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.

Serving young children with communication disabilities from Latinx backgrounds and their families with equity: Provider perspectives.

INTRODUCTION: Latinx children with communication disorders from birth to age 5 and their families are increasingly served in United States (US) educational and medical settings where longstanding structural barriers threaten their access to equitable assessment and intervention. However, little is known about providers' perceptions serving this highly diverse population as they relate to reducing disparities in care for communication disorders. METHODS: This exploratory qualitative study interviewed 24 speech-language pathologists (SLPs) and early intervention (EI)/early childhood special education (ECSE) developmental specialists serving young Latinx children with communication disorders to offer targeted recommendations toward improving equity. The semi-structured interview included questions regarding communication assessment, diagnostics/eligibility, intervention, interpretation, translation, and solutions to enhance EI/ECSE. Interviews were coded with content analysis using elements of grounded theory, and responses from SLPs in medical versus education settings and from EI/ECSE developmental specialists were compared. Data triangulation was used to validate themes. RESULTS: Analysis revealed the following themes related to provider challenges and resources: family factors, provider factors, cultural and linguistic differences, assessment approaches, eligibility determinations, translation and interpretation, and institutional factors. Few variations in themes between provider types (SLPs vs. EI/ECSE developmental specialists) and settings (medical vs. educational) were found. Providers also offered several policy and practice solutions. CONCLUSIONS: Findings suggest minimal advances in improving equity for young Latinx children with communication disorders over prior decades. Results also indicate that providers may benefit from reflecting on their cultures and biases as well as systemic racism within EI/ECSE.

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.