Background

Due to the risk of cross-contamination and the enforcement of strict infection control guidelines, patients with cystic fibrosis (CF) and their families have engaged in social and physical distancing for the past decade and a half. Family members, such as parents, are considered to be a critical component of patients’ lives.

Objective

We explored how the parents of young people living with CF in Canada take up, navigate, and negotiate cross-contamination restrictions in the context of their everyday lives with their children.

Methods

We drew upon social theories of loneliness and also employed a thematic analytic descriptive qualitative approach. Our descriptive qualitative approach included conducting semi-structured interviews with 13 parents of young people with CF.

Results

Although the parents of young people with CF carefully adhered to the cross-contamination rules, many were critical of the practice and spoke to the social costs of physical distancing. As well, parents often felt isolated from social activities, their partners or spouses, and from access to informational resources within the CF community.

Conclusions

Perceptions of social isolation and loneliness were common in the reported experiences of CF parents in this sample. These parents also conveyed concerns about cross-contamination restrictions and other biomedical regimes, finding it difficult to balance the rules with their lives. Development of social support programs and interventions that address the themes identified may be useful.

中文翻译：

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规则之间的育儿：加拿大囊性纤维化年轻人的父母如何应对交叉污染限制

背景

由于交叉感染的风险和严格的感染控制指南的执行，囊性纤维化 (CF) 患者及其家人在过去十五年中一直保持社交和身体距离。家庭成员，例如父母，被认为是患者生活的重要组成部分。

客观的

我们探讨了加拿大患有 CF 的年轻人的父母如何在与孩子的日常生活中接受、导航和协商交叉感染限制。

方法

我们借鉴了孤独的社会理论，并采用了主题分析描述性定性方法。我们的描述性定性方法包括对 13 位患有 CF 的年轻人的父母进行半结构化访谈。

结果

尽管患有 CF 的年轻人的父母仔细遵守了交叉感染规则，但许多人对这种做法持批评态度，并谈到保持社交距离的社会成本。同样，父母经常感到与社交活动、他们的伴侣或配偶以及获取 CF 社区内的信息资源隔绝。

结论

在该样本中 CF 父母的报告经历中，对社会孤立和孤独的看法很常见。这些父母还表达了对交叉污染限制和其他生物医学制度的担忧，发现很难在规则与生活之间取得平衡。制定解决所确定主题的社会支持计划和干预措施可能会有所帮助。