What is chronic illness?
A health problem that lats > 3 months, affects daily activities, requires frequent hospitalizations, home health care, and/or extensive medical care
___ million children (under 18) suffer from a chronic illness
15-18 million children (under 18) suffer from a chronic illness
What is a common feature of children who have to undergo surgery?
Pre-operative anxiety (50-65%)
- Increase in heart rate and secretion of cortisol
Most anxiety-provoking part is anesthesia induction
What are risk factors for pre-operative anxiety?
- Age under 5 yrs (6 mo- 4yrs)
- Temperament (Behavioral Inhibition)
- Passive coping style (e.g. doesn't want to talk to anyone about disease; just take it as it comes; part of temperament)
- Negative past medical encounters
- Parents with increased levels of anxiety
What is the range for the start of separation anxiety (start/peak)?
- Experienced as early as 9 mo
- Peaks at 1 yr
What are post-op concerns of children following surgery?
- Post-operative pain
- Emergence of delirium
- Behavioral changes (nightmares, separation anxiety, eating/feeding problems/ increased fear of doctors)
What is associated with kids with high levels of pre-operative anxiety?
Negative behavioral changes
- Children with high levels of preoperative anxiety are 3x as likely to develop negative behavioral changes
What is the time course of post-op behavioral changes?
- 40-55% at 2 weeks
- 19% at 6 months
- 65 at 1 year
A child's perspective changes greatly with what?
Age (especially cognitive development)
How do children interact with illness in the Sensorimotor stage (0-2 yrs)?
- Rely on senses to understand illness and bodies
- Mainly pre-verbal and cannot establish narratives to convey thoughts/feelings
How do children interact with illness in the Preoperational stage (2-7 yrs)?
- "Egocentric" thinking reliant on personal encounters with limited capacity to generalize in other experiences
- Empirical rather than logical thought (i.e. may fear phlebotomist not b/c of pain but distress over losing all blood) [Band-aid obsessions!]
- Concept of immanent justice: belief that a form of natural justice exists, leading to guilt and shame (got cancer b/c lied to parents)
- Belief that events connected temporally are causally related (I fell down and got a cough)
- Over-extension of the concept of contagion, applying it to conditions without an infectious etiology
- Prior to adolescence, difficult to conceive that unrelated symptoms can belong to one illness (e.g. rash and headache as part of the same syndrome)
How do children interact with illness in the Concrete Operations stage (7-11 yrs)?
- Concrete thinking processes with limited ability to abstract (e.g. don't understand how medicine taken by mouth could help a hurt ankle)
- Continued difficulty recognizing that apparently unrelated symptoms are part of same disease process
- Capacity to use logic to comprehend their perceptions
- increasing ability to differentiate self from others; ability to distinguish one's own wishes, needs, and thoughts
How do children interact with illness in the Formal Operations stage (>12 yrs)?
- Multiple etiologies are considered for source of illness
- Capacity to understand two unrelated symptoms can manifest from one condition (e.g. migraine headaches and emesis)
What are risk and protective factors in relation to illness/hospitalization (broadly)
Risk factors: Age of Onset?
Age of Onset:
- Onset (6 mo- 5 yrs) and early adolescence
- Other stressors: losses, school problems
- Issues of attachment, independence, and autonomy for 1-4 yr olds (challenging all of these if a child gets a disease at this time)
- Issues of privacy for early/mid teens
- Painful, frightening symptoms are the most difficult for preschoolers
- Younger children lack understanding of causality/concept of justice
- Immanent justice
- Younger children lack ability to understand treatment rationale
Specific risk and protective factors: Etiology?
- Causes including trauma, infection, genetics
- Belief systems of parents (immanent justice)
- Concerns regarding risk for other family members
- Natural disaster/"act of God"
- No sense that another action could have prevented illness/injury
- No blame of self or others
Specific risk and protective factors: Diagnosis?
- Prolonged delay in diagnosis/misdiagnosis
- Physician/family conflict regarding diagnosis/treatment
- Miscommunications/lack of communications
- Prolonged pretense in front of child
- Rapid diagnosis
- Timely and empathic communication
- Attention to cognitive and emotional aspects of disease
- Attention to impact on other family members
Specific risk and protective factors: Deformity or Disability?
- Physical deformity/disability negatively influences development of self-image and availability of support
- Especially vulnerable early and mid-adolescence (younger kids do better)
- Family's inability to "re-imagine" child
- Multidimensional identity
- Positive self image
- Non-abandonment by treatment team
- Supportive peers with or without illness
- Positive parental acceptance (e.g. shark-bitten girl going back to surfing because she was still whole)
Specific risk and protective factors: Prognosis?
- Unnecessary pretense from treatment team
- Chronicity expected
- Implications for other family members
- Comfort from spiritual/religious beliefs/involvement
- Positive pre-illness family communicatoins
- Non-abandonment by the team
- Non life-threatening
- Support from friends/teachers
What to be careful of with kids with illness who seem very mature?
Realize that there may be pockets of maturity and immaturity
- Ex) may struggle with social aspects
Zach's story: Risk and Protective factors?
- Age of onset
- Limited understanding of illness
- Severity of disease/life threatening
- Recurrence of cancer
- Times pent in the hospital/missed school days
- Rapid diagnosis
- Family support
- Positive outlook
- Continuity of care/treatment team
Development and Coping: Infants and Toddlers?
- Completely dependent upon adults
- Demonstrate anxiety through crying
- At greatest risk for separation difficulties
Development and Coping: Preschool age?
- May not understand why parents can’t protect them from medical procedures, etc.
- Medical procedures may be seen as punishment
- Increasing imagination may exacerbate worries
- May feel rejected by parents if they are note present
Development and Coping: School age?
- Control and mastery important concepts at this developmental stage
- Coping strategies increase with age; positive self talk associated with favorable outcomes
- Actions speak louder than words; seeing is believing
- Some children may act out, show aggression or be rebellious because they feel like they do not have any bodily control
Children can abandon concept of immanent justice earlier when?
Children can abandon concept of immanent justice earlier when appropriate explanations are given:
- Reduction of guilt and shame
- increased adherence
- Improved adjustment and coping
Development and Coping: Adolescence?
- Independence and autonomy from family
- Preoccupation with appearance, body’s development
- Illness threatens autonomy, control and bodily integrity
- Cognitive growth with increased ability to use coping strategies
Development and coping in practice have led to what policy changes?
- In-hospital presence of parents
- Preparation familiarization programs
- Peer visitation
- Child life services
- Continued schooling
How to help?
- Preschoolers and school age children should receive basic instructions [medical play; concrete-medical chart, etc.]
- Inquire into the child’s views and understanding to replace frightening misconceptions [“sometimes kids think…”]
- Adolescents require a minimum of 7-10 days advance preparation with ongoing opportunities to ask questions
- Encourage participation in preparatory programs related to health
- Include parents, siblings and key people in the lives of the children to promote coping and resilience
- Use preventive health visits to educate parents and the child [studies suggest little direct communication occurs with the child] Use of distraction techniques during pre-operative phase has reduced anxiety
- Being attuned to child’s needs during “stress points”: (venipuncture, separation from parents, anesthesia induction)