James Kelly, Keegan-Wells Diane, Hinds Pamela S, Kelly Katherine P, Bond Dana, Hall Brenda, Mahan Rosemary, Moore Ida M Ki, Roll Lona, Speckhart Beth
Sutter Medical Center, Memorial Campus, 5275 F Street, Sacramento, CA 95819, USA.
J Pediatr Oncol Nurs. 2002 Nov-Dec;19(6):218-28. doi: 10.1177/104345420201900606.
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.
父母积极参与对正在接受癌症治疗的患病子女的直接照料，包括提供并监督治疗，以及处理与治疗或疾病本身相关的症状。对于父母在履行照料职责时，哪些因素对他们有帮助或造成阻碍，以及照料角色对父母产生了何种影响，我们知之甚少。在这项描述性探索性研究中，151位父母回答了新开发的《照料患癌子女》工具中六个开放式问题中的一个或多个。使用语义内容分析技术对这1280条回答进行了分析。报告中对父母照料影响最常见的涉及负面的身心健康。一位家长回答说：“你感觉自己对生活完全失去了掌控。生活不再是自己的了。”照料角色最需要的帮助形式包括定期从直接照料中解脱出来、持续获得家务方面的帮助，以及各种能够节省时间和精力的便利形式。父母照料者认为最有帮助的两种实际帮助包括医疗保健提供者及时提供有关孩子健康状况的教育，以及家人、朋友和其他人给予的情感支持。这些研究结果为未来的干预措施提供了依据，这些干预措施可能会减轻照料需求对癌症患儿父母的影响。
