ABSTRACT

The aim of this study was to explore the experiences of occupational disruption during a pandemic among individuals living with chronic disease, with particular attention to experiences related to managing disease(s) and routine healthcare. This qualitative descriptive study using virtual semi-structured interviews was conducted with 23 participants diagnosed with chronic disease(s) for at least 2 years, living in New Brunswick, Canada. Three overarching themes, and seven sub-themes emerged from the thematic analysis: 1) reactions (sub-themes: occupational loss and loneliness; fear and vulnerability); 2) adaptations (sub-themes: engaging in new or re-discovered occupations; prioritizing self-management; changing perspective); and 3) barriers (sub-themes: limited access to care; environmental challenges). Individuals living with chronic disease modified what they did to provide structure and purpose in response to restrictions imposed on their regular day-to-day occupations and the feelings this evoked. Notably, participants reported a heightened engagement in occupations focused on maintaining health and well-being; however, not all adaptations resulted in positive outcomes. Reactions such as fear and vulnerability influenced behavior and contributed to apprehension to seek out medical care. Changes in the environment also created barriers and challenged the participants’ ability to adapt. This research offers the first glimpse inside this occupational paradigm, to not only enhance understanding of the impact of COVID-19 on individuals living with chronic disease, but also to strengthen knowledge of what is needed to improve communication, organization, and the provision of care for individuals living with chronic disease both during a pandemic and in everyday life.

摘要

本研究的目的是探讨慢性病患者在大流行期间职业中断的经历，特别关注与管理疾病和常规医疗保健相关的经历。这项使用虚拟半结构化访谈的定性描述性研究对居住在加拿大新不伦瑞克省的 23 名被诊断患有慢性病至少 2 年的参与者进行。从主题分析中出现了三个总体主题和七个子主题：1）反应（子主题：职业损失和孤独；恐惧和脆弱性）；2) 适应（子主题：从事新的或重新发现的职业；优先考虑自我管理；改变观点）；3) 障碍（子主题：获得护理的机会有限；环境挑战）。患有慢性病的人改变了他们所做的事情，以提供结构和目的，以应对对其日常日常活动的限制以及由此引发的感受。值得注意的是，参与者报告说，他们更多地参与了以维持健康和福祉为重点的职业；然而，并非所有的调整都产生了积极的结果。恐惧和脆弱等反应会影响行为，并导致担心寻求医疗服务。环境的变化也造成了障碍，挑战了参与者的适应能力。这项研究提供了对这种职业范式的第一次了解，不仅可以加深对 COVID-19 对慢性病患者影响的理解，还可以加强对改善沟通所需的知识，