Shtein Roni M, Newman-Casey Paula A, Herndon Leon, Coleman Anne L, Lee Paul P
*Kellogg Eye Center, University of Michigan, Ann Arbor, MI †Duke Eye Center, Duke University, Raleigh, NC ‡Jules Stein Eye Institute, UCLA, Los Angeles, CA.
J Glaucoma. 2016 Jul;25(7):e676-80. doi: 10.1097/IJG.0000000000000332.
To investigate the role of the family/friends support system for patients with glaucoma and their perspective on barriers to effective glaucoma management.
Six focus groups were conducted in 3 geographically and ethnically diverse areas of the United States (Los Angeles, CA; Rochester, MN; Durham, NC) that included 31 participants; 68% (21/31) were family members and friends of glaucoma patients with poor vision and 32% (10/31) were support system individuals of patients with good vision. Content analysis was used to identify important themes. Semiquantitative analysis was used to measure the frequency of each theme.
A total of 134 relevant comments were made in the 6 focus groups and 72% of relevant comments were made by individuals providing support for patients with poor vision. Family members and friends mentioned the following areas of concern regarding patients' glaucoma care: patient education (19.4%), doctor-patient relationship (17.9%), their own lack of involvement in the patient's medical care (17.2%), frustration with glaucoma and with the patient (14.9%), patient dependency on caregivers (14.9%), patient frustration with the disease (10.4%), and sex differences in coping mechanisms (5.2%).
Support system individuals tend to be minimally involved in the patient's glaucoma status and care. This is especially true for support system members of patients with glaucoma who maintain good vision and those who do not have any other personal experiences with difficulties from glaucoma. Many of these family members express an interest in acquiring more education about glaucoma and becoming more involved in the patient's glaucoma care.
探讨家庭/朋友支持系统对青光眼患者的作用以及他们对有效青光眼管理障碍的看法。
在美国3个地理和种族多样化的地区（加利福尼亚州洛杉矶；明尼苏达州罗切斯特；北卡罗来纳州达勒姆）进行了6个焦点小组讨论，共有31名参与者；68%（21/31）是视力不佳的青光眼患者的家庭成员和朋友，32%（10/31）是视力良好的患者的支持系统成员。采用内容分析法确定重要主题。采用半定量分析法测量每个主题出现的频率。
6个焦点小组共提出134条相关意见，72%的相关意见由为视力不佳患者提供支持的人提出。家庭成员和朋友提到了以下与患者青光眼护理相关的关注领域：患者教育（19.4%）、医患关系（17.9%）、他们自己在患者医疗护理中的参与不足（17.2%）、对青光眼和患者的沮丧情绪（14.9%）、患者对照顾者的依赖（14.9%）、患者对疾病的沮丧情绪（10.4%）以及应对机制中的性别差异（5.2%）。
支持系统成员往往很少参与患者的青光眼状况和护理。对于视力良好的青光眼患者以及没有青光眼相关个人困难经历的患者的支持系统成员来说尤其如此。许多这些家庭成员表示有兴趣获得更多关于青光眼的教育并更多地参与患者的青光眼护理。
