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Bogetz J, Ayala E, Anderson J, Morris L, Barton KS, Bradford MC, Zhou C, Yi-Frazier J, Watson RS, Rosenberg AR. A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU. Contemp Clin Trials Commun 2025; 44:101455. [PMID: 40034723 PMCID: PMC11872557 DOI: 10.1016/j.conctc.2025.101455] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/24/2024] [Revised: 01/23/2025] [Accepted: 02/10/2025] [Indexed: 03/05/2025] Open
Abstract
Background Children with severe neurological impairment (SNI) have central nervous system conditions that result in medical complexity and lifelong caregiver assistance. When children with SNI are admitted to the pediatric intensive care unit (PICU), their parents/families may experience elevated stress due to poor communication with clinicians. Methods To address this, we created a photo-narrative intervention designed to facilitate parent-clinician communication. The intervention asks parents/families to share 3 photos with captions that inform clinicians about their child's well-being and quality-of-life. The steps include: 1) learning about photo-narratives; 2) deciding on a story; 3) selecting photos; and 4) identifying the broader context. Clinicians receive a companion guide on how to use the photo-narrative. In this pilot randomized controlled trial, N = 40 parent/family caregivers of children with SNI and their child's PICU clinicians will be randomized to receive the photo-narrative intervention or usual care. Participants will complete study surveys at enrollment and the child's PICU discharge; intervention-arm participants will also complete semi-structured interviews at discharge. The primary aim is to describe: 1) feasibility, assessed by the recruitment (approached/enrolled) and completion (intervention completion/intervention-arm) rates; and 2) acceptability (recommend the intervention/intervention-arm). We also will evaluate proof of concept by comparing changes in parent self-reported stress, perceptions of therapeutic alliance, and effects on stigma, resilience, benefit-finding, and respect as well as clinician self-reported empathy and perspective-taking. Discussion This study will evaluate the feasibility and acceptability of a novel photo-narrative intervention designed to improve caregiver stress and communication. Findings will guide the development of future multisite studies. Clinical trial registration NCT06208332.
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Affiliation(s)
- Jori Bogetz
- Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center for Clinical and Translational Research, Seattle Children's Research Institute, United States
| | - Elsa Ayala
- Treuman Katz Center for Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, United States
| | - Jordan Anderson
- Pediatric Intensive Care Unit, Seattle Children's Hospital, United States
| | - Liz Morris
- Family & Caregiver Collaborator, Courageous Parents Network, United States
| | - Krysta S. Barton
- Stanford Center for Biomedical Ethics, Stanford University School of Medicine, United States
| | - Miranda C. Bradford
- Biostatistics, Epidemiology and Analytics in Research (BEAR) Core, Seattle Children's Research Institute, United States
| | - Chuan Zhou
- Division of General Pediatrics, Department of Pediatrics, University of Washington School of Medicine, Center for Child Health, Behavior, and Development, Seattle Children's Research Institute, United States
| | - Joyce Yi-Frazier
- Division of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Palliative Care and Resilience Lab, Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, United States
| | - R. Scott Watson
- Division of Critical Care, Department of Pediatrics, University of Washington School of Medicine, United States
| | - Abby R. Rosenberg
- Division of Pediatric Palliative Care, Department of Supportive Oncology, Dana Farber Cancer Institute, Department of Pediatrics, Boston Children's Hospital, Harvard Medical School, United States
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Haspels HN, Knoester H, Jansen NJG, Ahout IML, van Karnebeek CD, de Hoog M, vanWoensel JBM, Joosten KFM. Hospital to home transition of children with medical complexities in the Netherlands: current practice. Eur J Pediatr 2025; 184:122. [PMID: 39779542 PMCID: PMC11711838 DOI: 10.1007/s00431-024-05960-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/12/2024] [Revised: 12/11/2024] [Accepted: 12/28/2024] [Indexed: 01/11/2025]
Abstract
Children with Medical Complexity (CMC) often require 24/7 expert care, which may impede discharge from hospital to home (H2H) resulting in prolonged admission. Limited research exists on pediatric patients with delayed discharges and the underlying reasons for such extended admissions. Therefore, our objectives were to (1) describe the demographics, clinical characteristics, and course of CMC who are in their H2H transition and (2) identify the reasons for postponement of H2H discharge. Prospective, multicenter, observational cohort study performed from February 2022 until November 2022 for 6 months in four Dutch University Medical Center children's hospitals. Clinically admitted patients (age 0-18 years) were eligible for inclusion if they were medically stable, yet required specialized nursing and/or paramedical care and were in the H2H transition process. In total, 44 participants were included, of whom 32 (72.7%) were younger than 1 year. Median stay in the hospital was 7.3 weeks (range 0.7-28.7). Upon entering the H2H phase, postponement of discharge was for 65.1% of the patients primarily due to a combination of medical reasons and organizational/family factors. For the remaining 34.9% of the patients, discharge was delayed solely due to organizational and/or family factors. CONCLUSION : Our study highlights several reasons contributing to the postponement of discharge for pediatric patients with medical complexity, including their medical fragility, the time-consuming process of parent training, and the challenges in organizing home care. Future steps should explore various transitional care programs aimed at improving the H2H transition. What is Known: • Hospital to home transition for Children with Medical Complexity is a multi-faceted process with many challenges and obstacles • Insight into the current practice of transitioning home in University Medical Centers remains unknown and is needed to develop a tailored yet standardized approach What is New: • Our findings reveal reasons for postponement of discharge home and show that patients are medically stable for more than half of their hospital stays. This indicates potential opportunities to reorganize care for better outcomes for the child, the family, and healthcare consumption.
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Affiliation(s)
- H N Haspels
- Department of Pediatric Intensive Care, Amsterdam UMC Location University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands
- Amsterdam Reproduction & Development Research Institute, Amsterdam, The Netherlands
- Department of Neonatal & Pediatric Intensive Care, Division of Pediatric Intensive Care, Erasmus Medical Center - Sophia Children's Hospital, Rotterdam, The Netherlands
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
| | - H Knoester
- Department of Pediatric Intensive Care, Amsterdam UMC Location University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
| | - N J G Jansen
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
- Department of Pediatrics, University Medical Center Groningen, Beatrix Children's Hospital, Groningen, The Netherlands
| | - I M L Ahout
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
- Department of Pediatrics, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands
| | - C D van Karnebeek
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
- Departments of Pediatrics and Human Genetics, Emma Center for Personalized Medicine, Amsterdam Reproduction and Development, Amsterdam UMC Location University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands
| | - M de Hoog
- Department of Neonatal & Pediatric Intensive Care, Division of Pediatric Intensive Care, Erasmus Medical Center - Sophia Children's Hospital, Rotterdam, The Netherlands
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
| | - J B M vanWoensel
- Department of Pediatric Intensive Care, Amsterdam UMC Location University of Amsterdam, Meibergdreef 9, Amsterdam, The Netherlands
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands
| | - K F M Joosten
- Department of Neonatal & Pediatric Intensive Care, Division of Pediatric Intensive Care, Erasmus Medical Center - Sophia Children's Hospital, Rotterdam, The Netherlands.
- On Behalf of the Transitional Care Unit Consortium, Amsterdam, The Netherlands.
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3
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Vo HH, Keegan D, Sveen WN, Wilfond BS, Campelia G, Henderson CM. Candidacy Decisions for Long-term Ventilation. Pediatrics 2024; 154:e2024066985. [PMID: 39501761 PMCID: PMC11614155 DOI: 10.1542/peds.2024-066985] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/10/2024] [Revised: 09/20/2024] [Accepted: 09/23/2024] [Indexed: 12/02/2024] Open
Abstract
Decisions to initiate long-term ventilation (LTV) in children with severe neurologic impairment have recently been subject to candidacy determinations by home ventilation teams that exclude patients based on their neurologic status alone. Determinations of whether decisions are inappropriate require careful analysis of specific clinical circumstances and attention to the family's values. In this Ethics Rounds, we present a case of a previously healthy child who sustained an acute severe anoxic brain injury and was assessed by the medical team to have a high likelihood of remaining minimally conscious or unconscious. It was determined that he was not a candidate for LTV based on the severity of neurologic impairment. The family disagreed and declined withdrawal of ventilatory support. Drawing upon our backgrounds in intensive care, pulmonology, and bioethics, we offer commentary on utilizing a candidacy-based approach for LTV decisions in children with severe neurologic impairment from variable perspectives, including clinical determinations of inappropriate care, ablest biases and discrimination, and obligations to maintain a just process.
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Affiliation(s)
- Holly Hoa Vo
- Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington
- Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children’s Research Institute, Seattle, Washington
| | - Duncan Keegan
- Division of Pulmonary Medicine, Department of Pediatrics and Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio
| | - William N. Sveen
- Division of Critical Care Medicine, Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota
| | - Benjamin S. Wilfond
- Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington
- Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children’s Research Institute, Seattle, Washington
| | - Georgina Campelia
- Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children’s Research Institute, Seattle, Washington
- Department of Bioethics and Humanities, Ethics Consultation Service, University of Washington, Seattle, Washington
| | - Carrie M. Henderson
- Division of Critical Care Medicine, Department of Pediatrics, Louisiana State University School of Medicine and Children’s Hospital of New Orleans, New Orleans, Louisiana
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Maniaci J, Kearney MD, DeMauro SB, Panitch H. Lived experiences of caregivers with infants treated at home with continuous invasive or noninvasive ventilation. Pediatr Pulmonol 2024; 59:2543-2552. [PMID: 38751012 DOI: 10.1002/ppul.27063] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/02/2024] [Revised: 04/08/2024] [Accepted: 05/07/2024] [Indexed: 11/18/2024]
Abstract
RATIONALE Caring for children dependent upon continuous invasive ventilation in the home setting requires extensive expertise, coordination, and can result in impaired caregiver quality of life. Less is known regarding the experiences of caregivers with children requiring continuous noninvasive ventilation. OBJECTIVES To evaluate caregiver experiences with invasive and noninvasive home mechanical ventilation, and to compare parental quality of life based on the child's mode of ventilation. METHODS Caregivers of infants who were discharged home with continuous ventilatory support were recruited to complete semi-structured qualitative interviews. Interviews explored their decision-making process, the transition to home, and health related quality of life. RESULTS Caregivers of 16 children were interviewed, of whom eight were treated with continuous invasive ventilation, and eight with continuous noninvasive ventilation. The decision to pursue home ventilation in both groups was greatly influenced by the desire to be discharged and reunite the family at home. Following the transition to home, caregivers from both groups described high rates of insomnia, emotional distress, work disruption and familial hardship. Despite this, parents were overwhelmingly pleased with the decision to proceed with home ventilation and perceived their children to be living enriched lives outside of the hospital. Factors associated with easing the transition to home were in-hospital training and the presence of a robust support system. CONCLUSIONS Lives of families with children dependent on continuous mechanical ventilation are characterized by isolation, lifestyle disruption, adverse mental and physical health consequences, and impaired interpersonal relationships, irrespective of the mode of ventilation.
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Affiliation(s)
- Jon Maniaci
- Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
| | - Matthew D Kearney
- Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA
| | - Sara B DeMauro
- Division of Neonatology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
| | - Howard Panitch
- Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
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Moore C, Adams S, Beatty M, Dharmaraj B, Desai AD, Bartlett L, Culbert E, Cohen E, Stinson JN, Orkin J. Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC. Pediatrics 2024; 154:e2024065884. [PMID: 39188252 DOI: 10.1542/peds.2024-065884] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/18/2024] [Revised: 06/10/2024] [Accepted: 06/12/2024] [Indexed: 08/28/2024] Open
Abstract
BACKGROUND AND OBJECTIVES Care plans summarize a child with medical complexity's (CMC) medical history and ongoing care needs. Often, the health care team controls the care plan content, limiting caregivers' ability to edit the document in real time and potentially compromising accuracy and utility. With this study, we aimed to provide caregivers of CMC with online access and shared editing control of their child's care plan and to explore the experiences of caregivers and care team members (CTMs) after using an online collaborative care plan (OCCP). METHODS Caregivers of CMC were recruited from a tertiary complex care program to use an online, patient-facing platform for 6 months, which included the ability to edit and share their child's care plan. Caregivers and CTMs participated in semi-structured interviews to explore their experiences in using the OCCP. Consistent with grounded theory methodology, a constant comparative analysis was used, which allowed for theoretical sampling and theory generation. RESULTS A total of 15 caregivers and 20 CTMs completed interviews. Interviews revealed 3 major themes and 9 subthemes, including (1) the navigation of uncharted roles (trust, responsibility), (2) the requirements for success (electronic medical record integration, online access, collaborative care plan review), and (3) cohesive care (accessibility and convenience, being on the same page, autonomy). Themes informed the creation of a theoretical model for the implementation and utility of OCCPs. CONCLUSIONS Online, collaborative care plans, when implemented safely and thoughtfully, promote shared understanding, improve caregiver autonomy, and increase the accessibility of health information. Together, these benefits facilitate cohesive care and authentic partnership between caregivers and CTMs in the care of CMC.
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Affiliation(s)
| | - Sherri Adams
- SickKids Research Institute
- Division of Pediatric Medicine
- Lawrence S Bloomberg Faculty of Nursing
| | - Madison Beatty
- SickKids Research Institute
- Division of Pediatric Medicine
| | | | - Arti D Desai
- University of Washington School of Medicine, Seattle, Washington
| | - Leah Bartlett
- Royal Victoria Regional Health Centre, Barrie, Canada
| | | | - Eyal Cohen
- SickKids Research Institute
- Division of Pediatric Medicine
- Department of Pediatrics, University of Toronto, Toronto, Canada
| | - Jennifer N Stinson
- SickKids Research Institute
- Department of Anesthesia and Pain Medicine, SickKids, Toronto, Canada
- Lawrence S Bloomberg Faculty of Nursing
| | - Julia Orkin
- SickKids Research Institute
- Division of Pediatric Medicine
- Department of Pediatrics, University of Toronto, Toronto, Canada
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Cecil CA, Dziorny AC, Hall M, Kane JM, Kohne J, Olszewski AE, Rogerson CM, Slain KN, Toomey V, Goodman DM, Heneghan JA. Low-Resource Hospital Days for Children Following New Tracheostomy. Pediatrics 2024; 154:e2023064920. [PMID: 39113630 DOI: 10.1542/peds.2023-064920] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/05/2023] [Revised: 05/30/2024] [Accepted: 05/31/2024] [Indexed: 09/02/2024] Open
Abstract
BACKGROUND AND OBJECTIVES Children with new tracheostomy and invasive mechanical ventilation (IMV) require transitional care involving caregiver education and nursing support. To better understand hospital resource use during this transition, our study aimed to: (1) define and characterize low-resource days (LRDs) for this population and (2) identify factors associated with LRD occurrence. METHODS This retrospective cohort analysis included children ≤21 years with new tracheostomy and IMV dependence admitted to an ICU from 2017 to 2022 using the Pediatric Health Information System database. A LRD was defined as a post tracheostomy day that accrued nonroom charges <10% of each patient's accrued nonroom charges on postoperative day 1. Factors associated with LRDs were analyzed using negative binomial regression. RESULTS Among 4048 children, median post tracheostomy stay was 69 days (interquartile range 34-127.5). LRDs were common: 38.6% and 16.4% experienced ≥1 and ≥7 LRDs, respectively. Younger age at tracheostomy (0-7 days rate ratio [RR] 2.42 [1.67-3.51]; 8-28 days RR 1.8 (1.2-2.69) versus 29-365 days; Asian race (RR 1.5 [1.04-2.16]); early tracheostomy (0-7 days RR 1.56 [1.2-2.04]), and longer post tracheostomy hospitalizations (31-60 days RR 1.85 [1.44-2.36]; 61-90 days RR 2.14 [1.58-2.91]; >90 days RR 2.21 [1.71-2.86]) were associated with more LRDs. CONCLUSIONS Approximately 1 in 6 children experienced ≥7 LRDs. Younger age, early tracheostomy, Asian race, and longer hospital stays were associated with increased risk of LRDs. Understanding the postacute phase, including bed utilization, serves as an archetype to explore care models for children with IMV dependence.
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Affiliation(s)
- Cara A Cecil
- Ann and Robert H. Lurie Children's Hospital of Chicago; Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Adam C Dziorny
- School of Medicine, University of Rochester Medical Center, Rochester, New York
| | - Matt Hall
- Children's Hospital Association, Lenexa, Kansas
| | - Jason M Kane
- Pritzker School of Medicine, University of Chicago Comer Children's Hospital, Chicago, Illinois
| | - Joseph Kohne
- CS Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan
| | - Aleksandra E Olszewski
- Ann and Robert H. Lurie Children's Hospital of Chicago; Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Colin M Rogerson
- Division of Critical Care, Department of Pediatrics, Indiana University, Indianapolis, Indiana
| | - Katherine N Slain
- University Hospitals Rainbow Babies and Children's Hospital, Cleveland, Ohio
| | - Vanessa Toomey
- Children's Hospital Los Angeles; University of Southern California Keck School of Medicine, Los Angeles, California
| | - Denise M Goodman
- Ann and Robert H. Lurie Children's Hospital of Chicago; Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Julia A Heneghan
- University of Minnesota Masonic Children's Hospital, University of Minnesota, Minneapolis, Minnesota
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7
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Bogetz JF, Oslin E, O’Donnell M, Barton KS, Yi-Frazier JP, Watson RS, Rosenberg AR. Meaning-Making Among Parents of Children With Severe Neurologic Impairment in the PICU. Pediatrics 2024; 153:e2023064361. [PMID: 38529567 PMCID: PMC10979294 DOI: 10.1542/peds.2023-064361] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 01/24/2024] [Indexed: 03/27/2024] Open
Abstract
BACKGROUND AND OBJECTIVES Parents and family caregivers of children with severe neurologic impairment (SNI) experience many stressors, especially during their child's critical illness. This study aimed to examine parent experiences around the time of their child's PICU care to explore ways parents make meaning in relation to these stressors. METHODS This qualitative study of data from a single center in the United States followed Consolidated Criteria for Reporting Qualitative Research guidelines. One to one semistructured interviews queried parents' psychosocial well-being around the time of their child's PICU care. Eligible participants had a child with an SNI condition for >3 months admitted to the PICU for >24 hours with an expected length of stay >1 week. RESULTS Data were analyzed by a research team with expertise in palliative care, psychology, critical care, and qualitative methods. Fifteen family caregivers of 15 children participated. Children were a median of 8 years old (interquartile range 4-11.5) and 80% (n = 12) had congenital/genetic conditions. Parent/family caregivers were a median age of 39 years old (interquartile range 36-42.5); 20% (n = 3) self-identified as fathers and 47% (n = 7) as having to a minority racial background. Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child. CONCLUSIONS Meaning-making may be an opportunity for support in the PICU among parents/family caregivers of children with SNI.
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Affiliation(s)
- Jori F. Bogetz
- Divisions of Bioethics and Palliative Care
- Treuman Katz Center for Bioethics
| | | | | | - Krysta S. Barton
- Biostatistics Epidemiology and Analytics for Research (BEAR) Core, Seattle Children’s Research Institute; Seattle, Washington
| | | | - R. Scott Watson
- Division of Critical Care, Department of Pediatrics, University of Washington School of Medicine; Seattle, Washington
| | - Abby R. Rosenberg
- Division of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute; Department of Pediatrics, Boston Children’s Hospital; Department of Pediatrics, Harvard Medical School; Boston, Massachusetts
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Bogetz JF, Yu J, Oslin E, Barton KS, Yi-Frazier JP, Watson RS, Rosenberg AR. Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment. J Pain Symptom Manage 2023; 66:647-655. [PMID: 37666370 PMCID: PMC10841251 DOI: 10.1016/j.jpainsymman.2023.08.025] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/05/2023] [Revised: 08/23/2023] [Accepted: 08/29/2023] [Indexed: 09/06/2023]
Abstract
CONTEXT Children with severe neurological impairment (SNI) make up nearly 50% of pediatric intensive care unit (PICU) admissions, yet little is known about their family caregiver experiences. OBJECTIVE To examine how parents and family caregivers of children with SNI navigate stress during PICU admissions. METHODS This qualitative single-center study used content and thematic networks analysis to evaluate data from 1:1 semistructured interviews conducted around the time of PICU discharge with parents and family caregivers of children with SNI to examine ways they navigate stress. Proportions of participants reporting each theme and subtheme were calculated. RESULTS Fifteen parents/family caregivers of 15 children with SNI participated. Children were a median of 8 years old (range 1-21 years) and the majority had congenital/chromosomal conditions leading to their neurologic condition (80%, n = 12). 20% of participants were fathers (n = 3) and 45% (n = 7) reported identifying as having a minority racial background. Themes included 1) self-activation, and 2) letting go and the majority (80%, n = 12) of parents reported using both self-activation and letting go strategies. Within each of these themes, 5 subthemes illustrated ways parents navigate stress. The most reported subthemes were advocating and showing up (53%, n = 8) and being supported by compassionate clinicians (67%, n = 10). Themes/subthemes were used to create recommended language to guide clinicians in supporting parents. CONCLUSION Parents and family caregivers of children with SNI employ various ways to navigate stress in the PICU. Themes from this study can be used to develop interventions that meet the psychosocial needs of parents and family caregivers of children with SNI during highly stressful times.
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Affiliation(s)
- Jori F Bogetz
- Division of Bioethics and Palliative Care, Department of Pediatrics (J.B.), University of Washington School of Medicine; Treuman Katz Center for Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington, USA.
| | - Justin Yu
- Divisions of Pediatric Palliative and Supportive Care and Hospital Medicine (J.Y.), University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA
| | - Ellie Oslin
- Treuman Katz Center for Bioethics, Center for Clinical and Translational Research (E.O.), Seattle Children's Research Institute, Seattle, Washington, USA
| | - Krysta S Barton
- Palliative Care and Resilience Lab, Biostatistics Epidemiology and Analytics for Research (BEAR) Core, Seattle Children's Research Institute (K. S. B.), Seattle, Washington, USA
| | - Joyce P Yi-Frazier
- Center for Clinical and Translational Research (J.P.Y-.F.), Seattle Children's Research Institute, Seattle, Washington, USA
| | - Robert Scott Watson
- Division of Critical Care, Department of Pediatrics (R.S.W.), University of Washington School of Medicine, Seattle, Washington, USA
| | - Abby R Rosenberg
- Division of Psychosocial Oncology and Palliative Care(A.R.S.), Dana Farber Cancer Institute; Palliative Care and Resilience Lab, Boston Children's Hospital, Boston, Massachusetts, USA
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9
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Boss RD. Palliative care for NICU survivors with chronic critical illness. Semin Fetal Neonatal Med 2023; 28:101446. [PMID: 37100723 DOI: 10.1016/j.siny.2023.101446] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/28/2023]
Abstract
The sickest of NICU survivors develop chronic critical illness (CCI). Most infants with CCI will leave the NICU using chronic medical technology and will experience repeated rehospitalizations. The unique issues for these NICU graduates- escalating chronic medical technologies, fractured post-NICU healthcare, gaps in home health services, and family strain-are common and predictable. This means that raising family and NICU team awareness of these issues, and putting plans in place to address them, should occur for every NICU infant with CCI. Pediatric palliative care is one resource that can be engaged within the NICU to support the child and family through NICU discharge and beyond. This review examines what is known about the unique needs of infants who leave the NICU with CCI and the role that NICU-initiated palliative care involvement can play for these patients, families, clinicians, and the health care system.
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Affiliation(s)
- Renee D Boss
- Pediatric Palliative Care, Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, 200 N. Wolfe St, Baltimore, MD, 21287, USA.
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10
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Gaballah M, Durand R, Srinivasan A, Katcoff H, Cahill AM, Otero HJ. Central venous access in children: Placement trends over the last decade. Clin Imaging 2023; 97:84-88. [PMID: 36921450 DOI: 10.1016/j.clinimag.2023.02.007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/14/2022] [Revised: 01/23/2023] [Accepted: 02/07/2023] [Indexed: 02/12/2023]
Abstract
PURPOSE To evaluate central venous access placement trends for radiology and non-radiology services over the last decade. MATERIALS AND METHODS Children who had central venous access procedures included in a large administrative database of 49 pediatric institutions in the United States between 2010 and 2020 were included. Patient demographics and patient specific factors were compared between groups. The percentage of procedures performed by interventional radiology (IR) and non-radiology services were compared over time and by region. RESULTS A total of 483,181 vascular access encounters were recorded (45.3% female; median age 2 years (IQR 0-11 years)). Approximately one quarter of vascular access encounters were IR-led, with a slight increase of 3.8% between 2010 and 2020. Children who underwent IR-placed vascular access were older (median age of 4 years compared to 1 year in non-radiology encounters). Interventional radiology-placed access was greatest in the Midwest (33.5%) with a decrease of 5.9% over the study period; in the other three regions, IR-performed encounters increased. Patient comorbidities more prevalent in the IR encounters were technology dependence (42.4% of all radiology encounters), gastrointestinal (34.9%), respiratory (20.8%), and transplant (8.1%), while those which were more prevalent in the non-radiology encounters were nephrology/urology (21.4% of all non-radiology encounters), prematurity/neonatal (17.3%), and malignancy (17.3%). CONCLUSIONS Interventional radiology-provided vascular access services have slightly increased over the last decade without significant service-line transfer to other specialties. Underlying comorbidities in IR-led vascular access encounters vary across institutions based on referral patterns, possibly reflecting the adoption of ultrasound guidance by other pediatric subspecialties.
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Affiliation(s)
- Marian Gaballah
- Department of Radiology, Children's Hospital of Philadelphia, 3401 Civic Center Blvd., Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
| | - Rachelle Durand
- Department of Radiology and Biomedical Imaging, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA 94158, USA
| | - Abhay Srinivasan
- Department of Radiology, Children's Hospital of Philadelphia, 3401 Civic Center Blvd., Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Hannah Katcoff
- Center for Pediatric Clinical Effectiveness at the Children's Hospital of Philadelphia, Philadelphia, PA 19104, USA
| | - Anne Marie Cahill
- Department of Radiology, Children's Hospital of Philadelphia, 3401 Civic Center Blvd., Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Hansel J Otero
- Department of Radiology, Children's Hospital of Philadelphia, 3401 Civic Center Blvd., Philadelphia, PA 19104, USA; Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
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11
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Nkoy F, Stone B, Sheng X, Murphy N. High Parental Concern in Children With Medical Complexity: An Early Indicator of Illness. Hosp Pediatr 2023; 13:250-257. [PMID: 36720703 DOI: 10.1542/hpeds.2022-006876] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/02/2023]
Abstract
OBJECTIVES High concern about child's health is a common reason parents of children with medical complexity (CMC) seek care in emergency departments and hospitals. Factors driving parental concern are unknown. This study explores associations of parent's sociodemographic and child's clinical factors with high parental concern. PATIENT AND METHODS Secondary analysis of a pilot study of CMC and parents who used daily for 3 months MyChildCMC, a home monitoring app. Parents recorded their child's vital signs (temperature, heart rate, respiratory rate, oximetry), symptoms (pain, seizures, fluid intake/feeding, mental status), and oxygen use, and received immediate feedback. Parents rated their child's health concern on a 4-point Likert scale. Concern scores were dichotomized (3-4 = high, 1-2 = low) and modeled in a mixed-effects logistic regression to explore important associations. RESULTS We analyzed 1223 measurements from 24 CMC/parents, with 113 (9.24%) instances of high concern. Child factors associated with high parental concern were increased pain (odds ratio [OR], 5.10; 95% confidence interval [CI], 2.53-10.29; P < .01), increased oxygen requirement (OR, 28.91; 95% CI, 10.07-82.96; P < .01), reduced nutrition/fluid intake (OR, 71.58; 95% CI, 13.01-393.80; P < .01), and worsened mental status (OR, 2.15; 95% CI, 1.10-4.17, P = .02). No other associations existed. CONCLUSIONS Changes in CMC's clinical parameters were associated with high concern, which may be an early indicator of acute illness in CMC when it is the primary complaint. Monitoring and responding to high parental concerns may support CMC care at home.
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Affiliation(s)
- Flory Nkoy
- University of Utah, Department of Pediatrics, Salt Lake City, Utah
| | - Bryan Stone
- University of Utah, Department of Pediatrics, Salt Lake City, Utah
| | - Xiaoming Sheng
- University of Utah, Department of Pediatrics, Salt Lake City, Utah
| | - Nancy Murphy
- University of Utah, Department of Pediatrics, Salt Lake City, Utah
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12
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Callahan JM, Baldwin S, Bodnar C, Fuchs S, Krug S, Lightfoot C, Raskas M, Weinberg S. Access to Critical Health Information for Children During Emergencies: Emergency Information Forms and Beyond. Ann Emerg Med 2023; 81:e27-e36. [PMID: 36813444 DOI: 10.1016/j.annemergmed.2022.12.005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/02/2022] [Accepted: 12/02/2022] [Indexed: 02/22/2023]
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13
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Shipman KJ, Mercer AH, Raisanen JC, Jabre NA, Vo HH, Miles A, Shepard J, Henderson CM, Boss RD, Wilfond BS. "What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation. J Palliat Med 2023. [PMID: 36662553 DOI: 10.1089/jpm.2022.0426] [Citation(s) in RCA: 4] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/21/2023] Open
Abstract
Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown about the families who decline. Objective: To describe the rationales of families who decline home ventilation. Design: Semi-structured interview study. Setting/Subjects: We interviewed 16 families in hospitals across 3 U.S. states, identified by their clinicians as previously deciding to not pursue home ventilation via tracheostomy within the past five years. Measurements: Targeted content and narrative analyses were used to understand family intentions and reasons for declining. Results: The clinical and social context varied among the 16 families in this study. Families' intentions in saying "no" fell into two categories: (1) definitive "No": Families who stood firm on in their decision and (2) contingent "No": Families who may consider this in the future. Families described four reasons why their child did not receive home ventilation: (1) concern about medical impacts, (2) concern about physical and/or communication restrictions, (3) concern that there would be no clear health benefit, and (4) concern about no clear meaningful life. Most families mentioned all four reasons, but concern about no clear meaningful life predominated. Conclusions: Though these families did not see home ventilation as an appropriate option, each reported a complex interplay of intentions behind and reasons for declining. Clinicians who counsel families about home ventilation could share the reasons that families commonly decline this intervention to facilitate a balanced discussion.
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Affiliation(s)
- Kelly J Shipman
- Palliative Care and Resilience Lab, Seattle Children's Research Institute, Seattle, Washington, USA.,Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA
| | - Amanda H Mercer
- Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA
| | | | - Nicholas A Jabre
- Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA.,Eudowood Division of Pediatric Respiratory Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
| | - Holly Hoa Vo
- Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.,Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA
| | - Alison Miles
- Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA.,Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland, USA
| | - Jennifer Shepard
- Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland, USA
| | - Carrie M Henderson
- Department of Pediatrics, University of Mississippi Medical Center, Jackson, Mississippi, USA.,Center for Bioethics and Medical Humanities, Jackson, Mississippi, USA
| | - Renee D Boss
- Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA.,Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland, USA
| | - Benjamin S Wilfond
- Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.,Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA
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14
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Lindley LC, Svynarenko R, Mooney-Doyle K, Mendola A, Naumann WC, Harris R. A National Study of Healthcare Service Patterns at the End of Life Among Children With Cardiac Disease. J Cardiovasc Nurs 2023; 38:44-51. [PMID: 34935739 PMCID: PMC9209569 DOI: 10.1097/jcn.0000000000000875] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/15/2022]
Abstract
BACKGROUND Heart diseases are one of the leading causes of health-related deaths among children. Concurrent hospice care offers hospice and nonhospice healthcare services simultaneously, but the use of these services by children with cardiac disease has been rarely investigated. OBJECTIVE The aims of this study were to identify patterns of nonhospice healthcare services used in concurrent hospice care and describe the profile of children with cardiac disease in these clusters. METHODS This study was a retrospective cohort analysis of Medicaid claims data collected between 2011 and 2013 from 1635 pediatric cardiac patients. The analysis included descriptive statistics and latent class analysis. RESULTS Children in the sample used more than 314 000 nonhospice healthcare services. The most common services were inpatient hospital procedures, durable medical equipment, and home health. Latent class analysis clustered children into "moderate intensity" (60.0%) and "high intensity" classes (40.0%). Children in "moderate intensity" had dysrhythmias (31.7%), comorbidities (85.0%), mental/behavioral health conditions (55%), and technology dependence (71%). They commonly resided in urban areas (60.1%) in the Northeast (44.4%). The health profile of children in the "high intensity" class included dysrhythmias (39.4%), comorbidities (97.6%), mental/behavioral health conditions (71.5%), and technology dependence (85.8%). These children resided in rural communities (50.7%) in the South (53.1%). CONCLUSIONS Two patterns of use of nonhospice healthcare services were identified in this study. This information may be used by nurses and other healthcare professionals working in concurrent hospice care to assess the healthcare service needs of children with cardiac conditions at the end of life.
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15
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HarnEnz Z, Vermilion P, Foster-Barber A, Treat L. Pediatric neuropalliative care. HANDBOOK OF CLINICAL NEUROLOGY 2023; 191:157-184. [PMID: 36599507 DOI: 10.1016/b978-0-12-824535-4.00015-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 01/03/2023]
Abstract
Pediatric palliative care seeks to support quality of life for children and families affected by serious illness. Children with neurological disease are among the most frequent recipients of pediatric palliative care. Several important elements distinguish pediatric palliative care from adult practice, including a longer illness duration, longitudinal relationships over the span of years, diseases characterized by chronic fragility rather than progressive pathology, and the reliance on parents as proxy decision makers. This chapter will provide an overview of pediatric neuropalliative care, with emphasis on the types of disease trajectories, symptom management, and communication principles for supporting shared decision making with families. The role of neurology expertise is highlighted throughout, with special attention toward incorporating palliative care into pediatric neurology practice.
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Affiliation(s)
- Zoe HarnEnz
- Department of Neurology, University of California San Francisco, San Francisco, CA, United States
| | - Paul Vermilion
- Department of Medicine, University of Rochester, Rochester, NY, United States
| | - Audrey Foster-Barber
- Department of Neurology, University of California San Francisco, San Francisco, CA, United States
| | - Lauren Treat
- Department of Pediatrics, University of Colorado School of Medicine, Aurora, CO, United States.
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16
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Bogetz JF, Trowbridge A, Jonas D, Root MC, Mullin J, Hauer J. The Impact of Caring for Children With Severe Neurological Impairment on Clinicians. Clin Pediatr (Phila) 2022; 61:707-716. [PMID: 35610773 DOI: 10.1177/00099228221099135] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solutions by underscoring the aspects of care that can be sustaining. Twenty-five clinicians participated including physicians (n = 8, 32%), social workers (n = 5, 20%), nurses/nurse practitioners (n = 5, 20%), case managers (n = 3, 12%), developmental therapists (n = 2, 8%), and other psychosocial clinicians (n = 2, 8%). Clinicians represented a variety of specialties including complex care/hospitalists (n = 10, 19%), palliative care (n = 7, 13%), and critical care (n = 6, 12%). Thematic content analysis revealed 3 major themes: (1) worries and challenges; (2) positive impact from being present; and (3) personal growth and meaning-making. Many clinicians described the ways listening, examining biases, learning about family perspectives, and normalizing the need for emotional processing helped them to understand their patients, families, and themselves more deeply.
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Affiliation(s)
- Jori F Bogetz
- Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Hospital and Research Institute, Seattle, WA, USA
| | - Amy Trowbridge
- Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Hospital and Research Institute, Seattle, WA, USA
| | - Danielle Jonas
- Silver School of Social Work, New York University, New York, NY, USA
| | - Maggie C Root
- Vanderbilt University School of Nursing, Nashville, TN, USA
| | - Jonathan Mullin
- Division of Newborn Medicine, Department of Pediatrics, Washington University School of Medicine, Saint Louis, MO, USA
| | - Julie Hauer
- Seven Hills Pediatric Center, Division of General Pediatrics, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital, Boston, MA, USA
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17
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Heneghan JA, Goodman DM, Ramgopal S. Demographic and Clinical Differences Between Applied Definitions of Medical Complexity. Hosp Pediatr 2022; 12:654-663. [PMID: 35652303 DOI: 10.1542/hpeds.2021-006432] [Citation(s) in RCA: 7] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/24/2022]
Abstract
OBJECTIVES To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS We conducted a retrospective, cross-sectional cohort study of children <21 years of age hospitalized at 47 US Pediatric Health Information System-participating children's hospitals between January 2017 to December 2019. We classified patients as having multisystem complexity when using 3 definitions of medical complexity (pediatric complex chronic conditions, pediatric medical complexity algorithm, and pediatric chronic critical illness) and assessed their overlap. We compared demographic, clinical, outcome, cost characteristics, and longitudinal healthcare utilization for each grouping. RESULTS Nearly one-fourth (23.5%) of children hospitalized at Pediatric Health Information System-participating institutions were identified as meeting at least 1 definition of multisystem complexity. Children with multisystem complexity ranged from 1.0% to 22.1% of hospitalized children, depending on the definition, with 31.2% to 95.9% requiring an ICU stay during their index admission. Differences were seen in demographic, clinical, and resource utilization patterns across the definitions. Definitions of multisystem complexity demonstrated poor agreement (Fleiss' κ 0.21), with 3.5% of identified children meeting all 3. CONCLUSIONS Three definitions of multisystem complexity identified varied populations of children with complex medical needs, with poor overall agreement. Careful consideration is required when applying definitions of medical complexity in health services research, and their lack of concordance should result in caution in the interpretation of research using differing definitions of medical complexity.
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Affiliation(s)
- Julia A Heneghan
- Division of Pediatric Critical Care, University of Minnesota Masonic Children's Hospital, Minneapolis, Minnesota
| | | | - Sriram Ramgopal
- Emergency Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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18
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Fornehed MLC, Svynarenko R, Keim-Malpass J, Cozad MJ, Qualls KA, Stone WL, Lindley LC. Comparison between Rural and Urban Appalachian Children in Hospice Care. South Med J 2022; 115:192-197. [PMID: 35237837 PMCID: PMC8908896 DOI: 10.14423/smj.0000000000001365] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/23/2022]
Abstract
OBJECTIVE The goal of this study was to compare rural and urban pediatric hospice patients in Appalachia. METHODS Using a retrospective, nonexperimental design, we sought to compare characteristics of Appalachian rural and urban children younger than 21 years enrolled in the Medicaid hospice benefit. Descriptive statistics were calculated on the demographic, hospice, and clinical characteristics of children from Appalachia. Comparisons were calculated using Pearson χ2 for proportions and the Student t test for means. RESULTS Less than half of the 1788 Appalachian children admitted to hospice care resided in rural areas (40%). Compared with children in urban areas of Appalachia, rural children were significantly younger (8 years vs 9.5 years) and more often had a complex chronic condition (56.0% vs 35.1%) and comorbidities (38.5% vs 17.0%) with technology dependence (32.6% vs 17.0%). Children in rural Appalachian were commonly from communities in the southern region of Appalachia (27.9% vs <10.0%), with median household incomes <$50,000/year (96.7% vs 22.4%). Significant differences were present in clinical care between rural and urban Appalachian children. Rural children had longer lengths of stay in hospice care (38 days vs 11 days) and were less likely to use the emergency department during hospice admission (19.0% vs 43.0%). These children more often visited their primary care provider (49.9% vs 31.3%) and sought care for symptoms from nonhospice providers (18.1% vs 10.0%) while admitted to hospice. CONCLUSIONS Our results suggest that children admitted to hospice care in rural versus urban Appalachia have distinct characteristics. Rural children are admitted to hospice care with significant medical complexities and reside in areas of poverty. Hospice care for rural children suggests a continuity of care with longer hospice stays and fewer transitions to the emergency department; however, the potential for care fragmentation is present, with frequent visits to primary care and nonhospice providers for symptom management. Understanding the unique characteristics of children in Appalachia may be essential for advancing knowledge and care for these children at the end of life. Future research examining geographic variation in hospice care in Appalachia is warranted.
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Affiliation(s)
- Mary Lou Clark Fornehed
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
| | - Radion Svynarenko
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
| | - Jessica Keim-Malpass
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
| | - Melanie J Cozad
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
| | - Kerri A Qualls
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
| | - Whitney L Stone
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
| | - Lisa C Lindley
- From the Whitson-Hester School of Nursing, Tennessee Technological University, Cookeville, the College of Nursing, University of Tennessee, Knoxville, the School of Nursing, University of Virginia, Charlottesville, and the Department of Health Services Policy and Management, Center for Effectiveness Research in Orthopedics, University of South Carolina, Columbia
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19
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Finding a New Normal: Maternal Experiences Transitioning to Home From the Neonatal Intensive Care Unit Caring for Technology-Dependent Infants. Adv Neonatal Care 2022; 22:E2-E12. [PMID: 35113827 DOI: 10.1097/anc.0000000000000850] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
BACKGROUND Infants discharged from the neonatal intensive care unit (NICU) dependent on medical technology (eg, respiratory or nutritional support) are a growing vulnerable population. These infants are medically fragile, prone to emergency department visits and readmissions, and require increased caregiver demands at home. The experiences of their maternal caregiver's after NICU discharge however, are not well understood. PURPOSE This qualitative descriptive study addressed this knowledge gap by interviewing mothers of technology-dependent infants about their experience during their first 2 weeks transitioning to home from the NICU. This is a critical period in which mothers must first assume advanced caretaking responsibilities in the home. METHODS Eight mothers participated in semistructured audio-recorded interviews via the Web conferencing system Zoom and completed demographic questionnaires. RESULTS Five themes emerged from the data that described essential features of the mothers' transition to home: (a) needing coordinated discharge care; (b) establishing a routine; (c) being an advocate; (d) having a support system; and (e) finding normalcy. An additional important finding of this study was the presence of maternal posttraumatic stress and postpartum depression. IMPLICATIONS FOR PRACTICE Results highlight the importance of providing mothers hands-on practice opportunities and identifying social support and home healthcare options prior to discharge of technology-dependent infants. IMPLICATIONS FOR RESEARCH Future research should focus on multidisciplinary interventions targeted toward discharge preparation, transitional support, and understanding maternal psychiatric symptoms among mothers of technology-dependent infants.
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20
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Bogetz JF, Revette A, DeCourcey D. Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions. J Palliat Med 2022; 25:250-258. [PMID: 34618616 PMCID: PMC8861906 DOI: 10.1089/jpm.2021.0221] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/03/2023] Open
Abstract
Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design: Mixed methods design was used to analyze data from the cross-sectional Survey of Caring for Children with CCCs.Setting/Subjects: Bereaved parents of children with CCCs who received care at a large academic institution in the United States and died between 2006 and 2015. Measurements: Survey items were analyzed descriptively and integrated with thematic analysis of open-response items to identify key themes pertaining to parents' perspectives on technology. Results: 110/211 (52%) parents completed the survey and at least 1 open-response item. More than 60% of parents had children with congenital/chromosomal or central nervous system progressive CCCs, used technology at baseline, and died in the hospital. A subset of parents recalled making decisions either not to initiate (n = 26/101, 26%) or to discontinue (n = 46/104, 44%) technology at end of life. Parents described both the benefits and burdens of technology. Two themes emerged regarding technology's association with the (1) intersection with goals of care and (2) complications and regret. Within goals of care, two subthemes arose: (a) technology was necessary to give time for life extension and/or to say goodbye, and (b) technology greatly impacted the child's quality of life and symptoms. Conclusions: Parents have nuanced perspectives about the benefits and burdens of technology. It is essential to understand parent's most important goals when supporting decisions about technology assistance for children with CCCs.
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Affiliation(s)
- Jori F. Bogetz
- Division of Pediatric Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.,Seattle Children's Research Institute, Center for Clinical and Translational Research, Seattle, Washington, USA.,Address correspondence to: Jori F. Bogetz, MD, Seattle Children's Research Institute, Center for Clinical and Translational Research, 1900 Ninth Street, JMB-6, Seattle, WA 98101, USA
| | - Anna Revette
- Survey and Data Management Core, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
| | - Danielle DeCourcey
- Division of Critical Care, Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA
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21
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Blaine K, Wright J, Pinkham A, O'Neill M, Wilkerson S, Rogers J, McBride S, Crofton C, Grodsky S, Hall D, Mauskar S, Akula V, Khan A, Mercer A, Berry JG. Medication Order Errors at Hospital Admission Among Children With Medical Complexity. J Patient Saf 2022; 18:e156-e162. [PMID: 32398538 DOI: 10.1097/pts.0000000000000719] [Citation(s) in RCA: 16] [Impact Index Per Article: 5.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
OBJECTIVES We sought to characterize the nature and prevalence of medication order errors (MOEs) occurring at hospital admission for children with medical complexity (CMC), as well as identify the demographic and clinical risk factors for CMC experiencing MOEs. METHODS Prospective cohort study of 1233 hospitalizations for CMC from November 1, 2015, to October 31, 2016, at 2 children's hospitals. Medication order errors at admission were identified prospectively by nurse practitioners and a pharmacist through direct patient care. The primary outcome was presence of at least one MOE at hospital admission. Statistical methods used included χ2 test, Fisher exact tests, and generalized linear mixed models. RESULTS Overall, 6.1% (n = 75) of hospitalizations had ≥1 MOE occurring at admission, representing 112 total identified MOEs. The most common MOEs were incorrect dose (41.1%) and omitted medication (34.8%). Baclofen and clobazam were the medications most commonly associated with MOEs. In bivariable analyses, MOEs at admission varied significantly by age, assistance with medical technology, and numbers of complex chronic conditions and medications (P < 0.05). In multivariable analysis, patients receiving baclofen had the highest adjusted odds of MOEs at admission (odds ratio, 2.2 [95% confidence interval, 1.2-3.8]). CONCLUSIONS Results from this study suggest that MOEs are common for CMC at hospital admission. Children receiving baclofen are at significant risk of experiencing MOEs, even when orders for baclofen are correct. Several limitations of this study suggest possible undercounting of MOEs during the study period. Further investigation of medication reconciliation processes for CMC receiving multiple chronic, home medications is needed to develop effective strategies for reducing MOEs in this vulnerable population.
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Affiliation(s)
| | - John Wright
- Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, TN
| | | | | | - Sarah Wilkerson
- Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, TN
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22
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Paitich L, Luedemann C, Giel J, Maynard R. Allocation of Pediatric Home Care Nursing Hours: The Minnesota Experience. Home Healthc Now 2022; 40:27-39. [PMID: 34994718 PMCID: PMC8740033 DOI: 10.1097/nhh.0000000000001035] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
Despite an increasing demand for pediatric home care nursing, there is no comprehensive or universal standard of care for prescribing pediatric home care nursing hours based on a child's medical complexity. Adoption of a qualification tool (QT) to allocate home care nursing hours based on the medical complexity of a child may mitigate inequality in access to care and improve the patient and family experience. A QT, developed in Minnesota, recommends home care nursing hours based on the level of medical complexity and need for skilled nursing interventions. Four hypothetical case studies demonstrate the use of the QT to calculate recommended nursing hours. To validate the tool, a survey of discharge planners found a percentage difference in calculated hours of 4.1, 5.7, 11.2, and 24.9 in the four case studies. Discharge planners rated the usability of the QT as favorable with a score of 3.6 on a Likert scale of 5. The recommended nursing hours prescribed for families, based on the QT, was perceived as meeting the needs of the child by 56% and 42% of surveyed parents and home care nurses (HCNs), respectively. The need for additional nursing hours was expressed by 33% and 50% of parents and nurses, respectively. In general, HCNs' assessment of allocated nursing hours paralleled that of parents. Further refinement and adoption of a standardized QT to allocate home care nursing hours may improve access and outcomes for children requiring home care nursing.
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23
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Bogetz JF, Trowbridge A, Lewis H, Shipman KJ, Jonas D, Hauer J, Rosenberg AR. Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making. J Pain Symptom Manage 2021; 62:1117-1125. [PMID: 34147578 PMCID: PMC8648906 DOI: 10.1016/j.jpainsymman.2021.06.011] [Citation(s) in RCA: 32] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/17/2021] [Revised: 06/09/2021] [Accepted: 06/10/2021] [Indexed: 10/21/2022]
Abstract
CONTEXT Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology and/or surgery, goals of care and/or advance care planning, or transitions of care. OBJECTIVES This study describes the experiences of parents of children with SNI during decision-making. METHODS Eligible participants were parents facing a decision for a child with SNI admitted to acute or intensive care units at a single tertiary pediatric center. Parents completed 1:1 semi-structured interviews and brief surveys between August 2019 and February 2020. Demographic information was extracted from the child's electronic health record. A team of palliative and complex care researchers with expertise in qualitative methods used thematic content analysis to formulate results. RESULTS 25 parents participated. The majority had children with congenital/chromosomal SNI conditions (n = 13, 65%), >5 subspecialists (n = 14, 61%), and chronic technology assistance (n = 25, 100%). 68% (n = 17) were mothers and 100% identified as being their child's primary decision-maker. Responses from parents included 3 major themes: 1) our roles and actions; 2) our stresses and challenges; and 3) our meaning and purpose. Responses highlighted the pervasiveness of parental decision-making efforts and parents' advocacy and vigilance regarding their child's needs. Despite this, parents often felt unheard and undervalued in the hospital. CONCLUSION During hospitalizations, when parents of children with SNI often face high-stakes medical decisions, interventions are needed to support parents and ensure they feel heard and valued as they navigate their child's medical needs and system challenges.
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Affiliation(s)
- Jori F Bogetz
- Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Palliative Care and Resilience Lab, Center for Clinical and Translational Research; Seattle Children's Hospital and Research Institute, Seattle, WA, USA.
| | - Amy Trowbridge
- Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Palliative Care and Resilience Lab, Center for Clinical and Translational Research; Seattle Children's Hospital and Research Institute, Seattle, WA, USA
| | - Hannah Lewis
- Treuman Katz Center for Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA
| | - Kelly J Shipman
- Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA
| | - Danielle Jonas
- Silver School of Social Work, New York University; New York, NY
| | - Julie Hauer
- Seven Hills Pediatric Center; Assistant Professor, Division of General Pediatrics, Department of Pediatrics, Harvard Medical School; Boston Children's Hospital, Boston, MA
| | - Abby R Rosenberg
- Division of Hematology/Oncology, Department of Pediatrics, University of Washington School of Medicine; Palliative Care and Resilience Lab, Center for Clinical and Translational Research, Seattle Children's Hospital and Research Institute, Seattle, WA
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Complex Care Program Enrollment and Change in ED and Hospital Visits from Medical Device Complications. Pediatr Qual Saf 2021; 6:e450. [PMID: 34476304 PMCID: PMC8389945 DOI: 10.1097/pq9.0000000000000450] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/18/2020] [Accepted: 02/25/2021] [Indexed: 12/19/2022] Open
Abstract
Introduction Medical device-related complications often lead to emergency department (ED) visits and hospitalizations for children with medical complexity (CMC), and pediatric complex care programs may be one way to decrease unnecessary encounters. Methods A retrospective cohort study comparing ED and inpatient encounters due to device complications of 2 cohorts of CMC at a single children's hospital during 2014-2016; 99 enrolled in a complex care program and 244 in a propensity-matched comparison group. Structured chart reviews identified ED and inpatient encounters due to device complications. The outcome was a change in the frequency of these encounters from the year before to the year after enrollment in the hospital's complex care program. Program effects were estimated with weighted difference-in-differences (DiDs), comparing the change in mean encounter frequency for CMC enrolled in the program with change for propensity-matched children not enrolled in the program. Results Mean encounters related to device complications decreased for both groups. Complication-related ED encounters per year decreased from a weighted mean (SD) of 0.74 (0.85) to 0.30 (0.44) in enrolled children and 0.26 (0.89) to 0.12 (0.56) in comparison children, a DiD of 0.30 fewer [95% confidence interval (CI) -0.01 to 0.60]. The largest reductions in device complication ED visits were among those with enteral tubes [0.36 fewer (95% CI 0.04-0.68)]. Hospitalizations decreased over time, but DiDs were not significantly different between groups. Conclusions Acute care use from device complications decreased with time. Complex care program enrollment may be associated with more substantial reductions in device complication ED visits, and effects may be most pronounced for CMC with enteral tubes.
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Boggs EF, Foster C, Shah P, Goodman DM, Hall M, Garfield CF. Trends in Technology Assistance Among Patients With Childhood Onset Chronic Conditions. Hosp Pediatr 2021; 11:711-719. [PMID: 34078644 DOI: 10.1542/hpeds.2020-004739] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/24/2022]
Abstract
OBJECTIVE To describe the prevalence, types, and trends over time of medical technology assistance (TA) in patients at the age of transition to adult care with childhood onset chronic conditions (COCCs) cared for at children's hospitals. PATIENTS AND METHODS In this retrospective repeated annual cross-sectional cohort study of the Pediatric Health Information Systems inpatient data, patients with at least 1 hospitalization from January 1, 2008, to December 31, 2018 with a selected COCC were included. The COCCs investigated were brain and spinal cord malformation, cerebral palsy, heart and great vessel malformation, cystic fibrosis, sickle cell anemia, and chronic renal failure. TA was defined as requiring an indwelling medical device to maintain health status. Trends over time in TA were analyzed with the Cochran-Armitage test and generalized linear models. RESULTS During the study, 381 289 unique patients accounted for 940 816 hospitalizations. Transition-aged patients (19-21 years old) represented 2.4% of all included hospitalizations over the 11-year period, whereas patients ages 21 and above represented 2.7%. The annual proportion of patients with TA increased significantly from 31.3% in 2008 to 36.9% in 2018, a 17.9% increase (P < .001). CONCLUSIONS In this cohort of patients with select COCCs hospitalized at children's hospitals, a substantial and growing number of patients at the age of transition to adult care required TA. Identifying adult providers with resources to manage COCCs and maintain medical devices placed in childhood is challenging. These trends warrant special attention to support the timely and successful transition of medically complex patients from pediatric to adult care.
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Affiliation(s)
- Elizabeth F Boggs
- Divisions of Hospital Based Medicine and .,Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
| | - Carolyn Foster
- Mary Ann & J. Milburn Smith Child Health Research, Outreach and Advocacy Center, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois; and.,Academic General Pediatrics and Primary Care, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
| | - Parag Shah
- Divisions of Hospital Based Medicine and.,Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
| | - Denise M Goodman
- Divisions of Hospital Based Medicine and.,Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
| | | | - Craig F Garfield
- Divisions of Hospital Based Medicine and.,Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois.,Mary Ann & J. Milburn Smith Child Health Research, Outreach and Advocacy Center, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois; and
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26
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Yuen A, Rodriguez N, Osorio SN, Nataraj C, Ward MJ, Clapper TC, Abramson E, Ching K. Simulation-Based Discharge Education Program for Caregivers of Children With Tracheostomies. Hosp Pediatr 2021; 11:571-578. [PMID: 33980665 DOI: 10.1542/hpeds.2020-000984] [Citation(s) in RCA: 13] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/24/2022]
Abstract
OBJECTIVES To design, implement, and evaluate a simulation-based education (SBE) program for caregivers of children with tracheostomy. METHODS Self-reported comfort and confidence in knowledge as well as tracheostomy care skills were assessed before and after a single SBE session for 24 consecutively enrolled caregivers of children with tracheostomies aged <21 years who were hospitalized at an academic medical center from August 2018 to September 2019 by using a survey and checklist, respectively. Mean individual and aggregated scores were compared by using a paired samples t-test, and association between instruments was determined with Spearman correlation. RESULTS Post-SBE, there was a significant improvement in both self-reported comfort and confidence (P < .001) and checklist assessment of most tracheostomy care skills (P < .001). There were no significant correlations between caregivers' self-reported comfort and confidence and skills pre-SBE (ρ = 0.13) or post-SBE (ρ = 0.14). Cronbach's α coefficients for the survey ranged from 0.93 to 0.95 and for the checklist from 0.58 to 0.67. Seventeen percent of caregivers competently completed the entire checklist post-SBE, with most caregivers missing 1 or 2 critical skills such as obturator removal after tracheostomy insertion. CONCLUSIONS In this pilot study, we demonstrated successful design and implementation of an SBE program for caregivers of children with tracheostomies, revealing improvements in self-reported comfort and confidence as well as in their performance of tracheostomy care skills. Further optimization is needed, and caregivers may benefit from additional SBE sessions to achieve complete skills competency. Future research on the long-term impact of SBE and the peer-to-peer support element of the program is needed.
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Affiliation(s)
- Anthony Yuen
- Department of Pediatrics, Weill Cornell Medicine and
| | | | | | - Courtney Nataraj
- Family Advisory Council, Komansky Children's Hospital, New York-Presbyterian/Weill Cornell Medical Center, New York, New York; and
| | - Mary J Ward
- Department of Pediatrics, Weill Cornell Medicine and
| | | | | | - Kevin Ching
- Department of Pediatrics, Weill Cornell Medicine and
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27
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Nkoy F, Stone B, Hofmann M, Fassl B, Zhu A, Mahtta N, Murphy N. Home-Monitoring Application for Children With Medical Complexity: A Feasibility Trial. Hosp Pediatr 2021; 11:492-502. [PMID: 33827786 DOI: 10.1542/hpeds.2020-002097] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/24/2022]
Abstract
OBJECTIVES Mobile apps are suggested for supporting home monitoring and reducing emergency department (ED) visits and hospitalizations for children with medical complexity (CMC). None have been implemented. We sought to assess the MyChildCMC app (1) feasibility for CMC home monitoring, (2) ability to detect early deteriorations before ED and hospital admissions, and (3) preliminary impact. METHODS Parents of CMC (aged 1-21 years) admitted to a children's hospital were randomly assigned to MyChildCMC or usual care. MyChildCMC subjects recorded their child's vital signs and symptoms daily for 3 months postdischarge and received real-time feedback. Feasibility measures included parent's enrollment, retention, and engagement. The preliminary impact was determined by using quality of life, parent satisfaction with care, and subsequent ED and hospital admissions and hospital days. RESULTS A total of 62 parents and CMC were invited to participate: 50 enrolled (80.6% enrollment rate) and were randomly assigned to MyChildCMC (n = 24) or usual care (n = 26). Retention at 1 and 3 months was 80% and 74%, and engagement was 68.3% and 62.6%. Run-chart shifts in vital signs were common findings preceding admissions. The satisfaction score was 26.9 in the MyChildCMC group and 24.1 in the control group (P = .035). No quality of life or subsequent admission differences occurred between groups. The 3-month hospital days (pre-post enrollment) decreased from 9.25 to 4.54 days (rate ratio = 0.49; 95% confidence interval = 0.39-0.62; P < .001) in the MyChildCMC group and increased from 1.08 to 2.46 days (rate ratio = 2.29; 95% confidence interval = 1.47-3.56; P < .001) in the control group. CONCLUSIONS MyChildCMC was feasible and appears effective, with the potential to detect early deteriorations in health for timely interventions that might avoid ED and hospitalizations. A larger and definitive study of MyChildCMC's impact and sustainability is needed.
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Affiliation(s)
- Flory Nkoy
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Bryan Stone
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Michelle Hofmann
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Bernhard Fassl
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Angela Zhu
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Namita Mahtta
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
| | - Nancy Murphy
- Department of Pediatrics, University of Utah, Salt Lake City, Utah
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Central Vascular Access Device Complications in Pediatric Home Care Patients Managed by Family Caregivers or Nurses. JOURNAL OF INFUSION NURSING 2021. [DOI: 10.1097/nan.0000000000000417] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
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Rogers J, Reed MP, Blaine K, Manning H. Children with medical complexity: A concept analysis. Nurs Forum 2021; 56:676-683. [PMID: 33625740 DOI: 10.1111/nuf.12559] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/28/2020] [Revised: 01/01/2021] [Accepted: 01/29/2021] [Indexed: 11/27/2022]
Abstract
AIM The aim of this paper is to conduct a concept analysis on the term, "children with medical complexity." BACKGROUND Children with medical complexity (CMC) describes pediatric patients with chronic, sustained acuity; however, there is a lack of consensus in the literature regarding its exact meaning, characteristics, and implications. DESIGN This analysis relied upon the framework described by Walker and Avant. DATA SOURCE The CINAHL, MEDLINE, and PubMed databases were queried from April 2020 to December 2020 with an initial search of the literature for the keyword, "children with medical complexity" and other associated terms, such as "pediatric medical complexity" and "nursing care of children with medical complexity." REVIEW METHODS This analysis will explore the concept of CMC and its significance, attributes, antecedents, and consequences. RESULTS This investigation revealed that CMC are a growing population of pediatric patients who have one or more complex chronic conditions that affect multiple body systems, experience functional limitations, require extensive care coordination from multiple providers, and are dependent upon life-sustaining medical technology. CONCLUSIONS The findings can serve as a foundation for future work advancing the understanding of the topic of CMC.
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Affiliation(s)
- Jayne Rogers
- Medical Nursing Service, Boston Children's Hospital, Boston, Massachusetts, USA
| | - Mary P Reed
- Medical Nursing Service, Boston Children's Hospital, Boston, Massachusetts, USA
| | - Kevin Blaine
- Institute for Nursing and Interprofessional Research, Children's Hospital Los Angeles, Los Angeles, California, USA
| | - Haylee Manning
- Medical Nursing Service, Boston Children's Hospital, Boston, Massachusetts, USA
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30
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Boss RD, Henderson CM, Raisanen JC, Jabre NA, Shipman K, Wilfond BS. Family Experiences Deciding For and Against Pediatric Home Ventilation. J Pediatr 2021; 229:223-231. [PMID: 33068566 DOI: 10.1016/j.jpeds.2020.10.014] [Citation(s) in RCA: 17] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/30/2020] [Revised: 10/06/2020] [Accepted: 10/09/2020] [Indexed: 11/28/2022]
Abstract
OBJECTIVE To understand what considerations drive family decisions for, and against, pediatric home ventilation. STUDY DESIGN Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. RESULTS In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. CONCLUSIONS The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced.
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Affiliation(s)
- Renee D Boss
- Johns Hopkins School of Medicine, Baltimore, MD; Johns Hopkins Berman Institute of Bioethics, Baltimore, MD
| | - Carrie M Henderson
- University of Mississippi Medical Center, Jackson, MS; Center for Bioethics and Medical Humanities, Jackson, MS
| | | | - Nicholas A Jabre
- Johns Hopkins School of Medicine, Baltimore, MD; Johns Hopkins Berman Institute of Bioethics, Baltimore, MD
| | - Kelly Shipman
- Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA
| | - Benjamin S Wilfond
- Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA; Department of Pediatrics, University of Washington School of Medicine, Seattle, WA
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31
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Brenner M, Alexander D, Quirke MB, Eustace-Cook J, Leroy P, Berry J, Healy M, Doyle C, Masterson K. A systematic concept analysis of 'technology dependent': challenging the terminology. Eur J Pediatr 2021; 180:1-12. [PMID: 32710305 PMCID: PMC7380164 DOI: 10.1007/s00431-020-03737-x] [Citation(s) in RCA: 12] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/05/2020] [Revised: 06/22/2020] [Accepted: 07/09/2020] [Indexed: 01/08/2023]
Abstract
There are an increasing number of children who are dependent on medical technology to sustain their lives. Although significant research on this issue is taking place, the terminology used is variable and the concept of technology dependence is ill-defined. A systematic concept analysis was conducted examining the attributes, antecedents, and consequences of the concept of technology dependent, as portrayed in the literature. We found that this concept refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide ranging sequelae for the child and family, and health and social care delivery.Conclusion: The term technology dependent is increasingly redundant. It objectifies a heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways. What is Known: • There are an increasing number of children who require medical technology to sustain their life, commonly referred to as technology dependent. This concept analysis critically analyses the relevance of the term technology dependent which is in use for over 30 years. What is New: • Technology dependency refers to a wide range of clinical technology to support biological functioning across a dependency continuum, for a range of clinical conditions. It is commonly initiated within a complex biopsychosocial context and has wide-ranging sequelae for the child and family, and health and social care delivery. • The paper shows that the term technology dependent is generally portrayed in the literature in a problem-focused manner. • This term is increasingly redundant and does not serve the heterogenous group of children who are assisted by a myriad of technology and who adapt to, and function with, this assistance in numerous ways. More appropriate child-centred terminology will be determined within the TechChild project.
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Affiliation(s)
- Maria Brenner
- School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, 24 D'Olier Street, Dublin 2, Ireland.
| | - Denise Alexander
- grid.8217.c0000 0004 1936 9705School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, 24 D’Olier Street, Dublin 2, Ireland
| | - Mary Brigid Quirke
- grid.8217.c0000 0004 1936 9705School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, 24 D’Olier Street, Dublin 2, Ireland
| | - Jessica Eustace-Cook
- grid.8217.c0000 0004 1936 9705Trinity College Dublin, The University of Dublin, Dublin, Ireland
| | - Piet Leroy
- grid.5012.60000 0001 0481 6099Pediatric Intensive Care Unit & Pediatric Procedural Sedation Unit, Maastricht UMC and Faculty of Health, Life Sciences & Medicine, Maastricht University, Maastricht, Netherlands
| | - Jay Berry
- grid.2515.30000 0004 0378 8438Department of Medicine and Division of General Pediatrics, Boston Children’s Hospital and Harvard Medical School, Boston, MA USA
| | - Martina Healy
- Department of Paediatric Anaesthesia, Paediatric Critical Care Medicine and Paediatric Pain Medicine, Children’s Health Ireland Crumlin, Dublin, Ireland ,grid.8217.c0000 0004 1936 9705School of Medicine, Faculty of Health Sciences, Trinity College Dublin, the University of Dublin, Dublin, Ireland
| | - Carmel Doyle
- grid.8217.c0000 0004 1936 9705School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, 24 D’Olier Street, Dublin 2, Ireland
| | - Kate Masterson
- grid.8217.c0000 0004 1936 9705School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, 24 D’Olier Street, Dublin 2, Ireland ,grid.416107.50000 0004 0614 0346Paediatric Intensive Care Unit, The Royal Children’s Hospital, Melbourne, Australia
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Steuart R, Tan R, Melink K, Chinchilla S, Warniment A, Shah SS, Thomson J. Discharge Before Return to Respiratory Baseline in Children With Neurologic Impairment. J Hosp Med 2020; 15:531-537. [PMID: 32490803 PMCID: PMC7489799 DOI: 10.12788/jhm.3394] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/07/2019] [Accepted: 02/10/2020] [Indexed: 11/20/2022]
Abstract
BACKGROUND Children with neurologic impairment (NI) are commonly hospitalized with acute respiratory infections (ARI). These children frequently require respiratory support at baseline and are often discharged before return to respiratory baseline. OBJECTIVE To determine if discharge before return to respiratory baseline is associated with reutilization among children with NI hospitalized with ARI. METHODS This single-center retrospective cohort study included children with NI aged 1 to 18 years hospitalized with ARI who required increased respiratory support between January 2010 and September 2015. The primary exposure was discharge before return to respiratory baseline. The primary outcome was 30-day hospital reutilization. A generalized estimating equation was used to examine the association between exposure and outcome while accounting for within-patient clustering and patient-level clinical complexity and illness severity. RESULTS In the 632 hospitalizations experienced by 366 children, children were discharged before return to respiratory baseline in 30.4% of hospitalizations. Compared with those hospitalizations in which children were discharged at baseline, hospitalizations with a discharge before return to respiratory baseline were more likely to be for privately insured, technology-dependent children with respiratory comorbidities. Compared with discharges at respiratory baseline, discharges with increased respiratory support had no difference in 30-day reutilization (32.8% vs 31.8%; P = .81; adjusted OR 0.80, 95% CI 0.51-1.26). CONCLUSIONS Among children with NI hospitalized with ARI, discharge before return to respiratory baseline was common, but it was not associated with hospital reutilization. Return to respiratory baseline may not be a necessary component of discharge criteria in this population.
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Affiliation(s)
- Rebecca Steuart
- Division of Hospital Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
| | - Rachel Tan
- University of Cincinnati College of Medicine, Cincinnati, Ohio
| | | | | | - Amanda Warniment
- Pediatrics Housestaff, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
| | - Samir S Shah
- Division of Hospital Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
- Department of Pediatrics, University of Cincinnati, Cincinnati, Ohio
| | - Joanna Thomson
- Division of Hospital Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
- Department of Pediatrics, University of Cincinnati, Cincinnati, Ohio
- Corresponding Author: Joanna Thomson, MD, MPH; ; Telephone: 513-636-0257; Twitter: @JoThomsonMD
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Abebe E, Scanlon MC, Lee KJ, Chui MA. What do family caregivers do when managing medications for their children with medical complexity? APPLIED ERGONOMICS 2020; 87:103108. [PMID: 32501256 DOI: 10.1016/j.apergo.2020.103108] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 12/15/2018] [Revised: 01/13/2020] [Accepted: 04/01/2020] [Indexed: 06/11/2023]
Abstract
Using a work domain analysis and complementary thematic analysis, this paper aims to describe medication management work, its constraints, and complexities from the perspectives of family caregivers of children with medical complexity-a medically fragile segment of the pediatric population often dependent on multiple and complex medication regimens for survival and optimal functioning. Analyses were informed by data generated through observations of 12 care coordination clinic visits within a pediatric complex care program, semi-structured interviews of 11 family caregivers, and reviews of program documents. Our results show that family caregivers: (1) formulate medication management goals, identify values and criteria to judge goals but these may not necessarily be acknowledged and explicitly supported by system resources and healthcare professionals (2) are engaged in a range of complex medication management tasks that are both physically and emotionally demanding without the support of well-designed tools and resources to enhance their work.
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Affiliation(s)
- Ephrem Abebe
- Purdue University, Department of Pharmacy Practice, Fifth Third Bank Building, 640 Eskenazi Avenue, Indianapolis, IN, 46202, United States.
| | | | - K Jane Lee
- Medical College of Wisconsin, United States
| | - Michelle A Chui
- University of Wisconsin - Madison, School of Pharmacy, Madison, United States
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Rasooly IR, Shults J, Guevara JP, Feudtner C. State Variation in Posthospital Home Nursing for Commercially Insured Medically Complex Children. Pediatrics 2020; 146:peds.2019-2465. [PMID: 32641356 PMCID: PMC7397731 DOI: 10.1542/peds.2019-2465] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 04/28/2020] [Indexed: 11/24/2022] Open
Abstract
BACKGROUND AND OBJECTIVES Home nursing is essential for children with medical complexity (CMC), but provision varies substantially across states. Our objectives were to quantify state-to-state variability in distribution of posthospitalization home nursing to commercially insured CMC and to rank-order states. METHODS Retrospective cohort study of hospitalized commercially insured children with ≥1 complex chronic condition from birth to 18 years of age in the Truven MarketScan database. Cohort eligibility criteria were hospital discharge between January 2013 and November 2016 and at least 30 days of follow-up after discharge. Two primary outcome measures were used: receipt of any home nursing within 30 days of hospital discharge (yes or no) and number of days of posthospitalization home nursing (1-30 days). A composite metric encompassing both receipt and quantity was created by evaluating the 95th percentile of days of home nursing (0-30 days). RESULTS Overall, 9.9% of the sample received home nursing. After we adjusted for patient characteristics, the probability of receiving home nursing varied across states, ranging from 3.4% to 19.2%. Among home nursing recipients, the adjusted median home nursing days across states ranged from 6.6 to 24.5 days. The adjusted 95th percentile of days of home nursing (across the entire of sample, including recipients and nonrecipients of home nursing) ranged from 6.8 to 22.6 days. CONCLUSIONS We observed striking state-to-state variability in receipt of home nursing and mean number of days of posthospitalization home nursing among commercially insured CMC after adjustment for demographic and clinical differences. This suggests opportunities for state-level improvement.
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Affiliation(s)
- Irit R. Rasooly
- Children’s Hospital of Philadelphia,
Philadelphia, Pennsylvania; and,Perelman School of Medicine, University of
Pennsylvania, Philadelphia, Pennsylvania
| | - Justine Shults
- Children’s Hospital of Philadelphia,
Philadelphia, Pennsylvania; and,Perelman School of Medicine, University of
Pennsylvania, Philadelphia, Pennsylvania
| | - James P. Guevara
- Children’s Hospital of Philadelphia,
Philadelphia, Pennsylvania; and,Perelman School of Medicine, University of
Pennsylvania, Philadelphia, Pennsylvania
| | - Chris Feudtner
- Children’s Hospital of Philadelphia,
Philadelphia, Pennsylvania; and,Perelman School of Medicine, University of
Pennsylvania, Philadelphia, Pennsylvania
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Muesing C, Schimelpfenig B, Hustvet D, Maynard R, Christensen EW. Longitudinal Prevalence of Tracheostomized Children in Minnesota. Hosp Pediatr 2020; 10:663-669. [PMID: 32718915 DOI: 10.1542/hpeds.2020-0038] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/11/2023]
Abstract
OBJECTIVES To identify the annual prevalence of tracheostomized children over an 11-year span in Minnesota. Secondary objectives included decannulation and mortality rates. METHODS Retrospective review from 2008 to 2018 of a pediatric home care company database that provides home care services for ≥95% of tracheostomized children in Minnesota. The study group was divided into 2 cohorts: tracheostomized children that never required invasive home mechanical ventilation (iHMV) and tracheostomized children that required iHMV. Outcome measures included prevalence rates of tracheostomized children with or without iHMV, primary diagnoses, decannulation, and death rates. RESULTS Prevalence rates for tracheostomized children ≤16 years of age per 100 000 population increased 39% from 12.3 in 2008 to 17.2 in 2018. This upward trend was primarily associated with an increase in tracheostomized children receiving iHMV. This prevalence trend was inversely correlated with age. There was no significant change in the decannulation rate. The annual all-cause death rate declined over the study period and was primarily associated with decreased mortality in children receiving iHMV. If national prevalence rates in 2018 were comparable to Minnesota, the results suggest there were 2839 pediatric home care patients with tracheostomies not requiring iHMV and 9024 children receiving iHMV. CONCLUSIONS The population of tracheostomized children in Minnesota is expanding at a disproportionate rate relative to the population of children at large. This increase is predominantly associated with an increase in iHMV. Although the annual all-cause death rate has declined over the past decade, there was no change in the decannulation rate.
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Affiliation(s)
| | | | | | - Roy Maynard
- Pediatric Home Service, Roseville, Minnesota;
- Children's Minnesota (retired staff), Minneapolis, Minnesota; and
| | - Eric W Christensen
- Health Services Management, University of Minnesota, Minneapolis, Minnesota
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Orkin J, Beaune L, Moore C, Weiser N, Arje D, Rapoport A, Netten K, Adams S, Cohen E, Amin R. Toward an Understanding of Advance Care Planning in Children With Medical Complexity. Pediatrics 2020; 145:peds.2019-2241. [PMID: 32054820 DOI: 10.1542/peds.2019-2241] [Citation(s) in RCA: 43] [Impact Index Per Article: 8.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 11/04/2019] [Indexed: 11/24/2022] Open
Abstract
BACKGROUND AND OBJECTIVES Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
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Affiliation(s)
- Julia Orkin
- Complex Care Program, Division of Pediatric Medicine.,Department of Pediatrics and.,SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada
| | - Laura Beaune
- SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada
| | - Clara Moore
- Complex Care Program, Division of Pediatric Medicine.,SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada
| | | | - Danielle Arje
- Complex Care Program, Division of Pediatric Medicine.,Michael G. DeGroote School of Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Canada
| | - Adam Rapoport
- Department of Pediatrics and.,Pediatric Advance Care Team, Department of Pediatrics and.,Emily's House Children's Hospice, Toronto, Canada
| | - Kathy Netten
- Complex Care Program, Division of Pediatric Medicine
| | - Sherri Adams
- Complex Care Program, Division of Pediatric Medicine.,SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
| | - Eyal Cohen
- Complex Care Program, Division of Pediatric Medicine.,Department of Pediatrics and.,SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada
| | - Reshma Amin
- Department of Pediatrics and .,SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada.,Division of Respiratory Medicine, and
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Sobotka SA, Lynch E, Quinn MT, Awadalla SS, Agrawal RK, Peek ME. Unmet Respite Needs of Children With Medical Technology Dependence. Clin Pediatr (Phila) 2019; 58:1175-1186. [PMID: 31502488 PMCID: PMC7232777 DOI: 10.1177/0009922819870251] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.
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Affiliation(s)
| | - Emma Lynch
- The University of Chicago, Chicago, IL, USA
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Pezeshkpour P, Armstrong NC, Mahant S, Muthusami P, Amaral JG, Parra DA, Temple MJ, Connolly BL. Evaluation of implanted venous port-a-caths in children with medical complexity and neurologic impairment. Pediatr Radiol 2019; 49:1354-1361. [PMID: 31302737 DOI: 10.1007/s00247-019-04470-w] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/11/2019] [Revised: 05/27/2019] [Accepted: 06/26/2019] [Indexed: 01/09/2023]
Abstract
BACKGROUND Children with medical complexity and associated neurologic impairment frequently face difficulties with venous access. Intermittently they require urgent intravenous administration of fluids and medication. OBJECTIVE To analyze the use of implanted port-a-caths in children with medical complexity who have neurologic impairment and difficult venous access. MATERIALS AND METHODS We performed a single-center observational study of port-a-caths placed by interventional radiologists in children with medical complexity with neurologic impairment. We analyzed peripheral intravenous access attempts, peripheral intravenous starts, peripheral intravenous complications, alternative temporary central venous access devices, port-a-cath insertions, catheter days, access days, port-a-cath-related complications, hospital admissions and emergency department visits. We compared the year pre port-a-cath to the year post port-a-cath. RESULTS Twenty-one children with medical complexity with neurologic impairment (10 boys, 11 girls; median age 4.1 years; median weight 13.7 kg) underwent 26 port-a-cath insertions (median catheter days 787). In the year post port-a-cath compared to pre port-a-cath there was a highly significant reduction (P<0.001) in numbers of peripheral intravenous attempts, peripheral intravenous starts and skin punctures; and a significant reduction (P<0.05) in need for other devices, number of emergency department visits, emergency department visits resulting in hospital admissions, and total admissions. Adverse events were graded as mild (n=18), moderate (n=6) and severe (n=0). CONCLUSION Port-a-cath placement in children with medical complexity with neurologic impairment significantly reduced all peripheral intravenous attempts, peripheral intravenous starts, skin punctures, total number of emergency department visits, visits culminating in admission, and total number of inpatient admissions. Advantages must be considered against potential port-a-cath-related adverse events.
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Affiliation(s)
- Paymun Pezeshkpour
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada. .,University of Toronto, Toronto, ON, Canada.
| | - Nicholas C Armstrong
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.,University of Limerick, Limerick, Ireland
| | - Sanjay Mahant
- Department of Pediatrics, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, Canada
| | - Prakash Muthusami
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.,University of Toronto, Toronto, ON, Canada
| | - Joao G Amaral
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.,University of Toronto, Toronto, ON, Canada
| | - Dimitri A Parra
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.,University of Toronto, Toronto, ON, Canada
| | - Michael J Temple
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.,University of Toronto, Toronto, ON, Canada
| | - Bairbre L Connolly
- Image Guided Therapy Centre, Diagnostic Imaging Department, The Hospital for Sick Children, 555 University Ave., Toronto, ON, M5G 1X8, Canada.,University of Toronto, Toronto, ON, Canada
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Feudtner C. The Precarious Imperative of Home Nursing for Technology-Dependent Children. J Pediatr 2019; 212:10-12. [PMID: 31277899 DOI: 10.1016/j.jpeds.2019.06.032] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/03/2019] [Accepted: 06/11/2019] [Indexed: 01/18/2023]
Affiliation(s)
- Chris Feudtner
- Children's Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
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40
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Foster CC, Kwon S, Whitlow L, Cullen JP, Agrawal RK, Goodman D, Davis MM. Connecting Hospital to Home: Characteristics of and Rehospitalization Rates in Hospitalized Children With Private-Duty Nursing. Hosp Pediatr 2019; 9:530-537. [PMID: 31189643 DOI: 10.1542/hpeds.2018-0282] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/24/2022]
Abstract
OBJECTIVES Children with medical complexity are frequently hospitalized and have extensive health care needs. Private-duty nursing (PDN) is a service on which some children with medical complexity rely to live at home, but little is known about patients discharged with PDN. Our objective for this study was to describe the characteristics and longitudinal outcomes of patients with PDN who are hospitalized. METHODS This study was a 1-year retrospective study of patients receiving PDN who were hospitalized at a quaternary freestanding children's hospital; there was an additional 2-year follow-up. Patient characteristics, rehospitalization rates, length of stay, mortality, and hospital charges were identified. Descriptive statistics were performed to characterize trends, and a time-to-event analysis was used to characterize unplanned rehospitalization. RESULTS Among 8187 unique patients who were hospitalized in the initial study year (June 1, 2014 to -May 31, 2015), 188 patients (2%) used PDN. Of patients using PDN, 94% used gastrointestinal devices. The median index length of stay was 4 days (interquartile range 2-6). Two-year mortality was 12%. Cumulative all-cause rehospitalization rates were 18% by 30 days, 62% by 365 days, and 87% within 2 years; the median rehospitalization frequency was 3 per patient. The most common reasons for unplanned rehospitalization were infection (41%) and device complication (10%). During the study period, 11% of both rehospitalizations and total hospital days were attributed to patients with PDN. Unplanned rehospitalizations of patients with PDN accounted for $117 million in hospital charges. CONCLUSIONS One in 50 patients hospitalized at a single center were discharged with PDN, which accounted for a disproportionate level of hospital use. Future research should be used to address whether the access and quality of PDN may impact rehospitalization.
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Affiliation(s)
- Carolyn C Foster
- Departments of Pediatrics, .,Mary Ann and J. Milburn Smith Child Health Research, Outreach, and Advocacy Center, and.,Divisions of Academic General Pediatrics and Primary Care
| | - Soyang Kwon
- Departments of Pediatrics.,Mary Ann and J. Milburn Smith Child Health Research, Outreach, and Advocacy Center, and
| | | | | | | | - Denise Goodman
- Departments of Pediatrics.,Critical Care, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois
| | - Matthew M Davis
- Departments of Pediatrics.,Mary Ann and J. Milburn Smith Child Health Research, Outreach, and Advocacy Center, and.,Divisions of Academic General Pediatrics and Primary Care.,Medicine.,Medical Social Sciences, and.,Preventive Medicine, Feinberg School of Medicine, Northwestern University, Chicago, Illinois; and
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Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence. Pediatr Crit Care Med 2019; 20:417-425. [PMID: 30676492 PMCID: PMC6502673 DOI: 10.1097/pcc.0000000000001868] [Citation(s) in RCA: 29] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
OBJECTIVES Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity and mortality compared with children without technology dependence. DESIGN Secondary analysis of prospective, probability-sampled cohort study of children from birth to 18 years old. Demographic and clinical characteristics were assessed. Outcomes included death, survival with new morbidity, intact survival, and survival with functional status improvement. SETTING General and cardiovascular PICUs at seven participating children's hospitals as part of the Trichotomous Outcome Prediction in Critical Care study. SUBJECTS Children from birth to 18 years of age as part of the Trichotomous Outcome Prediction in Critical Care study. INTERVENTIONS None. MEASUREMENTS AND MAIN RESULTS Children with technology dependence composed 19.7% (1,989/10,078) of PICU admissions. Compared with those without these forms of technology dependence, these children were younger, received more ICU-specific therapeutics, and were more frequently readmitted to the ICU. Death occurred in 3.7% of technology-dependent patients (n = 74), and new morbidities developed in 4.5% (n = 89). Technology-dependent children who developed new morbidities had higher Pediatric Risk of Mortality scores and received more ICU therapies than those who did not. A total of 3.0% of technology-dependent survivors (n = 57) showed improved functional status at hospital discharge. CONCLUSIONS Children with feeding and respiratory technology dependence composed approximately 20% of PICU admissions. Their new morbidity rates are similar to those without technology dependence, which contradicts our hypothesis that children with technology dependence would demonstrate worse outcomes. These comparable outcomes, however, were achieved with additional resources, including the use of more ICU therapies and longer lengths of stay. Improvement in functional status was seen in some technology-dependent survivors of critical illness.
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Notario PM, Gentile E, Amidon M, Angst D, Lefaiver C, Webster K. Home-Based Telemedicine for Children with Medical Complexity. Telemed J E Health 2019; 25:1123-1132. [PMID: 30628860 PMCID: PMC6842894 DOI: 10.1089/tmj.2018.0186] [Citation(s) in RCA: 43] [Impact Index Per Article: 7.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/12/2022] Open
Abstract
Background: Children with medical complexity (CMC) are high utilizers of health care services. Telehealth encounters may provide a means to improve care outcomes for this population. Objective: To evaluate the feasibility, usability, and impact of an in-home telehealth device in the care of CMC. Methods: This single-center feasibility study employed a nonblinded randomized clinical trial design. English-speaking caregivers of children within a pediatric complex care program with home Wi-Fi were eligible for participation. Participants were randomized 1.5:1 with stratification based on tracheostomy status to a control group that received usual care or an intervention group that received a telehealth device for in-home use. Patients were followed up for 4 months. The primary outcome was successful device connectivity and data transmission. Data included clinician encounter device usability; caregiver satisfaction; and encounter type, purpose, and cost. Descriptive statistics, negative binomial regression, and Kaplan–Meier plot were used for analysis. Results: Twenty-four patients were enrolled (9 controls, 15 in the intervention group) in September 2016. The telehealth device was attempted in 73 encounters. Device connectivity was successful 96% of the time. Image and sound quality were acceptable in 98% of visits. Caregivers expressed their overall satisfaction with the device. The hospitalization rate was lower in the intervention group (0.77 vs. 1.14 intensive care unit days/patient-months), resulting in $9,425/USD per patient savings compared with the control group. Conclusion: Despite small sample size and short observation period, this study demonstrated that use of an in-home telehealth device is feasible, well received by caregivers, and can result in decreased hospitalizations when compared with usual care.
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Sobotka SA, Gaur DS, Goodman DM, Agrawal RK, Berry JG, Graham RJ. Pediatric patients with home mechanical ventilation: The health services landscape. Pediatr Pulmonol 2019; 54:40-46. [PMID: 30461228 PMCID: PMC7286281 DOI: 10.1002/ppul.24196] [Citation(s) in RCA: 48] [Impact Index Per Article: 8.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/16/2018] [Accepted: 10/29/2018] [Indexed: 11/09/2022]
Abstract
OBJECTIVE Children with invasive home mechanical ventilation (HMV) are a growing population with complex health service needs. Single institution studies provide insight into successful program structures and outcomes. Our study objectives were to assess health service structures, providers, and programs caring for this population throughout the U.S., and to understand barriers to high-quality care. DESIGN Using purposeful sampling with capture-recapture and snowball sampling methods, we identified key informants for care of the U.S. pediatric HMV population. Informants received web-based surveys with two reminders. Survey domains included respondent characteristics, HMV team composition, and barriers to care. RESULTS Survey response was 71% with 101 completed. Respondents caring for patients in 45 states included physicians (61%), nurses (20%), therapists (12%), case managers (4%), and social workers (2%). Half (53%) of physicians were fellowship trained, most commonly pulmonology (22%) and critical care medicine (13%). The majority (65%) of providers described a dedicated HMV service. The majority (61%) of respondents from a HMV service provided both inpatient and outpatient care. Nearly all respondents (96%) described an inadequate supply of home nurses and 88% reported inadequate respite facilities. CONCLUSIONS Children with HMV assistance receive care from a diverse group of providers with varied team structure. Heterogeneity may reflect patient diversity and provider interest, increasing efficacy but challenging standardization nationwide. Despite team structure variability, similar home care difficulties were universally experienced. Data suggest that the home nursing shortage is a national impediment to quality and efficient discharge with limited community-based support for this vulnerable population.
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Affiliation(s)
- Sarah A Sobotka
- Section of Developmental and Behavioral Pediatrics, The University of Chicago, Chicago, Illinois
| | | | - Denise M Goodman
- Division of Pediatric Critical Care Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Rishi K Agrawal
- Division of Hospital-Based Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois
| | - Jay G Berry
- Division of General Pediatrics, Boston Children's Hospital, Boston, Massachusetts
| | - Robert J Graham
- Critical Care Medicine, Boston Children's Hospital, Boston, Massachusetts
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Maynard R, Christensen E, Cady R, Jacob A, Ouellette Y, Podgorski H, Schiltz B, Schwantes S, Wheeler W. Home Health Care Availability and Discharge Delays in Children With Medical Complexity. Pediatrics 2019; 143:peds.2018-1951. [PMID: 30509929 DOI: 10.1542/peds.2018-1951] [Citation(s) in RCA: 79] [Impact Index Per Article: 13.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 09/28/2018] [Indexed: 11/24/2022] Open
Abstract
UNLABELLED : media-1vid110.1542/5849572914001PEDS-VA_2018-1951Video Abstract BACKGROUND: An increasing proportion of pediatric hospital days are attributed to technology-dependent children. The impact that a pediatric home care nursing (HCN) shortage has on increasing length of hospital stay and readmissions in this population is not well documented. METHODS We conducted a 12-month multisite prospective study of children with medical complexity discharging with home health. We studied the following 2 cohorts: new patients discharging for the first time to home nursing and existing patients discharging from the hospital to previously established home nursing. A modified delay tool was used to categorize causes, delayed discharge (DD) days, and unplanned 90-day readmissions. RESULTS DD occurred in 68.5% of 54 new patients and 9.2% of 131 existing patients. Lack of HCN was the most frequent cause of DD, increasing costs and directly accounting for an average length of stay increase of 53.9 days (range: 4-204) and 35.7 days (3-63) for new and existing patients, respectively. Of 1582 DDs, 1454 (91.9%) were directly attributed to lack of HCN availability. DD was associated with younger age and tracheostomy. Unplanned 90-day readmissions were due to medical setbacks (96.7% of cases) and occurred in 53.7% and 45.0% of new and existing patients, respectively. CONCLUSIONS DD and related costs are primarily associated with shortage of HCN and predominantly affect patients new to HCN. Medical setbacks are the most common causes of unplanned 90-day readmissions. Increasing the availability of home care nurses or postacute care facilities could reduce costly hospital length of stay.
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Affiliation(s)
- Roy Maynard
- Children's Minnesota, Minneapolis, Minnesota; .,Pediatric Home Service, Roseville, Minnesota
| | - Eric Christensen
- College of Continuing and Professional Studies, Health Services Management, University of Minnesota, St Paul, Minnesota
| | - Rhonda Cady
- Gillette Children's Specialty Healthcare, St Paul, Minnesota
| | - Abraham Jacob
- University of Minnesota Masonic Children's Hospital, Minneapolis, Minnesota; and
| | | | - Heather Podgorski
- University of Minnesota Masonic Children's Hospital, Minneapolis, Minnesota; and
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Nackers A, Ehlenbach M, Kelly MM, Werner N, Warner G, Coller RJ. Encounters From Device Complications Among Children With Medical Complexity. Hosp Pediatr 2018; 9:6-15. [PMID: 30530805 DOI: 10.1542/hpeds.2018-0103] [Citation(s) in RCA: 23] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/08/2023]
Abstract
OBJECTIVES Children with medical complexity (CMC) are commonly assisted by medical devices to support essential body functions, although complications may lead to preventable emergency department (ED) and hospital use. Our objective was to identify predictors of device-complicated ED visits and hospitalizations. METHODS This single-center retrospective cohort study included patients referred to a Pediatric Complex Care Program between April 1, 2014, and April 30, 2016, assisted by at least 1 medical device. Hospitalizations and ED visits in the year before enrollment were rated for likelihood for being due to device complications. Interrater reliability among 3 independent reviewers was assessed. Bivariate followed by multivariate logistic regression clustered by patient helped us identify associations between demographic, clinical, and device characteristics associated with device-complicated ED or hospital encounters. RESULTS Interrater reliability was high (κ = 0.92). Among 98 CMC, device-complicated encounters represented 17% of 258 hospitalizations and 31% of 228 ED visits. Complications of 3 devices (central venous catheters, enteral tubes, and tracheostomy tubes) accounted for 13% of overall hospitalizations and 28% of overall ED visits. Central venous catheter presence (adjusted odds ratio [aOR] 3.2 [95% confidence interval (CI) 1.1-9.5]) was associated with device-complicated ED visits. Gastrojejunostomy/jejunostomy tube presence (aOR 3.3 [95% CI 1.5-7.5]) or tracheostomies with (aOR 8.1 [95% CI 2.3-28.5]) or without (aOR 4.5 [95% CI 1.7-7.5]) ventilator use was associated with device-complicated hospitalizations. Clinical variables were poor predictors of device-complicated encounters. CONCLUSIONS Device-complicated ED visits and hospitalizations comprised a substantial proportion of total hospital and ED use. Developing interventions to prevent device complications may be a promising strategy to reduce overall CMC use.
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Affiliation(s)
- Allison Nackers
- Department of Pediatrics, School of Medicine and Public Health
| | - Mary Ehlenbach
- Department of Pediatrics, School of Medicine and Public Health
| | - Michelle M Kelly
- Department of Pediatrics, School of Medicine and Public Health.,Center for Quality and Productivity Improvement, and
| | - Nicole Werner
- Center for Quality and Productivity Improvement, and.,Department of Industrial and Systems Engineering, University of Wisconsin-Madison, Madison, Wisconsin
| | - Gemma Warner
- Department of Pediatrics, School of Medicine and Public Health
| | - Ryan J Coller
- Department of Pediatrics, School of Medicine and Public Health,
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Nageswaran S, Golden SL, Gower WA, King NM. Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity. J Pediatr 2018; 203:354-360.e1. [PMID: 30236548 PMCID: PMC6252133 DOI: 10.1016/j.jpeds.2018.07.045] [Citation(s) in RCA: 42] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/24/2018] [Revised: 06/22/2018] [Accepted: 07/11/2018] [Indexed: 10/28/2022]
Abstract
OBJECTIVE To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN In this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated. In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded, and transcribed verbatim. We used ATLAS.ti software to manage data and identified themes related to caregiver perceptions about tracheostomy decision. RESULTS We found that caregivers often chose tracheostomy because extending the lives of their children and being able to care for them at home were important. Caregivers reported the many benefits of tracheostomy including improvement in respiratory symptoms, physical and developmental health, quality of life, and means to provide medical care quickly when needed. There were negative effects of tracheostomy such as mucous plugs, excessive secretions, accidental decannulation necessitating emergency tracheostomy tube change, and the increased infection risk. Providing medical care for CMC with tracheostomy at home was difficult, but improved over time. Caregivers were generally satisfied with their decision to pursue tracheostomy for their CMC. CONCLUSIONS Decisional satisfaction with tracheostomy for CMC is high. In counseling caregivers about tracheostomy, clinicians should present both the benefits and risks. Future studies should quantify the outcomes described in this study.
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Affiliation(s)
- Savithri Nageswaran
- Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC.
| | - Shannon L. Golden
- Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston-Salem, NC
| | - W. Adam Gower
- * Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC
| | - Nancy M.P. King
- Department of Social Sciences & Health Policy, Wake Forest School of Medicine, Winston-Salem, NC
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Rehm KP, Brittan MS, Stephens JR, Mummidi P, Steiner MJ, Gay JC, Ayubi SA, Gujral N, Mittal V, Dunn K, Chiang V, Hall M, Blaine K, O'Neill M, McBride S, Rogers J, Berry JG. Issues Identified by Postdischarge Contact after Pediatric Hospitalization: A Multisite Study. J Hosp Med 2018; 13:236-242. [PMID: 29394301 DOI: 10.12788/jhm.2934] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
Abstract
BACKGROUND Many hospitals are considering contacting hospitalized patients soon after discharge to help with issues that arise. OBJECTIVE To (1) describe the prevalence of contactidentified postdischarge issues (PDI) and (2) assess characteristics of children with the highest likelihood of having a PDI. DESIGN, SETTING, PATIENTS A retrospective analysis of hospital-initiated follow-up contact for 12,986 children discharged from January 2012 to July 2015 from 4 US children's hospitals. Contact was made within 14 days of discharge by hospital staff via telephone call, text message, or e-mail. Standardized questions were asked about issues with medications, appointments, and other PDIs. For each hospital, patient characteristics were compared with the likelihood of PDI by using logistic regression. RESULTS Median (interquartile range) age of children at admission was 4.0 years (0-11); 59.9% were nonHispanic white, and 51.0% used Medicaid. The most common reasons for admission were bronchiolitis (6.3%), pneumonia (6.2%), asthma (5.1%), and seizure (4.9%). Twenty-five percent of hospitalized children (n=3263) reported a PDI at contact (hospital range: 16.0%-62.8%). Most (76.3%) PDIs were related to follow-up appointments (eg, difficulty getting one); 20.8% of PDIs were related to medications (eg, problems filling a prescription). Patient characteristics associated with the likelihood of PDI varied across hospitals. Older age (age 10-18 years vs <1 year) was significantly (P<.001) associated with an increased likelihood of PDI in 3 of 4 hospitals. CONCLUSIONS PDIs were identified often through hospital-initiated follow-up contact. Most PDIs were related to appointments. Hospitals caring for children may find this information useful as they strive to optimize their processes for follow-up contact after discharge.
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Affiliation(s)
- Kris P Rehm
- Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee, USA.
- Vanderbilt University School of Medicine, Nashville, Tennessee, USA
| | - Mark S Brittan
- Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado, USA
| | - John R Stephens
- North Carolina Children's Hospital, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA
| | - Pradeep Mummidi
- Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee, USA
| | - Michael J Steiner
- North Carolina Children's Hospital, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA
| | - James C Gay
- Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee, USA
- Vanderbilt University School of Medicine, Nashville, Tennessee, USA
| | | | - Nitin Gujral
- Boston Children's Hospital, Boston, Massachusetts, USA
| | - Vandna Mittal
- Boston Children's Hospital, Boston, Massachusetts, USA
| | - Kelly Dunn
- Boston Children's Hospital, Boston, Massachusetts, USA
| | - Vincent Chiang
- Boston Children's Hospital, Boston, Massachusetts, USA
- Harvard Medical School, Boston, Massachusetts, USA
| | - Matt Hall
- Children's Hospital Association, Overland Park, Kansas, USA
| | - Kevin Blaine
- Boston Children's Hospital, Boston, Massachusetts, USA
| | | | - Sarah McBride
- Boston Children's Hospital, Boston, Massachusetts, USA
- Harvard Medical School, Boston, Massachusetts, USA
| | - Jayne Rogers
- Boston Children's Hospital, Boston, Massachusetts, USA
| | - Jay G Berry
- Boston Children's Hospital, Boston, Massachusetts, USA
- Harvard Medical School, Boston, Massachusetts, USA
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Ten Haken I, Ben Allouch S, van Harten WH. The use of advanced medical technologies at home: a systematic review of the literature. BMC Public Health 2018; 18:284. [PMID: 29482550 PMCID: PMC6389044 DOI: 10.1186/s12889-018-5123-4] [Citation(s) in RCA: 35] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/03/2017] [Accepted: 01/26/2018] [Indexed: 11/30/2022] Open
Abstract
Background The number of medical technologies used in home settings has increased substantially over the last 10–15 years. In order to manage their use and to guarantee quality and safety, data on usage trends and practical experiences are important. This paper presents a literature review on types, trends and experiences with the use of advanced medical technologies at home. Methods The study focused on advanced medical technologies that are part of the technical nursing process and ‘hands on’ processes by nurses, excluding information technology such as domotica. The systematic review of literature was performed by searching the databases MEDLINE, Scopus and Cinahl. We included papers from 2000 to 2015 and selected articles containing empirical material. Results The review identified 87 relevant articles, 62% was published in the period 2011–2015. Of the included studies, 45% considered devices for respiratory support, 39% devices for dialysis and 29% devices for oxygen therapy. Most research has been conducted on the topic ‘user experiences’ (36%), mainly regarding patients or informal caregivers. Results show that nurses have a key role in supporting patients and family caregivers in the process of homecare with advanced medical technologies and in providing information for, and as a member of multi-disciplinary teams. However, relatively low numbers of articles were found studying nurses perspective. Conclusions Research on medical technologies used at home has increased considerably until 2015. Much is already known on topics, such as user experiences; safety, risks, incidents and complications; and design and technological development. We also identified a lack of research exploring the views of nurses with regard to medical technologies for homecare, such as user experiences of nurses with different technologies, training, instruction and education of nurses and human factors by nurses in risk management and patient safety.
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Affiliation(s)
- Ingrid Ten Haken
- Saxion University of Applied Sciences, Research Group Technology, Health & Care (TH&C), P.O. Box 70.000, 7500, KB, Enschede, The Netherlands.
| | - Somaya Ben Allouch
- Saxion University of Applied Sciences, Research Group Technology, Health & Care (TH&C), P.O. Box 70.000, 7500, KB, Enschede, The Netherlands
| | - Wim H van Harten
- Department Health Technology & Services Research (HTSR), University of Twente, Faculty Behavioural, Management and Social Sciences (BMS), Ravelijn 5246, P.O. Box 217, 7500, AE, Enschede, The Netherlands.,Rijnstate General Hospital, Arnhem, The Netherlands
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49
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Amin R, Holler T, Narang I, Cushing SL, Propst EJ, Al-Saleh S. Adenotonsillectomy for Obstructive Sleep Apnea in Children with Complex Chronic Conditions. Otolaryngol Head Neck Surg 2017; 158:760-766. [PMID: 29232179 DOI: 10.1177/0194599817746959] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
Objective To estimate the prevalence of persistent obstructive sleep apnea postadenotonsillectomy in children with complex chronic conditions. Study Design A retrospective cohort study. Setting The Hospital for Sick Children Sleep laboratory. Subjects Children ≤18 years of age who had moderate to severe obstructive sleep apnea and had polysomnography pre- and postadenotonsillectomy. Methods Medical and polysomnographic data were reviewed. The prevalence of persistent obstructive sleep apnea postadenotonsillectomy was determined for the following groups: no complex chronic conditions, single-system complex chronic conditions, and multisystem complex chronic conditions. Results We reviewed data of 133 (84 male) children. Their mean (standard deviation) age was 5.5 (3.8) years. The persistent obstructive sleep apnea rate postadenotonsillectomy was highest in children with multisystem complex chronic conditions (57%), intermediate in children with single-system complex chronic conditions (29%), and lowest in children without complex chronic conditions (15%), P = .0004. The odds (confidence interval) of having persistent obstructive sleep apnea postadenotonsillectomy was 7.42 (2.16-25.51) times higher in children with multisystem complex chronic conditions vs no complex chronic conditions and 3.35 (1.16-9.64) times higher in children with multisystem complex chronic conditions vs single-system complex chronic conditions. Conclusions Although adenotonsillectomy is considered first-line therapy in healthy children older than 2 years for the treatment of obstructive sleep apnea, there is a significantly greater risk of persistent obstructive sleep apnea postadenotonsillectomy in children with complex chronic conditions. Therefore, other surgical procedures or nonsurgical management may need to be considered as first-line treatment for this cohort.
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Affiliation(s)
- Reshma Amin
- 1 Division of Respiratory Medicine, Hospital for Sick Children, Toronto, Ontario, Canada.,2 University of Toronto, Toronto, Ontario, Canada
| | - Theresa Holler
- 2 University of Toronto, Toronto, Ontario, Canada.,3 Department of Otolaryngology-Head and Neck Surgery, Hospital for Sick Children, Toronto, Ontario, Canada
| | - Indra Narang
- 1 Division of Respiratory Medicine, Hospital for Sick Children, Toronto, Ontario, Canada.,2 University of Toronto, Toronto, Ontario, Canada
| | - Sharon L Cushing
- 2 University of Toronto, Toronto, Ontario, Canada.,3 Department of Otolaryngology-Head and Neck Surgery, Hospital for Sick Children, Toronto, Ontario, Canada
| | - Evan J Propst
- 2 University of Toronto, Toronto, Ontario, Canada.,3 Department of Otolaryngology-Head and Neck Surgery, Hospital for Sick Children, Toronto, Ontario, Canada
| | - Suhail Al-Saleh
- 1 Division of Respiratory Medicine, Hospital for Sick Children, Toronto, Ontario, Canada.,2 University of Toronto, Toronto, Ontario, Canada
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50
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Randall DC. Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child. Compr Child Adolesc Nurs 2017; 40:257-267. [PMID: 29125321 DOI: 10.1080/24694193.2017.1376360] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Abstract
Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their families. In most cases this means the child's carers, their parents, most often their mothers, are required to undertake a great deal of the child's care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state's responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children's care. I use Margret Urban Walker's ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child's life and their death.
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Affiliation(s)
- Duncan C Randall
- a Faculty of Health Sciences , University of Southampton , Southampton , United Kingdom
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