ABSTRACT
Parents are actively involved in the direct care of their ill child receiving cancer treatment by providing and monitoring therapy and by managing symptoms related to the therapy or to the disease itself. Little is known about parents' perception of what helps or hinders them with their caregiving responsibilities or what effect the caregiving role has on the parent. In this descriptive, exploratory study, 151 parents responded to one or more of six open-ended questions that were part of the newly developed instrument, Care of My Child with Cancer. The 1,280 responses were analyzed using a semantic content analysis technique. The most frequently reported effect on parental caregiving involved negative physical and emotional health. One parent responded, "You feel like you lose all control over your life. It's no longer your own." The most desired forms of assistance with the caregiving role were periodic relief from direct caregiving, ongoing assistance with household responsibilities, and different forms of conveniences that could save time and energy. Two types of actual assistance found to be most helpful by parental caregivers included timely education about their child's health status from health care providers and emotional support from family members, friends, and others. These study findings provide the basis for future interventions that may diminish the effect that caregiving demands place on parents of children with cancer.
Subject(s)
Caregivers/psychology , Child Welfare , Neoplasms/therapy , Parent-Child Relations , Adolescent , Adult , Child , Child, Preschool , Emotions , Female , Health Status , Humans , Male , PerceptionABSTRACT
The growing societal trend toward delivering more and more illness-related care in the home, driven both by family preferences and by mandates from third-party reimbursers, places additional responsibilities for increasingly complex caregiving on parents of children with serious illness. This article reports on the development and initial field test of The Care of My Child with Cancer, a caregiving demand instrument specific to the childhood cancer population. The instrument demonstrated strong internal consistency and test-retest reliability, and exploratory factor analysis provided initial evidence for the instrument's construct validity. The instrument will now be applied in a collaborative program of nursing research to further investigate caregiving demand and ultimately to develop nursing interventions to maximize medical and quality of life outcomes for children with cancer and their families.
