Stetz K M, McDonald J C, Compton K
Seattle Pacific University in Seattle, WA, USA.
Oncol Nurs Forum. 1996 Oct;23(9):1422-7.
PURPOSE/OBJECTIVES: To determine the information needs of family members of people undergoing marrow transplantation as well as their actions to meet those needs.
Descriptive, cross-sectional, qualitative design.
Marrow transplant units in the Pacific Northwestern United States.
19 adult family members of people who had undergone marrow transplants.
Researchers conducted four focus group interviews. Three served as data generation interviews, and the fourth served as the validation interview. A transcriptionist recorded the subjects' responses, which then were analyzed using constant comparative techniques.
Themes emerged from the data in five categories: (a) Preparing for Caregiving (seeking and acquiring health care, obtaining information and materials, and evaluating the validity of information), (b) Managing the Care (providing physical care, protecting, maintaining the patient's connection with life, and advocating), (c) Facing Challenges (personal and interpersonal stress, communication barriers with healthcare professionals, and healthcare system barriers), (d) Developing Supportive Strategies (community resources, personal and self-care resources, and healthcare system facilitators), and (e) Discovering Unanticipated Rewards and Benefits (personal growth and family cohesion).
Family members, as well as patients undergoing marrow transplant, experience a unique set of information needs and demands as a result of this experience. However, these demands can be mitigated by actions that provide appropriate education strategies and foster a sense of caring and a nurturing way of interacting among the family, healthcare professionals, and the healthcare system.
Healthcare professionals need to acknowledge the caregiving role and actively involve and support the family caregiver throughout the transplant experience.
目的/目标：确定接受骨髓移植者的家庭成员的信息需求以及他们满足这些需求的行动。
描述性、横断面、定性设计。
美国太平洋西北部的骨髓移植单位。
19名接受过骨髓移植者的成年家庭成员。
研究人员进行了四次焦点小组访谈。三次用于生成数据，第四次用于验证。一名转录员记录了受试者的回答，然后使用持续比较技术进行分析。
数据中出现了五个类别的主题：(a) 为护理做准备（寻求和获取医疗保健、获取信息和材料以及评估信息的有效性），(b) 管理护理（提供身体护理、保护、维持患者与生活的联系以及进行倡导），(c) 面对挑战（个人和人际压力、与医疗保健专业人员的沟通障碍以及医疗保健系统障碍），(d) 制定支持策略（社区资源、个人和自我护理资源以及医疗保健系统促进因素），以及(e) 发现意外的回报和益处（个人成长和家庭凝聚力）。
家庭成员以及接受骨髓移植的患者由于这种经历而有一系列独特的信息需求。然而，通过提供适当教育策略以及在家庭、医疗保健专业人员和医疗保健系统之间培养关爱意识和互动方式的行动，可以减轻这些需求。
医疗保健专业人员需要承认护理角色，并在整个移植过程中积极让家庭护理人员参与并给予支持。
