RESUMO
Nurses have moral obligations incurred by membership in the profession to participate knowingly in health policy advocacy. Many barriers have historically hindered nurses from realizing their potential to advance health policy. The contemporary political context sets additional challenges to policy work due to polarization and conflict. Nursing education can help nurses recognize their role in advancing health through political advocacy in a manner that is consistent with disciplinary knowledge and ethical responsibilities. In this paper, the authors describe an exemplar of Elizabeth Barrett's "Power as Knowing Participation in Change" theory as a disciplinary lens within a doctoral nursing health policy course. Barrett (radically) emphasizes "power as freedom" instead of "power as control." This approach is congruent with nursing disciplinary values and enhances awareness of personal freedom and building collaborative relationships in the policy process. The theory was used in concert with other traditional policy content and frameworks from nursing and other disciplines. We discuss the role of nursing ethics viewed as professional responsibility for policy action, an overview of Barrett's theory, and the design of the course. Four student reflections on how the course influenced their thinking about policy advocacy are included. While not specific to policymaking, Barrett's theory provides a disciplinary grounding to increase students' awareness of freedom and choices in political advocacy participation. Our experience suggests that Barrett's work can be fruitful for enhancing nurses' awareness of choices to participate in change across settings.
RESUMO
BACKGROUND: Children with medical complexity (CMC) account for 1% of children in the United States. These children experience frequent hospital readmissions, high healthcare costs and poor health outcomes. A link between CMC caregiver social support, resilience and hospital readmissions has never been fully investigated. This study examines the feasibility of a prospective, descriptive, repeated measures research design to characterize CMC and their caregivers, social supports, caregiver resilience and hospital readmissions to inform a larger prospective investigation. METHODS: Caregivers of CMC with unplanned hospitalizations completed surveys at the index hospitalization and 30 and 60 days after discharge. CMC caregiver and child characteristics, social supports and hospital readmissions were examined using an investigator-developed survey. Resilience was measured using the Resilience Scale-14© (7-Point Likert Scale, score range 14-98), and feasibility was measured by calculating enrolment, attrition, survey completion and item response. Analysis included descriptive statistics and qualitative data visualization. RESULTS: Of caregivers who were approached for participation, 81.1% consented and completed 76 surveys. Attrition was 31%. Item response rates were ≥ 90% for all but one item. A total of 62.1% of children had hospital readmissions within 90 days and 37.9% within 30 days. Additionally, 70% of caregivers had home care nursing, but the approved hours were only partially filled. More than 70% of caregiver resilience scores were moderate to high (score range 74-98) and were stable across repeated measures and hospital readmissions. Open-ended question responses revealed the following five categories: All-consuming, Family Reliance, Impact of Covid, Taking Action and Broken System. CONCLUSIONS: Studying CMC caregiver social supports and resilience using repeated measures is feasible. CMC caregivers reported stressors including coordinating their child's substantial healthcare needs and managing partially filled home care nursing hours. Caregiver resilience remained stable over time, amidst frequent CMC hospital readmissions. Findings can inform future research priorities and power analyses for CMC caregiver resilience.