title: The care of my child with cancer: parents' perceptions of caregiving demands.
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.
authors.affiliation: Sutter Medical Center, Memorial Campus, 5275 F Street, Sacramento, CA 95819, USA.
authors.forename: Kelly
authors.initials: K
authors.lastname: James
authors.forename: Diane
authors.initials: D
authors.lastname: Keegan-Wells
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Katherine P
authors.initials: KP
authors.lastname: Kelly
authors.forename: Dana
authors.initials: D
authors.lastname: Bond
authors.forename: Brenda
authors.initials: B
authors.lastname: Hall
authors.forename: Rosemary
authors.initials: R
authors.lastname: Mahan
authors.forename: Ida M Ki
authors.initials: IM
authors.lastname: Moore
authors.forename: Lona
authors.initials: L
authors.lastname: Roll
authors.forename: Beth
authors.initials: B
authors.lastname: Speckhart
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002669:Child Welfare; D002675:Child, Preschool; D004644:Emotions; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D010287:Parent-Child Relations; D010465:Perception