Caregiver Experiences in Pediatric Hospitalizations: Challenges and Opportunities for Improvement.

BACKGROUND: There are limited qualitative data describing general pediatric hospitalizations through the caregivers' lens, and most focus on one particular challenge or time during the hospitalization. This qualitative study aimed to address a gap in the description of the breadth and depth of personal challenges caregivers may face during the entire hospitalization, irrespective of severity of patient illness or diagnosis, and explored caregiver-suggested interventions. METHODS: Caregivers of pediatric patients on the hospitalist service at a Pacific Northwest children's hospital were interviewed to explore their hospitalization experience and solicit feedback for potential interventions. Content was coded iteratively using a framework analysis until thematic saturation was met. Findings were triangulated through 2 focus groups, 1 with parent advisors and the other with hospital physicians and nurses. RESULTS: Among 14 caregivers (7 each of readmitted and newly admitted patients) and focus group participants, emergent domains on difficulties faced with their child's hospitalization were anchored on physiologic (sleep, personal hygiene, and food), psychosocial (feelings of isolation, mental stress), and communication challenges (information flow between families and the medical teams). Caregivers recognized that addressing physiologic and psychosocial needs better enabled them to advocate for their child and suggested interventions to ameliorate hospital challenges. CONCLUSIONS: Addressing physiologic and psychosocial needs may reduce barriers to caregivers optimally caring and advocating for their child. Downstream consequences of unaddressed caregiver challenges should be explored in relation to participation in hospital care and confidence in shared decision-making, both vital components for optimization of family-centered care.

Below the Surface: Caregivers' Experience of Hospital-to-Home Transitions.

OBJECTIVE: Our aim was to understand the breadth of the hospital-to-home experience from the caregiver perspective using a mixed method approach. METHODS: Caregivers of children who experienced an inpatient admission (N = 184) completed a hospital-to-home transition questionnaire after discharge. Twenty-six closed-ended survey items captured child's hospitalization, discharge, and postdischarge experiences and were analyzed using descriptive statistics. Four additional free-response items allowed caregivers to expand on specific challenges or issues. A conventional content analysis coding framework was applied to the free responses. RESULTS: Ninety-one percent of caregivers reported satisfaction with the hospital experience and 88% reported they understood how to manage their child's health after discharge. A majority of survey respondents (74%) provided answers to 1 or more of the qualitative free-response items. In the predischarge period, qualitative responses centered on concerns related to finances or available resources and support, communication, hospital environment, and the discharge process. Responses for the postdischarge time period centered on family well-being (child health, other family member health), finances (bills, cost of missed work), and medical follow-up (supplies, appointments, instruction). CONCLUSIONS: Caregivers were generally satisfied with their hospital experience; however, incorporating survey items specifically related to family stressors either through closed- or open-ended questions gave a richer context for caregiver-identified concerns. Basing future quality improvement efforts on supporting caregiver needs and identifying stressors before discharge may make for a more robust and successful transition to home.

The Role of Caregiver-Reported Risks in Predicting Adverse Pediatric Outcomes.

OBJECTIVE: Certain social risk factors (e.g., housing instability, food insecurity) have been shown to directly and indirectly influence pediatric health outcomes; however, there is limited understanding of which social factors are most salient for children admitted to the hospital. This study examines how caregiver-reported social and medical characteristics of children experiencing an inpatient admission are associated with the presence of future health complications. METHODS: Caregivers of children experiencing an inpatient admission (N = 249) completed a predischarge questionnaire designed to capture medical and social risk factors across systems (e.g., patient, caregiver, family, community, healthcare environment). Electronic health record (EHR) data were reviewed for child demographic data, chronic disease status, and subsequent emergency department visits or readmissions (i.e., acute events) 90 days postindex hospitalization. Associations between risk factors and event presence were estimated using odds ratios (ORs) and confidence intervals (CI), both unadjusted and adjusted OR (aOR) for chronic disease and age. RESULTS: Thirty-three percent (N = 82) of children experienced at least one event. After accounting for child age and chronic disease status, caregiver perceptions of child's health being generally "poor" or "not good" prior to discharge (aOR = 4.7, 95% CI = 2.3, 9.7), having high care coordination needs (aOR = 3.2, 95% CI = 1.6, 6.1), and experiencing difficulty accessing care coordination (aOR = 2.5, 95% CI = 1.4, 4.7) were significantly associated with return events. CONCLUSIONS: Caregiver report of risks may provide valuable information above and beyond EHR records to both determine risk of future health problems and inform intervention development.

Identification of Caregiver-Reported Social Risk Factors in Hospitalized Children.

OBJECTIVES: Although health systems are increasingly moving toward addressing social determinants of health, social risk screening for hospitalized children is largely unexplored. We sought to determine if inpatient screening was feasible and describe the prevalence of social risk among children and caregivers, with special attention given to children with chronic conditions. METHODS: Caregivers of pediatric patients on the hospitalist service at a children's hospital in the Pacific Northwest completed a social risk survey in 2017. This survey was used to capture items related to caregiver demographics; socioeconomic, psychosocial, and household risks; and adverse childhood experiences (ACEs). Charts were reviewed for child demographics and medical complexity. Results were tabulated as frequency distributions, and analyses compared the association of risk factors with a child's medical complexity by using χ2 tests. RESULTS: A total of 265 out of 304 (87%) caregivers consented to participate. One in 3 families endorsed markers of financial stress (eg, difficulty paying for food, rent, or utilities). Forty percent experienced medical bill or insurance troubles. Caregiver mental health concerns were prevalent, affecting over one-third of all respondents. ACEs were also common, with 38% of children having at least 1 ACE. The presence of any ACE was more likely for children with chronic conditions than those without. CONCLUSIONS: We found that social risk screening in the inpatient setting was feasible; social risk was uniformly common and did not disproportionately affect those with chronic diseases. Knowing the prevalence of social risk may assist in appropriate alignment of interventions tiered by social complexity.