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Refereed Publications

  1. Sullivan-Bolyai, S. and Sadler, L. and Knafl, K. A. and Gilliss, C. L., Great expectations: a position description for parents as caregivers: Part I., Pediatric nursing, vol. 29 no. 6 (Nov-Dec, 2003), pp. 457-61, ISSN 0097-9805
    (last updated on 2015/02/11)

    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.

    Adaptation, Psychological • Caregivers* • Chronic Disease* • Decision Making • Family Relations • Humans • Parents* • psychology