Great Expectations: A Position Description for Parents as Caregivers: Part II

Sullivan-Bolyai, Susan; Sadler, Lois; Knafl, Kathleen A.; Gilliss, Catherine L.
January 2004
Pediatric Nursing;Jan/Feb2004, Vol. 30 Issue 1, p52
Academic Journal
Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. Part I of this two-part series (in the previous issue of Pediatric Nursing) reviewed both the adult and pediatric family caregiving literature within the context of four major categories of responsibilities: (a) managing the illness, which includes hands-on care, monitoring and interpreting signs and symptoms, as well as problem-solving and decision-making processes; (b) identifying, accessing, and coordinating resources, which involves assessing and negotiating community resources including health care providers; (c) maintaining the family unit, including balancing illness and family demands while at the same time attempting to meet the health and developmental needs of each family member; and (d) maintaining self, including physical, emotional, and spiritual health.. Part II presents a multifaceted list of parent caregiving management responsibilities and associated activities, and discusses nursing implications. The list was developed to facilitate "caregiving" dialogue between health care providers and families of children with chronic conditions. It is hoped that through such partnerships creative ways of educating, preparing, and supporting caregivers will be generated.


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