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Support for Caregivers of Children with Special Health Care Needs

presented by Cyndi Cortes

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Disclosure Statement:

Financial: Cyndi Cortes receives compensation from MedBridge for this course. There is no financial interest beyond the production of this course.


 Non-Financial: Cyndi Cortes has no competing non-financial interests or relationships with regard to the content presented in this course.

Satisfactory completion requirements: All disciplines must complete learning assessments to be awarded credit, no minimum score required unless otherwise specified within the course.

MedBridge is committed to accessibility for all of our subscribers. If you are in need of a disability-related accommodation, please contact [email protected]. We will process requests for reasonable accommodation and will provide reasonable accommodations where appropriate, in a prompt and efficient manner.

Accreditation Check:
Caregivers of children and youth with special health care needs (CYSHCN) experience a higher caregiver burden than caregivers of children without special health care needs. Meeting the needs of caregivers of CYSHCN has the potential of improving the quality of life of both the caregivers and their children. This course will describe the unmet needs of caregivers of CYSHCN and provide suggestions of ways healthcare professionals can facilitate the meeting of identified needs.

Meet Your Instructor

Cyndi Cortes, DrPH, MSN, MRE, CPNP-PC, CRRN, COI

When Cyndi Cortes became an interdisciplinary training trainee at the Sparks Center for Developmental and Learning Disabilities as a Master of Science in Nursing student, she did not realize how that decision would impact her clinical and professional career. While working at Children’s of Alabama in the Department of Physical Medicine and Rehabilitation, Cortes developed…

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Chapters & Learning Objectives

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1. Definition of Children and Youth with Special Health Care Needs

Before discussing the needs of caregivers of CYSHCN), the term must be defined. The Maternal and Child Health Bureau (MCHB) defines CYSHCN as "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

2. Physical Needs of Caregivers of CYSHCN

Caregivers of CYSHCN frequently report tiredness and fatigue as well as physical ailments that might be associated with the care they provide for their children. Primary caregivers of a family member with a disability reported poorer health than those who did not care for a family member with a disability. Caregivers may not consider their own health needs to be a priority and may neglect their personal health and well-being.

3. Mental Health Needs of Caregivers of CYSHCN

Caring for CYSHCN is inherently stressful and caregivers of CYSHCN have reported lacking control of day-to-day events and not having sufficient time to complete daily tasks. They may also describe symptoms of anxiety, depression, or guilt. Receiving social support and satisfaction of the social support received by caregivers of persons with special health care needs were beneficial in mitigating depressive emotions in this population.

4. Resource Needs of Caregivers of CYSHCN

Caring for a CYSHCN has an economic effect on the family, which in turn, may affect physical and psychological well-being; families’ resources may also fluctuate with the child’s health status. Studies have shown an association between higher socioeconomic status and better emotional well-being in caregivers of CYSHCN. Families with lower incomes reported more distress.

5. Transitioning to Adulthood Needs For Caregivers and CYSHCN

Transitioning to the adult education and health care system is especially difficult for those with SHCN. Many families report they have to initiate conversations and personally seek services for their young person themselves. Plans need to be formulated for the health care, education, and recreation/social interaction needs of CYSHCN and caregivers would benefit from assistance by someone that is knowledgeable of the post high school options for their children. Additionally, caregivers of CYSHCN should be guided through planning for the care of their children after they are no longer able to provide the care their children need.

6. Proactively Plan to Meet the Needs of Caregivers of CYSHCN

It is essential that interdisciplinary team members recognize the needs of caregivers of CYSHCN and be knowledgeable of the resources in their communities. As mentioned, the caregivers may sacrifice caring for themselves in order to care for their children. In this chapter, suggestions will be provided for ways to help meet the needs of caregivers of CYSHCN.

More Courses in this Series

Overview of Pediatric Rehabilitation Nursing

Presented by Cyndi Cortes, DrPH, MSN, MRE, CPNP-PC, CRRN, COI

Overview of Pediatric Rehabilitation Nursing

Subscribe now, and access clinical education and patient education—anytime, anywhere—with video instruction from recognized industry experts.
This course is part of our CRRN® Prep-Program. Learn more about the full prep-program here: MedBridge CRRN® Prep-Program.

The CRRN: Pediatric Perspectives course will review important developmental and cognitive theories that should guide the care provided by rehabilitation nurses to children in various settings. Participants will gain an understanding of common congenital and acquired conditions and will be able to describe how rehabilitation issues should be managed. Important legislation and community services for children and adolescents with special health care needs will also be discussed.

CRRN® is a registered trademark of the Association of Rehabilitation Nurses.

View full course details

Growth and Development: Infancy Through Adolescence

Presented by Cyndi Cortes, DrPH, MSN, MRE, CPNP-PC, CRRN, COI

Growth and Development: Infancy Through Adolescence

Subscribe now, and access clinical education and patient education—anytime, anywhere—with video instruction from recognized industry experts.
A working knowledge of typical growth and development is essential for nurses and others that provide health care and other services to children, their parents, or caregivers. There is a plethora of evidence documenting the stages of cognitive or intellectual, moral, motor, physical, and social developmental skills. In this course, an overview of expected growth and development based on chronological age from birth through young adulthood will be reviewed.

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Rehabilitation Nursing for Common Congenital Pediatric Conditions

Presented by Cyndi Cortes, DrPH, MSN, MRE, CPNP-PC, CRRN, COI

Rehabilitation Nursing for Common Congenital Pediatric Conditions

Subscribe now, and access clinical education and patient education—anytime, anywhere—with video instruction from recognized industry experts.
Approximately 15% of children and youth in the United States have special health care needs, and about 5% of children have functional limitations (NSCH, 2011/12). Typically, individuals with physical limitations receive medical and therapeutic interventions from a variety of rehabilitation professionals. Congenital conditions in children and youth requiring rehabilitation services typically have multifactorial causation, but usually affect the central nervous system and/or the musculoskeletal system.

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Rehabilitation Nursing for Selected Acquired Pediatric Conditions

Presented by Cyndi Cortes, DrPH, MSN, MRE, CPNP-PC, CRRN, COI

Rehabilitation Nursing for Selected Acquired Pediatric Conditions

Subscribe now, and access clinical education and patient education—anytime, anywhere—with video instruction from recognized industry experts.
Approximately 15% of children and youth in the United States have special health care needs and about 5% of children have functional limitations (NSCH, 2011/12). Typically, individuals with physical limitations receive medical and therapeutic interventions from a variety of rehabilitation professionals. This course presents an overview of the most commonly traumatic or acquired conditions in children and adolescents. The etiology and incidence of these conditions are described and the aspects of care unique to pediatrics are emphasized. Traumatic brain injury, stroke, spinal cord injury, and burns are discussed.

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