目的 探索成人初显期强直性脊柱炎患者自我管理困境的体验，为构建成人初显期强直性脊柱炎患者自我管理干预方案提供参考依据。 方法 采用描述性现象学研究方法，于2022年8月至2023年3月对南京鼓楼医院风湿免疫科14例成人初显期强直性脊柱炎患者进行半结构式深度访谈，并运用Colaizzi 7步法对访谈资料进行分析。 结果 共14例患者完成访谈，男10例，女4例，年龄21~30岁。成人初显期强直性脊柱炎患者进行自我管理时，存在角色适应不良困境与疾病管理障碍困境，其中角色适应不良困境包括疾病管理角色适应不良以及社会角色适应不良；疾病管理障碍困境包括自我管理意识薄弱、自我管理信息支持不足、自我管理技能欠缺以及自我管理行为依从性差。 结论 成人初显期强直性脊柱炎患者角色适应能力及自我管理能力严重不足，亟需构建成人初显期强直性脊柱炎患者健康管理策略，帮助其提升角色适应与疾病管理水平。 Objective To explore the experience of self-management dilemma ofadults with emerging ankylosing spondylitis, and to provide reference for the construction of self-management intervention strategies for emerging adults with ankylosing spondylitis. Methods Descriptive phenomenology was used to conduct in-depth interviews with 14 adults with emerging ankylosing spondylitis in the Rheumatology and Immunology Department of Drum Tower Hospital Affiliated to Medical College of Nanjing University from August 2022 to March 2023. The interview data were analyzed by Colaizzi′s seven-step analysis method. Results A total of 14 patients completed the interview,10 males, 4 females, aged 21-30 years. In adults with emerging ankylosing spondylitis, there were dilemmas of role maladjustment and disease management disorder, including role maladjustment of disease management and social role maladjustment. Barriers to disease management included weak self-management awareness, insufficient support for self-management information, inadequate self-management skills, and poor compliance with self-management behaviors. Conclusions The role adaptation and self-management ability of adults with emerging ankylosing spondylitis are seriously inadequate. It is urgent to construct health management strategies for adults with emerging ankylosing spondylitis to help them improve the level of role adaptation and disease management.
A qualitative study of self-management dilemmas in adults with emerging ankylosing spondylitis
Objective To explore the experience of self-management dilemma ofadults with emerging ankylosing spondylitis, and to provide reference for the construction of self-management intervention strategies for emerging adults with ankylosing spondylitis. Methods Descriptive phenomenology was used to conduct in-depth interviews with 14 adults with emerging ankylosing spondylitis in the Rheumatology and Immunology Department of Drum Tower Hospital Affiliated to Medical College of Nanjing University from August 2022 to March 2023. The interview data were analyzed by Colaizzi′s seven-step analysis method. Results A total of 14 patients completed the interview,10 males, 4 females, aged 21-30 years. In adults with emerging ankylosing spondylitis, there were dilemmas of role maladjustment and disease management disorder, including role maladjustment of disease management and social role maladjustment. Barriers to disease management included weak self-management awareness, insufficient support for self-management information, inadequate self-management skills, and poor compliance with self-management behaviors. Conclusions The role adaptation and self-management ability of adults with emerging ankylosing spondylitis are seriously inadequate. It is urgent to construct health management strategies for adults with emerging ankylosing spondylitis to help them improve the level of role adaptation and disease management.
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