Aims: To provide an understanding of medical care adherence factors as reported by caregivers, adolescent, and adult patients with sickle cell disease and to analyse those concerns to identify barriers and facilitators about medical care adherence. Three topics influenced medical care adherence: the disease itself, therapeutics, and the healthcare system. This study will focus on the first topic.
Design: Qualitative explorative study, using semi-structured and life-experience interviews and manual inductive content analysis.
Methods: From December 2016 - March 2017, one semi-structured interview was conducted by a researcher with each of the 15 adolescent patients, 10 adult patients, and 19 caregivers in a French public hospital. Interviews were audio-taped and transcribed before a content analysis. Perceptions were classified into barriers and facilitators of medical care adherence.
Results: This article presents disease perceptions of caregivers and patients (adolescents and adults): daily management and social representations. These perceptions differ among parents, adolescent patients, and adult patients. However, all report important disease-related "limitations" in their lives. The objective for adults (parents and patients) is to "live with the disease" and to achieve this, they find coping resources. Two major resources expressed by adults emerged: social resources (support from friends, patients' association, and social visibility) and disease knowledge (theoretical and derived from experience). This is not the case of adolescents for whom social normality was the main concern.
Conclusion: Care management adherence is partly based on coping with the disease. Given the lower number of facilitators expressed by adolescents, it is essential to propose interventions in this population. It will help them cope with the disease and, consequently, optimize care management adherence.
Impact: Showing differences among caregivers, adult, and adolescent patient perceptions, this study impact future care practices. It revealed needs of intervention for adolescents.
目的: 了解医护人员、青少年和成年镰状细胞病患者所报告的医疗护理依从性因素,并对此类因素进行分析,以确定相关医疗护理的障碍和促进因素。 医疗护理依从性主要与三大主题相关:疾病本身、疗法和医疗系统。本研究将围绕第一个主题展开。 设计: 定性探索性研究,采用半结构化和生活经验访谈和手动归纳分析法。 方法: 研究人员在2016年12月至2017年3月间,对法国一家公立医院的15名青少年患者、10名成年患者和19名医护人员进行了一次半结构化访谈。该访谈内容在分析之录音和转录。此类人员的认知均可划分为医疗护理依从性的障碍和促进因素。 结果: 本文主要介绍医护人员和患者(青少年和成人)对疾病的认知,即:日常管理和社会表征。父母、青少年患者和成年患者对此观念的看法各异。然而,所有人都对其生活中疾病相关问题的“局限性”进行报告。成人(父母和患者)的目标是“与疾病抗争到底”,为实现此目标,其找到对应资源。成人主要需要两大资源,分别是:社会资源(朋友、患者协会和社会知名人士的支持)和疾病知识(理论和经验)。然而,这并不是青少年的关注点,对他们而言,社会常态更为重要。 结论: 护理管理依从性部分是以疾病对抗对基础。鉴于青少年所述促进者人数较少,有必要对此人群提出干预措施。此类措施的提出有助于其应对疾病,从而优化护理管理的依从性。 影响: 本研究显示护理人员、成人和青少年患者的认知差异,对未来护理实践有一定影响。本研究同样揭示青少年的干预需求。.
Keywords: coping with disease; medical care adherence; nursing; qualitative research; sickle cell disease.
© 2020 John Wiley & Sons Ltd.