Abstract and Introduction
Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. This two-part series examines parental roles and responsibilities in detail. Part I will review both the adult and pediatric family caregiving literature. It will also describe four major caregiving responsibilities with associated tasks in both direct and indirect illness-related care, which parents are expected to perform when caring for a child with a chronic condition. These are: (a) managing the illness; (b) identifying, accessing, and coordinating resources; (c) maintaining the family unit; and (d) maintaining self. Part II (to be published in the next issue of Pediatric Nursing) will present a multifaceted list of parent caregiving management responsibilities and associated activities drawn from the literature. Clinical nursing implications associated with caregiver responsibilities and tasks will also be addressed.
The number of families caring for members having a chronic condition has grown tremendously over the past 2 decades. It has been reported that there are approximately 22.4 million caregivers providing some type of chronic care to adults in their home (Levine, 1997). Although not as numerous, an estimated 4.4 million children younger than 18 years of age have a chronic condition that limits their activities (Newacheck & Halfon, 1998) and can be assumed to necessitate some type of parental caregiving responsibility.
"Informal caregiver" is a term often used in the adult empirical literature to describe individuals who provide care for a family member - most often a spouse, significant other, or elderly parent - who has a chronic condition (McGarry & Arthur, 2001). The caregiving role has also been described in both adult and pediatric literature as a "career" in which caregiving is the main focus (Lindgren, 1993; Turner-Henson, Holaday, & Swan, 1992). Informal caregivers, like parents caring for young children with a chronic condition, tend to reside in the same home and provide day-to-day management with little help from others. The amount of care varies depending on the characteristics of the chronic condition, such as the illness course and prognosis. Caregiving may require only minimal support, such as preparation of meals, or it might encompass more complex care, such as medication administration and various treatments throughout the day.
There is a large body of pediatric family literature that focuses on the demands and stressors of care for parents of children having a chronic condition (Burke, Kauffman, Harrison, & Wiskin, 1999; Canam, 1993; O'Brien, 2001; Turner-Henson et al., 1992). In addition, much can be learned from the adult caregiver literature, which includes a detailed description of specific responsibilities and activities necessary to provide care to loved ones. Many of the adult informal caregiving responsibilities and activities parallel the care that parents provide children with chronic conditions. For instance, when an adult has Alzheimer's disease, the caregiver must address communication and behavioral concerns, as must parents of young children with chronic conditions. Additionally, over time, both parents of children with a chronic condition and informal caregivers of adults are at risk for burnout associated with the complexity and ongoing responsibility of care (Burke & Greenglass, 1995). When considering the multifaceted activities informal caregivers are expected to perform, one wonders if the term "informal caregiver" adequately captures the full essence of the role.
When educating parents of a child newly diagnosed with a chronic condition, health care providers tend to address the obvious needs of that child's direct care such as illness-related treatments, activities of daily living, assessing the medical condition, what to do in an emergency situation, where to go for care, and the like. Then, providers typically encourage the parents to go home and live as "normally as possible."
In fact, most families having a child with a chronic condition cope reasonably well, and their children appear to thrive at home (O'Brien, 2001). However, providers rarely have an opportunity to observe how these informal caregivers perform health-related responsibilities and tasks outside of the hospital setting, while also managing a variety of other family activities and tasks. Do we really prepare families to accomplish all that we ask and expect them to do? Do we adequately educate and support them with the day-to-day management skills necessary to be healthy and successful caregivers? The purpose of these articles (Part I and II) is to describe four major caregiving responsibilities with associated tasks in both direct and indirect illness-related care that mothers and fathers are expected to perform when caring for a child with a chronic condition. Literature on adult and child chronic illness caregiving was used to develop a list of parent "work" that will be presented in Part II. Clinical nursing implications associated with caregiver responsibilities and tasks will also be addressed in Part II.
Pediatr Nurs. 2003;29(6) © 2003 Jannetti Publications, Inc.
Cite this: Great Expectations: A Position Description for Parents as Caregivers: Part 1 - Medscape - Dec 01, 2003.