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CHRONIC CONDITION

Nursing 346

OBJECTIVES
Analyze the impact of having a chronic condition will have on the
child, sibling(s) and family.
Identify times when the need for additional support may be
indicated
Describe ways in which nurses assist children and families with
chronic conditions to obtain optimal functioning
Discuss additional supports available to individuals who have
chronic conditions
Plan for the transition of the child from pediatric to adult care.

DEFINE
Those who are at risk or have a chronic
physical, developmental, behavioral, or
emotional condition beyond what is
generally required by typically
developing children
(US Department of Health and Human /services, Health
Resources and Services Administration, Maternal and Child Health Bureau, 2008)

Children at the end of life

RESOURCES AND SERVICES


Medications
Medical care
Mental health and additional or more intensive education
Physical, occupational, or speech therapy
Mental health treatment for emotional, developmental, or
behavioral problems
Financial
Support

IMPACT
Child
Consider this from the context of development
Think about the preemie

Family
siblings

CHILD
Infant: may fail to develop a sense of trust and bonding
Toddler: may have difficulty developing autonomy
Preschooler: may have difficulty achieving sense of initiative
School-age child: may have difficulty achieving industry
Adolescent: may have difficulty forming a sense of identity

FAMILY
May experience a multitude of emotions and changes
in their lives
May be overwhelmed with burdens of continual care
May experience fear, anger, sadness, guilt, frustration,
or resentment

STRESSORS
Housing situation changes.
Sleep is affected.
Carrying out basic activities of living is affected.
Medical and technical care must be incorporated into daily life.
Family identity and employment may be altered radically.
Extended burden of care may affect health of caregivers

TRANSITIONS
Initial diagnosis or change in prognosis
Increased symptoms
When the child moves to a new setting (hospital, school)
During a parents absence
During periods of developmental change
Chronic sorrow

VULNERABLE CHILD SYNDROME


Preterm birth
Congenital anomaly
Newborn jaundice
Handicapping condition
An accident or illness that the child was not expected to recover from
Crying or feeding problems in the first 5 years of life

FOCUS OF NURSING MANAGEMENT


Case management and advocacy
Screening and ongoing assessment of the child
Provision of home care
Care of the technology-dependent child
Education and support of the child and family
Referral for resources

NURSING MANAGEMENT
Case management and advocacy
Therapeutic relationships
Principals related to family involvement (Box 12.1)

Screening and ongoing assessment


Home care
Technology dependent
Discharge planning

Education
Support
Resources
Provision of or referral

NURSING MANAGEMENT
Education
Ongoing
Necessary for child and family

Support
Consider peer groups and parent groups

Resources

Educational needs
Financial
Respite
Complimentary or other

Provision of or referral

TRANSITIONS
Considered early on and must consider having a plan!
Adolescent health transition project
By age 14, ensure that a transition plan is initiated and that the IEP reflects posthigh
school plans.
By age 17, explore health care financing for young adults.
Notify the teen that all rights transfer to him or her at the age of majority. Check the
teens eligibility for SSI and SSI work incentive the month the child turns 18.
If the youth is attending college, contact the colleges campus student disability service
program.
By age 21, ensure that the young adult has registered with the Division of Developmental
Disabilities for adult services if applicable.

TEACHING POINTS
DURING TRANSITION TO
ADULT CARE
Treatment rationale
Symptoms of worsening condition
Danger signs
When to seek help from a professional
Medical insurance process
Detailed written plan of care
Consultation with transition services coordinator