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“青少年与青年癌症患者主任”:一个用于理解青少年和青年癌症患者心理社会经历的综合概念。

"The AYA Director": A Synthesizing Concept to Understand Psychosocial Experiences of Adolescents and Young Adults With Cancer.

作者信息

Belpame Nathalie, Kars Marijke C, Beeckman Dimitri, Decoene Elsie, Quaghebeur Marijke, Van Hecke Ann, Verhaeghe Sofie

机构信息

Author Affiliations: University Centre for Nursing & Midwifery, Department of Public Health, Faculty of Medicine and Health Sciences, Ghent University (Ms Belpame and Drs Van Hecke, Beeckman, and Verhaeghe); and Medical Oncology (Ms Decoene), Adult Haematology and Stem Cell Transplantation (Ms Quaghebeur), Ghent University Hospital, staff member, nursing director department (Dr Van Hecke), Belgium; and Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, the Netherlands (Dr Kars).

出版信息

Cancer Nurs. 2016 Jul-Aug;39(4):292-302. doi: 10.1097/NCC.0000000000000307.

Abstract

BACKGROUND

Adolescents and young adults with cancer face distinct psychosocial challenges because of the multiple developmental tasks associated with their age. Research on psychosocial care, directed to the unique needs and demands of this population, is limited.

OBJECTIVE

The aim of this study was to describe the psychosocial experiences of adolescents and young adults with cancer to further the understanding of the meanings they attribute to their experiences.

INTERVENTION/METHODS: This study used a qualitative design in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years.

RESULTS

Physical consequences of the disease and its treatment, loss of independence, and being alone were significant challenges. Major coping strategies of the participants were to avoid the possible threats to life and maintain a positive attitude and normal life. Participants were "directors" who took control in order to manage their illness, maintain a sense of control, and master their lives to the fullest extent possible.

CONCLUSIONS

The concept of the "AYA (adolescent and young adult) director" provides insight for healthcare professionals to understand how adolescents and young adults experience cancer.

IMPLICATIONS FOR PRACTICE

Throughout the cancer experience, participants wanted to be treated as individuals with specific needs and preferences. They preferred circumstances they are accustomed to; some found it difficult to accept restrictions imposed by the hospital. Adolescents and young adults with cancer want to be involved in the way healthcare professionals communicate with them and the information they are provided.

摘要

背景

患有癌症的青少年和青年面临着独特的心理社会挑战,因为他们这个年龄段有着多项发展任务。针对这一人群的独特需求和要求开展的心理社会护理研究有限。

目的

本研究旨在描述患有癌症的青少年和青年的心理社会经历,以加深对他们赋予自身经历的意义的理解。

干预措施/方法:本研究采用质性设计,对23名年龄在15至25岁之间的参与者进行了个人半结构式访谈。

结果

疾病及其治疗的身体后果、失去独立性和孤独是重大挑战。参与者的主要应对策略是避免对生命的潜在威胁,并保持积极的态度和正常生活。参与者是“主导者”,他们通过掌控局面来应对疾病,保持掌控感,并尽可能充分地掌控自己的生活。

结论

“青少年和青年主导者”这一概念为医疗保健专业人员理解青少年和青年如何经历癌症提供了见解。

对实践的启示

在整个癌症经历中,参与者希望被视为有特定需求和偏好的个体。他们更喜欢自己习惯的环境;有些人觉得难以接受医院施加的限制。患有癌症的青少年和青年希望参与到医疗保健专业人员与他们沟通的方式以及所提供的信息中。

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