METHODS: A subset of AEUs and their family members taking part in a feasibility randomised controlled trial comparing hand-painted to digitally printed artificial eyes were invited for semi-structured interviews. Transcripts were analysed using reflexive thematic analysis. Qualitative results related to trial participation are covered elsewhere. Here, we focus on QoL and day-to-day functioning.
RESULTS: Twelve AEUs (eight males) and five spouses (one male) who had worn artificial eyes for 2-65 years took part, and four themes were identified. (1) Impact on day-to-day life: AEUs and their spouses have to adapt to (partial) sight loss, reduced levels of confidence, and social withdrawal. (2) Impact on psychological and emotional wellbeing: distress among AEUs and their spouses can be severe and prolonged, highlight unmet support needs. (3) Challenges with treatment experiences: AEUs experienced negative impact of fragmentation of care and long waiting times. (4) Worries about the future: AEUs mentioned fragility of remaining sight, and concerns around potential need for further treatment.
CONCLUSIONS: Patients and their family members experience negative impact of being an AEU on their everyday lives and quality of life. There is a potential role for psychosocial support services in supporting AEUs and their families even long after eye loss.
方法:邀请参加一项可行性随机对照试验的AEUs及其家庭成员进行半结构化访谈。使用反身主题分析对成绩单进行了分析。与试验参与相关的定性结果在其他地方涵盖。这里,我们专注于QoL和日常运作。
结果:12名AEU(8名男性)和5名配偶(1名男性)佩戴了2-65年的假眼,并确定了四个主题。(1)对日常生活的影响:AEU及其配偶必须适应(部分)视力丧失,信心水平降低,社会撤退。(2)对心理和情绪健康的影响:AEU及其配偶的痛苦可能是严重和长期的,强调未满足的支持需求。(3)治疗经验的挑战:AEU经历了护理分散和等待时间长的负面影响。(4)对未来的担忧:AEU提到了剩余视线的脆弱性,以及对可能需要进一步治疗的担忧。
结论:患者及其家庭成员成为AEU对其日常生活和生活质量产生负面影响。即使在失明后很久,心理社会支持服务在支持AEU及其家人方面也具有潜在作用。