The family experience in the 31-bed pediatric intensive care unit (PICU) at Texas Children’s Hospital was largely unknown, primarily because of the absence of a mechanism to solicit feedback from the families of the patients in the PICU. Measures of patient satisfaction were obtained from families of patients who were discharged directly home from the PICU. Since discharges to home are rare in the intensive care setting, meaningful and actionable data were challenging to obtain.
The PICU team embarked on a quality improvement project aimed at gaining an understanding of the family experience during the PICU stay. The specific goals of the two-phase project were to develop a reliable process of soliciting meaningful information and to improve any gaps identified in the process.
A survey was developed in partnership with a PICU family advocate and a hospital family experience consultant. A third-party vendor reviewed the questions to ensure that no redundancies existed between the PICU survey and the survey that families received after discharge from the hospital.
Since partnerships with families are essential to good PICU care, the 10-item questionnaire was designed so that the team can learn how well nurses and physicians partnered with the families through participation in daily rounding and routine communication. The survey was made available to families who were due to transfer out of the PICU. Tablets were utilized to make the survey accessible at the point of care (POC), for ease of data collection and analysis.
The initial phase of the project highlighted the need for the PICU team to encourage families to write down questions and concerns (See Table 1). It was clear that, beyond daily multidisciplinary rounds, families had limited ways of communicating with their child’s care team. A method for families to record important information and remember burning questions for the care team was missing.
The team learned that a family care journal (FCJ) had already been developed by the Family-Centered Care Program. The FCJ is a notebook that includes information about the services that the hospital provides for families. Most importantly, the FCJ contains pages for family members to keep track of medications, procedures, and names of care team members, as well as blank pages for questions, concerns, and feelings. Its purpose is to facilitate communication between the family and the care team. Families keep the journal without any expectation of sharing its contents with others. Currently, the FCJ is available in English and Spanish.
Throughout the second phase of the project, the survey administration continued to evaluate the impact of the FCJ on the identified gaps.
Six months into the project, several education and process changes were made to address challenges specific to journal distribution and educational opportunities highlighted by the survey, as follows:
- Education changes
- To increase comfort with transferring out of the PICU, nurses and physicians were encouraged to use language that reinforced the improvement of their child’s health.
- Staff members were encouraged to remind families to use their journals and to help obtain surveys.
- Process changes
- The responsibility of distributing journals and surveys was shifted from nurses to the receptionist.
- Journals were distributed in the PICU waiting area at the time of admission.
Results showed improvement in almost all of the items on the survey from the first phase to the second, as shown in Table 1.
Free-text responses revealed encouraging themes and additional improvement opportunities, including:
- Communication with non-ICU teams
- Comfort level at time of transfer to lower level of care
- Environmental factors
- Positive feedback about direct nursing care, which was shared with the staff during quarterly state-of-the-unit meeting
Over 500 journals have been distributed since the start of the project one year ago, and 78% of those who responded to the family experience survey (n = 188) have reported that the FCJ was a useful tool during their child’s PICU stay. The FCJ has improved the family experience in the PICU by engaging families in their child’s care. The POC administration survey yields a greater amount of meaningful and actionable information on how we can improve partnership between families and the PICU teams. Future plans for the project include thematic analysis of comments from the survey and developing and implementing a plan for communication with non-English-speaking families in the PICU.
The family experience project has been a successful initiative that depended on the efforts of a multidisciplinary team. Continued education of staff and oversight of outcomes are necessary to sustain engagement and awareness. Administering a survey in order to seek feedback from PICU families after discharge home from general inpatient care units provides a limited perspective of the family’s experience while in the PICU. This project has demonstrated that a combination of an electronic POC survey and the FCJ can provide teams with realtime actionable information to improve the partnership between clinicians and families.