Heart rate patterns predicting cerebral palsy in preterm infants.

BACKGROUND: Heart rate (HR) patterns can inform on central nervous system dysfunction. We previously used highly comparative time series analysis (HCTSA) to identify HR patterns predicting mortality among patients in the neonatal intensive care unit (NICU) and now use this methodology to discover patterns predicting cerebral palsy (CP) in preterm infants. METHOD: We studied NICU patients <37 weeks' gestation with archived every-2-s HR data throughout the NICU stay and with or without later diagnosis of CP (n = 57 CP and 1119 no CP). We performed HCTSA of >2000 HR metrics and identified 24 metrics analyzed on HR data from two 7-day periods: week 1 and 37 weeks' postmenstrual age (week 1, week 37). Multivariate modeling was used to optimize a parsimonious prediction model. RESULTS: Week 1 HR metrics with maximum AUC for CP prediction reflected low variability, including "RobustSD" (AUC 0.826; 0.772-0.870). At week 37, high values of a novel HR metric, "LongSD3," the cubed value of the difference in HR values 100 s apart, were added to week 1 HR metrics for CP prediction. A combined birthweight + early and late HR model had AUC 0.853 (0.805-0.892). CONCLUSIONS: Using HCTSA, we discovered novel HR metrics and created a parsimonious model for CP prediction in preterm NICU patients. IMPACT: We discovered new heart rate characteristics predicting CP in preterm infants. Using every-2-s HR from two 7-day periods and highly comparative time series analysis, we found a measure of low variability HR week 1 after birth and a pattern of recurrent acceleration in HR at term corrected age that predicted CP. Combined clinical and early and late HR features had AUC 0.853 for CP prediction.

Heart Rate and Pulse Oximetry Dynamics in the First Week after Birth in Neonatal Intensive Care Unit Patients and the Risk of Cerebral Palsy.

OBJECTIVE: Infants in the neonatal intensive care unit (NICU) are at high risk of adverse neuromotor outcomes. Atypical patterns of heart rate (HR) and pulse oximetry (SpO2) may serve as biomarkers for risk assessment for cerebral palsy (CP). The purpose of this study was to determine whether atypical HR and SpO2 patterns in NICU patients add to clinical variables predicting later diagnosis of CP. STUDY DESIGN: This was a retrospective study including patients admitted to a level IV NICU from 2009 to 2017 with archived cardiorespiratory data in the first 7 days from birth to follow-up at >2 years of age. The mean, standard deviation (SD), skewness, kurtosis and cross-correlation of HR and SpO2 were calculated. Three predictive models were developed using least absolute shrinkage and selection operator regression (clinical, cardiorespiratory and combined model), and their performance for predicting CP was evaluated. RESULTS: Seventy infants with CP and 1,733 controls met inclusion criteria for a 3.8% population prevalence. Area under the receiver operating characteristic curve for CP prediction was 0.7524 for the clinical model, 0.7419 for the vital sign model, and 0.7725 for the combined model. Variables included in the combined model were lower maternal age, outborn delivery, lower 5-minute Apgar's score, lower SD of HR, and more negative skewness of HR. CONCLUSION: In this study including NICU patients of all gestational ages, HR but not SpO2 patterns added to clinical variables to predict the eventual diagnosis of CP. Identification of risk of CP within the first few days of life could result in improved therapy resource allocation and risk stratification in clinical trials of new therapeutics. KEY POINTS: · SD and skewness of HR have some added predictive value of later diagnosis of CP.. · SpO2 measures do not add to CP prediction.. · Combining clinical variables with early HR measures may improve the prediction of later CP..

High Prevalence of Abnormal General Movements in Hospitalized Very Low Birth Weight Infants.

OBJECTIVE: Abnormal general movements (GMs) are predictive of later risk of motor impairments in preterm infants. The goals of this study are to (1) describe the implementation of the GM assessment (GMA) in a neonatal intensive care unit (NICU) and (2) investigate the prevalence and evolution of abnormal GMs in very low birth weight (VLBW) infants. STUDY DESIGN: Observational study of GMs in VLBW infants (gestational age [GA] <32 weeks and/or birth weight [BW] <1,500 g) following GMA implementation in a level-IV NICU. All VLBW infants admitted between November 2017 and April 2019 were eligible for the GMA. Infants were excluded if they required high-frequency ventilation or if they could not be unbundled for video acquisition. GMAs were scored weekly by at least 2 GMA-certified providers. RESULTS: The GMA was performed in 121 VLBW infants with a mean (standard deviation [SD]) GA of 28.3 (2.6) and BW of 1,113 (400 g). Only 28% of infants had normal GMs on initial assessment (32.9 ± 2.7 weeks' GA), while 61 and 11% had poor repertoire and cramped-synchronized GMs, respectively. At NICU discharge (37.6 ± 3.4 weeks corrected GA), 45 and 21% of infants were classified as having poor repertoire and cramped-synchronized GMs, respectively. Most infants with cramped-synchronized GMs on initial assessment had persistent abnormal GMs at discharge. In contrast, only one infant with normal GMs on first assessment developed cramped-synchronized GMs. CONCLUSION: Abnormal GMs are common in VLBW infants, including a high prevalence of the more concerning cramped-synchronized movement pattern. The GMA can be successfully performed in VLBW infants. The GMA may be helpful in identifying infants at increased risk of later motor impairments, as well as assisting clinicians, in the stratification of infants who may benefit from additional brain imaging and/or an intensive hospital-based interventions. KEY POINTS: · Abnormal GMs are common in VLBW infants.. · Poor repertoire in the most prevalent pattern observed.. · Infants at risk for abnormal motor outcomes can be identified in the NICU..

A Maternal-Administered Multimodal Neonatal Bundle in Hospitalized Very Preterm Infants: A Pilot Study.

BACKGROUND: Premature infants are at an increased risk for developing cerebral palsy (CP). Evidence-based strategies designed to promote healthy brain development and facilitate adaptation after brain injury in infants still admitted to the neonatal intensive care unit (NICU) represent a novel approach that may lead to improved long-term outcomes. PURPOSE: To investigate the feasibility of a maternal-administered early intervention bundle in very preterm infants prior to NICU discharge. METHODS: A pilot trial evaluating a maternal-administered NICU-based bundle of interventions in preterm infants (≤32 weeks' gestational age and/or ≤1500 g birth weight). The impact of the bundle on short-term developmental outcomes of infants, as well as maternal stress, anxiety, and depression, is evaluated. RESULTS: The intervention bundle was implemented in 11 mother-infant dyads (including 1 set of twins) for a median of 8 weeks and was overall well received. Vocal soothing, scent exchange, and comforting touch were feasible, performed at or above the predetermined goal of 71% of the time (5/7 days), while kangaroo care and infant massage were not. Maternal stress, anxiety, and depression were decreased during the study time. IMPLICATIONS TO PRACTICE: A neonatal multimodal intervention bundle provided by mothers is feasible. IMPLICATIONS TO RESEARCH: Additional randomized controlled studies are needed to determine whether this type of bundled interventions can (1) improve the neurodevelopmental outcomes of participating infants and (2) improve long-term parental outcomes, including decreased burden of anxiety and depression, as well as improved attachment and optimal patterns of social interaction.

Assessment of Pain and Sleep Symptoms in Children at High Risk for Cerebral Palsy in a Pediatric Neurodevelopmental Clinic: Implications for Future Quality Improvement Interventions.

Children with cerebral palsy (CP) often experience distressing symptoms. It is estimated that 3 in 4 have chronic pain and 1 in 5 have a sleep disorder, with the highest frequency and severity occurring in children with the greatest impairment. Sleep impairment and pain can adversely impact activities, participation and quality of life; however, prevalence of these symptoms in children at risk for CP < 2 years of age remain unknown. The objective of this project was to develop a baseline understanding of the presence of sleep and pain symptoms among children <2 years at high risk for CP to establish a baseline estimate for future quality improvement initiatives. A retrospective chart review was performed on a convenience sample of 50 children <2 years of age that were determined to be high risk for CP. This was determined through a standardized Hammersmith Infant Neurological Evaluation (HINE) global score of less than 56 performed as part of routine care. Descriptive statistics were used to explore the sample. A nonparametric test was used to evaluate the differences between groups. Pain and sleep problems were frequently reported in our sample (38% sleep problems and 32% pain). There were also significant differences between reported symptoms and the HINE. Reported symptoms were associated with lower HINE scores. Sleep and pain are frequent symptoms in children at risk for cerebral palsy. Early identification of these symptoms can lead to clinic-level intervention which may include pharmacological and non-pharmacological management strategies that improve outcomes for children at high risk for CP.

Gabapentin for pain, movement disorders, and irritability in neonates and infants.

We aimed to report our institution's experience with gabapentin therapy to manage agitation and pain in the neonatal intensive care unit (NICU) setting. This was a retrospective, single-center study of NICU patients admitted between January 2015 and December 2017, who received gabapentin. Data on neonatal agitation, pain, Neonatal Pain, Agitation and Sedation Scale (N-PASS) scores, neurosedative medications, and adverse events were collected. Gabapentin was initiated in 16 patients at a corrected gestational age of 44 weeks (range 36.2-75wks) for agitation (n=9), pain (n=6), and movement disorders (n=1). A neurological diagnosis was present in 13 patients. Neonatal agitation, pain, and N-PASS scores and the need for other neurosedatives were significantly decreased 14 days after treatment initiation. Gabapentin is well tolerated in neonates and infants; it is associated with decreased pain scores and decreased need for multiple neurosedative medications 2 weeks after initiation. WHAT THIS PAPER ADDS: Gabapentin is well tolerated in neonates and infants. Gabapentin decreases pain scores and the need for other neurosedative medications in neonates and infants.

Exploring Perceptions of Shift Length: A State-Based Survey of Registered Nurses.

OBJECTIVE: The aim of this study was to explore clinical nurses' perspectives of shift length. BACKGROUND: Discussions about scheduling practices, work rotations, and shift length are pervasive among nurses and nursing leadership. However, the science surrounding nurse perceptions of longer shifts is limited. METHODS: A survey instrument was developed and distributed to nurses engaged in the state's professional association. RESULTS: Data from 190 clinical nurses were included. When working a 40-hour work week, 76.3% reported a preference for 10-hour shifts, whereas 83.5% preferred a 12-hour shift during a 36-hour week. Those who chose longer shifts perceived improved work life balance and better patient care. Those identifying 8-hour shifts also pointed to work life balance as benefit. CONCLUSIONS: The results capture the voice of the nurse regarding shift length. The preference for the 10-hour shift within the 40-hour work week is novel. These results may assist with efforts to initiate change, improve the work environment and enhance home life.

Picking up the Pace: Decreasing Platelet Administration Safely and Effectively.

BACKGROUND: Hematology-oncology patients often require blood and blood product transfusions, including platelets (PLTs), to maintain stability. Administering PLTs in a shorter timeframe may prove beneficial by possibly raising platelet counts to a higher level faster, and allowing patients to be disconnected from IV pumps sooner. OBJECTIVE: To evaluate the optimal (safe and effective) transfusion time by comparing standard administration of PLTs over 2-4 h to the investigational administration of PLTs over 30-45 min in the pediatric hematology-oncology inpatient population. METHODOLOGY: A pilot trial was conducted using a convenience sample of hematology-oncology children. Children prescribed a PLT transfusion while admitted to an inpatient unit were eligible. If randomized to the intervention group, the nurse administered the PLTs over 30-45 min. If randomized to the standard group, the nurse administered the PLTs over 2-4 h. Post transfusion PLTcount was drawn 30 min after completion. The child was monitored closely for adverse reactions. RESULTS: Eleven participants were enrolled in the study and 20 PLT infusions administered. No adverse events were noted. There was not a significant difference in changes in PLT counts by group (post minus pre), p = 0.082. There was not a significant difference in post infusion PLT counts, p = 0.727. There was a significant difference in the rate of change in PLT counts by groups, p = 0.003. NURSING IMPLICATIONS: This pilot study provides preliminary evidence that PLTs may be safely and effectively administered over 30-45 min in pediatric hematology-oncology patients. With quicker PLT administration, patients can be disconnected from IV pumps sooner.

Paroxysmal Sympathetic Hyperactivity in Children: An Exploratory Evaluation of Nursing Interventions.

BACKGROUND: Paroxysmal sympathetic hyperactivity (PSH) produces symptoms of autonomic instability and muscle over-activity; however, the majority of nursing interventions used in clinical practice are anecdotal and not evidenced based. OBJECTIVE: The primary objective was to report nursing documentation of PSH events, and to describe the clinical nursing interventions and care provided to children who have suffered a severe brain injury and are exhibiting PSH. The secondary objective was to demonstrate how the Symptom Management Theory (SMT) can serve as a framework for research related to brain injury and PSH. METHODOLOGY: The study consisted of a retrospective chart review of nursing progress notes using direct content analysis. The nested sample of ten randomly selected charts was chosen from a larger quantitative study of 83 children who had suffered severe brain injuries with and without PSH. Textual analysis of verbatim nursing progress notes was used to describe nursing interventions that were used and documented for this patient population. RESULTS: The priority nursing interventions to manage these symptoms included medication administration, facilitation of family presence, and strategies to target auditory, tactile, and visual stimuli. The sample received different individual interventions for PSH. Additionally, individual subjects demonstrated different patterns of interventions. IMPLICATIONS: While tactile interventions were documented most frequently, there was not a uniform approach to interventions. The SMT can be useful to provide a framework that organizes and tests clinical care and management of PSH strategies.

Does Site Matter? Comparing Accuracy and Patient Comfort of Blood Glucose Samples Taken From the Finger and Palm of the Perioperative Patient.

PURPOSE: This study compared two blood glucose (BG) point of care sampling methods to determine which is least painful yet accurate. DESIGN: The two-period, two-treatment crossover trial compared the traditional fingertip sampling method to a form of alternative site testing (AST), palm of the hand. METHODS: Subjects received both methods of BG sampling to compare comfort and accuracy. They were randomly assigned to determine which method was used first. Pain rating (0 to 10) and glucose results for both methods were documented. FINDING: Results indicated that pain rating was significantly lower with AST (1.65) than with the standard site (2.83) (P < .001). There was no significant difference in mean glucose measurements between standard care (150 mg/dL) and AST (149 mg/dL). The numbers were closely correlated (r = 0.9815). CONCLUSIONS: Findings support AST via the palm of the hand as an accurate and less painful method of obtaining BG results on diabetic patients.

The Use of Short-Term Acupressure to Prevent Long-Term PONV: Was This a Case of Too Little, Too Late?

PURPOSE: Postoperative nausea and vomiting (PONV) is a common surgical complication that contributes to poor patient outcomes. The purpose of this study was to determine if acupressure to the P6 pressure point during the immediate postoperative period decreased PONV for the first 24 postoperative hours. DESIGN: This was a double-blind, randomized study. METHODS: Experimental group participants wore a wristband, which administered acupressure to the P6 pressure point of one wrist. Control group wristbands were malpositioned. Bands remained on until patients were discharged from the postanesthesia care unit or up to a maximum of 2 hours. Data on nausea, vomiting, and antiemetic use were tracked for the first 24 postoperative hours. FINDING: There were no statistically significant between-group differences in PONV or antiemetic use. CONCLUSIONS: Short-term postoperative acupressure to one wrist did not lead to a 24-hour decrease in nausea, vomiting, or antiemetic use.

Paroxysmal sympathetic hyperactivity: Autonomic instability and muscle over-activity following severe brain injury.

BACKGROUND: Children who suffer from moderate-to-severe brain injury can develop a complicating phenomenon known as paroxysmal sympathetic hyperactivity (PSH), characterized by autonomic instability and identified clinically as a cluster of symptoms that can include recurrent fever without a source of infection, hypertension, tachycardia, tachypnea, agitation, diaphoresis and dystonia. Studies with adults have demonstrated that this cluster of symptoms is associated with poorer clinical outcomes (prolonged hospitalizations, poorer cognitive and motor function). However, there have been limited studies in children with PSH. OBJECTIVE: To present a literature review regarding PSH following severe brain injury and highlight research needs in children with PSH. METHODOLOGY: Electronic databases (CINAHL, Ovid Medline, Web of Science and Google Scholar) were searched. RESULTS: Thirty-one research articles met the criteria for inclusion. Several themes emerged regarding the phenomenon of interest during the review: nomenclature, symptoms, management and differences between children and adults. IMPLICATIONS: The majority of the research regarding PSH following severe brain injury has been descriptive in nature. Few studies, however, have explored PSH in children with brain injury; therefore, little is known about whether the outcomes of children with PSH are different and, if so, in what ways.

Parent/caregiver health literacy among children with special health care needs: a systematic review of the literature.

BACKGROUND: Children with special health care needs (CSHCN) are children with medical or behavioral diagnoses that require services beyond those generally needed by pediatric populations. They account for a significant portion of pediatric health care expenditures and often have complicated treatment regiments. Health literacy has recently been recognized as a key indicator of quality chronic disease self-management and parental/caregiver health literacy of CSHCN is an understudied area. The purpose of this systematic review was to assess the available evidence of studies investigating parent/caregiver health literacy of CSHCN. METHODS: Databases were searched to retrieve relevant articles for inclusion (dating from 1998 to 2014). Only studies that assessed the relationship between parent/caregiver health literacy on outcomes pertinent to CSHCN were included. Because of the limited number of studies, there were no restrictions placed on type of outcome. RESULTS: Thirteen studies were included in the final review with a range of health literacy assessments and outcome ascertainment. The majority of studies; (1) focused on the relationship between parental/caregiver health literacy and asthma outcomes, (2) were cross-sectional study designs, and (3) included samples recruited from pediatric clinics in academic medical settings. CONCLUSIONS: There were several gaps in the literature where future research is needed including; (1) direct assessment of child/adolescent health literacy, (2) inclusion of children with co-morbid conditions, (3) further assessment of the relationship between health literacy and health care utilization and cost, and (4) assessment of parental/caregiver health literacy in the inpatient care setting.

Machine learning approaches to evaluate infants' general movements in the writhing stage-a pilot study.

The goals of this study are to describe machine learning techniques employing computer-vision movement algorithms to automatically evaluate infants' general movements (GMs) in the writhing stage. This is a retrospective study of infants admitted 07/2019 to 11/2021 to a level IV neonatal intensive care unit (NICU). Infant GMs, classified by certified expert, were analyzed in two-steps (1) determination of anatomic key point location using a NICU-trained pose estimation model [accuracy determined using object key point similarity (OKS)]; (2) development of a preliminary movement model to distinguish normal versus cramped-synchronized (CS) GMs using cosine similarity and autocorrelation of major joints. GMs were analyzed using 85 videos from 74 infants; gestational age at birth 28.9 ± 4.1 weeks and postmenstrual age (PMA) at time of video 35.9 ± 4.6 weeks The NICU-trained pose estimation model was more accurate (0.91 ± 0.008 OKS) than a generic model (0.83 ± 0.032 OKS, p < 0.001). Autocorrelation values in the lower limbs were significantly different between normal (5 videos) and CS GMs (5 videos, p < 0.05). These data indicate that automated pose estimation of anatomical key points is feasible in NICU patients and that a NICU-trained model can distinguish between normal and CS GMs. These preliminary data indicate that machine learning techniques may represent a promising tool for earlier CP risk assessment in the writhing stage and prior to hospital discharge.

Examining the economic impacts of caregiving among families of children of medical complexity: A qualitative study to inform inclusive economic models.

BACKGROUND: Children with medical complexity (CMC) represent a heterogeneous group of children with multiple, chronic healthcare conditions. Caregivers of CMC experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The economic impacts of caregiving are yet understudied in the CMC context. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease because they lack direct caregiver voice and context of caregiving activities and existing methods have been noted to be ableist. OBJECTIVE: The purpose of this study was to explore the economic spillover impacts of caregiving among families of CMC using their own words and perspectives with the intent of expanding caregiver-centered perspectives when developing economic models. METHODS: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of CMC and their social networks. Caregivers of CMC were recruited through a Pediatric Complex Care clinic at an academic medical center in the mid-Atlantic region, USA. This study used inductive qualitative descriptive methods and the use of a template to define features of the person impacted and to define the economic construct as either a direct or indirect/spillover cost. RESULTS: Twenty caregivers were included in this study. Perspectives from the caregivers of CMC revealed several key themes: (1) time investment in caregiving - impacting the primary caregivers; (2) physical and mental health impacts - impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care - impacting the child themselves, siblings, and the primary caregivers; (4) impacts to the social network/social capital. CONCLUSIONS: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of CMC. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. CLINICALTRIAL: n/a. INTERNATIONAL REGISTERED REPORT: RR2-10.2196/14810.

Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Efficacy of Therapist Supported Interventions from the Neonatal Intensive Care Unit to Home: A Meta-Review of Systematic Reviews.

Infants born preterm or with complicated medical conditions requiring care in the neonatal intensive care unit (NICU) are at high risk for long-term developmental disabilities. The transition from NICU to early intervention/outpatient settings results in a disruptive gap in a therapeutic intervention during a period of maximal neuroplasticity and development. This meta-review evaluated evidence from existing systematic reviews regarding therapeutic interventions that start in the NICU and continue at home with the goal of improving developmental outcomes for infants at high risk for cerebral palsy. We also evaluated the impact of these interventions on parents' mental health outcomes.

Lagging coverage for mental health services among children and adolescents through home and community-based Medicaid waivers.

PROBLEM: Many states cover mental health home and community-based services (HCBS) for youth through 1915(c) Medicaid HCBS waivers that allow states to waive certain Medicaid eligibility criteria and define high-risk populations based on age, medical condition(s), and disability status. We sought to evaluate how States are covering children and adolescents with mental health needs through 1915(c) waivers compared to other youth waiver populations. METHODS: Data elements were extracted from Medicaid 1915(c) approved waivers applications for all included waivers targeting any pediatric age range through October 31, 2018. Normalization criteria were developed and an aggregate overall coverage score and level of funding per person per waiver were calculated for each waiver. FINDINGS: One hundred and forty-two waivers across 45 states were included in this analysis. Even though there was uniformity in the Medicaid applications, there was great heterogeneity in how waiver eligibility, transition plans, services covered, and wait lists were defined across group classifications. Those with mental health needs (termed serious emotional disturbance) represented 5% of waivers with the least annual funding per person per waiver. CONCLUSIONS: We recommend greater links between public policy, infrastructure, health care providers, and a family-centered approach to extend coverage and scope of services for children and adolescents with mental health needs.

Establishing the Need for Anticipatory Symptom Guidance and Networked Models of Disease in Adaptive Family Management Among Children With Medical Complexity: Qualitative Study.

BACKGROUND: Caregivers of children with medical complexity navigate complex family management tasks for their child both in the hospital and home-based setting. The roles and relationships of members of their social network and the dynamic evolution of these family management tasks have been underexamined. OBJECTIVE: The purpose of this study was to explore the structures and processes of family management among caregivers of children with medical complexity, with a focus on the underlying dynamic nature of family management practices and the role of members of their social network. METHODS: This study used a qualitative approach to interview caregivers of children with medical complexity and members of their social network. Caregivers of children with medical complexity were recruited through an academic Children's Hospital Complex Care Clinic in the mid-Atlantic region and interviewed over a period of 1 to 3 days. Responses were analyzed using constructivist grounded theory and situational analysis to construct a new conceptual model. Only caregiver responses are reported here. RESULTS: In total, 20 caregivers were included in this analysis. Caregiver perspectives revealed the contextual processes that allowed for practices of family management within the setting of rapidly evolving symptoms and health concerns. The dynamic and adaptive nature of this process is a key underlying action supporting this novel conceptual model. The central themes underpinning the adaptive family management model include symptom cues, ongoing surveillance, information gathering, and acute on chronic health concerns. The model also highlights facilitators and threats to successful family management among children with medical complexity and the networked relationship among the structures and processes. CONCLUSIONS: The adaptive family management model provides a basis for further quantitative operationalization and study. Previously described self- or family management frameworks do not account for the underlying dynamic nature of the disease trajectory and the developmental stage progression of the child or adolescent, and our work extends existing work. For future work, there is a defined role for technology-enhanced personalized approaches to home-based monitoring. Due to the disparities caregivers and the children in this population already experience, technology-enhanced approaches must be built alongside key stakeholders with an equity orientation to technology co-development. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14810.