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 by chronological age, but a child’s chronological age is not an exact reflection of where they are functioning developmentally. A child’s developmental level can be on target with their chronological age or be more advanced or delayed.
- Infants begin to have object permanence between 4-7 months of age and can begin to recognize primary caregivers' faces as young as 1-2 months old
- Infants are developing their understanding of spoken language and can begin to identify/point to objects, people, etc., when prompted
- Knowledge comes through sensory experiences: what they see, hear, taste, touch, smell
- Consistent care and sensory-friendly environments are vital
- Anxiety caused by parent/caregiver separation
- Stranger anxiety
- Changes in routine
- Changes to the sensory environment
(loss of comforting stimuli, added painful stimuli, or overstimulation) - Loss of autonomy and newly learned skills;
regression in formerly mastered skills
- Consistent care
- Sensory-friendly experiences
- While young infants do not have the cognitive ability to be prepared for experiences, caregivers do. Caregivers should be educated on what to expect to create the best coping plan
- While young infants do not have the cognitive ability to be prepared for experiences, caregivers do. Caregivers should be educated on what to expect to create the best coping plan. Click here for examples.
- Children have simplistic concepts of illness which require concrete and specific details to avoid misunderstandings
- Magical thinking occurs at this age (belief that the child is being punished or caused the illness)
- Separation from caregivers, loss of autonomy and new skills (walking or potty training) are stressful - maintain routines, offer choices, and promote independence
- Language and emotions are important for children - use concrete and specific language and label emotions
- 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
- 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 and surround child with familiar and other 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
- 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
- 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
- Children can understand concrete, observable changes but struggle with abstract concepts
- Children can understand the cause of illness but can still develop misconceptions. Remember to always explain things in developmentally appropriate language and avoid or explain words that have dual meanings
- They struggle with the loss of peer support and control
- Self-esteem issues arise
- Children should be encouraged to express feelings through discussions, play or other therapeutic interventions
- Modesty
- Loss of control
- Loss of peers and school routine
- Feeling different from peers
- Restricted movement and space
- Acknowledge fears and concerns, while validating feelings and clarifying misconceptions
- Encourage open communication and interventions such as journaling, drawing, or other modalities to express feelings
- Discuss past and upcoming experiences and develop a coping plan for the future
- Encourage time with peers, school activities and hobbies
- Prepare school-age children for experiences ahead of time using terms they understand and remember to keep “safe space” safe. Avoid invasive medical procedures in the child’s bed or playroom and encourage the use of a treatment room when available.
- 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 understand abstract concepts, how their body reacts to the cause of illness, and how their mental state influences their physical symptoms (e.g. stress)
- Peer influence & short-term consequences are particularly influential in decision making
- Independence is important but they may need to rely on adult assistance
- Adolescents should be encouraged to express themselves in decision-making, discussions, or journaling
It has also been found that adolescents and teens with medical complexity often have more experience with these topics and may have a more advanced understanding.
- Loss of peer support and social isolation
- Loss of independence
- Dependent on adults
- Feeling like they don’t fit in with their peers
- 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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