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OBJECTIVE: To investigate Covid-19 vaccination as a potential secondary public health benefit of case management for Medicaid beneficiaries with health and social needs. DATA SOURCES AND STUDY SETTING: The CommunityConnect case management program for Medicaid beneficiaries is run by Contra Costa Health, a county safety net health system in California. Program enrollment data were merged with comprehensive county vaccination records. STUDY DESIGN: Individuals with elevated risk of hospital and emergency department use were randomized each month to a case management intervention or usual care. Interdisciplinary case managers offered coaching, community referrals, healthcare connections, and other support based on enrollee interest and need. Using survival analysis with intent-to-treat assignment, we assessed rates of first-dose Covid-19 vaccination from December 2020 to September 2021. In exploratory sub-analyses we also examined effect heterogeneity by gender, race/ethnicity, age, and primary language. DATA COLLECTION AND EXTRACTION METHODS: Data were extracted from county and program records as of September 2021, totaling 12,866 interventions and 25,761 control enrollments. PRINCIPAL FINDINGS: Approximately 58% of enrollees were female and 41% were under age 35. Enrollees were 23% White, 12% Asian/Pacific Islander, 20% Black/African American, and 36% Hispanic/Latino, and 10% other/unknown. Approximately 35% of the intervention group engaged with their case manager. Approximately 56% of all intervention and control enrollees were vaccinated after 9 months of analysis time. Intervention enrollees had a higher vaccination rate compared to control enrollees (adjusted hazard ratio [aHR]: 1.06; 95% confidence interval [CI]: 1.02-1.10). In sub-analyses, the intervention was associated with stronger likelihood of vaccination among males and individuals under age 35. CONCLUSIONS: Case management infrastructure modestly improved Covid-19 vaccine uptake in a population of Medicaid beneficiaries that over-represents social groups with barriers to early Covid-19 vaccination. Amidst mixed evidence on vaccination-specific incentives, leveraging trusted case managers and existing case management programs may be a valuable prevention strategy.

Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child's choice of place of death for a child with a non-oncological complex care condition, when death is expected. Eighteen papers were identified considering the preferred place of death. The findings were themed into 1. Diagnostic Factors; 2. Home Factors; 3. Socio-economic Factors; 4. Parent Factors. In conclusion, informed discussions with families that recognize the reason for, and the impact of their choices, are necessary not only for the preferred place of death but also end of life care. [ABSTRACT FROM AUTHOR]

Background and objective Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex care program (CCP) decreases health care resource utilization while improving parental satisfaction. An in-depth understanding of how these changes operate in real-world setting is needed to further support CMC and their families. This study aimed at assessing the possible reasons for a decrease in emergency department (ED) visits and hospitalization length of stay related to enrollment to a CCP, based on parental perspectives. Study design Using a qualitative approach, data were collected using in-depth, semi-structured interviews with parents of CMC enrolled in a CCP from a university hospital centre in Montreal, Canada. The interview guide was co-constructed by an interdisciplinary team, including a parent partner and a clinical nurse coordinator. Themes have been identified inductively, using thematic analysis. Results Parents identified personalized care , family empowerment and guidance as enablers arising from the CCP that contributed to the decrease in hospital-delivered care utilization. Improvement in medical baseline condition was also identified as a contributing factor, while not necessarily related to program's support. Conclusions In this study, we identified personalized care, parental empowerment, and guidance as three strategies for a CCP to potentially decrease ED visits and hospital length of stay, from the parents' perspective. Parents identified the clinical nurse coordinator as playing a central role in supporting the implementation of these strategies. [ABSTRACT FROM AUTHOR]

A diagnosis of interstitial lung diseases (ILD) can be challenging, and the identification of an associated connective tissue disease (CTD) is crucial to estimate prognosis and to establish the optimal treatment approach. Diagnostic delay, limited expertise, and fragmented care are barriers that impede the delivery of comprehensive health care for patients with rare, complex, and multiorgan diseases such as CTD and ILD. In this article, we present our perspective on the interdisciplinary diagnosis and interprofessional treatment of patients with ILD and suspected CTD or CTD at risk of ILD. We outline the structure of our service, delineating the roles and responsibilities of the team members. Additionally, we provide an overview of our patient population, including diagnostic approaches and specific treatments, and illustrate a patient case. Furthermore, we focus on specific benefits and challenges of joint interdisciplinary and interprofessional patient consultations. The importance of rheumatology and pulmonology assessments in specific patient populations is emphasized. Finally, we explore future directions and discuss potential strategies to improve care delivery for patients with CTD-associated ILD. [ABSTRACT FROM AUTHOR]

This study explores the experiences of nurses that provide 'complex', generalist healthcare in hospital settings. Complex care is described as care for patients experiencing acute issues additional to multimorbidity, ageing or psychosocial complexity. Nurses are the largest professional group of frontline healthcare workers and patients experiencing chronic conditions are overrepresented in acute care settings. Research exploring nurses' experiences of hospital‐based complex care is limited, however. This study aims to add to what is known currently. Four 'complex care' nurses undertook in‐depth semistructured interviews and their narratives were analysed using the conceptual framework of complex adaptive phenomenology. Two overarching themes constituting the 'essence' of complex care nursing were identified: Contextual factors and attribute/value‐based elements. Creating meaningful patient outcomes and feeling part of a team were experienced as fulfilling, whereas time constraints, institutional settings and systemic barriers to comprehensive caregiving diminished the experience of providing complex care. Overall, work meaning presented as a dynamic phenomenon, shaped by personal and professional values, local settings and systemic factors. It is recommended that more expansive research be undertaken to explore the experience of complex care for nurses. Such knowledge can contribute to initiatives that draw a skilled, effective and engaged hospital‐based complex care nursing workforce. [ABSTRACT FROM AUTHOR]

OBJECTIVE: This study explored family satisfaction and perceived quality of care in a pediatric neuromuscular care clinic to assess the value of the multidisciplinary clinic (MDC) model in delivering coordinated care to children with neuromuscular disorders, such as cerebral palsy. METHODS: Caregivers of 22 patients were administered a qualitative survey assessing their perceptions of clinic efficiency, care coordination, and communication. Surveys were audio-recorded and transcribed. Thematic analysis was completed using both deductive and inductive methods. RESULTS: All caregivers reported that providers adequately communicated next steps in the patient's care, and most reported high confidence in caring for the patient as a result of the clinic. Four major themes were identified from thematic analysis: Care Delivery, Communication, Care Quality, and Family-Centeredness. Caregivers emphasized that the MDC model promoted access to care, enhanced efficiency, promoted provider teamwork, and encouraged shared care planning. Caregivers also valued a physical environment that was suitable for patients with complex needs. CONCLUSION: This study demonstrated that caregivers believed the MDC model was both efficient and convenient for pediatric patients with neuromuscular disorders. This model has the potential to streamline medical care and can be applied more broadly to improve care coordination for children with medical complexity. [ABSTRACT FROM AUTHOR]

Abstract Background The prevalence of persons with complex needs in Singapore is rising. Poor understanding of what constitutes complexity impedes the identification of care gaps and development of interventions to improve care for these individuals. We aim to identify the characteristics contributing to complexity in primary care, from the Family Physicians’ (FP) perspectives. Methods Focus group discussions (FGDs) were conducted from January to September 2021 with experienced FPs across 14 study sites, employing a qualitative descriptive approach based on a complexity framework. Data were coded independently and categorised using thematic analysis by two independent investigators. Results Five FGDs were conducted with 18 FPs aged 32 to 57 years old working in different primary care settings, with a mean of 13.5 years of primary care experience. Participants emphasised the need for a unified definition of complexity. Complexity is characterised by the presence of issues spanning across two or more domains (medical, psychological, social or behavioural) that adversely impact medical care and outcomes. Persons with complex needs contrast with persons with medically difficult issues. Medical domain issues include the number of active medical problems, poor chronic disease control, treatment interactions, ill-defined symptoms, management of end-of-life conditions and functional impairment. Psychological domain issues include the presence of mental health conditions or cognitive impairment. Social domain issues include the lack of social support, competing social responsibilities and financial issues, while behavioural domain issues include a lack of trust in healthcare workers, fixed health beliefs and poor health literacy. Conclusion Recognising the medical, psychological, social and behavioural factors that contribute to complexity aids in discerning the diverse needs of individuals with complex needs. This underscores the need for additional support in these pertinent areas.

Background: The prevalence of persons with complex needs in Singapore is rising. Poor understanding of what constitutes complexity impedes the identification of care gaps and development of interventions to improve care for these individuals. We aim to identify the characteristics contributing to complexity in primary care, from the Family Physicians' (FP) perspectives. Methods: Focus group discussions (FGDs) were conducted from January to September 2021 with experienced FPs across 14 study sites, employing a qualitative descriptive approach based on a complexity framework. Data were coded independently and categorised using thematic analysis by two independent investigators. Results: Five FGDs were conducted with 18 FPs aged 32 to 57 years old working in different primary care settings, with a mean of 13.5 years of primary care experience. Participants emphasised the need for a unified definition of complexity. Complexity is characterised by the presence of issues spanning across two or more domains (medical, psychological, social or behavioural) that adversely impact medical care and outcomes. Persons with complex needs contrast with persons with medically difficult issues. Medical domain issues include the number of active medical problems, poor chronic disease control, treatment interactions, ill-defined symptoms, management of end-of-life conditions and functional impairment. Psychological domain issues include the presence of mental health conditions or cognitive impairment. Social domain issues include the lack of social support, competing social responsibilities and financial issues, while behavioural domain issues include a lack of trust in healthcare workers, fixed health beliefs and poor health literacy. Conclusion: Recognising the medical, psychological, social and behavioural factors that contribute to complexity aids in discerning the diverse needs of individuals with complex needs. This underscores the need for additional support in these pertinent areas. [ABSTRACT FROM AUTHOR]

Objectives Inpatients with language barriers and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Although in-person interpreters are particularly beneficial for these patients, they are underused. We plan to use machine learning predictive analytics to reliably identify patients with language barriers and complex medical needs to prioritize them for in-person interpreters. Materials and methods This qualitative study used stakeholder engagement through semi-structured interviews to understand the perceived risks and benefits of artificial intelligence (AI) in this domain. Stakeholders included clinicians, interpreters, and personnel involved in caring for these patients or for organizing interpreters. Data were coded and analyzed using NVIVO software. Results We completed 49 interviews. Key perceived risks included concerns about transparency, accuracy, redundancy, privacy, perceived stigmatization among patients, alert fatigue, and supply–demand issues. Key perceived benefits included increased awareness of in-person interpreters, improved standard of care and prioritization for interpreter utilization; a streamlined process for accessing interpreters, empowered clinicians, and potential to overcome clinician bias. Discussion This is the first study that elicits stakeholder perspectives on the use of AI with the goal of improved clinical care for patients with language barriers. Perceived benefits and risks related to the use of AI in this domain, overlapped with known hazards and values of AI but some benefits were unique for addressing challenges with providing interpreter services to patients with language barriers. Conclusion Artificial intelligence to identify and prioritize patients for interpreter services has the potential to improve standard of care and address healthcare disparities among patients with language barriers. [ABSTRACT FROM AUTHOR]

Background: Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional changes long after the postoperative recovery period; however, evidence from the perspective of caregivers is limited. The purpose of the study was to explore the functional postoperative recovery process for children with SNI. Methods: Eligible participants were English-speaking caregivers of children with SNI between 6 months and 17 years who were nonverbal, Gross Motor Function Classification Scale level IV/V, and who had surgery/procedure requiring general anesthetic at a tertiary children's hospital between 2012 and 2022. Demographic and basic health information were collected via surveys and corroborated by a review of the child's electronic health record. Semi-structured interviews were conducted and a thematic content analysis was used to formulate results. Results: Data from 12 primary caregiver interviews revealed four main themes: (1) functional changes and complications in the child; (2) feeling unprepared; (3) perioperative support; and (4) changes to caregiver roles. Conclusions: Postoperative functional decline in children with SNI was prevalent in our sample. Providing pre-operative information to families to describe this phenomenon should be a regular part of family-informed care. [ABSTRACT FROM AUTHOR]

Background: As care shifts from institutional to community settings, family caregivers are providing increasing support to older adults, including complex medical/nursing care. In the mid‐late pandemic, technology advancements such as use of online patient portals present opportunities for communication and care delivery. This study aims to assess the association between caregiver medical/nursing tasks or patient portal use with contact, communication, and training of caregivers by healthcare providers. Methods: We conducted a cross‐sectional analysis of caregiver data from the 2021 National Study of Caregiving (NSOC), linked to the National Health and Aging Trends Study (NHATS). NHATS is nationally‐representative, annual survey of Medicare enrollees; NSOC surveys family/unpaid caregivers of NHATS participants. Logistic regression tested association between whether the caregiver does medical/nursing tasks or uses an online patient portal to contact the medical team (independent variables), and communication with or training by the medical team (dependent variables). Results: Participants were 1590 caregivers of living, community‐dwelling older adults. More than half (54%) reported no contact with the care recipient's medical team in the past year. Caregivers who did medical/nursing tasks (OR = 3.10; 95% CI: 2.16, 4.46) or who used patient portals (OR = 3.28; 95% CI: 1.96, 5.51) had higher odds of contacting the older adult's medical team. Thirty percent of caregivers stated communication was either not at all or just a little helpful. Sixty‐seven percent reported that providers rarely asked if they needed help managing the older adult's treatments. Just 6% of caregivers reported receiving any caregiver training in the last year. Conclusions: Both medical/nursing tasks and online patient portal use were independently associated with contact with health providers. Overall contact, communication, and training were limited or of variable value. Despite recent policy changes and technology advancement, there is still a need for improved integration of caregivers into health teams with ongoing assessment of their needs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Children with medical complexity (CMC) account for 1% of children in the United States. These children experience frequent hospital readmissions, high healthcare costs and poor health outcomes. A link between CMC caregiver social support, resilience and hospital readmissions has never been fully investigated. This study examines the feasibility of a prospective, descriptive, repeated measures research design to characterize CMC and their caregivers, social supports, caregiver resilience and hospital readmissions to inform a larger prospective investigation. Methods: Caregivers of CMC with unplanned hospitalizations completed surveys at the index hospitalization and 30 and 60 days after discharge. CMC caregiver and child characteristics, social supports and hospital readmissions were examined using an investigator‐developed survey. Resilience was measured using the Resilience Scale‐14© (7‐Point Likert Scale, score range 14–98), and feasibility was measured by calculating enrolment, attrition, survey completion and item response. Analysis included descriptive statistics and qualitative data visualization. Results: Of caregivers who were approached for participation, 81.1% consented and completed 76 surveys. Attrition was 31%. Item response rates were ≥ 90% for all but one item. A total of 62.1% of children had hospital readmissions within 90 days and 37.9% within 30 days. Additionally, 70% of caregivers had home care nursing, but the approved hours were only partially filled. More than 70% of caregiver resilience scores were moderate to high (score range 74–98) and were stable across repeated measures and hospital readmissions. Open‐ended question responses revealed the following five categories: All‐consuming, Family Reliance, Impact of Covid, Taking Action and Broken System. Conclusions: Studying CMC caregiver social supports and resilience using repeated measures is feasible. CMC caregivers reported stressors including coordinating their child's substantial healthcare needs and managing partially filled home care nursing hours. Caregiver resilience remained stable over time, amidst frequent CMC hospital readmissions. Findings can inform future research priorities and power analyses for CMC caregiver resilience. [ABSTRACT FROM AUTHOR]

The rapid and widespread shift to virtual care during COVID-19 created new opportunities and unique challenges for families of children with medical complexity (CMC). However, few studies have examined perceptions of virtual care during the pandemic in this population. To address this gap, the current study used a qualitative approach and semistructured interviews via Zoom to explore parent perspectives of virtual care. Purposive sampling was used to recruit 30 parents residing with their CMC (aged 0-18 years) in British Columbia, Canada. The findings identified from the data included (1) advantages and opportunities, (2) concerns and challenges, and (3) parent choice and preference. Our findings indicate the need for healthcare professionals to receive training to use virtual care in their practice effectively. In addition, policies about standards for virtual care and ensuring families have access to the necessary technology will help reduce barriers and improve equity and inclusion for this population. [ABSTRACT FROM AUTHOR]

Individuals with complex, chronic diseases represent 5% of the population but consume 50% of the costs of care. These patients have complex lives, characterized by multiple chronic physical health conditions paired with a combination of behavioral health issues and/or unmet social needs. Unlike for most health problems, the problems faced by individuals with complex lives cannot be broken down into simpler parts to be solved independent from 1 another. In this article, the authors describe a 2-phase framework for improving outcomes in patients with complex lives, outline how the model works in more detail, and discuss lessons learned in this journey. In phase 1, a case manager carefully and deliberately focuses on building a relationship with the patient to first gain trust, and then identify, in partnership with the patient, how to best approach assisting the patient in improving their health. That pathway is often unknowable without a deep investment of time, a radical acceptance of the patient, faults and all, and an unwavering commitment to stay by their side, even when things are tough. Once the case manager and patient have established a trusting relationship, they enter phase 2—building a path toward wellness, including further emphasis on the relationship, solving prioritized issues, changing the health system approach, and engaging the patient in self-reflection and behavior change activities. [ABSTRACT FROM AUTHOR]

Purpose: The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention. Methods: A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review. Results: Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach. Conclusion: These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed. [ABSTRACT FROM AUTHOR]

Abstract Background Persons in need of services from different care providers in the health and welfare system often struggle when navigating between them. Connecting and coordinating different health and welfare providers is a common challenge for all involved. This study presents a long-term regional empirical example from Sweden—ESTHER, which has lasted for more than two decades—to show how some of those challenges could be met. The purpose of the study was to increase the understanding of how several care providers together could succeed in improving care by transforming a concept into daily practice, thus contributing with practical implications for other health and welfare contexts. Methods The study is a retrospective longitudinal case study with a qualitative mixed-methods approach. Individual interviews and focus groups were performed with staff members and persons in need of care, and document analyses were conducted. The data covers experiences from 1995 to 2020, analyzed using an open inductive thematic analysis. Results This study shows how co-production and person-centeredness could improve care for persons with multiple care needs involving more than one care provider through a well-established Quality Improvement strategy. Perseverance from a project to a mindset was shaped by promoting systems thinking in daily work and embracing the psychology of change during multidisciplinary, boundary-spanning improvement dialogues. Important areas were Incentives, Work in practice, and Integration, expressed through trust in frontline staff, simple rules, and continuous support from senior managers. A continuous learning approach including the development of local improvement coaches and co-production of care consolidated the integration in daily work. Conclusions The development was facilitated by a simple question: “What is best for Esther?” This question unified people, flattened the hierarchy, and reminded all care providers why they needed to improve together. Continuously focusing on and co-producing with the person in need of care strengthened the concept. Important was engaging the people who know the most—frontline staff and persons in need of care—in combination with permissive leadership and embracing quality improvement dimensions. Those insights can be useful in other health and welfare settings wanting to improve care involving several care providers.

Abstract Background The use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology. Methods A hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries. Results Three themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations. Discussion There are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain. Conclusion During a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care.

Introduction Caring for children with medical complexity (CMC) requires specialized knowledge and skills. However, no standardized curricula are used across training programs as institutions have varying needs and resources. Methods We created a patient-focused, interactive curriculum for two CMC topics: feeding/nutrition and pain/irritability. We integrated the 45-minute sessions into morning protected patient-care time on an inpatient pediatric team at an urban tertiary care hospital. Targeted toward all pediatric residents and medical students rotating in inpatient pediatrics over a 12-month period, the sessions used a mix of didactic, discussion, and hands-on activities. Learners on one of two inpatient teams received the curriculum, while those on the other received a curriculum unrelated to CMC and served as a control group. Both groups completed retrospective pre/post self-assessments to evaluate self-efficacy with respect to the learning objectives. Results Over the 12-month period, 72 surveys were completed for the feeding/nutrition session, 78 surveys for the pain/irritability session, and 42 control surveys. The intervention group saw the greatest increase in self-efficacy scores generally in the feeding/nutrition session. All eight learning objectives saw significant improvement in self-efficacy scores for the intervention group. There was significantly greater improvement in self-efficacy for the intervention group compared to the control for all eight learning objectives. Discussion Through this patient-focused curriculum, learners had improved self-efficacy scores compared to the natural learning occurring on the inpatient service. The curriculum could be adapted to fit the needs of other institutions and provides a practical, hands-on approach to learning about caring for CMC.

Background: The use of long-term life-sustaining technology for children improves survival rates in paediatric intensive care units (PICUs), but it may also increase long-term morbidity. One example of this is children who are dependent on invasive long-term ventilation. Clinicians caring for these children navigate an increasing array of ethical complexities. This study looks at the meaning clinicians give to the bioethical considerations associated with the availability of increasingly sophisticated technology. Methods: A hermeneutic phenomenological exploration of the experiences of clinicians in deciding whether to initiate invasive long-term ventilation in children took place, via unstructured interviews. Data were analysed to gain insight into the lived experiences of clinicians. Participants were from PICUs, or closely allied to the care of children in PICUs, in four countries. Results: Three themes developed from the data that portray the experiences of the clinicians: forming and managing relationships with parents and other clinicians considering, or using, life sustaining technology; the responsibility for moral and professional integrity in the use of technology; and keeping up with technological developments, and the resulting ethical and moral considerations. Discussion: There are many benefits of the availability of long-term life-sustaining technology for a child, however, clinicians must also consider increasingly complex ethical dilemmas. Bioethical norms are adapting to aid clinicians, but challenges remain. Conclusion: During a time of technological solutionism, more needs to be understood about the influences on the initiation of invasive long-term ventilation for a child. Further research to better understand how clinicians, and bioethics services, support care delivery may positively impact this arena of health care. [ABSTRACT FROM AUTHOR]

Background: Persons in need of services from different care providers in the health and welfare system often struggle when navigating between them. Connecting and coordinating different health and welfare providers is a common challenge for all involved. This study presents a long-term regional empirical example from Sweden—ESTHER, which has lasted for more than two decades—to show how some of those challenges could be met. The purpose of the study was to increase the understanding of how several care providers together could succeed in improving care by transforming a concept into daily practice, thus contributing with practical implications for other health and welfare contexts. Methods: The study is a retrospective longitudinal case study with a qualitative mixed-methods approach. Individual interviews and focus groups were performed with staff members and persons in need of care, and document analyses were conducted. The data covers experiences from 1995 to 2020, analyzed using an open inductive thematic analysis. Results: This study shows how co-production and person-centeredness could improve care for persons with multiple care needs involving more than one care provider through a well-established Quality Improvement strategy. Perseverance from a project to a mindset was shaped by promoting systems thinking in daily work and embracing the psychology of change during multidisciplinary, boundary-spanning improvement dialogues. Important areas were Incentives, Work in practice, and Integration, expressed through trust in frontline staff, simple rules, and continuous support from senior managers. A continuous learning approach including the development of local improvement coaches and co-production of care consolidated the integration in daily work. Conclusions: The development was facilitated by a simple question: "What is best for Esther?" This question unified people, flattened the hierarchy, and reminded all care providers why they needed to improve together. Continuously focusing on and co-producing with the person in need of care strengthened the concept. Important was engaging the people who know the most—frontline staff and persons in need of care—in combination with permissive leadership and embracing quality improvement dimensions. Those insights can be useful in other health and welfare settings wanting to improve care involving several care providers. [ABSTRACT FROM AUTHOR]

Background: Children with severe neurologic impairment (SNI) regularly require major surgery to manage their underlying conditions. Anecdotal evidence suggests that children with SNI experience unexpected and persistent postoperative functional changes long after the postoperative recovery period; however, evidence from the perspective of caregivers is limited. The purpose of the study was to explore the functional postoperative recovery process for children with SNI. Methods: Eligible participants were English-speaking caregivers of children with SNI between 6 months and 17 years who were nonverbal, Gross Motor Function Classification Scale level IV/V, and who had surgery/procedure requiring general anesthetic at a tertiary children’s hospital between 2012 and 2022. Demographic and basic health information were collected via surveys and corroborated by a review of the child’s electronic health record. Semi-structured interviews were conducted and a thematic content analysis was used to formulate results. Results: Data from 12 primary caregiver interviews revealed four main themes: (1) functional changes and complications in the child; (2) feeling unprepared; (3) perioperative support; and (4) changes to caregiver roles. Conclusions: Postoperative functional decline in children with SNI was prevalent in our sample. Providing pre-operative information to families to describe this phenomenon should be a regular part of family-informed care.

Introduction Children and youth with special health care needs (CYSHCN) are a special, vulnerable population. Children with medical complexity (CMC) represent a smaller, medically fragile sliver (6%) of the US child population. Several professional pediatric entities direct (or require) pediatric educators to instruct residents in advocacy for all children, explicitly including CYSHCN/CMC populations. While many existing curricula address pediatric advocacy education, a gap remains in curricula specifically designed to aid learners in advocacy of CYSHCN/CMC. Methods Using Kolb's experiential learning cycle as a framework, we designed and delivered a comprehensive outpatient complex care curriculum, including several didactic video lectures (total: 60:04 minutes, median: 6:25 minutes) and experiential site visits devoted to advocacy topics for CMC, as one portion of a 4-week elective complex care rotation. Residents completed pre- and posttests of knowledge and pre- and postsurveys to self-assess attitudes, comfort, and behavior; viewed didactic video lectures; and engaged in experiential site visits. Reflective statements captured attitudes regarding advocacy for CMC. Results Between July 2016 and June 2020, 47 trainees completed the rotation; data were available for 30 trainees. Residents demonstrated a statistically significant improvement in knowledge (p < .001), as well as improved attitudes, diversity sensitivity, and comfort in advocating for CMC postrotation. Qualitative comments showed overwhelmingly positive learner reaction. Discussion This curriculum, which can be offered as a stand-alone resource or a supplement to a comprehensive complex care curriculum, incorporates didactic and experiential teaching methods and addresses a significant competency in advocacy education.

Low-barrier care (LBC) for people with human immunodeficiency virus (HIV) is a differentiated service delivery strategy to engage people in HIV treatment who are not well-engaged in conventionally organized HIV medical care. The LBC approach is flexible, but experience suggests that the intervention has distinct core components. This review summarizes our experience implementing one model of LBC, the Max Clinic in Seattle; describes the core components of the intervention; and presents a framework for implementing low-barrier HIV care with the goal of providing a practical guide for clinical and public health leaders seeking to implement a new LBC program. A systematic approach to addressing key factors during LBC implementation can support practitioners to design an LBC approach that fits the local context while maintaining essential elements of the intervention. [ABSTRACT FROM AUTHOR]

MECP2 duplication syndrome (MDS) is a rare, X-linked, neurodevelopmental disorder resulting from the duplication of the methyl-CpG-binding protein 2 (MECP2) gene. The clinical features of MDS include severe intellectual disability, global developmental delay, seizures, recurrent respiratory infections, and gastrointestinal problems. The aim of this qualitative study was to explore how the parents of children with MDS manage their child's seizures, recurrent respiratory infections, and gastrointestinal symptoms, and the impact on them as parents. The data were coded into three categories: (1) complex care needs in the home, (2) highly skilled caregivers, and (3) impact on caregivers and families. Complex 24 h care was required and parents developed complex skillsets to ensure that this was delivered well to their child. The provision of extensive complex medical care in the home had an impact on parent mental and physical health, family dynamics, and finances. This study captures the management of high-burden comorbidities in MDS at home. Investigations into how best to support caregiver wellbeing to reduce their stresses, whilst maintaining optimal child health and wellbeing, are needed. [ABSTRACT FROM AUTHOR]

Background: Children with complex health needs (CCHN) have intersecting medical, behavioral health, and social needs. Unfortunately, fragmentation across health and social services sectors often results in uncoordinated care for CCHN and their families. Objective: The purpose of this article is to describe the creation of a statewide cross-sector partnership, the Children's Complex Care Coalition of North Carolina, to identify and act on opportunities for system-level improvements in the care of CCHN. Methods: We applied a virtual community engagement approach to form an advisory committee of cross-sector collaborators; systematically identify priorities most important and urgent to collaborators for improving systems of care; and host a series of virtual convenings involving more than 90 attendees from across the state to operationalize collaborator-identified priorities into actionable next steps. Lessons Learned: Key facilitators of success for the Children's Complex Care Coalition of North Carolina partnership were investing time in building trusting relationships, particularly with families of CCHN, and aligning goals and priorities with existing local and regional efforts. Challenges included incorporating traditionally under-represented perspectives, right-sizing virtual convening attendance and number of topics covered, and navigating technological difficulties in a virtual environment. Conclusions: Health systems can catalyze the formation of cross-sector coalitions and community partnerships to advance complex care. Virtual convenings with interactive activities and participatory structures can be an efficient medium to connect coalition members and elicit actionable recommendations for system-level improvements that address the needs of community members. [ABSTRACT FROM AUTHOR]

Abstract Background More and more patients need complex care, especially the elderly. For various reasons, this is becoming increasingly difficult. The onus is essentially on family physicians to provide this care and family medicine residency programs should therefore prepare their residents for this task. We know from self-determination theory (SDT) that motivation plays a key role in learning and that in order to boost motivation, fulfillment of 3 basic psychological needs - for autonomy, competence, and relatedness – is crucial. As residents often lack motivation, residency programs face the important challenge to motivate them to learn about and engage in complex elderly care. How to do so, however, is not yet sufficiently understood. Methods We conducted a qualitative multi-institutional case study across four universities in Belgium and the Netherlands. In the period between June, 2015, and May, 2019, we triangulated information from semi-structured interviews, document analysis, and observations of educational moments. Guided by SDT concepts, the analysis was performed iteratively by a multidisciplinary team, using ATLAS.ti, version 8. In this process, we gained more insights into residents’ motivation to learn complex elderly care. Results We scrutinized 1,369 document pages and 4 films, observed 34 educational moments, and held 41 semi-structured interviews. Although we found all the 3 basic psychological needs postulated by SDT, each seemed to have its own challenges. First, a tension between the need to guide residents and to encourage their independent learning complicated fulfillment of the need for autonomy. Second, the unpredictability of complex care led to reduced feelings of competence. Yet, guidelines and models could help residents to capture and apprehend its complexity. And third, family medicine practice, patients, and educational practice, by either satisfying or thwarting the need for relatedness, were identified as key mediators of motivation. By setting the right example and encouraging residents to discuss authentic dilemmas and switch their health care approach from cure to care, educators can boost their motivation. Conclusion Our study has demonstrated that the degree of perceived autonomy, guidance by the education program, use of authentic dilemmas, as well as involvement of group facilitators can aid the process of motivation. Trial registration NVMO, ERB number 482.

Sarah AK Uthoff,1 Anna Zinkevich,1 Jens Boenisch,2 Stefanie K Sachse,2 Tobias Bernasconi,2 Anna L Brütt,1 Lena Ansmann1 1Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany; 2Department of Special Education and Rehabilitation, University of Cologne, Cologne, GermanyCorrespondence: Sarah AK Uthoff, Department of Health Services Research, Carl von Ossietzky University of Oldenburg, Ammerländer Heerstraße 140, Oldenburg, 26129, Germany, Tel\Fax +494417984167, Email sarah.uthoff@uni-oldenburg.dePurpose: Many care settings are characterized by collaboration between a variety of stakeholders. People without natural speech who rely on augmentative and alternative communication (AAC) are often strongly dependent on the involved stakeholders and collaboration among them. Since collaboration can be challenged by many barriers, this study examines the impact of a complex intervention on collaboration in AAC care.Methods: In a quasi-experimental mixed methods intervention study which include AAC training, AAC therapy and case management, caregivers of AAC users were surveyed at 3 time points to assess collaboration and case management in the intervention versus comparison group. In addition, semi-structured focus group interviews were conducted with caregivers in the intervention group. Quantitative data were analyzed descriptively and by comparison of means. Qualitative data were analyzed using qualitative content analysis.Results: The Mann–Whitney U-test showed significantly better collaboration in the intervention group with stakeholders that are more actively involved in AAC care, such as schools (p=0.026) and residential or social facilities (p=0.010), but not with passive stakeholders such as health insurance companies. Most aspects of case management were rated significantly better in the intervention group (p< 0.001). The focus group results show mainly positive changes in collaboration with the active stakeholders, such as more commitment and openness toward AAC.Conclusion: The results show a positive impact of the intervention on the collaboration between stakeholders involved in AAC care – especially with active stakeholders. In particular, the organization of care and the accompanying case management by the AAC consultation centers seem to positively affect collaboration.Keywords: stakeholders, teamwork, mixed methods, focus groups, complex care

Children with medical complexity (CMC) are a medically fragile subset of children who rely on parental caregivers for substantial care needs. Caregivers of CMC often experience adverse health outcomes such as depression and anxiety, sleep deprivation, financial hardships, and social isolation. Caregivers of CMC are at risk of premature mortality, which is thought to be mediated by chronic and elevated stress, as well as psychiatric morbidity risk. Access to mental health care, where the needs of both the caregiver and child are considered, can enable caregivers to meet high caregiving demands and improve both child and caregiver outcomes. We describe the Caring for the Caregiver (C4C) model, a novel integrated stepped care model consisting of collaboration between a psychiatrist and a pediatric complex care program. This model provides support in 3 steps: 1) early identification of distress, 2) social work assessment, intervention and psychotherapy, and 3) psychiatric care, including diagnosis or medication initiation, for caregivers of CMC. This innovative model will be the first to embed support for the mental health needs of caregivers of CMC within a pediatric team, facilitating access to psychiatric care and serving as a foundation for future integrated stepped care models. [ABSTRACT FROM AUTHOR]

Introduction Pediatric resident training typically prepares learners to care for children with medical complexity (CMC) when acutely ill; however, residents often do not receive formal primary care training for this population. We designed a curriculum to improve pediatric resident knowledge, skills, and behavior when providing a medical home for CMC. Methods Guided by Kolb's experiential cycle, we designed and offered a complex care curriculum as a block elective to pediatric residents and pediatric hospital medicine fellows. Participating trainees completed a prerotation assessment to establish baseline skills and self-reported behaviors (SRB) and four pretests to document baseline knowledge and skills. Residents viewed online didactic lectures weekly. During four half-day patient care sessions per week, faculty reviewed documented assessments and plans. Additionally, trainees attended community-based site visits to appreciate the socioenvironmental perspective of CMC families. Trainees completed posttests and a postrotation assessment of skills and SRB. Results Between July 2016 and June 2021, 47 trainees participated in the rotation, with data available for 35 trainees. Residents demonstrated significant improvement in knowledge (p < .001), self-assessed skills (average Likert-scale rating prerotation = 2.5 vs. postrotation = 4.2), and SRB (average Likert-scale rating prerotation = 2.3 vs. postrotation = 2.8) based on test scores and trainees’ postrotation self-assessments. Learner evaluations of the rotation site visits (15 out of 35, 43%) and video lectures (eight out of 17, 47%) demonstrated overwhelmingly positive reaction. Discussion This comprehensive outpatient complex care curriculum addressing seven of 11 nationally recommended topics demonstrated improvement in trainees’ knowledge, skills, and behaviors.

ContextDeaths among incarcerated individuals have steadily increased in the U.S., exceeding 5000 in 2014. Nearly every state has a policy to allow patients with serious life-limiting illness to apply for release from prison or jail to die in the community ("early medical release"). Although studies show these policies are rarely used, patient-level barriers to their use are unknown.ObjectivesTo assess incarcerated patients' knowledge of early medical release policies and to identify patient-level barriers to accessing these policies.MethodsA cross-sectional survey of 46 male patients in two state prisons and one large urban jail who had visited a primary care provider at least three times within three months was conducted.ResultsParticipants' average age was 64 years, and 89% had more than one chronic illness. Fewer than half (43%) demonstrated the knowledge needed to apply for early medical release and 22% demonstrated no relevant knowledge. Participants with sufficient knowledge were significantly more likely to endorse anxiety (35% vs. 0%, P = .003) and loneliness (65% vs. 30%, P = .017).ConclusionMany medically complex incarcerated patients in this study did not demonstrate sufficient knowledge to apply for early medical release suggesting that patient education may help expand access to these policies. Moreover, seriously ill patients with knowledge of early medical release may benefit from enhanced psychosocial support given their disproportionate burdens of anxiety and loneliness. Our findings highlight the pressing need for larger studies to assess whether improved patient education and support can expand access to early medical release.

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Background: More and more patients need complex care, especially the elderly. For various reasons, this is becoming increasingly difficult. The onus is essentially on family physicians to provide this care and family medicine residency programs should therefore prepare their residents for this task. We know from self-determination theory (SDT) that motivation plays a key role in learning and that in order to boost motivation, fulfillment of 3 basic psychological needs - for autonomy, competence, and relatedness – is crucial. As residents often lack motivation, residency programs face the important challenge to motivate them to learn about and engage in complex elderly care. How to do so, however, is not yet sufficiently understood. Methods: We conducted a qualitative multi-institutional case study across four universities in Belgium and the Netherlands. In the period between June, 2015, and May, 2019, we triangulated information from semi-structured interviews, document analysis, and observations of educational moments. Guided by SDT concepts, the analysis was performed iteratively by a multidisciplinary team, using ATLAS.ti, version 8. In this process, we gained more insights into residents’ motivation to learn complex elderly care. Results: We scrutinized 1,369 document pages and 4 films, observed 34 educational moments, and held 41 semi-structured interviews. Although we found all the 3 basic psychological needs postulated by SDT, each seemed to have its own challenges. First, a tension between the need to guide residents and to encourage their independent learning complicated fulfillment of the need for autonomy. Second, the unpredictability of complex care led to reduced feelings of competence. Yet, guidelines and models could help residents to capture and apprehend its complexity. And third, family medicine practice, patients, and educational practice, by either satisfying or thwarting the need for relatedness, were identified as key mediators of motivation. By setting the right example and encouraging residents to discuss authentic dilemmas and switch their health care approach from cure to care, educators can boost their motivation. Conclusion: Our study has demonstrated that the degree of perceived autonomy, guidance by the education program, use of authentic dilemmas, as well as involvement of group facilitators can aid the process of motivation. Trial registration: NVMO, ERB number 482. [ABSTRACT FROM AUTHOR]

Aim: The aim of this work is to explore the unintended consequences of pandemic public health measures on health care service usage by children with medical complexity. Background: Medical complexity is characterized by the presence of complex, chronic conditions requiring specialized care, substantial health needs, functional dependence and/or limitations, and frequent health care usage. Children with medical complexity are among the highest users of paediatric health care services. Methods: A web‐based, cross‐sectional survey was conducted in British Columbia, Canada, between August and September 2020. Inclusion criteria were (a) parent/guardian of at least one child (age 0 to 18 years, inclusive) with medical complexity and (b) residence in British Columbia. A convenience sample of 156 parents completed the survey. Data were analysed using a series of descriptive analyses (frequencies, cross‐tabulations) and inferential analyses (binary logistic regressions). Results: Respondents provided information for 188 children with medical complexity. Access to allied health therapies (physio, occupational, and speech and language) and medical specialists drastically declined in the initial months of the pandemic, with a shift from in‐person to virtual platforms for these aspects of care. Regression modelling indicated that age and family structure influenced decisions to use in‐patient hospital services. Conclusions: Public health measures implemented in the initial months of the pandemic decreased access to health care services for children with medical complexity. The long‐term ramifications of these measures are unknown. Family structure was found to influence decisions to avoid accessing Emergency Department care. Given the volume of services used by these children, paediatric hospital leaders need to take their unique needs into consideration in disaster planning to ensure minimal disruptions in care. [ABSTRACT FROM AUTHOR]

Older Australians may live up to 10 years in ill health, most likely chronic disease‐related. Those with multimorbidity report more healthcare visits, poorer health and take more medications compared with people with a single chronic disease. They are also at higher risk of hospital admission and poor quality of life. People living with multimorbidity are considered to have "complex care" needs. A person‐centred approach to healthcare has led to increasing use of in‐home nursing support, enabling older people to receive care at home. Our prospective observational study describes the profile and management of home‐based care for older people with complex care needs and examines changes in their quality of life over 12 months. Routinely collected data were analysed, including demographics, medical history, medications and the visit activity of staff providing care to participants. Additional health‐related quality of life and hospitalisation data were collected via quarterly surveys and analysed. Fifty‐two participants (mean age 76.6 years, 54% female) with an average of eight diagnosed health conditions, received an average of four home care visits per week. Almost half the participants were hospitalised once during the 12‐month period and experienced a significant decline in overall quality of life and in the dimensions measuring independent living and relationships over the study period. If ageing in place with good quality of life is to be realised by older adults with multimorbidity, support services including home nursing need to consider both the biomedical and social determinants perspectives when addressing health and social care needs. [ABSTRACT FROM AUTHOR]

For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process.

Abstract Background Children with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs. Methods We implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2–3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness. Results Observations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3–5), feasibility (mean = 4.2; range = 3–5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%). Conclusions It was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.

Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. Objectives: To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. Design:Post hoc secondary analysis of data from a qualitative cross-sectional study. Setting/Subjects: Semistructured interviews conducted between August 2019 and February 2020 with parents of children with SNI and interprofessional clinicians at a single tertiary children's hospital in the United States. Measurement: Data from codes pertaining to strategies to promote therapeutic alliance were extracted for inductive thematic analysis and to collate ideas for tools suggested by participants. The research team iteratively discussed each proposed tool, developed an example representative depiction, and expanded upon potential opportunities and limitations of the tools' practical implementation. Results: Twenty-five parents/legal guardians and 25 interprofessional clinicians participated. The median age of parents/legal guardians was 38 [interquartile range 35,48]. Sixty-eight percent (n = 17) identified as mothers and 68% (n = 17) identified as white. Clinicians were predominantly female (84%, n = 21) and represented 8 professions and 15 specialties. Themes and suggested tools included (1) continuity of previous decision-making conversations and the decision roadmap tool, (2) maintaining family communication preferences and the relational handoff tool, and (3) recognizing the abilities of each individual child and the developmental inventory tool. Conclusions: Family-centered care for parents of children with SNI may be bolstered by continuity in decision making, maintaining parents' communication preferences, and appreciating the child's individual abilities. Clinical tools may provide opportunities to promote these concepts. [ABSTRACT FROM AUTHOR]

Improvements in diagnostic and therapeutic modalities of antenatal care has meant that the neonatal intensive care units (NICU) need to care for infants with complex congenital conditions who need ongoing care post discharge. This, along with improved survival of the extreme preterm infants, provides the neonatal team with a cohort of infants who require long-standing multi-disciplinary input. However, provision of dedicated teams looking after infants with complex medical needs is not commonly reported in NICU workforce structure. The objective of this study is to perform a scoping review of literature on the presence of structured and dedicated complex care management teams in neonatal intensive care unit and their outcomes on care delivery. A scoping review was undertaken to identify all reported literature on existence of chronic care teams in NICU searching medical databases. A narrative synthesis of results was prepared. Conclusions: The review identified very few clinical models reported with no robust data on clinical outcome measures. What is Known: • Neonatal units are increasingly providing care for infants who require chronic ongoing input from multiple specialties or allied health professionals. A majority of this cohort is formed by extreme preterm infants who require long term respiratory support or nutritional rehabilitation. • There are examples of dedicated clinical teams looking after complex patients in adult and pediatric intensive care outfits leading to improvements in outcome. What is New: • This is first literature review in the authors' knowledge on the use of complex care teams in neonatal intensive care unit. • This article provides a narrative synthesis of the clinical models that have been used by complex care teams in neonatal intensive care unit and whether they have demonstrated tangible benefits in patient outcome. [ABSTRACT FROM AUTHOR]

Objective: Children with complex health needs (CCHN) have both medical (eg, chronic conditions) and health-related social needs (eg, potentially adverse social determinants of health) that require ongoing health care and support from multiple community service providers. National standards developed for populations defined by health needs (CYSHCN) provide a framework for stakeholders to plan system-level improvements in care delivery for CCHN. but improvement efforts should reflect the priorities of their families and providers. This article describes a process of prioritizing system-level efforts to improve the health and well-being of CCHN and families in North Carolina (NC), using systematic stakeholder engagement and modified Delphi expert ratings. Methods: We surveyed stakeholders with experience caring for CCHN using an open-ended. 3-item instrument to identify opportunities to improve systems of care. Using directed qualitative content analysis, we synthesized responses into a master list of potential improvement topics. Using a modified Delphi approach, a 16-member advisory committee rated all topics for importance and urgency, on 9-point Likert scales over 2 rounds; then ratings for each topic were ranked (low, medium, high) to establish relative priority. Results: Forty seven individuals from 31 counties around NC provided survey responses, yielding 59 improvement topics in 10 domains. Through the modified Delphi method process, 21 topics (36%) received the highest rankings, largely representing access to community- and home-based services, equity, and enhancement of the pediatric workforce. Conclusions: Priorities identified by stakeholders will inform advocacy, policy, and improvement efforts. Next steps for the coalition include developing improvement projects to implement stakeholder-recommended actions for the highest-priority topics. [ABSTRACT FROM AUTHOR]

Context: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas.Objectives: To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition.Methods: Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis.Results: Sixty-four participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47).Conclusions: Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To identify gaps and opportunities in complex care training for pediatric residents. METHODS: Residents in an academic pediatric residency program were surveyed about: training experiences in complex care; self-entrustment in key clinical activities in complex care; educational strategies that would increase preparedness; and recommendations for curriculum development. We used descriptive statistics for quantitative data and content analysis for free-text responses. RESULTS: Of the 160 residents surveyed, 110 (69%) participated. Most participants reported prior clinical exposure to children with medical complexity (CMC; 106, 96%) during both inpatient (82, 75%) and outpatient (88, 80%) clinical rotations. Mean self-entrustment was at or below "somewhat confident" for all clinical activities in complex care, for residents in all postgraduate years. Clinical activities with highest reported self-entrustment included evaluating aspiration into the airway, nutritional issues, care coordination, and evaluating pain. Lowest self-entrustment was reported for facilitating transition to adult care, managing medical technologies, and safety/emergency planning. In terms of educational strategies, participants recommended inpatient encounters with an expert preceptor teaching about evaluating aspiration, pain/irritability and dysmotility (>50%); discussions with patients/families for advocacy, difficult discussions, and transition to adult care (>40%); and hands-on practice for medical technology care (>40%). CONCLUSIONS: Pediatric residents report limited self-entrustment in performing key clinical activities in complex care, including for residents at the end of their last postgraduate year. Future curriculum development should prioritize direct observation of clinical encounters with CMC by expert preceptors, partnership with patients and families of CMC, and hands-on simulation. [ABSTRACT FROM AUTHOR]

Background: People living with rare disease often have protracted journeys towards diagnosis. In the last decade, programs have arisen around the world that are dedicated to ending this 'diagnostic odyssey', including the Undiagnosed Diseases Program Western Australia (UDP-WA), which has a focus on finding diagnoses for children and young adults. To explore the lived experience of the diagnostic journey semi-structured interviews were conducted with parents of 11 children at commencement of their involvement in the UDP-WA.Results: Thematic analysis revealed three main themes that captured parents' experiences and perspectives. Parents reported (i) the need to respond to significant care needs of their children, which span not only the health system but other systems such as education and disability services. In doing so, parents become the navigator, expert and advocate for their children. Meanwhile, parents are on (ii) the diagnostic odyssey-the rollercoaster of their journey towards diagnosis, which includes various names applied to their child's condition, and the impact of no diagnosis. Parents described their views on (iii) the value of a diagnosis and the outcomes they expect to be associated with a diagnosis.Conclusion: Analysis showed an overall significant perceived value of a diagnosis. Our study provides new perspectives on the concept of diagnosis and indicates that parents may benefit from supports for their child's care needs that are beyond the scope of the UDP-WA. [ABSTRACT FROM AUTHOR]

Objective: Identify factors contributing to time a family spends in a Multidisciplinary Craniofacial Team Clinic (MDCT) and implement an intervention to reduce this time. Design: Interventional: a restructuring of clinics to serve those patients requiring fewer provider encounters separately. Setting: An American Cleft Palate-Craniofacial Association-accredited MDCT in an academic children's hospital. Patients/Participants: One hundred sixty-seven patients with craniofacial diagnoses. Interventions: Time data were tabulated over ∼2 years. Following 9 months of data collection, patients requiring fewer provider encounters were scheduled to a separate clinic serving children with craniosynostosis, and data were collected in the same fashion for another 14 months. Main Outcome Measures: Principal outcome measures included total visit time and proportion of the visit spent without a provider in the room before and after clinic restructuring. Results: The average time spent by family in a clinic session was 161.53 minutes, of which 64.3% was spent without a provider in the room. Prior to clinic restructuring, a greater number of provider encounters was inversely associated with percentage of time spent without a provider (P <.001). Upon identifying this predictor, scheduling patients who needed fewer provider encounters to a Craniosynostosis Clinic session resulted in reduction in absolute and percentage of time spent without a provider (P <.001). Conclusions: The number of provider encounters is a significant predictor of the proportion of a clinic visit spent without a provider. Clinic restructuring to remove patient visits that comprise fewer provider encounters resulted in a greater percentage of time spent with a provider in an MDCT. [ABSTRACT FROM AUTHOR]

• Family caregivers of persons living with dementia provide complex care and most caregivers do not receive training to provide this complex care. • The Learning Skills Together, a psychoeducation intervention was designed to build self-efficacy among family caregivers in providing complex care. • From interviews with family caregivers, we identified that were important to building caregiver self-efficacy including 'helpfulness of the content', 'if they can do it, so can I', and applying what I am learning'. • These themes map to elements (coaching and feedback, emotional state, modeling, and mastery) that are important to building self-efficacy. The purpose of this study was to describe how an intervention to teach family caregivers of persons living with dementia to provide complex care tasks contributes to their self-efficacy. This qualitative study was embedded in a pilot study evaluating the intervention. Semi-structured interviews were conducted with 15 caregivers who had completed the intervention. Content analysis was used to analyze the data. Themes identified from the interviews were: "helpfulness of the content" , " if they can do it, so can I ", and " applying what I have learned ". Caregivers described the helpfulness of learning from expert healthcare professionals in a supportive environment. They valued the group setting, including interacting with and learning from their peers. Caregivers demonstrated mastery of the content by applying it to their caregiving situations and sharing information with other family members. These findings provide insights into successful elements in a complex care intervention that contributed to building caregiver self-efficacy. [ABSTRACT FROM AUTHOR]

Introduction: A provincial strategy to expand care coordination and integration of care for children with medical complexity (CMC) was launched in Ontario, Canada in 2015. A process evaluation of the roll-out examined the processes, mechanisms of impact, and contextual factors affecting the implementation of the Complex Care for Kids Ontario (CCKO) intervention strategy. Methods: This process evaluation was conducted and analyzed according to the United Kingdom Medical Research Council (UK-MRC) process evaluation framework. To evaluate the implementation of the CCKO intervention, a multi-method study design was used, including semi-structured interviews with 38 key informants and 10 families of CMC involved in CCKO. To further understand implementation details across regional sites, provincial-level implementation plans, and process documents were reviewed. Discussion: Strengths of CCKO included novel collaborations and partnerships between complex care teams, community partners and regional sites. Issues relating to communication and coordination across care sectors created challenges to holistic care coordination objectives. Provincial system fragmentation limited the ability of CCKO to provide seamless care coordination due to the multiple care sectors involved. Conclusion: This study adds to the understanding of the processes involved in a population-level care coordination intervention for CMC. Lessons learned through CCKO can help facilitate reproducibility and necessary adjustments of the intervention in different settings. [ABSTRACT FROM AUTHOR]

Background: Ongoing developments in the medical field have improved survival rates and long-term management of children with complex chronic health conditions. While the number of children with medical complexity is small, they use a significant amount of health resources across various health settings and sectors. Research to date exploring this pediatric population has relied primarily on quantitative or qualitative data alone, leaving significant gaps in our understanding of this population. Objective: The objective of this research is to use health administrative and family-reported data to gain an in-depth understanding of patterns of health resource use and health care needs of children with medical complexity and their families in the Canadian Maritimes. Methods: An explanatory sequential mixed methods design will be used to achieve our research objective. Phase 1 of this research will leverage the use of health administrative data to examine the prevalence and health service use of children with medical complexity. Phase 2 will use case study methods to collect multiple sources of family-reported data to generate a greater understanding of their experiences, health resource use, and health care needs. Two cases will be developed in each of the 3 provinces. Cases will be developed through semistructured interviews with families and their health care providers and health resource journaling. Findings will be triangulated from phase 1 and 2 using a joint display table to visually depict the convergence and divergence between the quantitative and qualitative findings. This triangulation will result in a comprehensive and in-depth understanding into the population of children with medical complexity. Results: This study will be completed in May 2022. Findings from each phase of the research and integration of the two will be reported in full in 2022. Conclusions: There is a current disconnect between the Canadian health care system and the needs of children with medical complexity and their families. By combining health administrative and family-reported data, this study will unveil critical information about children with medical complexity and their families to more efficiently and effectively meet their health care needs. Results from this research will be the first step in designing patient-oriented health policies and programs to improve the health care experiences, health system use, and health outcomes of children with medical complexity and their families. International Registered Report Identifier (IRRID): DERR1-10.2196/33426 [ABSTRACT FROM AUTHOR]