UWA Medical School, The University of Western Australia, Perth, Western Australia, Australia.
Cystic Fibrosis Research Unit, Institute for Respiratory Health (IRH), Nedlands, Western Australia, Australia.
Int J Qual Stud Health Well-being. 2022 Dec;17(1):2062820. doi: 10.1080/17482631.2022.2062820.
This study explores the concept of social connectedness for adults with Cystic Fibrosis (CF), generally and during the onset of the COVID-19 pandemic, to help inform contemporary CF healthcare. Social connectedness is an essential component of belonging and refers to an individual's sense of closeness with the social world. Unique disease factors make exploration of social connectedness pertinent, added to by COVID-19, with the CF population potentially facing increased risk for severe illness.
Seventeen adults with CF in Western Australia undertook interviews, with findings categorized as overarching themes.
In a general sense, participants described social connectedness challenges caused by CF, despite which they reported meaningful connections that benefits their mental and physical health. Within a COVID-19 specific context, participants demonstrated resilience in the face of adversity, highlighted the importance of empathy in relation to the pandemic, and described how social support is both an outcome and enhancer of social connectedness.
This study contributes to limited social connectedness literature within CF and chronic illness in general, highlighting the importance of social connectedness awareness raising, assessments and interventions in CF healthcare inside and outside the COVID-19 pandemic.
本研究探讨了囊性纤维化（CF）成人的社交联系概念，一般是在 COVID-19 大流行期间，以帮助为当代 CF 医疗保健提供信息。社交联系是归属感的重要组成部分，是指个体与社会世界的亲近感。独特的疾病因素使得社交联系的探索变得相关，再加上 COVID-19，CF 人群可能面临更严重疾病的风险。
西澳大利亚州的 17 名 CF 成年人进行了访谈，研究结果被归类为总体主题。
一般来说，参与者描述了 CF 引起的社交联系挑战，但他们报告了有意义的联系，这些联系有益于他们的身心健康。在 COVID-19 特定背景下，参与者在逆境中表现出韧性，强调了同理心在大流行中的重要性，并描述了社会支持如何既是社交联系的结果，也是其增强因素。
本研究为 CF 及一般慢性疾病中有限的社交联系文献做出了贡献，强调了在 COVID-19 大流行内外的 CF 医疗保健中提高对社交联系的认识、评估和干预的重要性。
