Hospitalization, Chronic Illness, and Disability in Children

biomedical model

a healthcare framework that views illness as a result of specific, physical causes like infection or genetic issues, separate from the mind

biopsychosocal (BPS) model

states that health and illness are determined by a dynamic interaction between biological, psychological, and social factors

biopsychosocial model of health

Health is not just related to biology, but many other factors involved including person’s support, culture, and other things that can influence health.

outcomes of hospitalization on children

• Children are substantially more influenced and affected by hospitalization than adults

• Insufficient emotional maturity

• Insufficient cognitive maturity

• lack of adequate and relevant knowledge

• Removal from familiar surroundings

• People in masks

• Different ages have somewhat different reactions

factors related to hospitalization outcomes

• Developmental Age

• Previous Experience with illness, separation, or hospitalization

• Frequently hospitalized may have less anxiety

• Innate and Acquired Coping Skills

• Seriousness of the Diagnosis

• Support System Availability

• Environment

• The look of the hospital, can make kids more comfortable

long term effects of hospitalization

• Hospitalization has varying long-term developmental effects

• Children between 6 months and 4 years of age are at a greater risk than older children.

• Children that are under the age of 3 are the most vulnerable to the possible effects of prolonged hospitalization.

hospitalization issues for the infant (<1)

Object permanence – not present in the infant until 9-12 mos.

• Fears

• Loss of support

• Loud noises

• Strangers

• Sudden large, looming objects

• Parental separation; by 9 months,stranger anxiety/separation anxiety

• May delay milestones

• Lack of play

• Schedule disruption

• Babies can’t communicate verbally

hospitalization issues for toddlers (2-3 yrs)

• Loud stimuli

• Dark rooms

• Large objects or machines

• Masks

• Changes in personal environment

• May view hospital as punishment

• Increased crying

• Decreased play

• Decreased appetite

• Beginning to verbally communicate pain, irritable; temper tantrums

• Refusal to eat

• Developmental regression (ex. toilet training, biting, hitting, head banging)

hospitalization issues for preschoolers

• Imagination peaking

• Create thoughts of potential harm

• Separation from parents

• Dark rooms

• Noises

• Unfamiliar places

• Stranger Danger

• Bodily Harm

• May view hospital as punishment

• Regression (baby talk, diapers)

• Aggressive behavior

• Can verbalize pain

• Nightmares

• Misconceptions

hospitalization issues for school age (6-11)

• Supernatural beings (ghosts, monsters)

• Bodily injury

• Concerned about body image

• Don’t understand things aren’t permanent (ex. ostomy bag)

• Physical appearance

• Dark

• Sleeping or staying alone

• Separation from Parents

• Begin to worry about parents

• Picks up on stress parents arefeeling

• Worry about being able to resumenormal activities

• Scared of death

• May show regression, aggressive behavior, will test authority, maywithdraw, deny favorite activities

• May virtualize pain, but may not report if anticipates a shot withdrawal

hospitalization issues for adolscense

• Will worry what peers think

• Could be embarrassed to be hospitalized

• Sexual performance

• Don’t eat when want

• Don’t eat what want

• Fear of rejection & criticism

• Body changes

• Loss of self determination and ability to make choices and manage their own life

• Need for Information

• May regress, especially with communication

• Very sullen, not want to talk with healthcare professional

• May test limits

• Body image concerns

• Sleep disturbance

• Withdrawal or depression

coping mechanisms for hospitalization

• avoidance

  • postpone thinking about it

• distraction

  • talk about their interests

  • distract from blood draw, IV

• support seeking

  • physical object

  • blanket

  • teddy bear

• problem solving

  • give child any support they can have

  • meds delivered before procedure, therapies

  • manage pain

postive cognitive restructuring (active coping)

Use cognition to think about coping strategies

• “can you hold my hand”

• “can I sit on your lap”

child life specialists

Highly trained professionals who help children cope with stress and uncertainty of illness, disability, injury, and hospitalization

• Provides medical education, preparation, and support

• The goal is to aid in reducing fear and anxiety amongst family/kids

• Provides distraction

• Help children know what's going on

• Develop educational materials

consultations and support

• Music Therapy: therapeutic goals (ex: pt with stroke, music therapy can use drums)

• Art Therapy: paint brushes; drawing and painting can release emotion in a safeway

• Therapy animals

• Puppet shows

• Pictures: entertaining, visually appealing environment

importance of play in hospital setting

• Provides diversion and brings about relaxation

• Helps the child feel more secure in a strange environment

• Lessens the stress of separation and feeling of home sickness

• Encourages interaction and development of positive attitudes towards others

• Expressive outlet

• Way to accomplish therapy goals

• Gives child some control and choices

importance of informing adolscents

It is important to children 7-11 and adolescents to get information and age appropriate support groups/interventions

• Less symptom distress

• Less anxiety

• Improve medical adherence/less use of medication and improved knowledge

• If interventions included physical activity- positive effects on physiologic measures such as blood glucose

parental stress

• Flexibility with Employment

• Decreased quality of life

• Gender related- particularly effects mothers

• Caregiving Burden

• Sleep disruptions- very common (ex: kids with autism don’t sleep well, abnormal diurnal cycles)

• Effects family life, including vacations- about 20% can’t take vacations

• Base on chronic illness

childhood cancer

• Survivors of childhood cancer report poorer health related quality of life when compared to siblings

• 96% had at least once chronic health condition by age 45

• Significantly elevated emotional distress:

• Anxiety

• Depression

• Somatization

• Some evidence of resilience as well

entrance peroid (TTP)

• Period when diagnostic activity happening

• Seeking diagnosis/just received

  • Can go 1 or 2 ways:

    • Diagnosis can be devastating

      • Ewing sarcoma

    • Diagnosis is a relief

• Going through anxiety, grief, anger

• Emotions at looking at other families who have healthy children

operating period (TTP)

• Being Process of Normalization

• Figuring out how to incorporate the child’s disabilities into your life

• Give up work

• Grandparents move closer to help

• Talk about things grateful for during normalization

• Poems, blogs, where parents write about their experiences

• Welcome to Holland

normalization

proceeding with an expectation of normalcy

most common chronic illnesses

• type I diabetes

• asthma

chronic illness and repeat hopsitalization differences

• circle of intimacy shrinks due to need for monitoring of health condition

• children become overmature for their time because they spend more time with adults then kids

• lose innocence

• health care providers become familiar faces

• may have limited/restricted interaction with age related peers

• decreased likelihood of both parents being employed

• hiatus of school

• financial pressure

• childcare/respite care

normalization of parenting

• Most families who have children with serious illness or disabilities eventually view their children and their lives as normal and manage the related demands successfully

• “New normal”

• A parenting style focused on the routine rather than the one centered on child vulnerability, caregiving, and caregiver burden

importance of normalization

• Parents consistently identify normalization as a valued goal and develop strategies to create and sustain a family life they experience as normal and satisfying

• Families who normalize childhood chronic illness recognize the seriousness of the illness while continuing to view their child and family as unchanged in important ways

• Using a “normalcy lens”

• Accepting a viewpoint that sees a child and family asnormal helps the family learn to manage illness ordisorder-related demands in a way the sustains usualpatterns of family and child functioning

• A positive outcome of a family focus on normalization is family participation

• Family participation in the care of a child enhancesdevelopment

• Social participation and emotional well-being

steps to normalization

1. Acknowledge the condition and its potential effect on family function and lifestyle

2. Interacting with others based on a view of child and family as normal

3. Adopting a “normalcy lens” for defining child and family

4. Engaging in parenting behaviors and family routines that are consistent with the “normalcy lens”

5. Develop a treatment regimen that is consistent with the “normalcy lens”

chronic illness effects on children

Positive effects

• “why did you choose to be PA, OT, PT?”

• “I had a brother, sister, etc.”

• Siblings adapt

• Often find a role to be helpers

• Often choose helping professions

Negative effects

• Can be jealous of attention

• “I wish I had…..”

• Certain things they can’t do

• Resources, sports, etc.

effects on marriage

• 50+ year longitudinal study, having a child with a disability did not increase the rate of divorce

• Some qualifiers related to number of children in family (small families with child with disabilities did show increased divorce)

• Possible in larger families, caregiving is dispersed, and siblings can help defray tensions