Educational Priorities for Providing End-of-Life Care: Parent Perspectives.

OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care. METHODS: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process. RESULTS: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges. CONCLUSIONS: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.

Compassionate extubation protocol to improve team communication and support in the neonatal intensive care unit.

OBJECTIVE: Compassionate extubation (CE) can be stressful for staff and families in the neonatal intensive care unit (NICU). Our quality improvement initiative developed and implemented a novel symptom management and family support checklist and post-debriefing template to improve team communication and staff support. STUDY DESIGN: An interprofessional team performed a needs assessment, determined key drivers and intervention steps, and implemented changes using Plan-Do-Study-Act cycles. Outcomes included nursing perception of good communication with the medical team, nursing assessment of patient comfort after CE, and frequency of post-event debrief. Outcomes were analyzed using time series design with 12 months baseline data and 6 months post-implementation monitoring. RESULT: Eighteen events were studied. Respondents endorsing "good" communication with the medical team increased by 60%, and debrief participation rate improved by 96%. CONCLUSION: Implementation of a CE checklist and post-event debriefing sheet was associated with increased rate of debriefs and improved team communication.

Process Evaluation of a Stress Management Program for Low-Income Pregnant Women: The SMART Moms/Mamás LÍSTAS Project.

Background. The SMART Moms/Mamás LÍSTAS Project was a randomized control trial that tested the efficacy of a prenatal stress management program in reducing stress and cortisol levels among low-income women. The current study is a process evaluation of the stress management program (intervention arm of the original randomized controlled trial) and assessed whether implementation fidelity factors (i.e., intervention delivery, receipt, and enactment) were associated with lower stress (perceived stress, salivary cortisol), improved negative and positive mood states (Positive and Negative Affect Schedule), and increased confidence to use relaxation and coping skills. Method. Fifty-five low-income pregnant women (71% Latina, 76% annual income <$20,000) attended weekly group-based sessions over an 8-week period in which a clinically trained researcher taught relaxation and coping skills. Process evaluation measures were obtained via participant self-report and videotaped class sessions that were coded for delivery, receipt, and enactment of the intervention to determine which implementation factors were associated with changes in program outcomes (stress, mood, confidence) over the 8-week period. Results. Women in stress management showed a significant reduction in their stress and cortisol levels (p < .001), improvements in negative and positive mood states (p < .001) and were more confident in using relaxation and coping skills postintervention (74%). The implementation factors of delivery (i.e., instructor adherence to intervention content; p = .03) and enactment (i.e., participant use of intervention skills; p = .02) were most associated with improvements in program outcomes. Conclusion. These findings highlight that implementation factors should be considered when delivering stress management interventions in underserved communities.