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不止是一份工作:囊性纤维化患者的职业发展

More than a job: Career development of individuals with cystic fibrosis.

作者信息

Saldana Pablo S, Pomeranz Jamie L, Young Mary Ellen

机构信息

Nemours Children's Clinic, Cystic Fibrosis Center, Jacksonville, FL, USA.

University of Florida, Behavioral Science and Community Health, Gainesville, FL, USA.

出版信息

Work. 2018;59(3):425-437. doi: 10.3233/WOR-182694.

Abstract

BACKGROUND

Cystic fibrosis and its employment corollaries have received little attention despite the fact that complications of CF represent numerous theorized barriers to optimal career outcomes.

OBJECTIVES

The objective of the study was to conduct grounded theory research that results in an understanding of the employment experiences of people with CF and ultimately a substantive grounded theory of career development applicable to individuals with this disease.

METHODS

This study utilized the grounded theory method of qualitative inquiry. A purposive sample of ten young adults with CF participated in in-depth semi-structured qualitative interviews. Analysis of the interview transcripts followed the constant comparative approach to coding, which identified core themes and sub-themes and culminated in a conceptual framework of variables influencing employment and career development.

RESULTS

An ecologically-based grounded theory of career development was developed. Major themes that influenced employment and career development were illness appraisal, occupational compromise, persistence, and altruism. Two patterns of career development outcomes emerged - the uninterrupted and the interrupted.

CONCLUSIONS

A complicated interaction of numerous ecological variables (individual characteristics, personal contextual factors, mediating factors, and the environment) collectively influenced career development. The presence of CF alone did not guarantee negative effects on career development.

摘要

背景

尽管囊性纤维化及其相关职业影响因素已被理论化地认为是实现最佳职业成果的众多障碍,但这一疾病及其职业相关影响却很少受到关注。

目的

本研究旨在进行扎根理论研究,以了解囊性纤维化患者的就业经历,并最终形成适用于该疾病患者的职业发展实质性扎根理论。

方法

本研究采用定性研究的扎根理论方法。选取了10名患有囊性纤维化的年轻成年人作为有目的的样本,参与了深入的半结构化定性访谈。对访谈记录的分析采用持续比较编码方法,确定了核心主题和子主题,并最终形成了一个影响就业和职业发展的变量概念框架。

结果

构建了一个基于生态学的职业发展扎根理论。影响就业和职业发展的主要主题包括疾病评估、职业妥协、坚持和利他主义。出现了两种职业发展结果模式——不间断型和间断型。

结论

众多生态变量(个体特征、个人背景因素、中介因素和环境)之间复杂的相互作用共同影响了职业发展。仅患有囊性纤维化并不一定会对职业发展产生负面影响。

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