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“我们要让‘大便’变得有吸引力”:一项探索炎症性肠病青少年治疗依从性的定性研究。

'We need to make "shit" sexy' a qualitative study exploring treatment adherence in adolescents with inflammatory bowel disease.

作者信息

Screti Cassandra, Atkinson Lou, Shaw Rachel, Muhammed Rafeeq, Heath Gemma

机构信息

Institute of Health & Neurodevelopment, Aston University, Birmingham, UK.

School of Health and Life Sciences, Aston University, Birmingham, UK.

出版信息

Health Psychol Behav Med. 2025 May 5;13(1):2500323. doi: 10.1080/21642850.2025.2500323. eCollection 2025.

Abstract

Adolescents with inflammatory bowel disease (IBD) are faced with the complexities of acquiring self-management behaviours at a time when they are also navigating developmental challenges associated with adolescence. To date, limited treatment adherence interventions exist to support adolescents with IBD. To explore the experience and support needs of adolescents with IBD to facilitate optimum treatment adherence. Thirty-three semi-structured interviews were conducted with adolescents with IBD ( = 12), parents of adolescents with IBD ( = 13) and healthcare professionals who support adolescents with IBD ( = 8). Adolescents and parents completed a creative task to prioritise adherence barriers and adherence intervention strategies. The analysis generated three key themes: (1) striving for normality, (2) taking responsibility for IBD management and (3) seeking supportive environments. Living with IBD was often perceived as living a limited life, as adolescents had to manage their symptoms, which resulted in feelings of difference and stigmatisation. To manage their IBD, adolescents were required to develop treatment routines and communicate their health needs. Parents wanted to protect their child from the burden of living with IBD. Synthesis of findings with a creative mapping task generated seven priorities for intervention. Adolescents discussed the complexity behind their adherence behaviours and the formation of treatment perceptions. The adherence barriers identified within this research can be utilised to develop a treatment adherence intervention that is effective for adolescents with IBD.

摘要

患有炎症性肠病(IBD)的青少年在应对与青春期相关的发育挑战时,面临着习得自我管理行为的复杂性。迄今为止,针对IBD青少年的治疗依从性干预措施有限。为了探究IBD青少年的经历和支持需求,以促进最佳治疗依从性。对12名IBD青少年、13名IBD青少年的父母以及8名支持IBD青少年的医疗保健专业人员进行了33次半结构化访谈。青少年和父母完成了一项创造性任务,以确定依从性障碍和依从性干预策略的优先级。分析产生了三个关键主题:(1)追求正常;(2)对IBD管理负责;(3)寻求支持性环境。患有IBD通常被视为过着受限的生活,因为青少年必须管理自己的症状,这导致了差异感和污名化。为了管理自己的IBD,青少年需要制定治疗常规并传达他们的健康需求。父母希望保护孩子免受IBD生活负担的影响。通过创造性映射任务对研究结果进行综合,产生了七个干预重点。青少年讨论了他们依从行为背后的复杂性以及治疗观念的形成。本研究中确定的依从性障碍可用于开发一种对IBD青少年有效的治疗依从性干预措施。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/97e0/12057774/c4b55cd0bf68/RHPB_A_2500323_F0001_OC.jpg

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