Assessment of families' experience with care integration within an aerodigestive program.

OBJECTIVES: The objective of this study was to assess if enrollment in a pediatric multidisciplinary aerodigestive program significantly impacted families' experiences with care integration. METHODS: A previously validated 48-question Pediatric Integrated Care Survey (PICS) was administered in a cross-sectional manner to both new (new-ADC) and established (est-ADC) patients presenting for an outpatient Aerodigestive Center visit at Boston Children's Hospital. Survey results were grouped into the following five care coordination domains: (1) access to care, (2) care goal creation/planning, (3) family impact, (4) communication with health care providers, and (5) team functioning. Families were asked to rate their care integration experiences in the prior 12 months using yes/no and Likert-based questions. Comparisons were analyzed using logistic regression. Factor analysis was also performed. RESULTS: Ninety patient families were surveyed: 54 (60%) est-ADC patients and 36 (40%) new-ADC patients. Est-ADC patients reported higher levels of experience with team functioning, provider awareness of prior testing, provider communication, and access to alternative methods of communication. Self-identified non-White patients reported lower satisfaction in team functioning and provider understanding of their child's long-term care plan. No significant differences in care integration experiences before and after the onset of the coronavirus pandemic were seen. CONCLUSIONS: Patients enrolled in aerodigestive centers experienced improved care integration, most significantly in provider communication and team functioning. Despite these improvements, self-identified non-White families reported a lower care integration experience.

Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care. METHODS: In April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank's narrative approach. RESULTS: Through analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed 'equilibrium' was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families. CONCLUSIONS: Our research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.

Bridging the gaps in pediatric complex healthcare: the case for home nursing care among children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) comprise < 1% of the pediatric population, but account for nearly one-third of healthcare expenditures. Further, while CMC account for up to 80% of pediatric inpatient hospital costs, only 2% of Medicaid spending is attributed to home healthcare. As a result, the current health system heavily relies on family caregivers to fill existing care gaps. This study aimed to: (1) examine factors associated with hospital admissions among CMC and (2) contextualize the potential for home nursing care to improve outcomes among CMC and their families in South Carolina (SC). METHODS: This mixed-methods study was conducted among CMC, their family caregivers, and physicians in SC. Electronic health records data from a primary care clinic within a large health system (7/1/2022-6/30/2023) was analyzed. Logistic regression examined factors associated with hospitalizations among CMC. In-depth interviews (N = 15) were conducted among physicians and caregivers of CMC statewide. Patient-level quantitative data is triangulated with conceptual findings from interviews. RESULTS: Overall, 39.87% of CMC experienced ≥ 1 hospitalization in the past 12 months. CMC with higher hospitalization risk were dependent on respiratory or neurological/neuromuscular medical devices, not non-Hispanic White, and demonstrated higher healthcare utilization. Interview findings contextualized efforts to reduce hospitalizations, and suggested adaptations related to capacity and willingness to provide complex care for CMC and their families. CONCLUSIONS: Findings may inform multi-level solutions for accessible, high-quality home nursing care among CMC and their families. Providers may learn from caregivers' insight to emphasize family-centered care practices, acknowledging time and financial constraints while optimizing the quality of medical care provided in the home.

Parents' Trigger Tool for Children with Medical Complexity - PAT-CMC: Development of a recognition tool for clinical deterioration at home.

AIM: To develop a trigger tool for parents and lay caregivers of children with medical complexity (CMC) at home and to validate its content. DESIGN: This was a multi-method study, using qualitative data, a Delphi method and a concept mapping approach. METHODS: A three-round electronic Delphi was performed from December 2021 to April 2022 with a panel of 23 expert parents and 30 healthcare providers, supplemented by a preliminary qualitative exploration of children's signs of deterioration and three consensus meetings to develop the PArents' Trigger Tool for Children with Medical Complexity (PAT-CMC). Cognitive interviews with parents were performed to assess the comprehensiveness and comprehensibility of the tool. The COREQ checklist, the COSMIN guidelines and the CREDES guidelines guided the reporting respectively of the qualitative study, the development and content validity of the trigger tool and the Delphi study. RESULTS: The PAT-CMC was developed and its content validated to recognize clinical deterioration at home. The tool consists of 7 main clusters of items: Breathing, Heart, Devices, Behaviour, Neuro-Muscular, Nutrition/Hydration and Other Concerns. A total of 23 triggers of deterioration were included and related to two recommendations for escalation of care, using a traffic light coding system. CONCLUSION: Priority indicators of clinical deterioration of CMC were identified and integrated into a validated trigger tool designed for parents or other lay caregivers at home, to recognize signs of acute severe illness and initiate healthcare interventions. IMPACT: The PAT-CMC was developed to guide families in recognizing signs of deterioration in CMC and has potential for initiating an early escalation of care. This tool may also be useful to support education provided by healthcare providers to families before hospital discharge. PATIENT OR PUBLIC CONTRIBUTION: Parents of CMC were directly involved in the selection of relevant indicators of children's clinical deterioration and the development of the trigger tool. They were not involved in the design, conducting, reporting or dissemination plans of this research.

Time-motion observations to characterize the developmental environment in a paediatric post-acute care hospital.

BACKGROUND: Chronically hospitalized children are at risk for neurodevelopmental delay, compounded by restricted social interactions, movement and environmental stimulation. We measured patients' movements and interactions to characterize developmentally relevant aspects of our inpatient environment and identify opportunities for developmental enrichment. METHODS: As part of a quality improvement initiative to inform neurodevelopmental programming for children with medical complexity at our paediatric post-acute care specialty hospital, we conducted >232 hours of time-motion observations. Trained observers followed 0- to 5-year-old inpatients from 7 am to 7 pm on weekdays, categorizing observations within five domains: Where, With, Position, State and Environment. Observations were collected continuously utilizing REDCap on iPads. A change in any domain initiated a new observation. RESULTS: Patients were median 1 year and 8 months of age (range 2 months to 3 years 9 months) with a median length of hospitalization of 514 days (range 66-1298). In total, 2636 unique observations (or median 134 observations per patient-day [range 95-210]) were collected. Patients left their rooms up to 4 times per day for median 1 h and 34 min (range 41 min to 4 h:30 min). Patients spent 4 h:6 min (2 h:57 min to 6 h:30 min) interacting with someone and 3 h:51 min (57 min to 6 h:36 min) out of bed each day. Patients were simultaneously out of their beds, interacting with someone and awake for 2 h:21 min (51 min to 4 h:19 min) each day. CONCLUSIONS: Despite a care model prioritizing time out of bed and social interaction, time-motion observations indicate patients spent many of their waking hours in bed and alone. Quantifying our inpatients developmental opportunities will inform neurodevelopmental programming initiatives.

Family perspectives on provider conversations about housing needs for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur. METHODS: From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts. RESULTS: Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time. CONCLUSIONS: Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

"100 Things I Wish Someone Would Have Told Me": Everyday Challenges Parents Face While Caring for Their Children With a Tracheostomy.

Equitable access to appropriate care, emergency department services, and in-home support aids are needed to minimize the occurrences of adverse events that have a significant impact on families. However, many families of children with medical complexity (CMC) lack consistent care due to issues of health inequity. We conducted 11 qualitative interviews with primary caregivers who were asked about their experiences of providing care to children who have a tracheostomy and are supported by multiple life-saving machines at home. Guided by ecological systems theory, we identified three themes that contextualize the lived experiences of the participants who expressed needs that arose from poor interactions within the mesosystem. Findings convey participant frustrations that result from insufficient support, ineffective training, and inadequate healthcare coverage. Although each theme is organized systematically to emphasize specific concerns within the mesosystem, together these themes emphasize the inextricable relationship between daily needs with systemic barriers to care. We provide a discussion of these needs with a broader context that also impacts the perceived quality of care among families managing the needs of their children who are supported by life-saving technology. By addressing existing challenges and identifying opportunities for improvement within the healthcare system, we seek to contribute to the collective effort of advocating for ethical systemic change on behalf of CMC and their families.

Caring for children with medical complexity at home: An integrative review.

PROBLEM: Despite reporting significant systemic barriers to providing care, burden among parental caregivers of children with medical complexity (CMC) is often attributed to stressors related to disease management. The relationship between parental caregiver burden and systemic barriers within the healthcare bureaucracy, as defined by Ray's Theory of Bureaucratic Caring (BCT), has not been explored. The purpose of this integrative review was to examine which elements of the bureaucratic healthcare system are contributing to burden among parental caregivers of CMC living at home. ELIGIBILITY CRITERIA: Refereed research articles related to the experiences of parental caregivers of CMC living in the United States published after 2014. SAMPLE: 1967 articles were obtained on initial literature search. Using the PRISMA algorithm, ten articles published between 2018 and 2022 were ultimately selected for appraisal. RESULTS: Parental caregiver burden was consistently attributed to barriers and gaps among social-cultural, physical, political, legal, economic, technological, and educational elements of the bureaucratic healthcare system. CONCLUSIONS: Weaknesses across the bureaucratic elements of the healthcare system prevent CMC from consistently receiving necessary care which in turn, contribute to feelings of burden among their parental caregivers. Efforts to alleviate burden experienced by parental caregivers should focus on addressing gaps within the healthcare bureaucracy. IMPLICATIONS: Nurses are well-positioned to address these gaps through clinical work, advocacy, and research. Future research should further examine the appropriateness of using BCT to better understand the implications of systems-level weaknesses on parental caregiver burden. Parental caregivers of CMC should be closely involved in this process.

Current state of home health in children with medical complexity.

BACKGROUND: Home health services are a right for children in the US, but higher survival rates of extremely preterm infants have led to an increase in children with medical complexity (CMC) and therefore an increased demand for home health services. Unfortunately, an adequately trained and compensated workforce to support medially complex children at home does not exist. METHODS: After identifying the existing research, common themes were identified. This article was written to give an overview of these themes and highlight specific supporting data. RESULTS: A lack of resources in the home health arena and the financial barriers that accompany them, as well as the clear impact this issue has on the health and well-being of families and caregivers, were frequently present in the literature. CONCLUSIONS: Reasonable next steps for research and advocacy include a focus on recruitment and retention of home health nurses, as well as training specific to the level of skill required to adequately care for CMC. Further research is needed, as in our search we found several unexplored, unassessed avenues that could help health care professionals understand the problem more fully. These steps are necessary if we want CMC to live the healthiest life available to them.

Feasibility of a mindfulness app in parents of a child with medical complexity: A pilot study.

The prevalence of pediatric chronic conditions is increasing rapidly. Parents of a child with medical complexity (CMC) experience stress, depression which may also impact family functioning. Research has shown that mindfulness applications (apps) have significantly improved stress and depression in other populations, but have not been studied in this population. The purpose of this pilot study was to assess the feasibility and efficacy of a mindfulness app in parents of a CMC. Parents were recruited to participate from a non-profit organization and asked to use a mindfulness app for 4 weeks and fill out questionnaires before and after the intervention. Eight mothers participated in the study for the entire study period. Data analysis showed that using a mindfulness app in this population is feasible and reduces depressive symptoms and improves family functioning.

A national survey of current practice on patients with long term and additional needs in paediatric intensive care units.

BACKGROUND: Patients with long term and additional needs (LEAP) in paediatric intensive care units (PICUs) are a growing and heterogenous cohort that provide unique challenges to clinicians. Currently no standard approach to define and manage this cohort exists. AIM: To analyse bed occupancy, examine current practice, and explore ideas to improve PICU care of patients with long term and additional needs. STUDY DESIGN: Patients with LEAP were defined as meeting two or more of the following criteria: length of stay >14 days; life limiting condition; ≥2 failed extubations; hospital stay >1 month prior to PICU admission; likely to require long-term ventilation. An electronic survey was then sent to all UK PICUs, via the UK Paediatric Critical Care Society, to collect quantitative and qualitative data relating to bed occupancy, length of stay, multidisciplinary and family involvement, and areas of possible improvement. Data collection were occurred between 8 February 2022 and 14 March 2022. Quantitative data were analysed using Microsoft Excel 365 and SPSS Statistics version 28.0. Raw data and descriptive statistics were reported, including percentages and median with interquartile range for non-parametric data. Qualitative raw data were examined using thematic analysis. Analysis was undertaken independently by two authors and results assessed for concordance. RESULTS: 70.1% (17/24) PICUs responded. 25% (67/259) of PICU beds were occupied by patients with long term and additional needs. 29% (5/17) of responding units have tailored management plans to this cohort of patient. A further 11% (2/17) have guidelines for children with generic chronic illness. 12% (2/16) of responding units had a designated area and 81% (13/16) of responding units had designated professionals. The majority (68% and 62%) of responding units engaged families and community professionals in multidisciplinary meetings. When asked how the care of long term and additional needs patients might be improved five themes were identified: consistent, streamlined care pathways; designated transitional care units; designated funding and hospital-to-home commissioning; development of roles to facilitate collaboration between hospital and community teams; proactive discharge planning and parallel planning. CONCLUSIONS: This survey provides a snapshot of UK practice for a cohort of patients that occupies a considerable proportion (29%) of PICU beds. While only a minority of responding PICUs offer specifically tailored management plans, the majority of units have designated professionals. RELEVANCE TO CLINICAL PRACTICE: Opportunities exist to improve PICU care in LEAP patients in areas such as: streamlined care pathways, designated clinical areas, designated funding, and development of defined collaborative roles. Next steps may involve working group convention to develop a consensus definition and share good practice examples.

[Collaborative practices for children with medical complexities and their families: A scoping review].

Objective　This scoping review aimed to provide an overview of collaborative practices for children with medical complexities and their families by life stage.Methods　This scoping review was conducted based on the JBI scoping review manual using the PubMed, CINAHL, and Medical Journal databases. Search terms included "collaboration," "intersectoral collaboration," "children with medical complexity," and "children with special healthcare needs," whereas control words included "children with special healthcare needs," "children with medical care," "children with severe mental and physical disabilities," and "children with severe mental and physical disabilities." The inclusion criteria were articles in Japan that reported on practices for children (aged 0-18 years) with medical care needs and collaboration among other multiple professions, research articles, excluding review and protocol articles, and English or Japanese articles. For the analysis, collaboration-related practices were extracted from selected papers, categorized based on similarities in content, and further summarized according to the life stage. Three researchers discussed the selection of papers, data extraction, and analysis until a consensus was reached.Results　The analysis included 30 papers (27 Japanese and three English papers). Regarding publication year, 14 papers were published within the last 3 years. Additionally, 19 case and 26 practice reports and 11 studies (quantitative research; one, qualitative research; 10) were published by professionals. Regarding collaborative practices, 160 cases were extracted and classified into nine. In "discharge support," practices in all subcategories were reported for preschoolers, whereas only two of the five subcategories were reported for school-aged children. Contrastingly, in the "maintenance phase in preschool, daycare, and school," preschoolers reported practices in two of the seven subcategories. Additionally, various professionals from the fields of medicine, welfare, education, and administration were involved in the collaboration.Conclusion　There were differences in the reporting of collaborative practices at each life stage. Although numerous professionals were involved, reports of collaborative practices among them were unevenly distributed. Eventually, it will be necessary to investigate the nature of collaborative practices among various professionals, focusing on children and their families.

Cliff or bridge: breaking up with the paediatric healthcare system.

Transition from paediatric to adult healthcare is a normal part of the care trajectory, yet the process often leaves much to be desired. In this commentary, I share my family's journey of this care transition, particularly the handover aspect, by providing examples of different ways that relationships were ended by paediatric healthcare professionals. The ending of these relationships often felt like 'breaking up'. I also share an example of a supported handover, which bridged the transition from paediatric to adult care. To improve transitions, we need genuine acknowledgement of the paediatric medical trauma stress (PMTS) experienced by families such as mine following years of interactions in the healthcare system. Along with following transition checklists, patients and families need authentic and meaningful closure to longitudinal relationships and trauma-informed care practices as we move forward into the adult care system.

Out-of-pocket expenses reported by families of children with medical complexity.

Objectives: Due to their medical and technology dependence, families of children with medical complexity (CMC) have significant costs associated with care. Financial impact on families in general have been described, but detailed exploration of expenses in specific categories has not been systematically explored. Our objective was to describe out-of-pocket (OOP) expenses incurred by caregivers of CMC and to determine factors associated with increased expenditures. Methods: This is a secondary observational analysis of data primary caregiver-reported OOP expenses as part of a randomized control trial conducted in Ontario, Canada. Caregivers completed questionnaires reporting OOP costs. Descriptive statistics were utilized to report OOP expenses and a linear regression model was conducted. Results: 107 primary caregivers of CMC were included. The median (IQR) age of participants was 34.5 years (30.5 to 40.5) and 83.2% identified as the mother. The majority were married or common-law (86.9%) and 50.5% were employed. The participant's children [median (IQR) age 4.5 (2.2 to 9.7); 57.9% male] most commonly had a neurological/neuromuscular primary diagnosis (46.1%) and 88% utilized medical technology. Total OOP expenses were $8,639 CDN annually (IQR = $4,661 to $31,326) with substantial expenses related to childcare/homemaking, travel to appointments, hospitalizations, and device costs. No factors associated with greater likelihood of OOP expenses were identified. A P-value of <0.05 was considered significant. Conclusion: Caregivers of CMC incur significant OOP expenses related to the care of their children resulting in financial burden. Future exploration of the financial impact on caregiver productivity, employment, and identification of resources to mitigate OOP expenses will be important for this patient population.

Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.

OBJECTIVE: To compare the characteristics and healthcare use of children with medical complexity who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional nonfamily member (nonfamily CNA). STUDY DESIGN: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017 and 2019 by a home healthcare agency. We compared patient characteristics between the family CNA and nonfamily CNA groups. A multivariable Poisson regression model was used to compare hospitalization rates (days in the hospital per year), adjusting for patient age patient sex, nursing care, and complex chronic condition. RESULTS: Of 861 patients, 79% (n = 680) received family CNA care and 21% (n = 181) received nonfamily CNA care. Patient demographics and hospitalization did not differ between the groups, although patients who had family CNAs were less likely to receive additional nursing-level care (42% vs 60%, P < .01). Family and nonfamily CNA caregivers had similar characteristics, except that family CNA caregivers had substantially better 3-year retention (82% vs 9%, P < .01) despite lower average hourly pay ($14.60 vs $17.60 per hour, P < .01). Hospitalizations were rare (<10% of patients). In the adjusted model, patients who received family CNA care experienced 1 more hospitalized day per year, compared with patients who received nonfamily CNA care (P < .001). CONCLUSIONS: Paid family caregivers provided CAN-level care to children with medical complexity with a greater employee retention compared with nonfamily CNA caregivers, with marginally different hospitalization rates using a family-centered approach. This model may help address workforce shortages while also providing income to family caregivers.

Hospital-to-home transitions for children with medical complexity: part 2-a core outcome set.

Appropriate outcome measures as part of high-quality intervention trials are critical to advancing hospital-to-home transitions for Children with Medical Complexity (CMC). Our aim was to conduct a Delphi study and focus groups to identify a Core Outcome Set (COS) that healthcare professionals and parents consider essential outcomes for future intervention research. The development process consisted of two phases: (1) a three-round Delphi study in which different professionals rated outcomes, previously described in a systematic review, for inclusion in the COS and (2) focus groups with parents of CMC to validate the results of the Delphi study. Forty-five professionals participated in the Delphi study. The response rates were 55%, 57%, and 58% in the three rounds, respectively. In addition to the 24 outcomes from the literature, the participants suggested 12 additional outcomes. The Delphi rounds resulted in the following core outcomes: (1) disease management, (2) child's quality of life, and (3) impact on the life of families. Two focus groups with seven parents highlighted another core outcome: (4) self-efficacy of parents.   Conclusion: An evidence-informed COS has been developed based on consensus among healthcare professionals and parents. These core outcomes could facilitate standard reporting in future CMC hospital to home transition research. This study facilitated the next step of COS development: selecting the appropriate measurement instruments for every outcome. What is Known: • Hospital-to-home transition for Children with Medical Complexity is a challenging process. • The use of core outcome sets could improve the quality and consistency of research reporting, ultimately leading to better outcomes for children and families. What is New: • The Core Outcome Set for transitional care for Children with Medical Complexity includes four outcomes: disease management, children's quality of life, impact on the life of families, and self-efficacy of parents.

Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes.

Outcome selection to evaluate interventions to support a successful transition from hospital to home of children with medical complexity (CMC) may be difficult due to the variety in available outcomes. To support researchers in outcome selection, this systematic review aimed to summarize and categorize outcomes currently reported in publications evaluating the effectiveness of hospital-to-home transitional care interventions for CMC. We searched the following databases: Medline, Embase, Cochrane library, CINAHL, PsychInfo, and Web of Science for studies published between 1 January 2010 and 15 March 2023. Two reviewers independently screened the articles and extracted the data with a focus on the outcomes. Our research group extensively discussed the outcome list to identify those with similar definitions, wording or meaning. Consensus meetings were organized to discuss disagreements, and to summarize and categorize the data. We identified 50 studies that reported in total 172 outcomes. Consensus was reached on 25 unique outcomes that were assigned to six outcome domains: mortality and survival, physical health, life impact (the impact on functioning, quality of life, delivery of care and personal circumstances), resource use, adverse events, and others. Most frequently studied outcomes reflected life impact and resource use. Apart from the heterogeneity in outcomes, we also found heterogeneity in designs, data sources, and measurement tools used to evaluate the outcomes.     Conclusion: This systematic review provides a categorized overview of outcomes that may be used to evaluate interventions to improve hospital-to-home transition for CMC. The results can be used in the development of a core outcome set transitional care for CMC.

Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study.

BACKGROUND AND OBJECTIVES: Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic. METHODS: We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. RESULTS: Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic's impact on family caregiver well-being (mental toll, physical toll). CONCLUSIONS: Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

An assessment of information needs and workflows for emergency service providers and caregivers of children with medical complexity.

BACKGROUND: The goal of Project Austin, an initiative to improve emergency care for rural children who are medically complex (CMC), is to provide an Emergency Information Form (EIF) to their parents/caregivers, to local Emergency Medical Services, and Emergency Departments. EIFs are standard forms recommended by the American Academy of Pediatrics that provide pre-planned rapid response instructions, including medical conditions, medications, and care recommendations, for emergency providers. Our objective is to describe the workflows and perceived utility of the provided emergency information forms (EIFs) in the acute medical management of CMC. METHODS: We sampled from two key stakeholder groups in the acute management of CMC: four focus groups with emergency medical providers from rural and urban settings and eight key informant interviews with parents/caregivers enrolled in an emergency medical management program for CMC. Transcripts were thematically analyzed in NVivo© by two coders using a content analysis approach. The thematic codes were combined into a codebook and revised the themes present through combining relevant themes and developing of sub-themes until they reached consensus. RESULTS: All parents/caregivers interviewed were enrolled in Project Austin and had an EIF. Emergency medical providers and parents/caregivers supported the usage of EIFs for CMC. Parents/caregivers also felt EIFs made emergency medical providers more prepared for their child. Providers identified that EIFs helped provide individualized care, however they were not confident the data was current and so felt unsure they could rely on the recommendations on the EIF. CONCLUSION: EIFs are an easy way to engage parents, caregivers, and emergency medical providers about the specifics of a care for CMC during an emergency. Timely updates and electronic access to EIFs could improve their value for medical providers.

A coordinated approach for managing polypharmacy among children with medical complexity: rationale and design of the Pediatric Medication Therapy Management (pMTM) randomized controlled trial.

BACKGROUND: Children with medical complexity (CMC) often rely upon the use of multiple medications to sustain quality of life and control substantial symptom burden. Pediatric polypharmacy (≥ 5 concurrent medications) is prevalent and increases the risk of medication-related problems (MRPs). Although MRPs are associated with pediatric morbidity and healthcare utilization, polypharmacy is infrequently assessed during routine clinical care for CMC. The aim of this randomized controlled trial is to determine if a structured pharmacist-led Pediatric Medication Therapy Management (pMTM) intervention reduces MRP counts, as well as the secondary outcomes of symptom burden and acute healthcare utilization. METHODS: This is a hybrid type 2 randomized controlled trial assessing the effectiveness of pMTM compared to usual care in a large, patient-centered medical home for CMC. Eligible patients include all children ages 2-18 years old, with ≥ 1 complex chronic condition, and with ≥ 5 active medications, as well as their English-speaking primary caregivers. Child participants and their primary parental caregivers will be randomized to pMTM or usual care before a non-acute primary care visit and followed for 90 days. Using generalized linear models, the overall effectiveness of the intervention will be evaluated using total MRP counts at 90 days following pMTM intervention or usual care visit. Following attrition, a total of 296 CMC will contribute measurements at 90 days, which provides > 90% power to detect a clinically significant 1.0 reduction in total MRPs with an alpha level of 0.05. Secondary outcomes include Parent-Reported Outcomes of Symptoms (PRO-Sx) symptom burden scores and acute healthcare visit counts. Program replication costs will be assessed using time-driven activity-based scoring. DISCUSSION: This pMTM trial aims to test hypotheses that a patient-centered medication optimization intervention delivered by pediatric pharmacists will result in lower MRP counts, stable or improved symptom burdens, and fewer cumulative acute healthcare encounters at 90 days following pMTM compared to usual care. The results of this trial will be used to quantify medication-related outcomes, safety, and value for a high-utilization group of CMC, and outcomes may elucidate the role of integrated pharmacist services as a key component of outpatient complex care programs for this priority pediatric population. TRIAL REGISTRATION: This trial was prospectively registered at clinicaltrials.gov (NCT05761847) on Feb 25, 2023.