Clinical Training Recommendations for Pediatric Social Workers Caring for Patients with Serious Illness

These training recommendations will help pediatric social workers 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 Social Workers

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
  • Assess caregiving needs and resources

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

  • Identify pediatric patients’ surrogate decision-maker(s), if not the parents
  • Conduct developmentally- and culturally-appropriate conversations with pediatric patients and families to understand what matters most to them
  • 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
  • Ensure siblings’ needs are addressed through the plan of care
  • Conduct culturally-sensitive advance care planning conversations and complete advance directives, if desired; facilitate documentation sharing with extended care team
  • 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

  • Using developmentally- and culturally-appropriate tools, assess and address the distress caused by common symptoms associated with serious illness
  • Assess the feasibility and safety of the care plan with pediatric patients and families
  • Assess and identify cognitive impairment
  • Identify pediatric patients who would benefit from a specialty pediatric palliative care consult for complex or intractable symptoms, and refer or discuss with the lead provider, care team, community partners, and/or any other provider in the patient’s “network”

Prevent Crises and Plan Ahead

  • Collaborate in planning to return to the community from non-home settings, with consideration for continuity of care across settings
  • When necessary, advocate for resources and care on behalf of pediatric patients and families and/or empower them to play a role in this advocacy
  • Recognize non-physical sources of distress, and collaborate with community-based palliative care, behavioral health, and/or spiritual support
  • Assess functioning, including mental health status of all family members
  • Refer patients for a home safety accessibility evaluation as needed
  • Work with the patient (as appropriate) and caregivers to ensure medication safety in the home
  • Revisit hospice eligibility as appropriate

Additional Skills for Pediatric Social Workers 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
  • Perform a comprehensive assessment using developmentally- and culturally-appropriate tools that includes:
    • Social factors encompassing social determinants of health and family functioning
    • Care coordination
    • Emotional and spiritual distress
    • Physical symptom distress
    • Communication challenges for patients and families
    • Need for adaptive equipment and home care delivery of supplies
    • Pediatric patient education

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
  • Balance autonomy of pediatric patients in the context of serious illness with respect for families’ choice for communication with the pediatric patients
  • Conduct skilled conversations with patients and families about matters specific to serious illness/complex care
  • Provide developmentally- and culturally-appropriate psychoeducation and clinical interventions to pediatric patients and family/caregivers regarding coping with serious illness
  • Coordinate care across the health care continuum

Manage Pain and Symptoms

  • Anticipate and address the full spectrum of symptoms related to specific serious illnesses or conditions along the trajectory
  • 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
  • Assess for/understand the role of integrative therapies in pediatric patients’ care plan and be prepared to advocate on behalf of the patient

Prevent Crises and Plan Ahead

  • Identify community resources that can support pediatric patients living with serious or complex illness, and their siblings and caregivers
  • Assist with obtaining access to the least restrictive educational environment, advocate for medication and resuscitation needs in school settings
  • Identify barriers to meeting pediatric patients’ and families’ needs and honoring their priorities, and discuss least restrictive alternatives
  • Assess for and develop a crisis intervention plan, including suicide prevention for all family members
  • In the case of terminal illness, collaborate with members of the care team to prepare pediatric patients and their family members for expected course of decline and provide psychoeducation about the range of normative emotional reactions
  • Provide guidance on anticipatory grief, and connect family with grief/bereavement resources as needed
Learning Pathways for Pediatric Clinicians

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

View Learning Pathways

Thank you to the following clinicians for their review of these recommendations: Stacy Orloff, EdD, LCSW, ACHP-SW; Arika Patneaude, MSW, LICSW, EMMHS

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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