Thematic Analysis of Parental Experiences of Patients' Orthognathic Surgery.

Orthognathic surgery often requires extensive orthodontic preparation and a prolonged postoperative recovery that can be stressful for patients and their families. Parents are a primary source of support for patients; accordingly, a better understanding of the parents' experience of orthognathic surgery can help inform clinical care. Using a prospective cross-sectional qualitative study design, 4 focus groups (2 English and 2 Spanish; mean length 65 min) were held with parents of patients who had completed orthognathic surgery for class II/III malocclusion. Thematic content analysis of the group transcriptions was conducted. Participants were 10 mothers and 3 fathers of 12 children (50% with cleft lip/palate) ages 17 to 23 who completed LeFort I (41.7%), LeFort I with bilateral sagittal split osteotomy (BSSO; 41.7%), or BSSO (16.7%) within the prior 3 to 16 months. Themes fit within a chronological framework: (1) Preparing for Surgery included their larger health context, anticipating surgery, surgery preparation by team and family, and religious faith; (2) Challenges after Surgery consisted of complications, pain, frustration, nutritional challenges, parental anxiety, activity changes, sleep, breathing issues, swelling, and unanticipated aspects of surgery; and (3) Supports after Surgery were nutritional support, appreciation of medical team, postoperative improvements, appearance changes, communicating, supporting patient, and patient coping. Parents also offered advice for families and medical teams. Surgeons and other providers who are part of orthognathic surgical preparation can implement recommendations based on parental experiences to increase patient and family readiness for surgery by providing early education, assisting with advocacy, focusing on nutrition, and supporting coping.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

Primary Intensivists and Nurses for Long-Stay Patients: A Survey of Practices and Perceptions at Academic PICUs.

OBJECTIVES: To determine the prevalence of the utilization of primary intensivists and primary nurses for long-stay patients in large, academic PICU and ascertain how these practices are operationalized and perceived. DESIGN: A cross-sectional survey. SETTING: U.S. PICUs with accredited Pediatric Critical Care Medicine fellowships. SUBJECTS: One senior physician and one senior nurse at each institution. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Separate but largely analogous questionnaires for intensivists and nurses were created using an iterative process to enhance content/face validity and readability. Sixty-seven intensivists (representing 93% of the 72 institutions with fellowship programs and their PICUs) and 59 nurses (representing 82%) responded. Twenty-four institutions utilize primary intensivists; 30 utilize primary nurses; and 13 utilize both. Most institutions use length of stay and/or other criteria (e.g., medical complexity) for eligibility. Commonly, not all patients that meet eligibility criteria receive primaries. Primary providers are overwhelmingly volunteers, and often only a fraction of providers participate. Primary intensivists at a large majority (>75%) of institutions facilitate information sharing and decision-making, attend family/team meetings, visit patients/families regularly, and are otherwise available upon request. Primary nurses at a similar majority of institutions provide consistent bedside care, facilitate information sharing, and attend family/team meetings. A large majority of respondents thought that primary intensivists increase patient/family satisfaction, reduce their stress, improve provider communication, and reduce conflict, whereas primary nurses similarly increase patient/family satisfaction. More than half of respondents shared that these practices can sometimes require effort (e.g., time and emotion), complicate decision-making, and/or reduce staffing flexibility. CONCLUSIONS: Primary practices are potential strategies to augment rotating PICU care models and better serve the needs of long-stay and other patients. These practices are being utilized to varying extents and with some operationalization uniformity at large, academic PICUs.

Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.

Longitudinal impact of a poverty simulation on healthcare practitioners' attitudes towards poverty.

BACKGROUND: Many clinicians have limited knowledge about the challenges of living in poverty, leading to stigma and differential treatment in healthcare settings. A poverty simulation event may help clinicians gain empathy and knowledge about the ways that poverty impacts health and well-being. PURPOSE: This study evaluated the impact of a poverty simulation and the effect of personal characteristics on clinicians' attitudes towards poverty. METHODS: Using a prospective longitudinal mixed-methods study design, a convenience sampling of clinicians from a freestanding children's hospital was recruited to participate in a poverty simulation event. The 21-item Attitudes Towards Poverty (ATP) tool was administered pre- and post-simulation and at 3 follow-up time points. Multiple linear regression analysis and linear mixed effects models were used to analyze ATP data. Qualitative data were analyzed to identify broad themes. RESULTS: Mean scores in the ATP domains of stigma and structural perspective increased post-simulation, but only stigma scores demonstrated sustained improvement. Scores in the personal deficiency domain remained unchanged. Being male, White, and having Liberal political views were associated with lower ATP scores in our data. Qualitative data show participants felt the simulation generated feelings of compassion and empathy. DISCUSSION: Simulation participation improved ATP scores in two domains immediately post-event, suggesting the simulation positively impacted clinicians' attitudes towards poverty. Follow-up data suggest the impact of the simulation may be temporary. TRANSLATION TO HEALTH EDUCATION PRACTICE: Experiential learning activities, like poverty simulations, help foster awareness and empathy among clinicians but may not have long-term impact. Ongoing education is needed to create a workforce sensitized and equipped to care for families from all backgrounds.

Prevalence of ICU Delirium in Postoperative Pediatric Cardiac Surgery Patients.

OBJECTIVES: The objective of this study was to determine the prevalence of ICU delirium in children less than 18 years old that underwent cardiac surgery within the last 30 days. The secondary aim of the study was to identify risk factors associated with ICU delirium in postoperative pediatric cardiac surgical patients. DESIGN: A 1-day, multicenter point-prevalence study of delirium in pediatric postoperative cardiac surgery patients. SETTING: Twenty-seven pediatric cardiac and general critical care units caring for postoperative pediatric cardiac surgery patients in North America. PATIENTS: All children less than 18 years old hospitalized in the cardiac critical care units at 06:00 on a randomly selected, study day. INTERVENTIONS: Eligible children were screened for delirium using the Cornell Assessment of Pediatric Delirium by the study team in collaboration with the bedside nurse. MEASUREMENT AND MAIN RESULTS: Overall, 181 patients were enrolled and 40% (n = 73) screened positive for delirium. There were no statistically significant differences in patient demographic information, severity of defect or surgical procedure, past medical history, or postoperative day between patients screening positive or negative for delirium. Our bivariate analysis found those patients screening positive had a longer duration of mechanical ventilation (12.8 vs 5.1 d; p = 0.02); required more vasoactive support (55% vs 26%; p = 0.0009); and had a higher number of invasive catheters (4 vs 3 catheters; p = 0.001). Delirium-positive patients received more total opioid exposure (1.80 vs 0.36 mg/kg/d of morphine equivalents; p < 0.001), did not have an ambulation or physical therapy schedule (p = 0.02), had not been out of bed in the previous 24 hours (p < 0.0002), and parents were not at the bedside at time of data collection (p = 0.008). In the mixed-effects logistic regression analysis of modifiable risk factors, the following variables were associated with a positive delirium screen: 1) pain score, per point increase (odds ratio, 1.3; 1.06-1.60); 2) total opioid exposure, per mg/kg/d increase (odds ratio, 1.35; 1.06-1.73); 3) SBS less than 0 (odds ratio, 4.01; 1.21-13.27); 4) pain medication or sedative administered in the previous 4 hours (odds ratio, 3.49; 1.32-9.28); 5) no progressive physical therapy or ambulation schedule in their medical record (odds ratio, 4.40; 1.41-13.68); and 6) parents not at bedside at time of data collection (odds ratio, 2.31; 1.01-5.31). CONCLUSIONS: We found delirium to be a common problem after cardiac surgery with several important modifiable risk factors.

Addressing Healthcare Professional Burnout: A Quality Improvement Intervention.

BACKGROUND: Burnout is a substantial phenomenon across healthcare settings, affecting more than half of healthcare professionals and leading to negative patient and health system outcomes. Infusion center professionals (ICPs) are at increased risk of burnout attributed to high patient volume and acuity levels. Strategies to address burnout have been developed and prioritized by the American Medical Association (AMA), the World Health Organization, and other organizations. AIMS: This quality improvement project aimed to address perceived burnout, job-related stress, and job satisfaction among nurses, physician assistants, and medical assistants at a large pediatric hospital through integration of two infusion center (IC)-based staff engagement interventions. METHODS: A pre- and post-test study design was used. Existing team huddles in the IC were modified based on the AMA STEPS Forward program recommendations to incorporate appreciative inquiry and recognition into team and department events. Peer recognition was tailored toward institutional core values. The Mini-Z Burnout survey was administered before and 3 months after implementation of both interventions. FINDINGS: Pre- to post-intervention responses revealed a higher percentage of staff reporting no burnout (57.7% vs. 75%), low levels of job-related stress (58.8% vs. 65.5%), and satisfaction with current job (70.6% vs. 82.8%). Most participants agreed or strongly agreed that structured huddles (69%) and recognition events (82.8%) were beneficial and recommended continuation (65.5% and 82.8%, respectively). Open-ended responses regarding workplace stressors focused heavily on staffing and patient acuity. LINKING EVIDENCE TO ACTION: Project outcomes support the integration of tailored interventions to reduce burnout among pediatric ICPs. Organizational commitment to addressing burnout can provide incentive to scale up institution-wide staff engagement interventions. Further study is needed to assess the efficiency and effectiveness of such tailored interventions across diverse settings.

Cognitive-linguistic effort in multidisciplinary stroke rehabilitation: Decreasing vs. increasing cues for word retrieval.

Approximately 24% of stroke survivors experience co-occurring aphasia and hemiparesis. These individuals typically attend back-to-back therapy sessions. However, sequentially scheduled therapy may trigger physical and mental fatigue and have an adverse impact on treatment outcomes. The current study tested a hypothesis that exerting less effort during a therapy session would reduce overall fatigue and enhance functional recovery. Two stroke survivors chronically challenged by non-fluent aphasia and right hemiparesis sequentially completed verbal naming and upper-limb tasks on their home computers. The level of cognitive-linguistic effort in speech/language practice was manipulated by presenting verbal naming tasks in two conditions: Decreasing cues (i.e., most-to-least support for word retrieval), and Increasing cues (i.e., least-to-most support). The participants completed the same upper-limb exercises throughout the study periods. Both individuals showed a statistically significant advantage of decreasing cues over increasing cues in word retrieval during the practice period, but not at the end of the practice period or thereafter. The participant with moderate aphasia and hemiparesis achieved clinically meaningful gains in upper-limb functions following the decreasing cues condition, but not after the increasing cues condition. Preliminary findings from the current study suggest a positive impact of decreasing cues in the context of multidisciplinary stroke rehabilitation.

Best Practice in Provider/Parent Interaction.

In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit.

BACKGROUND: Parents of children with complex, chronic conditions report a desire for continuity of care, but relatively little is known about the ways in which nursing continuity of care occurs and the extent to which it is delivered in the inpatient setting. OBJECTIVES: The objective of this analysis, which arose from a study on best practices in parent/nurse interactions in the pediatric intensive care unit (PICU), was to explore the delivery of continuity of nursing care in the PICU from the perspective of both parents and nurses. METHODS: A qualitative, grounded theory study using situational analysis was conducted with seven parents and 12 nurse participants from a single PICU. Data sources included in-depth interviews, observation, and organizational written materials. Data were coded and analyzed using memoing and situational and positional maps to highlight emerging themes, context, and positions within the data. RESULTS: Parents repeatedly endorsed a desire for continuity of nursing care, wanting to ensure that the bedside nurse valued their child as an individual and understood the complexities of the child's care regimen. Nurses understood this need but faced both contextual and personal challenges to achieving continuity, including fluctuations in staffing needs, training demands, fear of emotional entanglement, and concern for missed learning opportunities. DISCUSSION: Continuity of nursing care is highly valued by parents of children with complex chronic condition in the PICU, but significant barriers to optimal delivery exist within the current critical care environment. Mechanisms for supporting nurses to deliver continuity of care are needed, as are alternative ways to help parents feel that all nurses caring for their child have the knowledge necessary to deliver safe and compassionate care.

Is Spending More Time Associated With Less Missed Care?: A Comparison of Time Use and Missed Care Across 15 Nursing Units at 2 Hospitals.

OBJECTIVE: The aim of this study is to examine the relationship between nursing time use and perceptions of missed care. BACKGROUND: Recent literature has highlighted the problem of missed nursing care, but little is known about how nurses' time use patterns are associated with reports of missed care. METHODS: In 15 nursing units at 2 hospitals, we assessed registered nurse (RN) perceptions of missed care, observed time use by RNs, and examined the relationship between time spent and degree of missed care at the nursing unit level. RESULTS: Patterns of time use were similar across hospitals, with 25% of time spent on documentation. For 6 different categories of nursing tasks, no association was detected between time use, including time spent on documentation, and the degree of missed care at the nursing unit level. CONCLUSIONS: Nursing time use cannot fully explain variation in missed care across nursing units. Further work is needed to account for patterns of missed care.

Use of a Pediatric Cardiovascular Nursing Consortium for Development and Evaluation of Quality Measures: The C4-MNP Experience.

UNLABELLED: The evidence linking nursing care and patient outcomes has been globally demonstrated. Thus, it is time for translation and application of this evidence to robust measurement that uniquely demonstrates the value of nursing care and the characteristics of the nursing workforce that contribute to optimal patient outcomes. OBJECTIVE: The aim of this study was to identify and develop standardized measures representative of pediatric nursing care of the cardiovascular patient for benchmarking within freestanding children's hospitals. METHODS: Using a consensus-based approach, the Consortium of Congenital Cardiac Care- Measurement of Nursing Practice (C4-MNP) members developed quality measures within working groups and then individually critiqued all drafted measures. Final draft measures were then independently reviewed and critiqued by an external nursing quality measurement committee. The final quality measures were also made available to a national parent support group for feedback. OUTCOMES: The development process used by C4-MNP resulted in 10 measures eligible for testing across freestanding children's hospitals. Employing a collaborative consensus-based method plus implementing the criteria of the National Quality Forum and external vetting period provided a strong framework for the development and evaluation of standardized measures. NEXT STEPS: The Consortium will continue with implementation and testing of each measure in 9 of our 28 collaborating centers. This activity will support initial development of benchmarks and evaluation of the association of the measures with patient outcomes.

What impact do hospital and unit-based rules have upon patient and family-centered care in the pediatric intensive care unit?

Patient and family-centered care (PFCC) is the foundation for pediatric healthcare. The existence of hospital rules can, however, impact the extent to which PFCC is delivered. This qualitative, grounded theory study identified the existence of explicit and implicit rules in a pediatric intensive care unit, all of which negatively affected the family's ability to receive care that was attentive to their needs. The rules also placed the registered nurse in the challenging position of serving as rule enforcer and facilitator of PFCC. Further work is needed to explore how to adapt the hospital environment to better meet families' needs.

Implementing a Family-Centered Rounds Intervention Using Novel Mentor-Trios.

BACKGROUND AND OBJECTIVES: Patient and Family Centered I-PASS (PFC I-PASS) emphasizes family and nurse engagement, health literacy, and structured communication on family-centered rounds organized around the I-PASS framework (Illness severity-Patient summary-Action items-Situational awareness-Synthesis by receiver). We assessed adherence, safety, and experience after implementing PFC I-PASS using a novel "Mentor-Trio" implementation approach with multidisciplinary parent-nurse-physician teams coaching sites. METHODS: Hybrid Type II effectiveness-implementation study from 2/29/19-3/13/22 with ≥3 months of baseline and 12 months of postimplementation data collection/site across 21 US community and tertiary pediatric teaching hospitals. We conducted rounds observations and surveyed nurses, physicians, and Arabic/Chinese/English/Spanish-speaking patients/parents. RESULTS: We conducted 4557 rounds observations and received 2285 patient/family, 1240 resident, 819 nurse, and 378 attending surveys. Adherence to all I-PASS components, bedside rounding, written rounds summaries, family and nurse engagement, and plain language improved post-implementation (13.0%-60.8% absolute increase by item), all P < .05. Except for written summary, improvements sustained 12 months post-implementation. Resident-reported harms/1000-resident-days were unchanged overall but decreased in larger hospitals (116.9 to 86.3 to 72.3 pre versus early- versus late-implementation, P = .006), hospitals with greater nurse engagement on rounds (110.6 to 73.3 to 65.3, P < .001), and greater adherence to I-PASS structure (95.3 to 73.6 to 72.3, P < .05). Twelve of 12 measures of staff safety climate improved (eg, "excellent"/"very good" safety grade improved from 80.4% to 86.3% to 88.0%), all P < .05. Patient/family experience and teaching were unchanged. CONCLUSIONS: Hospitals successfully used Mentor-Trios to implement PFC I-PASS. Family/nurse engagement, safety climate, and harms improved in larger hospitals and hospitals with better nurse engagement and intervention adherence. Patient/family experience and teaching were not affected.

Medication affordability discussions with older adults in primary care.

Introduction: Cost is a major barrier to medication accessibility. While a minority of adults experience problems affording their medications, older adults are particularly vulnerable due to increased polypharmacy and fixed incomes.Clinicians can help reduce cost-related non-adherence and improve medication affordability; however, opportunities to improve affordability are often missed due to failure of the patient or clinician to discuss the issue. Objective: Identify the incidence and resolution of cost-related conversations between patients and clinicians during primary care visits. Methods: We conducted this quality improvement project at a primary care office. Student pharmacists observed in-person encounters with patients ≥65 years of age and documented the incidence of cost-related conversations and who initiated the conversation. After the visit, they asked if the patient had affordability issues. Patients and clinicians were blinded to the study purpose and hypothesis. Results: Students observed 79 primary care visits. Cost conversations (medication or non-medication related) occurred in 37% (29/79) of visits. Having concerns about affordability did not impact the likelihood of conversation about non-medication related healthcare costs (RR = 1.21 95% CI 0.35-4.19, p = 0.67) or medication related costs (RR = 0.86 95% CI 0.13-5.65, p = 1.0). Conclusion: Our results indicated that cost conversations did not routinely occur at our site. Failure to discuss costs, especially for patients with underlying cost concerns, may lead to cost related non-adherence and worse outcomes.

Parent Experiences with the Process of Sharing Inpatient Safety Concerns for Children with Medical Complexity: A Qualitative Analysis.

OBJECTIVE: To describe the process of identifying and reporting inpatient safety concerns from the perspective of parents of children with medical complexity (CMC). METHODS: We conducted a secondary analysis of qualitative data from semi-structured interviews with 31 English and Spanish-speaking parents of CMC at two tertiary children's hospitals. Interviews lasted 45-60 minutes and were audio-recorded, translated, and transcribed. Three researchers inductively and deductively coded transcripts using an iteratively refined codebook with validation by a fourth researcher. Thematic analysis was used to develop a conceptual model of the process of inpatient parent safety reporting. RESULTS: We identified four steps illustrating the process of inpatient parent safety concern reporting 1) parent recognizing concern, 2) parent reporting concern, 3) staff/hospital response continuum, and 4) parent feelings of validation/invalidation. Many parents endorsed that they were the first to catch a safety concern and were identified as unique reporters of safety information. Parents typically described reporting their concerns verbally and in real-time to the person they felt could quickly remedy the situation. There was a spectrum of validation. Some parents reported their concerns were not acknowledged and addressed, which led them to feel overlooked, disregarded, or judged. Others reported their concerns were acknowledged and addressed, resulting in parents feeling heard and seen and often leading to changes in clinical care. CONCLUSIONS: Parents described a multi-step process of reporting safety concerns during hospitalization and a spectrum of staff response and validation. These findings can inform family-centered interventions that support safety concern reporting in the inpatient setting.

How and why might interprofessional patient- and family-centered rounds improve outcomes among healthcare teams and hospitalized patients? A conceptual framework informed by scoping and narrative literature review methods.

Poor communication within healthcare contributes to inefficiencies, medical errors, conflict, and other adverse outcomes. A promising model to improve outcomes resulting from poor communication in the inpatient hospital setting is Interprofessional Patient- and Family-Centered rounds (IPFCR). IPFCR brings two or more health professions together with hospitalized patients and families as part of a consistent, team-based routine to share information and collaboratively arrive at a daily plan of care. A growing body of literature focuses on implementation and outcomes of IPFCR to improve healthcare quality and team and patient outcomes. Most studies report positive changes following IPFCR implementation. However, conceptual frameworks and theoretical models are lacking in the IPFCR literature and represent a major gap that needs to be addressed to move this field forward. The purpose of this two-part review is to propose a conceptual framework of how IPFCR works. The goal is to articulate a framework that can be tested in subsequent research studies. Published IPFCR literature and relevant theories and frameworks were examined and synthesized to explore how IPFCR works, to situate IPFCR in relation to existing models and frameworks, and to postulate core components and underlying causal mechanisms. A preliminary, context-specific, conceptual framework is proposed illustrating interrelationships between four core components of IPFCR (interprofessional approach, intentional patient and family engagement, rounding structure, shared development of a daily care plan), improvements in communication, and better outcomes.

In their own words: Safety and quality perspectives from families of hospitalized children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) experience adverse events due to multiorgan impairment, frequent hospitalizations, subspecialty care, and dependence on multiple medications/equipment. Their families are well-versed in care and can help identify safety/quality gaps to inform improvements. Although previous studies have shown families identify important safety/quality gaps in hospitals, studies of inpatient safety/quality experience of CMC and their families are limited. To address this gap and identify otherwise unrecognized, family-prioritized areas for improving safety/quality of CMC, we conducted a secondary qualitative analysis of safety reporting surveys among families of CMC. OBJECTIVE: Explore safety reports from families of hospitalized CMC to identify areas to improve safety/quality. DESIGNS, SETTINGS AND PARTICIPANTS: We analyzed free-text responses from predischarge safety reporting surveys administered to families of CMC at a quaternary children's hospital from April 2018 to November 2020. Using a qualitative descriptive approach, we categorized responses into standard clinical categories. Three team members inductively generated an initial codebook to apply iteratively to responses. Reviewers coded responses collaboratively, resolved discrepancies through consensus, and generated themes. MAIN OUTCOME AND MEASURES: Outcomes: family-reported areas of safety/quality improvement. MEASURES: pre-discharge family surveys. RESULTS: Two hundred and eight/two hundred and thirty-seven (88%) families completed surveys; 83 families offered 138 free-text safety responses about medications, feeds, cares, and other categories. Themes included unmet expectations of hospital care/environment, lack of consistency, provider-patient communication lapses, families' expertise about care, and the value of transparency. CONCLUSION: To improve care of CMC and their families, hospitals can manage expectations about hospital limitations, improve consistency of care/communication, acknowledge family expertise, and recognize that family-observed quality concerns can have safety implications. Soliciting family input can help hospitals improve care in meaningful, otherwise unrecognized ways.