Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)
Outcomes: 1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families 2. Identify the stages of life for a patient with severe neurologic impairment and parental needs at all stages Design thinking methodology is powered by empathizing with patient/family experiences to articulate meaningful problems, distill themes to ideate solutions, and frame and design plans to implement solutions. In 2020, the palliative care team at Cincinnati Children's Hospital Medical Center (CCHMC) worked with a team from the Live Well Collaborative (LWC) to apply design thinking methodology to pediatric palliative care. The LWC is a nonprofit organization whose purpose is to apply design thinking methodology to co-create innovations aimed at improving health. Interviews of palliative care patients and their caregivers revealed an unmet need for patient- and family-centered educational tools to help visualize disease trajectory, improve patient and parent agency with medical recommendations, and improve quality of life and future planning. In response, a web-based Journey Map application was created. In 2021, the LWC team focused the Journey Map tool for use by families of children with severe neurologic impairment (SNI) that 1) maps points in the trajectory of a patient with SNI across their lifespan, 2) visualizes and explains the medical stages of SNI, 3) focuses on parental psychosocial support and needs, and 4) infuses the palliative care voice and concepts throughout. As the SNI Journey Map was created, CCHMC partnered with Courageous Parents Network, a nonprofit organization dedicated to supporting parents of children with serious illness, and Dr. Julie Hauer, a pediatric palliative care physician specializing in the care of children with SNI, to ensure that the Journey Map tool would be truly parent-focused and reach the greatest audience of parents and clinicians nationally. The Journey Map tool is the result of an innovative collaboration between academic and private palliative care clinicians, local and national nonprofit organizations, and parents. This unique tool will be hosted on the Courageous Parents Network website for perpetuity.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
From Monochromatic to Technicolor: Parent Perspectives on Challenges and Approaches to Seeing Children with Severe Neurological Impairment Holistically
Creator
Bogetz JF; Lewis H; Trowbridge A; Jonas D; Hauer J; Wilfond BS
Background: Children with severe neurological impairment (SNI) commonly receive care in the hospital setting necessitating frequent interactions with clinicians. Yet, parents report that clinicians often have a limited understanding of their child's unique needs and abilities which hinders their care. Objectives: This study aimed to understand the challenges and suggested approaches parents identified to seeing their child holistically. Design: Cross-sectional qualitative study. Setting/Subjects: Parents/legal guardians of children with SNI at a tertiary pediatric academic center in the United States completed 1:1 interviews between August 2019 and February 2020. Measurements: Qualitative researchers with expertise in care for children with SNI, palliative care, and bioethics used thematic content analysis to inductively analyze data for relevant themes. Results: Twenty-five parents/legal guardians of 23 children with SNI participated. Sixty-eight percent were mothers and 24% were fathers; and 68% were white. Thirty-two percent were from other racial and/or ethnic backgrounds. Children predominantly had congenital/chromosomal (n = 15, 65%) and central nervous system static (n = 6, 26%) SNI diagnoses. Four themes emerged regarding both challenges and approaches to understanding children with SNI holistically. These included uniqueness, interdependency, complexity, and universality. Parents felt that by eliciting and incorporating their perspective on these sometimes contrasting but inherently necessary aspects of their child's care, clinicians would understand their children more fully. Conclusion: By viewing the child through the prismed lens of parents, participants described how clinicians could transition from a monochromatic to a technicolor view of their child-including the inherent contrasting needs required for their comprehensive care.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. OBJECTIVE: 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-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. CONCLUSIONS: 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.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet goals. * Utilize language strategies that prepare families when prognosis is not possible. Little is written about trajectories and features that precede death in those with childhood onset severe central nervous system (CNS) impairment. This session will cover this topic through a review of deaths at a long-term care facility for children and young adults with severe neurological impairment and associated complex medical care needs. Of the more than 30 deaths, the majority (70%) were anticipated and guided by goals of care. Circumstances that prompted discussions included: problems that can be attributed to the CNS and remained intractable to various interventions, including seizures, recurrent intestinal pseudo-obstruction (hypothalamus and medulla), pain (thalamus), agitation (loss of CNS inhibition), and edema (medulla); increasing symptom burden; and gradual changes in alertness and ability to participate in activities. Details that preceded unexpected deaths will also be reviewed, including several with acute ileus who died following transfer to a hospital. Details will include: the length of time from the redirection of care plans until death, symptom management at the end-of-life, results of tests, prolonged survival following discontinuation of mechanical ventilation, changes in medical nutrition and hydration, and differences in planned vs unexpected deaths. Outcomes in those who survived using the same noninvasive management strategies will be included given the lack of prognostic ability, a time when parents were prepared for their child's potential death, and how parents responded before and after this experience. This is an important session given the lack of prognostic information, placing such individuals at significant risk for invasive testing and interventions, including surgery, at the end of life. Consideration of testable and "fixable" problems versus problems that can be due to the CNS without confirmatory tests will be discussed. This information will be used to outline "tipping points" that can prompt anticipatory discussions with parents and guardians, with suggested language offered.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
autonomic dysfunction; central nervous system; central neuropathic pain; Child; Disability; Feeding intolerance; neurological impairment; Only Child; Pediatric; pediatric palliative care; retching; symptom management; visceral hyperalgesia
Description
Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms include constipation and gastroesophageal reflux disease. There is growing awareness of sources due to the impaired nervous system, including visceral hyperalgesia due to sensitization of sensory neurons in the enteric nervous system and central neuropathic pain due to alterations in the thalamus. Challenging the management of these symptoms is the lack of tests to confirm alterations in the nervous system as a cause of symptom generation, requiring empirical trials directed at such sources. It is also common to have multiple reasons for the observed symptoms, further challenging management. Recurrent emesis and GI tract pain can often be improved, though in some not completely eliminated. In some, this can progress to intractable feeding intolerance. This comprehensive review provides an evidence-based approach to care, a framework for recurrent symptoms, and language strategies when symptoms remain intractable to available interventions. This summary is intended to balance optimal management with a sensitive palliative care approach to persistent GI symptoms in children with severe impairment of the CNS.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System
Creator
Hauer J; Houtrow AJ
Identifier
10.1542/peds.2017-1002
Publisher
Pediatrics
Date
2017
Subject
Analgesics/ Therapeutic Use; Autistic Disorder/ Complications; Benzodiazepines/therapeutic Use; Cerebral Palsy/ Complications; Child; Conflicts Of Interest To Disclose.; Drug Therapy Combination; Humans; Intellectual Disability/ Complications; Pain/complications/diagnosis/ Drug Therapy; Pain Management/ Methods; Pain Measurement/ Methods
Description
Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, alpha-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Citation List Month
November 2017 List
Notes
1098-4275 Hauer, Julie Houtrow, Amy J Section on hospice and palliative medicine, council on children with disabilities Journal Article Review United States Pediatrics. 2017 Jun;139(6). pii: e20171002. doi: 10.1542/peds.2017-1002.