Chronic Illnesses

Question 1

Types of Chronic Illness w/ two main characteristics (3)

Answer 1

1. Rare to common
2. Physical to mental illness or both
3. Two main characteristics
   a. Duration
   b. Likelihood of permanence

Question 2

Definition of Chronic Conditions in Childhood (6)

Answer 2

Conditions that at the time of diagnosis or during their expected course will produce one or more of the following current or future long term sequelae:

1. Limitation of functions appropriate for age and development
2. Disfigurement
3. Dependency on medication or special diet for normal functioning
4. Dependency on medical technology for functioning
5. Need for more medical care or related services than usual for child’s age
6. Ongoing treatments at home

Question 3

Coping vs. Adjustment

Answer 3

Coping: Dynamic process in which emotions and appraisal of the stress continually affect and influence each other and change the relationship between the individual and environment
*About the process of emotions coming in and influencing each other

Adjustment: Describes the outcome of coping at a specific point in time

Question 4

Day to Day Management of Child with CYSHCN (12)

Answer 4

1. Have working knowledge of disease
2. Working knowledge of treatment plan
3. Make decisions
4. Care routines
5. Make treatment adjustments
6. Teaching others about child
7. Self-assessment of needs and strengths
8. Negotiate family issues
9. Negotiate emergency plans
10. Coordinate care
11. Manage economic issues
12. Maintain self

Question 5

Services that children with special health care needs need (6)

Answer 5

1. Prescription medications
2. Specialty medical care
3. Vision care
4. Mental health care
5. Specialized therapies
6. Medical equipment

Question 6

Asthma and Special Health Care Needs (5)

Answer 6

1. Over 10 million US children aged 17 years and under (14%) have ever been diagnosed with asthma
2. 7 million children still have asthma (10%)
3. Boys (16%) were more likely than girls (12%) to have ever been diagnosed with asthma
4. Non-Hispanic black children were more likely to have ever been diagnosed with asthma (21%) or to still have asthma (16%) than Hispanic or non-hispanic white children
5. Children in poor families were more likely to have ever been diagnosed with asthma (17%) or to still have asthma 12% than children in families that were not poor

Question 7

Prescription Medications (3)

Answer 7

1. Boys (16%) were more likely than girls (12%) to have been on regular medication for at least 3 months.
2. Eighteen percent of youths aged 12–17 years were on regular medication compared with 14% of children aged 5–11 years and 7% of children aged 4 years and under.
3. White children (14%) and black children (15%) were more likely to have been on regular medication for at least 3 months than Asian children (6%).

Question 8

Learning Disabilities (3)

Answer 8

1. In 2010, almost 5 million children aged 3–17 years had a learning disability (8%)
2. 9% of boys had a learning disability compared with 6% of girls.
3. Black children (10%) and white children (8%) were more likely to have a learning disability than Asian children (4%).

Question 9

Children with CYSHCN Receiving SSI (10)

Answer 9

1. Single mother household
2. Less one-third live with both parents
3. Approximately half live in a household with at least one other disabled individual
4. Special education: 70%
5. SSI support:
   a. Most important source of family income
   b. 50% of income for families
6. Physical disabilities: ages 0-5
7. Mental disabilities: ages 6 to 17
8. SSI allows for complement payment
   a. Will need to fill out SSI forms for children/families
9. Examples for eligibility: poor families with children with autism, CF, etc.
10. Income plated

Question 10

What does a PNP need to understand? (6)

Answer 10

1. Medical home
2. Comprehensive coordinated care
3. Family centered care
4. Legislation
5. Barriers for family
6. Advocacy

Question 11

AAP Definition of Medical Home

Answer 11

The medical home model provides accessible, family- centered, comprehensive, continuous, coordinated, compassionate, and culturally effective care for which the pediatrician and the family share responsibility

Question 12

Medical Home (6)

Answer 12

1. Partnership
2. Coordinated by the patient s primary care provider (PCP)
3. Is dependent on the partnership between patient and provider
4. Comprehensive, and cost-effective manner that promotes the holistic care of patients and their families
5. Is relationship-based, care-managed provision of healthcare
6. Has the potential to improve access to care, patient satisfaction, and overall health status.

Question 13

Medical Home Model (7)

Answer 13

1. Accessible
2. Continuous
3. Comprehensive medical home
4. Coordinated
5. Compassionate
6. Culturally effective
7. Transition

Question 14

Stages of Pediatric Involvement with Families (5)

Answer 14

Stage I: Minimal focus on family

Stage II: Initial focus on family – Communication to facilitate healthcare

Stage III: Feelings and Support – Problem solving

Stage IV: Systematic assessment and intervention – Some training

Stage V: Family therapy – Guide and partner with families with ongoing, chronic problems

Question 15

Pediatric Health Care Home (5)

Answer 15

1. PNP as appropriate coordinator for CYSHCN
2. Provides direct health care
3. Advocates for the child
4. Make appropriate referrals
5. Remain responsible for the health care that is provided.

Question 16

NAPNAP Position on NP’s as leaders of the medical Home (3)

Answer 16

1. Qualified and proficient healthcare providers
2. Deliver comprehensive pediatric health- related services including care, coordination, health promotion
3. Advocates for the use of “provider- inclusive” language in all legislation and policies related to HC / MHs so that nurse practitioners are included in the constructs of these initiatives as HC / MH providers.

Question 17

The education for all Handicapped Children Act (PL 94-142) (6)

Answer 17

1. Free and appropriate public education (FAPE)
2. Least restrictive environment
3. IEP or individualized Education Program
4. Special ED and related services
5. Due process and procedure for complaints
6. There are two parts, one focuses on children under 3 and one on children over 3

Question 18

PL 94-142 for children under 3 (4)

Answer 18

1. Early Intervention
2. Individualized family service plan
3. Parent is primary decision maker
4. Reviewed every 6 months

Question 19

PL 94-142 for children over 3 (5)

Answer 19

1. Child Find
2. Free and appropriate education in the least restrictive environment
3. Individualized educational plan
4. School is primary decision maker
5. Annual review

Question 20

Section 504 of Rehabilitation Act 1973 (4)

Answer 20

1. Banned discrimination based on disability for employment, education, housing, and access to society
2. Prohibits denial of public education in the least restrictive environment of a disabled child
3. Children with conditions not listed under IDEA can get protection/assistance under 504
4. Reasonable accommodations for people with disabilities

Question 21

Difference between Acts

Answer 21

1. IDEA is an entitlement act

2. Section 504 of rehabilitation act of 1973 is a civil rights act

Question 22

Supplemental Security Income (SSI) (4)

Answer 22

1. Provides financial assistance to children with disabilities
2. Social security administration evaluates children under 18 year with disabilities and limited income or resources or household with limited income or resources
3. Disabilities determination Team
   a. Disability evaluation specialist and medical or psychological consultant
   b. Can request exam
4. Disability must last at least 12 months or result in child s death

Question 23

The Tax equity and fiscal responsibility act of 1982 (Pub L No. 97-248) Katie Beckett Act (2)

Answer 23

1981

1. Provides a variety of supports – Monetary assistance, to parents so that they could hire trained care providers to receive periods of rest (respite).
2. Respite – One of the most important supports necessary to continue to care for a child with special health care needs at home.

Question 24

Americans with Disabilities Act of 1990 (ADA) (2)

Answer 24

1. No discrimination against individuals with a disability in private sector employment or government facilities
2. Important for youth who need to transition into a job

Tennessee v. Lane, No. 01-1667

Question 25

Title V Block Grant to States (3)

Answer 25

1. One of the largest Federal block grant programs. 2. Ensuring the health of all mothers, infants, children, adolescents, and children with special health care needs (CSHCN). 3. Title V is administered a. Maternal and Child Health Bureau (MCHB) as part of the b. Health Resources and Services Administration, U.S. Department of Health and Human Services.

Question 26

Transition Process of CYSHCN (3)

Answer 26

1. Starting as early as age 12 2. Self-care skills 3. Pediatric to adult health care arena: a. Letting go i. Parents ii. Youth iii. Pediatric providers iv. PNP as point person b. Taking on i. Identifying providers who can manage special needs patients