适应性挑战下年龄相关性黄斑变性患者疾病获益感的现象学研究

A phenomenological study on benefit finding of patients with age-related macular degeneration under adaptive challenges

目的了解年龄相关性黄斑变性(AMD)患者在适应视力下降挑战的长期治疗中产生的疾病获益感, 为改善患者的生命质量提供思路。方法 2023年1—3月采用质性研究中的现象学研究方法, 对南通大学附属医院眼科通过目的抽样法选取的20例接受药物注射治疗的AMD患者进行半结构式访谈。由2名访谈者反复阅读访谈记录的文字资料, 逐字逐句分析其含义并采用Colaizzi 7步分析法对转录资料进行分类整理、编码与归纳。结果 20例患者中男9例, 女11例, 年龄56~81岁。AMD患者在适应视力下降挑战的长期治疗中获得的疾病获益感可归纳为4个主题:适度的决策控制感、满意的社会支持、积极的疾病自我管理、改善的生命质量。结论 AMD患者在适应视力下降挑战的长期治疗中存在疾病获益感, 医务人员应引导患者从负性事件中寻求疾病获益感,识别患者面临的适应性挑战并发挥适应性领导技能, 多渠道提供低视力康复服务, 帮助患者提高适应性改变能力, 以期进一步改善患者的生命质量。

Objective To find benefit of adaptive challenges in age-related macular degeneration(AMD)patients of long-term treatment in the challenge of vision decline,and provide new ideas for improving the quality of life of patients.Methods It was a phenomenological study from qualitative research,selected by purpose sampling method and semi-structured interview which involved 20 AMD patients who received intravitreal treatment of drug in the Ophthalmology Department of Affiliated Hospital of Nantong University from January to March 2023.Two interviewees comprehensively read and analyzed the transcript of the interview and its meaning,subsequently Colaizzi seven-step analysis method was used to classify and encode the transcribed data.Results Among 20 patients,there were 9 males and 11 females,aged 56-81 years old.Patients with AMD experience a sense of benefit in their long-term management of the condition,adapting to the challenges posed by declining strength,which could be summarized into four main themes:moderate sense of decision control,satisfactory social support,active self-management of the disease,and an improvement in quality of life.Conclusions Patients with AMD experience a sense of disease-related benefit during the long-term management of visual acuity challenges.Healthcare professionals should guide patients to seek this benefit from adverse events,identify the adaptive challenges patients face,and leverage their adaptive leadership skills.Furthermore,offering multi-channel low vision rehabilitation services can assist patients in enhancing their adaptive capabilities,ultimately contributing to further improving their quality of life.