Support for Caregivers of Children with Special Health Care Needs

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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

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…

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Chapters & learning objectives

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.

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