These training recommendations will help pediatric registered nurses (RNs) address the unique needs of pediatric patients (operationally defined as neonates, perinates, infants, children, adolescents, and young adults) living with serious illness, and their families[1].

Foundational Skills for All Pediatric RNs

Examples include clinicians working in primary care, acute care settings, neurology, or pulmonology


Assess the Needs and Concerns of Pediatric Patients and Families

  • Know what palliative care is, and how and when to request a consult
  • Assess pediatric patients’ physical, mental, social, and spiritual well-being at all stages of disease using developmentally- and culturally-appropriate methods
  • Screen for common symptoms and advocate with team for effective management
  • Screen for polypharmacy
  • Screen for communication barriers for patients and families

Strengthen the Care Team, Patient, and Family Relationship, and Understand Goals of Care

  • Identify pediatric patients’ surrogate decision-maker(s), if not the parents
  • Support shared decision-making that is aligned with patients’ and families’ values and preferences; ensure that pediatric patients have a voice in the discussion, as developmentally appropriate
  • Identify how social determinants of health[2] influence pediatric patients’ and their families’ decision-making in the context of a serious illness, and deliver responsive, unbiased care matched to needs and priorities
  • Identify patients who are eligible for hospice, including concurrent care[3], and support them to make the decision whether to enroll; anticipate and help navigate health system barriers

Manage Pain and Symptoms

  • Manage the implementation of treatments for common symptoms associated with serious illness
  • Assess the feasibility and safety of the care plan with pediatric patients and families
  • Identify pediatric patients who would benefit from a specialty pediatric palliative care consult for complex or intractable symptoms, and discuss with the lead provider, care team, community partners, and/or any other provider in the patient’s “network”

Prevent Crises and Plan Ahead

  • Recognize non-physical sources of distress, and recommend community-based palliative care, social work, behavioral health, and/or spiritual support
  • Assess function and refer for a home safety accessibility evaluation as needed
  • Screen for polypharmacy and work with team to consider deprescribing

Additional Skills for Pediatric RNs Who Focus Primarily on Supporting Pediatric Patients with Serious Illness and/or Complex Needs

Examples include clinicians working in neonatology, complex care, or oncology across care settings


Assess the Needs and Concerns of Pediatric Patients and Families

  • Recognize common sources of distress for pediatric patients with serious illness and/or complex needs
  • Collect data using developmentally- and culturally-appropriate tools that include:
    • Social factors encompassing social determinants of health and family functioning
    • Care coordination
    • Emotional and spiritual distress
    • Need for adaptive equipment and home care delivery supplies

Strengthen the Care Team, Patient, and Family Relationship, and Understand Goals of Care

  • Elicit goals, values, preferences, and concerns of families and pediatric patients, provided this approach is culturally acceptable and aligned with the family system
  • Facilitate and participate in conversations with patients and families about what to expect, and advocate on behalf of patients’ values and preferences
  • Balance autonomy of pediatric patients in the context of serious illness treatment with respect for decision-maker(s) choice for communication with pediatric patients
  • Support care coordination across the health care continuum
  • Participate in culturally-sensitive advance care planning conversations and complete advance directives if desired; facilitate documentation sharing with extended care team

Manage Pain and Symptoms

  • Anticipate the full spectrum of symptoms related to specific serious illnesses or conditions along the trajectory
  • Consult with or refer patients to palliative care specialists when implementation of first-line treatments according to the palliative care plan have not been effective at managing symptoms; be familiar with alternative and integrative therapies to discuss with the care team
  • Develop the treatment plan to incorporate the values, meaning, and priorities of pediatric patients and family systems, including siblings, to provide person-centered, family-focused, and culturally-congruent care
  • Assist with ensuring that care plans are communicated across the continuum of a patient’s care
  • Assist with education and training for inpatient, home health, and hospice nursing personnel to facilitate their comfort level in the provision of high-quality care for pediatric patients

Prevent Crises and Plan Ahead

  • Identify community resources that can support pediatric patients living with serious or complex illness, and their siblings and caregivers
  • Identify barriers to meeting pediatric patients’ and family needs and honoring their priorities, and discuss least restrictive alternatives
Learning Pathways for Pediatric Clinicians

Complete these Learning Pathways to acquire the skills in CAPC's pediatric clinical training recommendations.

View Learning Pathways

Notes

  1. a "Families" is operationally defined to include the adult(s) in the pediatric patient’s support system that oversee and/or contribute to the patient’s care (including parents and other caregivers who may or may not be related by blood).
  2. a Defined as “The conditions in which people are born, grow, live, work, and age. These circumstances are shaped by the distribution of money, power, and resources at global, national, and local levels. The social determinants of health are mostly responsible for health inequities, the unfair and avoidable differences in health status seen within and between countries."
  3. a Provision in the Affordable Care Act that allows children with life-threatening health problems who are enrolled in Medicaid to get both curative treatment that focuses on curing a health condition and hospice care.

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