PDF(Pubmed)
Abstract：
OBJECTIVE: Artificial eye users (AEUs) can experience a negative impact on psychological and emotional wellbeing, including reduced social functioning, which may be a consequence of living with one eye removed, and/or of having a prosthetic eye. This may have wider consequences for their families. We aimed to explore what it means to live with a prosthetic eye, for both AEUs and their families-and how any quality of life (QoL) issues impact on their day-to-day functioning.
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.
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.
摘要：
目标：人工眼用户（AEU）可能会对心理和情绪健康产生负面影响，包括减少的社会功能，这可能是一只眼睛移除了的结果，和/或具有假眼。这可能会给他们的家庭带来更广泛的影响。我们的目的是探索假眼的生活意味着什么，对于AEU及其家庭，以及任何生活质量（QoL）问题如何影响他们的日常功能。
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。
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。
