DISABLED CHILDREN CAREGIVERS

Caregivers of Children with Disabilities



Caregivers of Children with Disabilities

Introduction

Caregivers of children with chronic illnesses or disabilities, face challenges in their various roles, as parents and providers of ongoing medical needs that often impact the daily life of the family. Research has shown that many of these caregivers experience emotional distress and psychological maladjustment due to multiple factors associated with being a caregiver.

Description

Children, adolescents and young adults can experience neuro disabilities that vary in terms of onset, type, course, severity and impact. Neuro disabilities may occur at or before birth as a result of in utero insult or birth trauma with associated anoxia (Yasko 2008, 394). The neurologic insult may be acquired later in life, such as traumatic injury secondary to motor vehicle accidents, or injury caused by perpetrators such as with Shaken Baby Syndrome or any other accident or injury, that would cause trauma to the brain and subsequent anatomical damage or anoxia. Neuro disability states are also present in a wide variety of congenital and hereditary disorders (Troini 2006, 48).

Advances in treatment have resulted in improved survival rates among many people with severe disabilities, chronic illnesses and permanent and life-threatening injuries, often allowing them to live well into adulthood. However, increased survivorship has resulted in growing numbers of children and adults living with long-term severe disabilities, including neuro disabilities. To meet the reality of caring for these survivors, there has been a significant shift from primarily hospital-based care to family- centered, home-based care with the widely held assumption that returning home to receive care is the best option for the family (Hamby 2004, 152).

As with various caregiver roles, burnout and psychological distress are commonplace, especially when the demands are great and life expectancy is decreased compared to the general population. Several themes are identified regarding caregivers ...