequent re-hospitalizations. Little research has been done on the factors that support parents in the successful transition of their VLBW infant from the NICU to the home, although research indicates that parents feel anxious and unprepared for discharge.

In an effort to support parents of VLBW NICU graduates, this project has developed a health information technology (IT) intervention known as the NICU-2-Home Service. This patient-and caregiver-centered service uses IT to provide parents with information and a means of communication as they move from the NICU to their homes and eventually establish a medical home with their pediatrician. The NICU-2-Home system was developed in collaboration with researchers at Northwestern University’s Feinberg School of Medicine and the technology company Motorola Mobility, Inc. Appropriate clinical, educational, and patient medical information such as immunization history and growth data form the foundation of the system.

Smart phones with NICU-2-Home mobile applications and a NICU-2-Home server allow immediate delivery of necessary information to the appropriate person. An iterative development process was used to build and refine the system. Focus groups and interviews were conducted to collect qualitative data from primary users of the service—parents, neonatologists, and pediatricians—to inform the development of the content, format, and interface of the system. A prototype was developed and tested with subsequent focus groups to provide additional feedback and assessment. Once final content and design decisions were made, the NICU-2-Home system was pilot tested and its impact on outcomes such as parental self-efficacy, involvement, and stress levels were evaluated. The final component of this project involves a feasibility test in which parents of 100 VLBW NICU graduates will be randomized to a 1-month intervention of the NICU-2-Home Service or a control group.

Specific Aims:

  • Design a novel health IT intervention, NICU-2-Home, using qualitative methods that will support both mothers and fathers of VLBW NICU graduates as they transition to home. (Achieved)
  • Implement NICU-2-Home in the NICU and during the transition to home. (Ongoing)
  • Conduct a feasibility study with randomization in the NICU to test the ability of NICU-2-Home to: improve mothers’ and fathers’ self-efficacy and confidence in caring for their VLBW infants; decrease mothers’ and fathers’ stress as measured by self-report and salivary cortisol sampling; and enhance mothers’ and fathers’ involvement as measured using standardized tools with their VLBW infants as compared to controls. (Ongoing)

2012 Activities: Development of the NICU-2-Home prototype was completed and evaluated among six sets of parents. The prototype application was installed on study smart phones. The project team described the goals of the application to the parents and walked them through the features of the application. Their feedback was incorporated into the prototype. The evaluation also indicated a need for and guided the development of an orientation manual of the NICU-2-Home application for parents. The revised prototype was then pilot tested among three sets of parents and findings were integrated into the final prototype. Enrollment for the feasibility study of the final NICU-2-Home prototype will start in January 2013. The study will recruit parents of VLBW NICU graduates.

As last self-reported in the AHRQ Research Reporting System, project progress and activities are mostly on track and the project budget funds are somewhat underspent. Funds budgeted for the feasibility study, including participant fees and cell phone and data service, will be accrued during 2013, bringing the budget spending back on track.

Preliminary Impact and Findings: The project has no findings to date.

Target Population: Children with Special Health Care Needs, Pediatric*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

*This target population is one of AHRQ’s priority populations.

NICU-2-HOME: Using HIT to support parents of NICU graduates transitioning home - 2011

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS08-269: Exploratory and Developmental Grant to Improve Health Care Quality through Health Information Technology (IT) (R21)
  • Grant Number: 
    R21 HS 020316
  • Project Period: 
    September 2011 - September 2013
  • AHRQ Funding Amount: 
    $299,999
  • PDF Version: 
    (PDF, 180.25 KB)

Summary: Transitioning to home from a neonatal intensive care unit (NICU) with a very low birth weight (VLBW) infant can be stressful for parents. VLBW infants who are discharged, or "graduate," from the NICU have complicated home and outpatient care needs well into the first year of life and beyond. Many are discharged from the hospital with special health care needs, including home oxygen and monitoring, gastrostomy tube feeds, and complex medication regimens. These infants have a high rate of morbidity and frequent re-hospitalizations. Little research has been done on the factors that support parents in the successful transition of their VLBW infant from the NICU to the home, although research indicates that parents feel anxious and unprepared for discharge.

In an effort to support parents of VLBW NICU graduates, this project is developing a health information technology (IT) intervention known as the NICU-2-Home Service. This patient-and caregiver-centered service uses IT, including smart phones and tablets, to provide an informational and communication lifeline to parents as they move from the NICU to their homes and eventually establish a medical home with their pediatrician. The service is intended to empower parents, increase their self-efficacy and competency, and reduce their stress in caring for their NICU graduates. Mobile communication technologies and digital media content will provide parents with supportive guidance on the discharge process and post-discharge care; easy access to information and enhanced communication; tools, such as a care calendar and a care diary, to streamline the transition from the NICU to home; and links between the NICU, home, and the community pediatrician after discharge.

The NICU-2-Home system is being developed in collaboration with researchers at Northwestern University's Feinberg School of Medicine and the technology company Motorola Mobility, Inc. Appropriate clinical, educational, and medical history information such as patient clinical information, immunization history, and growth data will form the foundation of the system. Smart phones with NICU- 2-Home mobile applications, a bedside tablet, and a NICU-2-Home server will allow immediate delivery of necessary information to the appropriate person. An iterative development process is being used to build and refine the system. Focus groups have been conducted to collect qualitative data from primary users of the service-parents, neonatologists, and pediatricians. The data will help inform the development of the content, format, and interface of the system. A prototype will be developed and subsequent focus groups will provide additional feedback and assessment. Once final content and design decisions are made, the NICU-2-Home system will be pilot tested and its impact on outcomes such as parental self-efficacy, involvement, and stress levels will be evaluated. The final component of this project involves a feasibility test in which parents of 100 VLBW NICU graduates will be randomized to a 1-month intervention of the NICU-2-Home Service or a control group.

Specific Aims:

  • Design a novel health IT intervention, NICU-2-Home, using qualitative methods that will support both mothers and fathers of VLBW NICU graduates as they transition to home. (Ongoing)
  • Implement NICU-2-Home in the NICU and during the transition to home. (Upcoming)
  • Conduct a feasibility study with randomization in the NICU to test the ability of NICU-2-Home to: improve mothers' and fathers' self-efficacy and confidence in caring for their VLBW infants; decrease mothers' and fathers' stress as measured by self-report and salivary cortisol sampling; and enhance mothers' and fathers' involvement as measured using standardized tools with their VLBW infants as compared to controls. (Upcoming)

2011 Activities: Activities related to the development of the NICU-2-Home Service are well underway. Focus groups have been conducted with three groups of stakeholders: 1) mothers and fathers of VLBW infants in the NICU; 2) neonatologists; and 3) pediatricians. The data collected from the focus groups are currently being transcribed, coded, and analyzed.

As last self-reported in the AHRQ Research Reporting System, project progress and activities are mostly on track and the project budget funds are somewhat underspent. As staff were in process of being hired, personnel costs were less than projected for the first quarter of the project.

Preliminary Impact and Findings: This project has no findings to date.

Target Population: Children with Special Health Care Needs (CSHCN), Pediatric*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions in care settings, and the use of electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

* This target population is one of AHRQ's priority populations.

NICU-2-HOME: Using Health IT to Support Parents of NICU Graduates Transitioning to Home - Final Report

Citation:
Garfield C. NICU-2-HOME: Using Health IT to Support Parents of NICU Graduates Transitioning to Home - Final Report. (Prepared by Northwestern University under Grant No. R21 HS020316). Rockville, MD: Agency for Healthcare Research and Quality, 2014. (PDF, 900.08 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services. (Persons using assistive technology may not be able to fully access information in this report. For assistance, please contact Corey Mackison)
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