Understanding the complexity of decision-making for mothers of young children with ambulatory cerebral palsy: A qualitative phenomenological study.

AIM: To investigate non-clinical factors that affect health-related decision-making in mothers with young ambulatory children living with cerebral palsy (CP). METHOD: Guided by phenomenology, we asked parents to describe early experiences of raising a young ambulatory child living with CP. Conversations were audio-recorded, transcribed, coded, and analysed using a qualitative inductive approach. RESULTS: Eighteen parents (all mothers) of 20 children participated. Five themes emerged related to decision-making, each influencing goal setting, prioritization, and health service use. Mothers had to balance both child and family well-being. Acceptance of their child's diagnosis and abilities changed over time, partially influenced by their child's emerging voice. Uncertainty arose when weighing multiple factors regarding child, family, and what the future held. Experiences were laden with system-level burdens related to underinsurance and care coordination. Themes regularly overlapped and persisted. INTERPRETATION: Our findings highlight the complexity of the decision-making experienced by mothers of young ambulatory children living with CP. Probing this information can inform appropriate shared care planning that meets the preferences and circumstances of mothers and their families.

Strategies to Maximize Data Collection Response Rates in a Randomized Control Trial Focused on Children with Medical Complexity.

INTRODUCTION: Obtaining complete and timely subject data is key to the success of clinical trials, particularly for studies requiring data collected from subjects at home or other remote sites. A multifaceted strategy for data collection in a randomized controlled trial (RCT) focused on care coordination for children with medical complexity is described. The influences of data collection mode, incentives, and study group membership on subject response patterns are analyzed. Data collection included monthly healthcare service utilization (HCSU) calendars and annual surveys focused on care coordination outcomes. MATERIALS AND METHODS: One hundred sixty-three families were enrolled in the 30-month TeleFamilies RCT. Subjects were 2-15 years of age at enrollment. HCSU data were collected by parent/guardian self-report using mail, e-mail, telephone, or texting. Surveys were collected by mail. Incentives were provided for completed surveys after 8 months to improve collection returns. Outcome measures were the number of HCSU calendars and surveys returned, the return interval, data collection mode, and incentive impact. RESULTS: Return rates of 90% for HCSU calendars and 82% for annual surveys were achieved. Mean return intervals were 72 and 65 days for HCSU and surveys, respectively. Survey response increased from 55% to 95% after introduction of a gift card and added research staff. CONCLUSIONS: High return rates for HCSU calendars and health-related surveys are attainable but required a flexible and personnel-intensive approach to collection methods. Family preference for data collection approach should be obtained at enrollment, should be modified as needed, and requires flexible options, training, intensive staff/family interaction, and patience.

Meeting the needs of children with medical complexity using a telehealth advanced practice registered nurse care coordination model.

Effective care coordination is a key quality and safety strategy for populations with chronic conditions, including children with medical complexity (CMC). However, gaps remain in parent report of the need for care coordination help and receipt of care coordination help. New models must close this gap while maintaining family-centered focus. A three-armed randomized controlled trial conducted in an established medical home utilized an advanced practice registered nurse intervention based on Presler's model of clinic-based care coordination. The model supported families of CMC across settings using telephone only or telephone and video telehealth care coordination. Effectiveness was evaluated from many perspectives and this paper reports on a subset of outcomes that includes family-centered care (FCC), need for care coordination help and adequacy of care coordination help received. FCC at baseline and end of study showed no significant difference between groups. Median FCC scores of 18.0-20.0 across all groups indicated high FCC within the medical home. No significant differences were found in the need for care coordination help within or between groups and over time. No significant difference was found in the adequacy of help received between groups at baseline. However, this indicator increased significantly over time for both intervention groups. These findings suggest that in an established medical home with high levels of FCC, families of CMC have unmet needs for care coordination help that are addressed by the APRN telehealth care coordination model.

Pediatric Care Coordination: Lessons Learned and Future Priorities.

A fundamental component of the medical home model is care coordination. In Minnesota, this model informed design and implementation of the state's health care home (HCH) model, a key element of statewide healthcare reform legislation. Children with medical complexity (CMC) often require care from multiple specialists and community resources. Coordinating this multi-faceted care within the HCH is challenging. This article describes the need for specialized models of care coordination for CMC. Two models of care coordination for CMC were developed to address this challenge. The TeleFamilies Model of Pediatric Care Coordination uses an advanced practice registered nurse care (APRN) coordinator embedded within an established HCH. The PRoSPer Model of Pediatric Care Coordination uses a registered nurse/social worker care coordinator team embedded within a specialty care system. We describe key findings from implementation of these models, and conclude with lessons learned. Replication of the models is encouraged to increase the evidence base for care coordination for the growing population of children with medical complexities.

Task-technology fit of video telehealth for nurses in an outpatient clinic setting.

BACKGROUND: Incorporating telehealth into outpatient care delivery supports management of consumer health between clinic visits. Task-technology fit is a framework for understanding how technology helps and/or hinders a person during work processes. Evaluating the task-technology fit of video telehealth for personnel working in a pediatric outpatient clinic and providing care between clinic visits ensures the information provided matches the information needed to support work processes. MATERIALS AND METHODS: The workflow of advanced practice registered nurse (APRN) care coordination provided via telephone and video telehealth was described and measured using a mixed-methods workflow analysis protocol that incorporated cognitive ethnography and time-motion study. Qualitative and quantitative results were merged and analyzed within the task-technology fit framework to determine the workflow fit of video telehealth for APRN care coordination. RESULTS: Incorporating video telehealth into APRN care coordination workflow provided visual information unavailable during telephone interactions. Despite additional tasks and interactions needed to obtain the visual information, APRN workflow efficiency, as measured by time, was not significantly changed. Analyzed within the task-technology fit framework, the increased visual information afforded by video telehealth supported the assessment and diagnostic information needs of the APRN. CONCLUSIONS: Telehealth must provide the right information to the right clinician at the right time. Evaluating task-technology fit using a mixed-methods protocol ensured rigorous analysis of fit within work processes and identified workflows that benefit most from the technology.

Association between social determinants of health and select neurosurgical procedures in the National Spina Bifida Patient Registry.

OBJECTIVE: Myelomeningocele (MMC) is a lifelong condition requiring complex multidisciplinary management. Using the National Spina Bifida Patient Registry (NSBPR), the authors tested the association between sociodemographic variables and odds of undergoing neurosurgical procedures. METHODS: The authors extracted sociodemographic, clinical, and neurosurgical procedure data on participants with MMC aged ≥ 1 year who visited an NSBPR clinic between 2009 and 2020. The zip code of the participant's residence at the time of the last spina bifida clinic visit was linked to the Distressed Communities Index (DCI) tier. Multivariate models were built to identify factors associated with undergoing CSF diversion, shunt revision, tethered cord release (TCR), and Chiari decompression. RESULTS: There were 7924 participants with a median visit age of 13 years (IQR 7-20 years); 49.1% were male, 30.2% were non-Hispanic Black or Hispanic, 54.5% had public/supplemental insurance, and 16.9% were from distressed communities. CSF diversion, shunt revision, TCR, and Chiari decompression were performed in 81.8%, 47.7%, 22.9%, and 8.7% of participants, respectively. In multivariate analyses controlling for age, sex, insurance, DCI tier, lesion level, and surgical closure timing, Hispanic individuals were less likely than their non-Hispanic White counterparts to undergo shunt revision (p = 0.013). Non-Hispanic Black and Hispanic individuals were less likely to undergo TCR (p < 0.001 each) or Chiari decompression (p < 0.001 each). Compared with privately insured individuals, publicly insured individuals were more likely to undergo CSF diversion (p = 0.031). Those in distressed communities had increased odds of undergoing CSF diversion (p = 0.004) than those in prosperous communities. CONCLUSIONS: Among individuals with MMC participating in the NSBPR, there were differences in receiving neurosurgical procedures by race/ethnicity, insurance type, and DCI tier. Additional prospective studies are necessary to elucidate the reasons for these variations and their impact on long-term outcomes for this patient population in order to created targeted interventions.

Mixed-methods approach for measuring the impact of video telehealth on outpatient clinic triage nurse workflow.

Nurse-delivered telephone triage is a common component of outpatient clinic settings. Adding new communication technology to clinic triage has the potential to not only transform the triage process but also alter triage workflow. Evaluating the impact of new technology on an existing workflow is paramount to maximizing the efficiency of the delivery system. This study investigated triage nurse workflow before and after the implementation of video telehealth using a sequential mixed-methods protocol that combined ethnography and time-motion study to provide a robust analysis of the implementation environment. Outpatient clinic triage using video telehealth required significantly more time than telephone triage did, indicating a reduction in nurse efficiency. Despite the increased time needed to conduct video telehealth, nurses consistently rated it useful in providing triage. Interpretive analysis of the qualitative and quantitative data suggests that the increased depth and breadth of data available during video triage alter the assessment that triage nurses provide physicians. This in turn could affect the time physicians spend formulating a diagnosis and treatment plan. While the immediate impact of video telehealth is a reduction in triage nurse efficiency, what is unknown is the impact of video telehealth on physician and overall clinic efficiency. Future studies should address this area.

Meaningful use of data in care coordination by the advanced practice RN: the TeleFamilies project.

Meaningful use of electronic health records to coordinate care requires skillful synthesis and integration of subjective and objective data by practitioners to provide context for information. This is particularly relevant in the coordination of care for children with complex special healthcare needs. The purpose of this article is to present a conceptual framework and example of meaningful use within an innovative telenursing intervention to coordinate care for children with complex special healthcare needs. The TeleFamilies intervention engages an advanced practice nurse in a full-time care coordinator role within an existing hospital-based medical home for children with complex special healthcare needs. Care coordination is facilitated by the synthesis and integration of internal and external data using an enhanced electronic health record and telehealth encounters via telephone and videoconferencing between the advanced practice nurse and the family at home. The advanced practice nurse's ability to maintain an updated plan of care that is shared across providers and systems and build a relationship over time with the patient and family supports meaningful use of these data.

Discharge nurse intervention on a pediatric rehabilitation unit: Retrospective chart review to evaluate the Does it impact on number of unmet needs during the transition home following neurological injury.

PURPOSE: The purpose of this study is to describe the post-discharge needs of children and adolescents when transitioning home after an inpatient comprehensive rehabilitation stay following an acute neurological injury and to evaluate if trends in those needs changed with implementation of a discharge nurse intervention. DESIGN: Retrospective medical record review was conducted 1-year prior (T1) and 1-year after (T2) a discharge nurse intervention. METHODS: Medical charts of 80 pediatric patients with acute neurological injury (T1 = 39; T2 = 41) were reviewed. Post-discharge communication from the 8-week post-discharge period was reviewed to identify and categorize care coordination needs, using 18 pre-defined care coordination categories. T1 and T2 findings were compared using two sample proportion z-test. FINDINGS: Patients discharged following inpatient rehabilitation for acute neurological injury have unmet care coordination needs. The proportion of unmet needs decreased significantly for 10/18 care coordination categories after implementation of the discharge nurse intervention. CONCLUSIONS: Data from this study support proactive care coordination by inpatient rehabilitation nurses to reduce unmet post-discharge care coordination needs and provides preliminary evidence that the role of a discharge nurse may have a positive impact on the transition from inpatient rehabilitation to home.

Successful healthcare transition for youth with special healthcare needs is a team effort.

ABSTRACT: NPs care for persons across the age continuum and transitions commonly occur. Some are unexpected, like hospitalizations for acute illness or injury. Others are an expected consequence of growing up, like moving from pediatric to adult care models. Understanding the factors impacting healthcare transition is critical for successful outcomes.

Exploring the translational impact of a home telemonitoring intervention using time-motion study.

OBJECTIVE: Home telemonitoring improves clinical outcomes but can generate large amounts of data. Automating data surveillance with clinical decision support could reduce the impact of translating these systems to clinical settings. We utilized time-motion methodology to measure the time spent on activities monitoring subjects in the two groups of a home spirometry telemonitoring randomized controlled trial: the manual nurse review (control) group and the automated review (intervention) group. These results are examined for potential workflow effects that could occur when the intervention translates to a clinical setting. MATERIALS AND METHODS: Time motion is an established industrial engineering technique used to evaluate workflow by measuring the time of predefined, discrete tasks. Data were collected via direct observation of two research nurses by a single observer using the repetitive or snap-back timing method. All observed tasks were coded using a list of work activities defined and validated in an earlier study. Reliability data were collected during a 2-h session with a secondary observer. RESULTS: Reliability of the primary observer was established. During 35 h of data collection, a sample of 938 task observations were recorded and coded using 46 previously defined and 5 newly defined work activities. Between-group comparisons of activity time for subjects in the two study groups showed significantly more time spent on data review activities for the automated review group. Reclassification of the 51 observed activities identified 15 activities that would translate to a clinical setting, of which 5 represent potentially new activities. CONCLUSIONS: Implementing an intervention into a clinical setting could add work activities to the clinical workflow. Time-motion study of research personnel working with new clinical interventions provides a template for evaluating the workflow impact of these interventions prior to translation from a research to a clinical setting.

Family-centered care for children with medical complexity: A goal-planning initiative.

NPs piloted a family-centered goal-planning tool with a medically complex pediatric population during outpatient clinic visits. The tool was an effective reminder to discuss goals after trust and rapport are established between provider and family.

Care coordination for children with medical complexity.

Children with medical complexity have complex health management and care coordination needs. Care models that address these needs rely on interprofessional teams that include NPs. Understanding these care models allows NPs from all disciplines to support the care of this growing patient population in pediatric and adult settings.

Identifying and Communicating Postdischarge Goals for Hospitalized Children With Medical Complexity: A Process Improvement Pilot in a Specialty Pediatric Setting.

INTRODUCTION: Family-centered communication at transitions of care can decrease readmissions and costs for children with medical complexity (CMC). The purpose of this quality improvement project was to improve the communication of postdischarge goals for CMC in a pediatric specialty setting. METHODS: We used process improvement strategies to implement a Post-Hospitalization Action Grid (PHAG) and a standardized discharge handoff process. Families of hospitalized CMC at high risk for readmission received the pilot intervention over 3 months. Indicators of successful implementation included rates of use of the PHAG, perceptions of integrated care, and usability of the tool. RESULTS: The PHAG was implemented with 11 of 40 eligible CMC families. Most staff agreed that the new process could improve the communication of postdischarge goals; however, perceptions of integrated care in the organization changed only minimally. DISCUSSION: The PHAG facilitates family engagement in discharge transitions but requires organizational investment of resources to implement.

Home Health Care Availability and Discharge Delays in Children With Medical Complexity.

: media-1vid110.1542/5849572914001PEDS-VA_2018-1951Video Abstract BACKGROUND: An increasing proportion of pediatric hospital days are attributed to technology-dependent children. The impact that a pediatric home care nursing (HCN) shortage has on increasing length of hospital stay and readmissions in this population is not well documented. METHODS: We conducted a 12-month multisite prospective study of children with medical complexity discharging with home health. We studied the following 2 cohorts: new patients discharging for the first time to home nursing and existing patients discharging from the hospital to previously established home nursing. A modified delay tool was used to categorize causes, delayed discharge (DD) days, and unplanned 90-day readmissions. RESULTS: DD occurred in 68.5% of 54 new patients and 9.2% of 131 existing patients. Lack of HCN was the most frequent cause of DD, increasing costs and directly accounting for an average length of stay increase of 53.9 days (range: 4-204) and 35.7 days (3-63) for new and existing patients, respectively. Of 1582 DDs, 1454 (91.9%) were directly attributed to lack of HCN availability. DD was associated with younger age and tracheostomy. Unplanned 90-day readmissions were due to medical setbacks (96.7% of cases) and occurred in 53.7% and 45.0% of new and existing patients, respectively. CONCLUSIONS: DD and related costs are primarily associated with shortage of HCN and predominantly affect patients new to HCN. Medical setbacks are the most common causes of unplanned 90-day readmissions. Increasing the availability of home care nurses or postacute care facilities could reduce costly hospital length of stay.

Home telehealth for children with special health-care needs.

The U Special Kids (USK) programme at the University of Minnesota provides intensive care coordination and case management services to children with complex special health-care needs. We conducted a one-year pilot study to evaluate the feasibility of videoconferencing between the USK office and family homes. To ensure easy installation, families were provided with prepackaged equipment and software. However, the families had different Internet providers, different modems and/or routers and different firewall software, which required case-by-case resolution during home visits by the project coordinator. Five families participated in 3-5 videoconferencing sessions with a USK nurse. All connections with urban families had clear audio and video, whereas connections with rural families had clear audio, but unclear video. All of the scheduled virtual visits were rated by nurses as providing information that was similar to a telephone call. However, the unscheduled virtual visits were rated by the nurses as providing more information than a telephone call, suggesting that home-based videoconferencing may be useful in the management of children with complex special health-care needs.

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity.

The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents still report their greatest challenge is communication gaps. When this occurs, parents assume responsibility for aggregating and sharing health information across providers and settings. A new primary-specialty care coordination partnership model for children with medical complexity works to address these challenges and bridge communication gaps. During the first year of the new partnership, parents participated in focus groups to better understand how they perceive communication and collaboration between the providers and services delivering care for their medically complex child. Our findings from these sessions reflect the current literature and highlight additional challenges of rural families, as seen from the perspective of the parents. We found that parents appreciate when professional care coordination is provided, but this is often the exception and not the norm. Additionally, parents feel that the local health system's inability to care for their medically complex child results in unnecessary trips to urban-based specialty care. These gaps require a system-level approach to care coordination and, consequently, new paradigms for delivery are urgently needed.

The Impact of Telehealth and Care Coordination on the Number and Type of Clinical Visits for Children With Medical Complexity.

INTRODUCTION: The purpose of this analysis was to evaluate the effects of an advanced practice nurse-delivered telehealth intervention on health care use by children with medical complexity (CMC). Because CMC account for a large share of health care use costs, finding effective ways to care for them is an important challenge requiring exploration. METHOD: This was a secondary analysis of data from a randomized clinical trial with a control group and two intervention groups. The focus of the analysis was planned and unplanned clinical and therapy visits by CMC over a 30-month data collection period. Nonparametric tests were used to compare visit counts among and within the three groups. RESULTS: The number of unplanned visits decreased over time across all groups, with the greatest decrease in the video telehealth intervention group. Planned visits were higher in the video telehealth group across all time periods. DISCUSSION: Advanced practice registered nurse-delivered telehealth care coordination may support a shift from unplanned to planned health care service use among CMC.

Reducing OR Traffic Using Education, Policy Development, and Communication Technology.

A bundled approach to surgical site infection (SSI) prevention strategies includes reducing OR traffic. A nurse-led quality improvement (QI) team sought to reduce OR traffic through education and a process change that included wireless communication technology and policy development. The team measured OR traffic by counting the frequency of door openings per hour in seven surgical suites during 305 surgical procedures conducted during similar 22-week periods before and after the QI project intervention. Door openings decreased significantly (P < 0.05) from an average of 37.8 per hour to 32.8 per hour after the QI project intervention. This suggests that our multifaceted approach reduces OR traffic. The next steps of this project include analyzing automatically captured video to understand OR traffic patterns and expanding education to departments and external personnel frequently present in our surgical suites. Future research evaluating the effectiveness of this OR traffic initiative on SSI incidence is recommended.