1 of 36

Course: Pediatric Nursing

Topic: Care of Child With Special Health Care Needs

The Nurses International Community

Contact info: info@nursesinternational.org

2 of 36

COPYRIGHT

NI Privacy Policy and Terms of Use.

Contact info: info@nursesinternational.org

3 of 36

Module Goals

Learners will be able to:

Define the term - children with special health care needs.
Identify examples of children with special health care needs.
Discuss the challenges children with special health care needs face and their families.
Define pediatric palliative care.
Discuss the goals of pediatric palliative care.
Discuss service delivery systems for children with special healthcare needs.
Discuss nurses’ role in providing care to children with special health care needs and their families.

Contact info: info@nursesinternational.org

4 of 36

Children with Special Healthcare Needs (CSHCN)

Widely accepted definition:

‘….are children who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions. They also require health and related services of a type or amount beyond that required by children generally.’

(McPherson et al., 1998)

Genetic Alliance & Family Voices, 2013

Health Resources & Services Administration, 2022

Contact info: info@nursesinternational.org

5 of 36

CSHCN

Used interchangeably with children and youth with special healthcare needs (CYSHCN).

May include physical, intellectual, and developmental disabilities.

May include long-standing medical conditions, such as asthma, diabetes, a blood disorder, or muscular dystrophy.

Require more care for their physical, developmental, behavioral, or emotional differences than their typically developing peers.

Centers for Disease Control and Prevention, 2021

Contact info: info@nursesinternational.org

6 of 36

CSHCN: Examples

New York State, 2022

Down syndrome
Deafness
Autism spectrum disorders (ASD)
Attention deficit/hyperactivity disorder (ADHD)
Asthma
Cerebral palsy
Mental health problems
Allergies
Blood disorders
Diabetes
Epilepsy/seizure disorder
Muscular dystrophy
Tourette syndrome
Speech or language disorder
Genetic/inherited disorders

Contact info: info@nursesinternational.org

7 of 36

Critical Thinking Question

Which of the following would the nurse identify as a child with special health care needs? (Select all that apply)

A child with schizophrenia
A child will hemophilia
A child with autism
A child with a high grade fever

Contact info: info@nursesinternational.org

8 of 36

CSHCN: Global Challenge

24% less likely to receive early stimulation and responsive care
42% less likely to have foundational reading and numeracy skills
25% more likely to be wasted and 34% more likely to be stunted
53% more likely to have symptoms of acute respiratory infection
49% more likely to have never attended school
51% more likely to feel unhappy
41% more likely to feel discriminated against
32% more likely to experience severe corporal punishment

UNICEF South Asia, 2021

Contact info: info@nursesinternational.org

9 of 36

CSHCN: Challenges/Obstacles to Care

Abdi, Seok, & Murphey, 2020

Adugna et al., 2020

unicef Serbia, 2017

Economic/financial challenges

Face greater exposure to poverty due to need for

More frequent medical care
Greater usage of specialized care or therapies, prescription medications, and medical equipment

Need for child care may require parent to leave job.
Lack of support from employers for additional obligations related to child care.

Contact info: info@nursesinternational.org

10 of 36

CSHCN: Challenges/Obstacles to Care

Socio-cultural challenges

Presence of stigma around special care needs, that lead to

Child/families experiencing some kind of insult, humiliation, or harassment.
Parents hide child’s condition, refrain from seeking health care.

Child at higher risk of domestic violence, physical/sexual assault.
Child/family at higher risk of social isolation.
All above contribute to likelihood of child facing psychosocial challenges that require specialized attention.

Abdi, Seok, & Murphey, 2020

Adugna et al., 2020

unicef Serbia, 2017

Contact info: info@nursesinternational.org

11 of 36

CSHCN: Challenges/Obstacles to Care

Academic challenges

Miss more school days and more likely to repeat grades.
At greater risk of disciplinary removal and placement in restrictive settings.
Face more social challenges including behavioral problems and bullying.
Education institutions are not well informed and/or equipped for supporting needs of CSHCN.

Abdi, Seok, & Murphey, 2020

Adugna et al., 2020

unicef Serbia, 2017

Contact info: info@nursesinternational.org

12 of 36

CSHCN: Challenges/Obstacles to Care

Challenges relating to healthcare access

Healthcare services and rehabilitation services for CSHCN limited to urban areas, if available at all.

Child care services within a family setting (home assistance, day care, personal assistant) generally not available to children with disabilities and their families.

Where available, these services are costly

Shortage of educated and trained health professionals in the field of treatment and management of CSHCN.

Abdi, Seok, & Murphey, 2020

Adugna et al., 2020

unicef Serbia, 2017

Contact info: info@nursesinternational.org

13 of 36

CSHCN: Challenges/Obstacles to Care

Challenges within healthcare system

Prejudice, stigma, and discrimination by health service providers and other staff at health facilities.

Lack of awareness, education, and training for healthcare professionals and staff about diagnoses for CSHCN.

Many health services do not have policies in place to accommodate needs of the CSHCN.

Adugna et al., 2020

World Health Organization, 2021

Contact info: info@nursesinternational.org

14 of 36

Critical Thinking Question

Which of the following would a nurse understand may hinder the delivery of care in the child with special care needs? (Select all that apply)

Presence of stigma around special care needs
Lack of infrastructure in academic institutions
Few numbers of trained health professionals
Financial instability of parents

Contact info: info@nursesinternational.org

15 of 36

CSHCN: Service Delivery System in United States

CSHCN program focus around six core health components:

Access to coordinated, ongoing comprehensive care within a medical home.
Family-professional partnership at all levels of decision-making.
Access to adequate financing and private and/or public insurance to pay for needed services.
Early and continuous screening for special health needs.
Organized community services for easy use.
Transition from youth to adult health care, work and independence.

HRSA Maternal & Child Health, 2022

State of Tennessee, n.d.; Texas Department of State Health Service, 2022b

Contact info: info@nursesinternational.org

16 of 36

CSHCN Program in United States

Medical Home or Case Management

Family-centered: value and recognize family as an expert in the child’s care.
Comprehensive: preventive care, primary care, speciality care.
Continuous: same pediatric care team over time, transition to adult care services.
Coordinated: develop care plan, book appointments, handle referrals, provide access to community resources.
Culturally competent: respectful of family’s culture and religious beliefs.

Texas Department of State Health Services, 2022b

State of Tennessee, n.d.

Contact info: info@nursesinternational.org

17 of 36

CSHCN Program in United States (Continued)

Provides Family Support Services that include:

Respite (care to relieve a child’s caregiver)
Caregiver training
Family to family peer support
Special care supports
Vehicle modifications (e.g., wheelchair lifts, hand controls)
Minor home modifications (e.g., wheelchair ramp, wider doorways)
Special equipment and supplies (e.g., stair lifts)
Short-term utility assistance (e.g., rental, electricity)

Texas Health and Human Services, n.d.; Whitmore & Snethen, 2018

State of Tennessee, n.d

Contact info: info@nursesinternational.org

18 of 36

CSHCN: Early Intervention Program

Early identification of infants and toddlers with compromised growth and development.

Early and appropriate interventions to enhance development and functional outcomes of the child and improve family life.

Enable active and successful participation in a variety of settings

Homes with their families, child care, preschool programs, and in the community.

University of Rhode Island, n.d.; Smythe et al., 2021

Contact info: info@nursesinternational.org

19 of 36

CSHCN: Children with

Special Educational Needs (Northern Ireland)

Children who have learning problem or disability that make it more difficult for them to learn than most children their age.

Parents can get help and advice from specialists, teachers and voluntary organisations.

Schools may take following approach:

Different way of teaching certain concepts
Get extra help from an adult or specialist
Use equipment like a computer or special desk, etc.

Northern Ireland Government, n.d.a

Northern Ireland Government, n.d.b

Contact info: info@nursesinternational.org

20 of 36

What Would the Nurse Do?

Reflection/Discussion:

A parent of an autistic child does not want to send their child to school as they think that the child is not normal and will never be able to train for a career.

They also add that the child may not even be able to catch up to the other children in the school.

How can the nurse help the family and child in this situation?

Contact info: info@nursesinternational.org

21 of 36

CSHCN: Pediatric Palliative Care (PPC)

WHO (2018) definition:

‘......the prevention and relief of suffering of adult and paediatric patients and their families facing the problems associated with life-threatening illness…. These problems include the physical, psychological, social and spiritual suffering of patients, and psychological, social and spiritual suffering of family members.’

Aim to improve quality of life of the child, with life-threatening or life limiting condition, and their families.

Bettercare Learning Programmes, 2020

Contact info: info@nursesinternational.org

22 of 36

CSHCN: Goals of Palliative Care

Assess physical, social, emotional and spiritual needs
Address individual child’s needs in caring and compassionate way
Provide relief from pain and other distressing symptoms
Help child live as positively and actively as possible
Maximise quality of life
Use team approach to provide the optimal care
Do not hasten nor postpone death
Support parent/siblings through stages of grief/bereavement
Care begins at diagnosis, and continues through bereavement
Palliative care carried out with other forms of medical treatment

Bettercare Learning Programmes, 2020

Contact info: info@nursesinternational.org

Classification of illness for identification of palliative care needs:

Category 1: Life-threatening conditions that may be cured. For example:

- Cancer that is expected to respond to treatment

- Tuberculosis, especially drug-resistant TB

Category 2: Life-limiting conditions where the child’s medical condition can be controlled but not cured. For example:

- Cystic fibrosis

- Inherited muscular dystrophy

Category 3: Progressive conditions that cannot be cured and palliative care may be needed over months or years. For example:

- Chromosomal disorders such a

trisomy 13 and 18

- Inherited metabolic conditions

- Terminal cancer

- Inoperable cardiac disease

Category 4: Conditions which are not progressive but cannot be cured. For example:

- Severe cerebral palsy

- Multiple disabilities such as brain

or spinal injury

23 of 36

PPC Differ From Palliative Care For an Adult

Children are more dependent on their parents and often fear separation from family, friends, school, home
Communication more difficult
Medication types, doses, and side effects differ between children and adults
Difficult to identify symptoms in non-verbal children
Children older than age 12 should be included in decision-making where possible
Grief and bereavement experienced differently by family for a dying child than for a dying adult

Bettercare Learning Programmes, 2020

Contact info: info@nursesinternational.org

24 of 36

Critical Thinking Question

A nurse is classifying illness for identification of palliative care needs for children at a palliative care clinic.

Which of the following conditions would the nurse identify as category 3?

Trisomy 13 and 18
Cystic fibrosis
Tuberculosis, especially drug-resistant TB
Severe cerebral palsy

Contact info: info@nursesinternational.org

25 of 36

Nurse’s Role in Caring For CSHCN

Develop knowledge and skills to identify children with special care needs for early referral to specialist.

Assist CSHCN families with-

Education related to child’s care

Understanding and/or coping with child’s health condition

Finding or coordinating with medical or behavioral health providers.
Accessing local resources and/or services for their child
Finding financial assistance for their child’s health-related needs.

Chelan-Douglas Health District, n.d.

Texas Department of State Health Services, 2022a)

Contact info: info@nursesinternational.org

26 of 36

Nurse’s Role in Caring For CSHCN

Role model caring, compassionate attitude toward CSHCN and their families in the community.

Advocate for community resources that provide support to CSHCN and their families.

Educate/inform community against stigma related to health conditions of CSHCN, and how to be helpful and supportive of them.

(Chelan-Douglas Health District, n.d.

Texas Department of State Health Services, 2022a

Contact info: info@nursesinternational.org

27 of 36

Red Flags

Signs of abuse or maltreatment of the child.
Depressive behaviors demonstrated by child or parent or caregiver.
Role strain of caregivers.

Contact info: info@nursesinternational.org

28 of 36

Cultural Considerations

Religion, culture, beliefs, and ethnic customs can influence how families understand and use health concepts:

Health beliefs: In some cultures talking about a possible poor health outcome will cause that outcome to occur.
Health customs: In some cultures family members play a large role in health care decision-making.
Ethnic customs: Differing gender roles may determine who makes decisions about accepting & following treatment recommendations.

AHRQ, 2020

Contact info: info@nursesinternational.org

29 of 36

Cultural Considerations (Continued):

Religion, culture, beliefs, and ethnic customs can influence how families understand and use health concepts:

Religious beliefs: Faith and spiritual beliefs may effect health seeking behavior and willingness to accept treatment.
Dietary customs: Dietary advice may be difficult to follow if it does not fit the foods or cooking methods of the family.
Interpersonal customs: Eye contact or physical touch may be ok in some cultures but inappropriate or offensive in others.

AHRQ, 2020

Contact info: info@nursesinternational.org

30 of 36

References:

Abdi, F.M., Seok, D., & Murphey, D. (2020, February 13). Children with special health care needs face challenges accessing information, support, and services. https://www.childtrends.org/publications/children-with-special-health-care-needs-face-challenges-accessing-information-support-and-services

Adugna, M.B., Nabbouh, F., Shehata, S. et al. 2020). Barriers and facilitators to healthcare access for children with disabilities in low and middle income sub-Saharan African countries: a scoping review. BMC Health Serv Res, 20(15) (2020). https://doi.org/10.1186/s12913-019-4822-6

Bettercare Learning Programmes. (2020). Palliative Care for Children: A guide for improving the quality of life of patients and their families. https://bettercare.co.za/learn/palliative-care-for-children/text/01.html#1-the-principles-and-practice-of-palliative-care-for-children

Contact info: info@nursesinternational.org

31 of 36

References:

Centers for Disease Control and Prevention. (2021, January 6). Children and Youth with Special Healthcare Needs in Emergencies. https://www.cdc.gov/childrenindisasters/children-with-special-healthcare-needs.html

Chelan-Douglas Health District. (n.d.). Children with Special Health Care Needs. https://www.cdhd.wa.gov/health/children-with-special-health-care-needs

Genetic Alliance & Family Voices. (2013, Feb). Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective. Genetic Alliance. https://www.ncbi.nlm.nih.gov/books/NBK132160/

HRSA Maternal & Child Health. (2022, June). Children and Youth with Special Health Care Needs. https://mchb.hrsa.gov/programs-impact/focus-areas/children-youth-special-health-care-needs-cyshcn

Contact info: info@nursesinternational.org

32 of 36

References:

Human Resources & Service Administration, Maternal and Child Health. (2022, June). Children and Youth with Special Health Care Needs (CYSHCN). https://mchb.hrsa.gov/programs-impact/focus-areas/children-youth-special-health-care-needs-cyshcn#i

McPherson M, Arango P, Fox H, et al. (1998). A new definition of children with special health care needs. Pediatrics,102(1, pt 1):137–140.

New York State. (2022, April). Children and Youth with Special Health Care Needs (CYSHCN) Program. https://www.health.ny.gov/community/special_needs/

Northern Ireland Government. (n.d.a). Children with special educational needs. https://www.nidirect.gov.uk/articles/children-special-educational-needs

Contact info: info@nursesinternational.org

33 of 36

References:

Northern Ireland Government. (n.d.b). Special educational needs: a step-by-step approach. https://www.nidirect.gov.uk/articles/special-educational-needs-step-step-approach

Smythe, T., Zuurmond, M., Tann, C.J., Gladstone, M., & Kuper, H. (2021 May). Early intervention for children with developmental disabilities in low and middle-income countries – the case for action, International Health, 13 (3);222–231, https://doi.org/10.1093/inthealth/ihaa044

State of Tennessee. (n.d.). Integrated Community Systems of Services. https://www.tn.gov/health/health-program-areas/mch-cyshcn/mch-cyshcn-integrated.html

Texas Department of State Health Services. (2022a, April 20). Public Health Region 1 Children with Special Health Care Needs (CSHCN). https://www.dshs.texas.gov/region1/cshcn.shtm

Contact info: info@nursesinternational.org

34 of 36

References:

Texas Department of State Health Services. (2022b, June 14). CSHCN Medical Home. https://www.dshs.state.tx.us/mch/CSHCN/Medical-Home.aspx#:~:text=A%20medical%20home%20is%20a,medical%20services%20for%20their%20child.

Texas Health and Human Services. (n.d.). Family Support Services. https://www.hhs.texas.gov/providers/health-services-providers/children-special-health-care-needs-services-program/family-support-services

unicef Serbia. (2017, November 30). Children with disabilities facing difficulties and obstacles in realising their rights. https://www.unicef.org/serbia/en/press-releases/children-disabilities-facing-difficulties-and-obstacles-realising-their-rights

unicef South Asia. (2021, November 10). Nearly 240 million children with disabilities around the world, UNICEF’s most comprehensive statistical analysis finds. https://www.unicef.org/rosa/press-releases/nearly-240-million-children-disabilities-around-world-unicefs-most-comprehensive

Contact info: info@nursesinternational.org

35 of 36

References:

University of Rhode Island. (n.d.). Early Intervention Program. https://web.uri.edu/human-development/outreach-and-research/early-intervention-program/

Whitmore, K.E, & Snethen, J. (2018). Respite care services for children with special healthcare needs: Parental perceptions. J Spec Pediatr Nurs,23(3):e12217. doi: 10.1111/jspn.12217. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6202162/

World Health Organization. (2021, November 24). Disability and health. https://www.who.int/news-room/fact-sheets/detail/disability-and-health

Contact info: info@nursesinternational.org

36 of 36

Please go to

My Learning Experience

to provide feedback on your experience.

Thank you, and come back soon!

Contact info: info@nursesinternational.org