A Focus Group Study of Self-Management in Patients With Glomerular Disease.
A Focus Group Study of Self-Management in Patients With Glomerular Disease.
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DOI：
10.1016/j.ekir.2021.10.011
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发表时间：
2022-01
影响因子：
6
通讯作者：
Tong A
中科院分区：
文献类型：
--
作者：
Carter SA;Teng C;Gutman T;Logeman C;Cattran D;Lightstone L;Bagga A;Barbour SJ;Barratt J;Boletis J;Caster DJ;Coppo R;Fervenza FC;Floege J;Hladunewich MA;Hogan JJ;Kitching AR;Lafayette RA;Malvar A;Radhakrishnan J;Rovin BH;Scholes-Robertson N;Trimarchi H;Zhang H;Azukaitis K;Cho Y;Viecelli AK;Dunn L;Harris D;Johnson DW;Kerr PG;Laboi P;Ryan J;Shen JI;Ruiz L;Wang AY;Lee AHK;Ka Shun SF;Ka-Hang Tong M;Teixeira-Pinto A;Wilkie M;Alexander SI;Craig JC;Martin A;Tong A
患有肾小球疾病的患者在管理他们的治疗、饮食、预约和监测健康和疾病的一般和具体指标时会出现损害他们身心健康的症状。我们试图描述患者及其护理伙伴对肾小球疾病自我管理的看法。我们在澳大利亚、香港、英国和美国进行了16个焦点组，涉及肾小球疾病成人患者（n = 101）及其护理伙伴（n = 34）。按主题分析成绩单。我们确定了以下4个主题：自主权（通过理解获得信心，掌握疾病和治疗，学习积极的健康方法）;因治疗负担加重而不堪重负（经济上受到破坏和耗尽，因副作用和危害而士气低落，因支离破碎和缺乏灵活性的护理而沮丧，担心可能的药物危害）;争取稳定和正常（作出个人牺牲，最大限度地参与生活，注意身体迹象，避免不稳定的健康状况，将药物纳入日常生活）;和健康维持关系的必要性（通过社会支持，履行有意义的责任，分享和规范经验，寻求信任和尊重的联盟）。肾小球疾病患者及其护理伙伴重视他们的自主能力和疾病所有权，健康稳定性以及支持自我管理的关系。针对加强这些因素的策略可能会提高自我效能，改善肾小球疾病患者的护理和预后。
Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.
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影响因子：
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