Self-Advocacy Toolkit

Be a Champion for Self-Advocacy

Section One: Children’s Stages of Development and Effects of Illness


In this section, there is information on the stages of development throughout childhood, the effects illness may have on each stage, and how children may understand each stage.

Overall children of all ages need to be given information regarding their medical situation, treatments, medications, therapies, etc. in ways they can understand.

“Be cognizant to not assume a child’s level of understanding based on chronological age, appearance, cognitive deficits or physical limitations. Be sure to communicate with the family and child (when able) to be able to provide the most appropriate interventions based on their unique needs.”

— Krista B., Child Life Specialist


Please note: The information below gives an overview of typical development, but that children may be in a different developmental stage than their actual chronological age.

Infants (Birth to 1 year old)

Effects on Development:

  • Parent separation
  • Stranger anxiety
  • Changes in routine
  • Changes to the sensory environment
    (loss of stimuli or added painful stimuli)
  • Loss of autonomy and newly learned skills;
    regression in formerly mastered skills

TIPS - How to Support Development:

  • Consistent care
  • Sensory-friendly experiences
  • Prepare toddler for experiences shortly before they happen in language that is familiar to them
  • Use comfort positions during invasive procedures when possible

Toddlers (1-3 years) and Preschoolers (3-5 years)

Toddlers

Effects on Development:

  • Loss of autonomy and newly learned skills
  • Regression in formerly mastered skills
  • Separation anxiety
  • Stranger anxiety
  • Changes in routine
  • Restricted movement and space
  • Developing imagination and fears

TIPS - How to Support Development:

  • Create new routines or adapt previous routines
  • Allow as much autonomy, independence and exploration as possible
  • Offer realistic choices (what color bandaid, which arm, etc.)
  • Provide comfort items
  • Prepare toddlers for experiences shortly before they happen in language that is familiar to them
  • Use comfort positions during invasive procedures when possible

Preschoolers

Effects on Development:

  • Loss of control
  • Imaginative thinking and guilt (belief that their thoughts or behaviors caused the illness)
  • Fear of injury
  • Loss of ability to explore
  • Change in routines

TIPS - How to Support Development:

  • Label and play out feelings (mirror facial expressions; encourage the expression of negative emotions - e.g. punching pillows or knocking down blocks)
  • Use concrete and specific language
  • Provide a sense of comfort by giving jobs or choices in treatment
  • Discuss fears
  • Prepare preschoolers for experiences shortly before they happen in language that is familiar to them
  • Use comfort positions during invasive procedures when possible

School Age Children (5-12 years)

Effects on Development:

  • Modesty
  • Loss of control
  • Loss of peers and school routine
  • Feeling different from peers
  • Restricted movement and space

TIPS - How to Support Development:

  • Acknowledge fears and concerns
  • Encourage discussion or journaling
  • Talk about other children’s experiences and how they can cope
  • Encourage time with peers, school activities and hobbies
  • Prepare school-age children for experiences ahead of time using terms they understand.
  • Avoid using words/phrases that can can be misinterpreted (i.e. “you will be put to sleep for your surgery” can be interpreted like how a pet is euthanized)

Adolescents (12-18 years)

Effects on Development:

  • Loss of peer support and social isolation
  • Loss of independence
  • Dependent on adults
  • Feeling like they don’t fit in with their peers

TIPS - How to Support Development:

  • Create a safe space to explore feelings
  • Include in decisions
  • Encourage peer contact, school activities and hobbies
  • Maintain privacy as much as possible
  • Encourage discussion or journaling



For all age groups, it is important to recognize that regression is not uncommon when these young people experience highly stressful events.

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PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.

The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization.  Donations are tax-deductible according to the IRS’s rules and regulations.  The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.