Clinical Training Recommendations for Pediatric Psychologists Caring for Patients with Serious Illness

These training recommendations will help pediatric psychologists 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 Psychologists

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 the role of psychologists in providing that care), and how and when to request a consult
  • Assess pediatric patient’s physical, mental, social, and spiritual well-being at all stages of disease using developmentally- and culturally-appropriate methods
  • Assess parent mental health as appropriate, determine if additional services are needed (either provided directly or through referral)

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

  • Determine patient’s preference for and ability to participate in decision-making using knowledge of socioemotional and cognitive development and direct patient discussion/assessment
  • 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 that discussion as developmentally appropriate
  • Identify family barriers to having discussions about these topics and help facilitate conversations between youth and their caregivers to align preferences
  • Identify how social determinants of health influence[2] pediatric patients’ and families’ decision-making in the context of a serious illness, and deliver responsive, unbiased care matched to needs and priorities
  • Provide developmentally- and culturally-appropriate education regarding coping with serious illness

Manage Pain and Symptoms

  • Using developmentally- and culturally-appropriate tools, assess and address the distress caused by common symptoms associated with serious illness
  • Identify psychological and behavioral contributors to pediatric patients’ symptom presentations
  • Assess the feasibility and safety of the care plan with pediatric patients and families

Prevent Crises and Plan Ahead

  • Collaborate in planning to return to the community from non-home settings
  • Identify pediatric patient and family concerns about managing symptoms at home, and proactively generate a symptom management plan
  • Recognize non-physical sources of distress, and collaborate with community psychosocial colleagues to provide support when needed

Additional Skills for Pediatric Psychologists 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
    • Coping: family strengths, strategies, resiliency factors, risk factors, including adverse childhood events
    • Emotional and spiritual distress
    • Mental health history
    • Physical symptom distress
    • Communication challenges for patients and families
    • Patient and caregiver medical understanding and factors affecting understanding (e.g., learning and/or developmental concerns)
    • History of and barriers to adherence
    • Pediatric patient education circumstances

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

  • Conduct skilled conversations with pediatric patients and families, using developmentally appropriate language, about matters specific to serious illness/complex care
  • Conduct culturally-sensitive advance care planning conversations if desired; facilitate sharing of documentation with the care team
  • Identify patients who are amenable to 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

  • Anticipate and address the full spectrum of symptoms related to specific serious illnesses or conditions along the disease 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
  • Identify pediatric patients who would benefit from a specialty palliative care consult for complex or intractable symptoms, and refer or discuss with the care team
  • Recognize and honor cultural influences on death and dying; facilitate incorporation of faith leaders and traditions as desired by families
  • Understand grief in pediatric patients and families

Prevent Crises and Plan Ahead

  • Identify community resources that can support pediatric patients living with serious illness and/or complex needs, and their siblings and family
  • 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
  • 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
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: Rachel Kentor, PhD; Amanda Thompson, PhD

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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