Development and usability testing of a parent decision support tool for the neonatal intensive care unit

Abstract

In this paper we present the development and evaluation of a parent decision support tool for a neonatal intensive care unit (NICU), known as PPADS or Physician and Parent Decision Support. The NICU interprofessional (IP) team uses advanced technology to care for the sickest infants in the hospital, some at the edge of viability. Many difficult care decisions are made daily for this vulnerable population. The PPADS tool, a computerized decision support system, aims to augment current NICU decision-making by helping parents make more informed decisions, improving physician-parent communication, increasing parent decision-making satisfaction, decreasing conflict, and increasing decision efficiency when faced with ethically challenging situations. The development and evaluation of the PPADS tool followed a five step methodology: assessing the clinical environment, establishing the design criteria, developing the system design, implementing the system, and performing usability testing. Usability testing of the PPADS tool with parents of neonates who have graduated (survived) from a tertiary level NICU demonstrates the usefulness and ease of use of the tool.

Inpatient Portals for Hospitalized Patients and Caregivers: A Systematic Review

“…Most included studies evaluated patient and/or caregiver information needs to design and/or enhance inpatient portals. 16,24–37 In 1 study, patients described an overall lack of information provided in the hospital and insufficient time to understand and remember information, which, when shared, was often presented by using medical terminology. 30 They wanted information to help them understand their daily hospital routine, confirm and compare medications and test results, learn about care, and prepare for discharge.…”

“…Most patient and/or caregiver participants in included studies were interested in using an inpatient portal, used it when offered, found it easy to use, useful, and/or were satisfied with it. 16,18,24–37 Most used and liked functionalities that provided healthcare team, test result, and medication information. 22,33,37 In the 1 identified controlled trial, 18 researchers evaluated an inpatient portal given to adult inpatients that included a problem list, schedule, medication list, and healthcare team information.…”

Evidence summaries (decision boxes) to prepare clinicians for shared decision-making with patients: a mixed methods implementation study

“…This suggests that integrating users’ evaluation of each Dbox in a feedback loop is essential and that using the Dbox template alone, although helpful to optimize the overall design of the Dbox, is not sufficient to ensure that the content matches all of the user’s decision-making and reasoning skills and information-processing needs. Iterative development, one principle of usability testing, is used increasingly in health care [ 54 - 56 ] and allows users to partake in designing communication materials that are not only readable and understandable but also engaging and actionable [ 57 ].…”

Partners in Care

“…A few researchers have looked at technologies for caregivers of young patients in hospital wards, such as the neonatal intensive care unit (NICU), where parents who are physically separated from their child require access to clinical information to make decisions about care or treatment [1,24,36]. Except for these specific contexts, little is known about caregivers as users of patient engagement technologies in the hospital.…”