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The Health of Caregivers for Children with Special Needs

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Mother and daughter with down syndromeIn many of our caregiving blog articles we discuss issues and concerns surrounding the topic of military caregiving and wounded warriors. However, the role of “military caregivers” could encompass not only those families caring for wounded service members, but military families caring for someone with special needs.

There are approximately 5.9 million children in this country with severe disabilities, most of which are being cared for at home by their parents and families in an informal caregiving setting [1]. Studies also suggest that informal caregiving for a child with disabilities is associated with poor emotional and physical health in caregivers. Below are a few examples of how a parent’s physical and emotional well-being can be negatively impacted by the demands of caregiving.

Negative Impacts on Caregiver Health

  • Chronic Fatigue – Example: Providing long-term care for severely disabled
  • Back and shoulder pain – Example: Regularly lifting children
  • Direct injury – Example: Injury resulting from child’s occasional violent behaviors
  • Emotional distress – Example: Concerns about the future; finances; meeting the day-to-day needs of child, etc.

In additional to the physical and emotional toll that caregiving places on special needs parents, the unpredictable and uncontrollable nature of parenting a child with disabilities can cause caregiver stress. Caregivers may feel a lack of control of day-to-day activities, such as frequent requests from schools to immediately retrieve the child because he or she is too ill to participate.

Also some parents may feel uncertain about how to care for their other children in the home and provide the necessary attention, in addition to caring for the special needs child. Even in a recent study conducted by the University of Utah, researchers found parents were using their respite time to care for other family members [2].

Caregivers of all stripes need to meet their own needs in order to effectively care for another person. This is especially important when providing care for young persons with developmental disabilities as they may be less able to compensate than their adult counterparts. A caregiver who does not take care of her/himself may find that they are eventually unable to take care of anyone.

References

[1] Perrin, J. (2002). Health services research for children with disabilities. Milbank Quarterly, 80, 303-324.  

[2] Murphy, N., Christian, B., Caplin, D., Young, P., (2006). The health of caregivers for children with disabilities: caregiver perspectives. Child: Care, Health and Development,         33, 2, 180-187.


This MFLN-Military Caregiving concentration blog post was published on July 29, 2015.

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