Chronic illness experiences for young adults: a qualitative study

青年人慢性病经历:一项定性研究

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Abstract

OBJECTIVES: To explore the experience and impact of physical chronic illnesses in the lives of young people. DESIGN: Qualitative study using semi-structured interviews. SETTING: Interviews were conducted between March 2023 and February 2024 either via video call (14) or face-to-face (19). Recruitment was done primarily through flyers in public spaces, specialists' waiting rooms and research pages of chronic disease websites and supplemented through snowballing. PARTICIPANTS: Young adults aged 19-29 years (n=33, mean age 23 years) who had lived with a physical chronic illness for 6 months or more. All participants lived in Australia. RESULTS: Three key findings were identified: (i) chronic illness impacts the lives of young people in a particular way, as participants reported that their young age, and the youth of their peers, influenced their interactions with healthcare professionals, their access to support and their sense of isolation; (ii) participants struggled to come to terms with, and describe, the influence of their chronic illness on their overall life and lifestyle, particularly when outside of the 'expected' symptoms of disease; (iii) the lack of education and guidance about the wide range of impacts that chronic illness can have seemed to compound participants' reported sense of guilt, self-blame and exhaustion. CONCLUSIONS: This study illustrates how youth is a critical contextual element when considering different population groups' challenges in managing chronic illnesses. It finds that young people may internalise blame for these challenges despite the fact they are structural issues. Understanding this context will aid the provision of better healthcare experiences and support programmes. Further research could help establish better expert and peer support models to help adults and young people better anticipate, understand and manage the wide-reaching impacts of chronic illness.

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