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1.
Acad Pediatr ; 2024 Jun 10.
Article in English | MEDLINE | ID: mdl-38866363

ABSTRACT

OBJECTIVE: Children and youth with special health care needs (CYSHCN) require additional considerations for staying safe in emergencies. Our team of clinicians and preparedness professionals developed and tested a virtual home preparedness intervention (VHPI) in families with CYSHCN receiving care in a statewide medical home network. METHODS: The VHPI comprised 1) a pre/post interview covering fire safety, emergency evacuation, sheltering in place, and informing emergency responders of the child/youth's care needs; 2) a resource packet containing emergency planning templates and information on local supports; and 3) individualized referrals coordinated through the medical home/community partners. Eligible CYSHCN had medical technology reliance, physical/mobility needs, communication/intellectual challenges, and/or vision/hearing loss. Preparedness was measured as pre/post affirmed rates of 19 items from the interview and as mean composite scores of these items; associations were evaluated using generalized estimating equations-based regression for repeated measures. RESULTS: The pre and post-VHPI interviews were completed by 170 and 148 participants, respectively. Significant individual-item gains included having a current Emergency Information Form for the child/youth (31% [pre] to 47% [post] affirmed) and assembling an evacuation kit (50% to 68%). The mean preparedness score was 13.33/19 items affirmed at baseline and increased to 14.96 post-VHPI (P < .01). In the adjusted regression model, the post-intervention preparedness score remained significantly higher than pre-VHPI, with mean increases of 1.22 preparedness steps affirmed for homeowners and 1.85 for renters. CONCLUSIONS: Preparedness scores improved post-VHPI in families with CYSHCN. Future work should address incorporating the VHPI into care visits in the medical home.

2.
Pediatrics ; 153(6)2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38804066

ABSTRACT

With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as the medical-legal partnership model.


Subject(s)
Decision Making , Developmental Disabilities , Intellectual Disability , Transition to Adult Care , Humans , Developmental Disabilities/therapy , Adolescent , Intellectual Disability/therapy , Intellectual Disability/psychology , Child , Legal Guardians
3.
Pediatrics ; 153(Suppl 1)2024 Jan 01.
Article in English | MEDLINE | ID: mdl-38165240

ABSTRACT

In 2020, midway through the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity project, the coronavirus disease 2019 pandemic erupted and caused significant disruptions for the 10 participating state teams, the project leadership, and collaborative partner organizations. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing of children, families, and clinicians alike. We conducted a series of key informant interviews and surveys, alongside other process measures, to learn from state teams what it was like "on the ground" to try to continue improving care delivery, child quality of life, and family wellbeing under such upheaval. In this article, we synthesize qualitative and descriptive findings from these varied data sources within the framework of the trauma-informed principles we applied as a leadership team to prevent burnout, increase resilience, and maintain progress among all project participants, especially clinicians and the uniquely vulnerable family leaders. Lessons learned will be offered that can be applied to future natural and human-made emergencies that impact responsive pediatric care delivery improvement.


Subject(s)
Leadership , Quality Improvement , Humans , Child , Pandemics , Quality of Life , Anxiety
4.
Health Secur ; 21(3): 193-206, 2023.
Article in English | MEDLINE | ID: mdl-37195729

ABSTRACT

Children and youth with special healthcare needs (CYSHCN) are at disproportionate risk of harm from widespread disasters and from life-safety emergencies. These risks may be mitigated by providing preparedness training and support to family caregivers. We conducted a scoping review to identify and map the scholarly literature on home-focused preparedness of families with CYSHCN. Our search strategy yielded 22 relevant articles; 13 pertained to life-safety emergencies, 5 centered on widespread disasters, and 4 addressed preparedness on multiple scales. Approaches to measure or attempt to improve emergency preparedness levels in CYSHCN and their families were diverse and included interviews and focus groups; didactic, video-based, or side-by-side instruction; simulated medical crises; and provisioning of emergency kits. For the studies that involved an intervention (n=15, 68%), several proxy indicators of preparedness were used, including caregiver knowledge, skill, or comfort level with managing emergencies that could affect their CYSHCN; completion of preparedness tasks; and reduction in adverse clinical outcomes. Despite the varied methodologies, prevailing themes in the studies were that family caregivers of CYSHCN felt underprepared for emergencies and disasters, desired training to improve their preparedness at home, and benefited from such trainings, at least in the short term, across domains of self-efficacy, skill, and health outcomes of their CYSHCN. Although more research is needed to compare preparedness interventions and evaluate the durability of these interventions in larger, more diverse samples of CYSHCN and their families, our findings support incorporating preparedness training into preventive care encounters and the hospital-to-home transition.


Subject(s)
Civil Defense , Disaster Planning , Disasters , Child , Humans , Adolescent , Emergencies , Delivery of Health Care
5.
Matern Child Health J ; 27(6): 1097-1106, 2023 Jun.
Article in English | MEDLINE | ID: mdl-36988794

ABSTRACT

BACKGROUND AND OBJECTIVES: Children and youth with special health care needs (CYSHCN) commonly experience mental health concerns, but conditions are often not identified or treated within primary care. Mental health care is often not a primary focus of pediatric primary care, but the medical home model has potential to address these concerns more adequately. The purpose of this study is to examine the relationship between the medical home and use of mental health services in CYSHCN. METHODS: Data came from the Medical Expenditure Panel Survey years 2015-2017, a nationally representative survey of health and healthcare in US families. The study included CYSHCN ages 6-17. We compared the use of mental health services, expenditures, and psychotropic medications across CYSHCN with and without a medical home using multivariable regression. RESULTS: 45% of CYSHCN received care within a medical home. CYSHCN with and without a medical home reported similar frequency of office-based mental health visits (21.2% versus 25.2%), average expenditures for visits ($147 versus $128), and psychotropic medications (11.9% versus 15.1%). Medical home status was not associated with office-based mental health visits, use of psychotropic medications, or cost for either. CONCLUSIONS: CYSHCN with mental health care needs face barriers to satisfactory care. Creating better connections between primary and mental health care could help to ameliorate this problem. Findings suggest the medical home, a more comprehensive primary care model, may not address mental health care needs of CYSHCN.


Subject(s)
Disabled Children , Mental Health Services , Child , Humans , Adolescent , Comprehensive Health Care , Patient-Centered Care , Health Expenditures , Health Services Needs and Demand
6.
Hosp Pediatr ; 13(1): 47-54, 2023 01 01.
Article in English | MEDLINE | ID: mdl-36514893

ABSTRACT

OBJECTIVES: Postdischarge phone calls can identify discharge errors and gather information following hospital-to-home transitions. This study used the multisite Project IMPACT (Improving Pediatric Patient Centered Care Transitions) dataset to identify factors associated with postdischarge phone call attempt and connectivity. METHODS: This study included 0- to 18-year-old patients discharged from 4 sites between January 2014 and December 2017. We compared demographic and clinical factors between postdischarge call attempt and no-attempt and connectivity and no-connectivity subgroups and used mixed model logistic regression to identify significant independent predictors of call attempt and connectivity. RESULTS: Postdischarge calls were attempted for 5528 of 7725 (71.6%) discharges with successful connection for 3801 of 5528 (68.8%) calls. Connection rates varied significantly among sites (52% to 79%, P < .001). Age less than 30 days (P = .03; P = .01) and age 1 to 6 years (P = .04; P = .04) were independent positive predictors for both call attempt and connectivity, whereas English as preferred language (P < .001) and the chronic noncomplex clinical risk group (P = .02) were independent positive predictors for call attempt and connectivity, respectively. In contrast, readmission within 3 days (P = .004) and federal or state payor (P = .02) were negative independent predictors for call attempt and call connectivity, respectively. CONCLUSIONS: This study suggests that targeted interventions may improve postdischarge call attempt rates, such as investment in a reliable call model or improvement in interpreter use, and connectivity, such as enhanced population-based communication.


Subject(s)
Aftercare , Patient Discharge , Humans , Child , Infant , Child, Preschool , Infant, Newborn , Adolescent , Continuity of Patient Care , Patient Readmission , Telephone
7.
Health Secur ; 20(6): 467-478, 2022.
Article in English | MEDLINE | ID: mdl-36459634

ABSTRACT

Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania. The survey presented 3 scenarios (ie, storm, disease outbreak, radiation event); the interviews included questions about storms and an outbreak. This article addresses only the disease outbreak data from each set. Participants were recruited through convenience samples from an urban tertiary care children's hospital and practices in a statewide medical home network. In this article, we summarize the preferred information sources, channels, and content needs of caregivers of children and youth with special healthcare needs during an infectious disease emergency. Nearly 84% of caregivers reported that they believe their child's doctor is the best source of information. Other preferred sources include medical experts (31%); the US Centers for Disease Control and Prevention (30%); friends, family, and neighbors (21%); and local or state health and emergency management (17%). Pediatric healthcare providers play an important role in providing information to parents and caregivers of children and youth with special healthcare needs during an infectious disease emergency. Public health agencies can establish health communication plans that integrate medical practices and other reliable sources to promote the dissemination of accurate information from trusted messengers.


Subject(s)
Caregivers , Communicable Diseases , Adolescent , Young Adult , Child , Humans , Parents , Communication , Delivery of Health Care
8.
Matern Child Health J ; 26(Suppl 1): 121-128, 2022 Aug.
Article in English | MEDLINE | ID: mdl-35524927

ABSTRACT

INTRODUCTION: In light of persistent health inequities, this commentary describes the critical role of maternal and child health (MCH) graduate training in schools and programs of public health (SPPH) and illustrates linkages between key components of MCH pedagogy and practice to 2021 CEPH competencies. METHODS: In 2018, a small working group of faculty from the HRSA/MCHB-funded Centers of Excellence (COEs) was convened to define the unique contributions of MCH to SPPH and to develop a framework using an iterative and consensus-driven process. The working group met 5 times and feedback was integrated from the broader faculty across the 13 COEs. The framework was further revised based on input from the MCHB/HRSA-funded MCH Public Health Catalyst Programs and was presented to senior MCHB leaders in October 2019. RESULTS: We developed a framework that underscores the critical value of MCH to graduate training in public health and the alignment of core MCH training components with CEPH competencies, which are required of all SPPH for accreditation. This framework illustrates MCH contributions in education, research and evaluation, and practice, and underscores their collective foundation in the life course approach. CONCLUSIONS: This new framework aims to enhance training for the next generation of public health leaders. It is intended to guide new, emerging, and expanding SPPH that may currently offer little or no MCH content. The framework invites further iteration, adaptation and customization to the range of diverse and emerging public health programs across the nation.


Subject(s)
Education, Public Health Professional , Maternal-Child Health Centers , Child , Child Health , Humans , Leadership , Public Health/education
9.
Acad Pediatr ; 22(2S): S14-S21, 2022 03.
Article in English | MEDLINE | ID: mdl-35248243

ABSTRACT

Caregiving encompasses the nurturing, tasks, resources, and services that meet the day-to-day needs of children and youth with special health care needs (CYSHCN) at home. Many gaps exist in the strategies currently offered by the health care system to meet the caregiving needs of CYSHCN. The work of family caregivers of CYSHCN is known to be extensive, but it is so poorly understood that it has been described as "invisible". This invisibility leads to poor communication and gaps in understanding between professional health care providers and family caregivers. To address these gaps, health care researchers must work with family caregivers to incorporate their expertise on caregiving and create meaningful and sustainable research partnerships. A growing body of research is attempting to remedy the problem of caregiving invisibility and lay better foundations for successful integration between health care settings, family caregiving, professional caregiving, and community supports for families of CYSHCN. We identify high-priority gaps in CYSHCN caregiving research and propose research questions that are designed to accelerate growth in evidence-based understanding of the work of family caregivers of CYSHCN and how best to support them.


Subject(s)
Caregivers , Health Services Needs and Demand , Adolescent , Child , Family , Humans
10.
Implement Sci ; 17(1): 20, 2022 02 22.
Article in English | MEDLINE | ID: mdl-35193619

ABSTRACT

BACKGROUND: Implementation facilitation is an effective strategy to support the implementation of evidence-based practices (EBPs), but our understanding of multilevel strategies and the mechanisms of change within the "black box" of implementation facilitation is limited. This implementation trial seeks to disentangle and evaluate the effects of facilitation strategies that separately target the care team and leadership levels on implementation of a collaborative care model in pediatric primary care. Strategies targeting the provider care team (TEAM) should engage team-level mechanisms, and strategies targeting leaders (LEAD) should engage organizational mechanisms. METHODS: We will conduct a hybrid type 3 effectiveness-implementation trial in a 2 × 2 factorial design to evaluate the main and interactive effects of TEAM and LEAD and test for mediation and moderation of effects. Twenty-four pediatric primary care practices will receive standard REP training to implement Doctor-Office Collaborative Care (DOCC) and then be randomized to (1) Standard REP only, (2) TEAM, (3) LEAD, or (4) TEAM + LEAD. Implementation outcomes are DOCC service delivery and change in practice-level care management competencies. Clinical outcomes are child symptom severity and quality of life. DISCUSSION: This statewide trial is one of the first to test the unique and synergistic effects of implementation strategies targeting care teams and practice leadership. It will advance our knowledge of effective care team and practice-level implementation strategies and mechanisms of change. Findings will support efforts to improve common child behavioral health conditions by optimizing scale-up and sustainment of CCMs in a pediatric patient-centered medical home. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04946253 . Registered June 30, 2021.


Subject(s)
Patient-Centered Care , Quality of Life , Child , Clinical Trials, Phase III as Topic , Delivery of Health Care , Evidence-Based Practice , Humans , Patient Care Team , Randomized Controlled Trials as Topic
11.
Matern Child Health J ; 26(Suppl 1): 129-136, 2022 Aug.
Article in English | MEDLINE | ID: mdl-34982332

ABSTRACT

Maternal and child health (MCH), as a core sub-field of public health, continues to be an essential area in which additional workforce development and investment are needed. Recent public health workforce assessments in the United States reveal there will be a significant number of vacancies in MCH public health positions in the near future, creating the need for a well-trained and skilled public health MCH workforce. In order to address this potential critical workforce gap, the U.S. Department of Health and Human Services, Health Resources and Services Administration's Maternal and Child Health Bureau initiated the Maternal and Child Health Public Health Catalyst Program in 2015 to support the creation of MCH training programs in accredited schools of public health that previously did not have a MCH concentration. This article details the accomplishments and lessons learned from the first five MCH Catalyst Program grantees: Drexel University; Florida International University; Rutgers, The State University of New Jersey; Texas A&M University; and the University at Albany.


Subject(s)
Education, Public Health Professional , Public Health , Child , Child Health , Humans , Maternal-Child Health Centers , Public Health/education , Schools , United States
12.
Acad Pediatr ; 22(1): 116-124, 2022.
Article in English | MEDLINE | ID: mdl-34280478

ABSTRACT

OBJECTIVE: To evaluate family-reported caregiver experiences and health care utilization of patients enrolled in the Pennsylvania Medical Home Program (PA-MHP) statewide practice network and compare results to PA-MHP practices' Medical Home Index (MHI) scores. We hypothesized families enrolled in higher-scoring patient-and-family-centered medical homes (PCMH) on completed MHIs would report decreased caregiver burden and improved health care utilization. METHODS: We analyzed surveys completed by families receiving care coordination services in PA-MHP's network and each practice's mean MHI score. A total of 3221 caregivers completed surveys evaluating hours spent coordinating care/week, missed school/workdays, sick visits, and emergency department (ED) visits. A total of 222 providers from 54 participating PA-MHP practices completed the nationally recognized MHI. Family/practice demographics were collected. We developed multivariate logistic regression models assessing independent associations among family survey outcomes and corresponding practices' MHI scores. RESULTS: Families enrolled in high-scoring PCMHs had decreased odds of spending >1 h/wk coordinating care (odds ratio [OR] 0.82, adjusted OR [aOR]: 0.70, 95% confidence interval [CI] 0.55-0.90), missing workdays in the past 6 months (OR 0.82, aOR: 0.72, 95% CI 0.69-0.97), and ED visits in the past 12 months (OR 0.83, aOR: 0.81, 95% CI 0.65-0.99) in comparison to families enrolled in lower-scoring PCMHs. Families enrolled in higher-scoring PCMHs did not report fewer sick visits despite fewer ED visits, indicating more appropriate health care utilization. High-scoring PCMHs had lower percentages of publicly insured and low-income children. CONCLUSIONS: Higher-scoring PCMHs are associated with decreased caregiver burden and improved health care utilization across diverse PA practices. Future studies should evaluate interventions uniformly improving PCMH quality and equity.


Subject(s)
Caregiver Burden , Patient-Centered Care , Caregivers , Child , Emergency Service, Hospital , Humans , Patient Acceptance of Health Care
13.
J Pediatr Rehabil Med ; 14(4): 681-689, 2021.
Article in English | MEDLINE | ID: mdl-34897106

ABSTRACT

PURPOSE: The objective of this study was to describe the knowledge, attitudes, and practices related to caring for youth with SB within a statewide pediatric primary care medical home network. METHODS: Health care professionals who were members of the Pennsylvania Medical Home Program (PAMHP) statewide network were surveyed on sociological demographics, confidence in and knowledge of topics that impact the spina bifida (SB) population, education on SB, designating responsibility of care, tasks completed in the office, and transition from pediatric to adult care from October 2016 through November 2016. RESULTS: Among 67 respondents, 78%believed counseling families/caregivers about the impact of SB on everyday life was a shared responsibility between primary care physicians (PCP) and SB clinics. Eighty five percent of participants indicated they had exposure to SB through clinical courses or didactics in training but only 54%of participants felt knowledgeable on the impact of SB on everyday life. CONCLUSION: Findings suggest a need for increased educational efforts, improved awareness of SB, and access to evidence-based guidelines for PCPs to promote accessible and coordinated care to individuals with SB.


Subject(s)
Spinal Dysraphism , Transition to Adult Care , Adolescent , Adult , Caregivers , Child , Humans , Patient-Centered Care , Spinal Dysraphism/therapy , Surveys and Questionnaires
14.
Curr Opin Pediatr ; 33(6): 676-683, 2021 12 01.
Article in English | MEDLINE | ID: mdl-34734916

ABSTRACT

PURPOSE OF REVIEW: Metabolic bone disease of prematurity, commonly referred to as osteopenia of prematurity, remains prevalent in the neonatal intensive care unit (NICU) despite recent medical advances. It is estimated that up to 60% of extreme low birth weight and 20% of very low-birth-weight infants have metabolic bone disease of prematurity. Often silent, it typically presents with poor growth, increased ventilator dependency and fractures. Clinical sequalae, such as short stature can extend into young adulthood. There is no universal consensus by neonatal intensive care unit clinicians on the screening, diagnosis, or treatment for metabolic bone disease of prematurity. The disease is often diagnosed late by radiographs or incidentally in this highly fragile population. RECENT FINDINGS: Suggest screening using DEXA (dual-energy X-ray absorptiometry) scans or ultrasound, in combination with serum markers like alkaline phosphatase, phosphorous levels, parathyroid hormone, and tubular reabsorption of phosphate, might identify at-risk babies earlier. The use of protocol-based screenings may aid in early diagnosis. SUMMARY: We present a review of the risk factors, recent screening methods, diagnosis and management of this prevalent, clinically relevant diagnosis, as well as propose a protocol for the early screening and management of this silent disease.


Subject(s)
Bone Diseases, Metabolic , Infant, Premature, Diseases , Adult , Bone Diseases, Metabolic/diagnosis , Bone Diseases, Metabolic/therapy , Humans , Infant , Infant, Newborn , Infant, Premature , Infant, Very Low Birth Weight , Intensive Care Units, Neonatal , Young Adult
15.
Matern Child Health J ; 25(12): 1992-2001, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34652597

ABSTRACT

OBJECTIVES: The caregiving experiences and unique health needs of male caregivers of children and youth with special health care needs (CYSHCN) are not well described. This study seeks to understand potential unmet health needs and attitudes toward supportive resources from the perspective of a sample of male caregivers of CYSHCN. METHODS: This mixed-methods study recruited a convenience sample of 30 men with CYSHCN who receive care for a chronic medical condition from primary care medical homes in Pennsylvania. We conducted semi-structured interviews (SSI), administered quantitative surveys to caregivers, and produced a thematic analysis. The SSI explored the health needs of male caregivers, assessed attitudes toward and preferences regarding supportive resources, and garnered their advice to other caregivers regarding parenting and health care system navigation. RESULTS: Participants' median age is 41 years (IQR: 33, 44), and most (80%) reside full time with their CYSHCN. Most male caregivers deprioritized their own emotional, mental, and physical health needs to support the needs of their families. Many male caregivers articulated interest in seeking emotionally supportive resources (not time-intensive). They advised other male caregivers to remain involved in the medical care and wellbeing of their CYSCHN and to openly seek and receive emotional support despite the daily challenges they face. CONCLUSIONS FOR PRACTICE: Male caregivers of CYSHCN experience intense daily stress and express the need for emotionally supportive resources. Programs designed to facilitate such support may benefit from flexible formats (time and location) and involve male caregivers of CYSHCN as both facilitators and participants.


Subject(s)
Caregivers , Child Health Services , Adolescent , Child , Chronic Disease , Health Services Needs and Demand , Humans , Male , Social Support , Surveys and Questionnaires
16.
Curr Opin Pediatr ; 33(3): 331-341, 2021 06 01.
Article in English | MEDLINE | ID: mdl-33797463

ABSTRACT

PURPOSE OF REVIEW: Postpartum depression (PPD) negatively impacts caregivers, infants, siblings, and entire families. Mothers with infants admitted to the neonatal intensive care unit (NICU) face additional risk for PPD, coupled with risk factors extending beyond a NICU admision. The novelty of this review is the focus on maternal PPD for mothers with infants admitted to the NICU. Interventions aimed at limiting and preventing PPD in this population include: prenatal and postpartum depression screening, PPD symptom awareness and monitoring, and trauma-informed care. RECENT FINDINGS: PPD, the most frequent complication of childbirth, affects approximately 10-15% of mothers worldwide. Prevalence rates increase to 40% for mothers whose infant is admitted to the NICU. PPD can affect maternal and child health across the life course and predispose future generations to a myriad of developmental, psychosocial, and physical challenges. Prevalence rates are higher for racial and ethnic minorities, immigrant and refugee populations, and mothers in rural locations. Trauma-informed care is suggested at individual and organizational levels, leading to better care for those with and without previous trauma exposure. SUMMARY: Increasing PPD symptom awareness, screening for PPD, and connections with resources should begin during prenatal visits. Care teams should discuss barriers to resources for mothers, children, and families to improve access and support.


Subject(s)
Depression, Postpartum , Refugees , Child , Depression, Postpartum/diagnosis , Depression, Postpartum/epidemiology , Female , Humans , Infant , Infant, Newborn , Intensive Care Units, Neonatal , Mothers , Pregnancy , Risk Factors
17.
Matern Child Health J ; 25(7): 1156-1163, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33914226

ABSTRACT

OBJECTIVES: A medical home is a model of patient-centered, comprehensive care recommended by the American Academy of Pediatrics for all children. The aims of this study were (1) to determine if the presence of a medical home is associated with improved health service outcomes of children with autism, and (2) to determine if the presence of a medical home is associated with improved key functional outcomes in children with autism. METHODS: This study used data from the 2016-2017 National Survey of Children's Health. We used a medical home construct of 14 survey questions as the main independent variable in logistic regression models estimating cross-sectional association, and also evaluated the interaction between medical home and demographic and household characteristics, including race, income, household composition, and autism severity in regression for outcomes. RESULTS: Overall, the presence of a medical home was associated with increased parent reporting of shared health care decision-making, receipt of preventive pediatric care, and reduced frustration in accessing services. Some functional outcomes were also positively associated with the presences of a medical home in children with parent-reported mild autism symptoms; children who had a medical home visited the ED less often than children without a medical home. This did not persist for children with moderate or severe parent-rated autism. CONCLUSIONS FOR PRACTICE: Based on parent-reported, cross-sectional data from a large, nationally representative sample of families with a child with autism, the presence of a medical home was positively associated with some improved health services and functional outcomes.


Subject(s)
Autistic Disorder , Child Health Services , Autistic Disorder/therapy , Child , Child Welfare , Cross-Sectional Studies , Humans , Patient-Centered Care , United States
18.
Health Expect ; 24 Suppl 1: 161-173, 2021 05.
Article in English | MEDLINE | ID: mdl-32671916

ABSTRACT

BACKGROUND: People with SMI have often been excluded in advocacy efforts focused on physical health, health care and health and social policy. OBJECTIVE: Following a Photovoice project focused on barriers to healthy eating and physical activity in urban neighbourhoods, participant-researchers were invited to present their insights in community advocacy settings. The purpose of this study was to explore the feasibility and participant-researchers' experience of these community advocacy activities. DESIGN: We held four focus groups with the eight participant-researchers after each community advocacy activity to explore their experience with public speaking, presenting their experiences and advocating. SETTING AND PARTICIPANTS: People with serious mental illness who were overweight/obese living in supportive housing. ANALYSIS APPROACH: Qualitative analysis of the focus group transcripts, using a modified grounded theory approach followed by structured coding focused on empowerment, participation and non-discrimination. RESULTS: Participant-researchers gave three oral presentations of their photographs at a variety of community-based programmes and settings and participated in a rally to advocate for SNAP benefits. Two themes emerged from analysis: (a) Empowerment (the level of choice, influence and control that users of mental health services can exercise over events in their lives) and (b) Barriers to Empowerment (obstacles to participation and well-being). CONCLUSIONS: This evaluation strengthens the evidence that it is feasible for participant-researchers in Photovoice projects to engage in robust advocacy activities, such as presentations and discussions with local policymakers. During focus groups, participant-researchers demonstrated realistic optimism towards their roles as change agents and influencers in spite of acknowledged systemic barriers.


Subject(s)
Disabled Persons , Social Justice , Exercise , Focus Groups , Humans , Obesity
19.
Curr Opin Pediatr ; 32(5): 674-682, 2020 10.
Article in English | MEDLINE | ID: mdl-32889962

ABSTRACT

PURPOSE OF REVIEW: The purpose of this review is to describe the role, responsibilities, hiring, training, and retention of community health workers (CHWs) on clinical care teams in the United States. RECENT FINDINGS: CHWs are unique members of clinical care teams because of their ability to foster a deep trust and understanding with patients by sharing similar life experiences, participating in home visits, and providing constant support and advocacy. By partnering with CHWs, other clinical care members also gain a better understanding of their patients allowing them to deliver more culturally competent, patient/family-centered care. CHWs when incorporated into interdisciplinary teams have shown to lower healthcare costs, reduce hospital stays and admissions, and improve health outcomes and quality of life for children and families. However, the lack of standardization among CHW programs makes it difficult to quantify the overall effect and impact of integrating CHWs into clinical care teams. SUMMARY: CHWs are able to improve health outcomes and address social determinants of health when properly integrated into clinical care teams. However, without adequate support, integration, funding, and training, CHWs are not able to reach their full potential. The standardization of CHWs' responsibilities and training, like other clinical care team members, is lacking within the United States, making it a challenge to evaluate programs and maintain sustainable funding for these vital members of the clinical care team.


Subject(s)
Community Health Workers , Delivery of Health Care , Population Health , Child , Humans , Quality of Life , United States
20.
Clin Pediatr (Phila) ; 59(13): 1161-1168, 2020 11.
Article in English | MEDLINE | ID: mdl-32672059

ABSTRACT

Care coordination (CC) facilitates access to resources/services for children/youth with special health care needs (CYSHCN). We conducted a cross-sectional analysis of the 2009-2010 National Survey of CSHCN to examine socioeconomic factors related to report of receiving adequate CC services for CYSHCN. Descriptive statistics were used to describe sociodemographic characteristics of respondents and examine socioeconomic factors. Receiving adequate CC varied by socioeconomic variables including income (100% to 199% federal poverty line [FPL]; aOR [adjusted odds ratio] = 0.848; 95% CI [confidence interval] = 0.722-0.997; P < .05), insurance (uninsured; aOR = 0.446; 95% CI = 0.326-0.609; P < .0001), and marital status (never married; aOR = 0.79; 95% CI = 0.64-0.97; P < .05). More families reporting adequate CC had private insurance, non-Hispanic white ethnicity, income >400% federal poverty level, and 2-parent households. Findings suggest unmet needs in terms of adequate access or knowledge leading to insufficient provision of CC for families with the greatest needs. Further analysis identifying specific deficits and implementing strategies to address these disparities is warranted.


Subject(s)
Disabled Children/statistics & numerical data , Health Care Surveys/statistics & numerical data , Health Services Accessibility/statistics & numerical data , Health Services Needs and Demand/statistics & numerical data , Social Determinants of Health/statistics & numerical data , Adolescent , Child , Child Health Services , Cross-Sectional Studies , Female , Health Care Surveys/methods , Humans , Insurance, Health/statistics & numerical data , Male , Medically Uninsured/statistics & numerical data , Needs Assessment/statistics & numerical data , Poverty/statistics & numerical data , Socioeconomic Factors , United States
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