Time Heals: An Investigation into How Anophthalmic Patients Feel about Eye Loss and Wearing a Prosthetic Eye

    

    

    Figure 1: Participants’ average ratings of the intensity of initial negative
feelings and the age they received their first prosthetic eye. Age groups are
referenced from Erikson’s (1963) [19] developmental stages.
    
    

Gender: There were no significant differences in the intensity of feelings according to gender (p>0.05).

Discussion

The finding that during the first three months of receiving their first prosthesis, participants experienced moderate to strong negative feelings (Table 1) is similar to Goiato et al.’s (2013) results [5]. These negative feelings occurred when anophthalmic patients were still processing the event, going through the early stages of grief [8], and coming to terms with their changed appearance and the functional impacts of eye loss. It isa very difficult and confusing time for patients and reassurance and good advice is critical at this time. In contrast to negative feelings, some participants reported moderate to strong feelings of happiness, relief and acceptance, which was probably a positive response to the fitting of their prosthetic eye and a return to some sense of normality in their lives. Wang, Zhang, Chen, and Li’s longitudinal study in 2012 [9] found that a significant decrease occurred in anxiety and depression symptoms, appearance-related social anxiety and social avoidance following the fitting of a prosthetic eye after enucleation.

Over time, participants’ negative feelings decreased (also found by Goiato et al., [5]), while positive feelings increased. This reflected adjustment through the course of time, getting older [10], and the development of strategies to respond to others’ comments/questions, to adjust to monocular vision, and to manage mucoid discharge, all of which were difficulties that negatively impacted mood early on.

There were continuing psychological impacts on some prosthetic eye wearers after at least two years of prosthetic eye wear, even though the intensity of these impacts lessened over time. Lingering negative feelings (mainly shyness and pre-occupation with hiding the eye) may be due to poor behavior from others, which can be internalized and become a part of an individual’s self-image [11], leading to a more enduring sense of insecurity and shyness. Negative social, occupational, or recreational experiences can also create negative views of one’s self leading to negative feelings which may be made worse by unhelpful coping strategies such as avoidance, which maintains negative beliefs as disconfirming information is never gained [12]. On the other hand, this study found that feelings of happiness and acceptance significantly increased after at least two years of prosthetic eye wear, which is an encouraging result that patients who have recently lost an eye should be made aware of.

The finding that eye loss due to an accident produced greater initial negative feelings compared to eye loss from a medical event, may reflect on the circumstances surrounding these different etiologies. Eye loss or damage following an accident is likely to be more sudden and unexpected and may not be in isolation of other injuries. These may also have to be coped with along with posttraumatic stress disorder, legal, financial and social issues not usually associated with medical events. Dealing with these issues may kindle anger, which could explain why feelings of anger were maintained for victims of accidents compared to medical events, while other feelings balanced out over time.

It is understandable that participants with greater initial and current concerns about mucoid discharge, visual perception and appearance would have negative feelings associated with each concern. Pine, Sloan, Stewart, and Jacobs [13] reported that 93% of anophthalmic patients experienced watering, crusting and discharge and that their second highest concern after health of the remaining eye was mucoid discharge. Participants with discharge concerns in this study initially reported stronger feelings of insecurity, preoccupation with hiding their eye and weaker feelings of acceptance, and while the intensity of these feelings decreased over time they were still more fearful and preoccupied with hiding their disfigurement than those without discharge concerns. It is important therefore that patients follow the protocol for managing discharge described by Pine, Sloan, and Jacobs [14], as discharge from the socket likely attracts unwanted attention and interferes with the disguisability of the ocular prosthesis. The anger initially experienced by participants with concerns about visual perception was possibly due to frustration as they misjudged distance when performing everyday tasks and bumping into people and objects on their blind side.

Satisfaction with one’s prosthetic eye is greater for those who feel their prosthesis is imperceptible to others [15], and many participants with appearance concerns in this study were particularly worried about the prosthesis moving in concert with their natural eye, the prosthesis rotating in the socket, and upper eyelid ptosis-all of which are factors linked to disguisability.

Participants’ age when they first received their prosthesis impacted on the intensity of their negative feelings initially but after at least two years, these feelings had decreased and were not more or less intense than for anophthalmic patients who received their first prostheses at other ages. The lower intensity of negative feelings for children in infancy, early childhood and preschool stages (0-5 years) suggests that individuals with facial deformity from a young age have the opportunity to incorporate the irregularity into their body image, to develop effective coping strategies and to habituate to others’ responses [16]. Individuals with congenital facial disfigurement also have less adjustment and psychological problems than those with acquired facial disfigurements [17] The increase in intensity of negative feelings for school aged children (6-11 years) may be because at this developmental stage, children begin to compare themselves more to others, to define themselves by their appearance (as well as possessions and activities), and to recognize if they are different from others [18].

The developmental stage of adolescents largely focuses on identity and acceptance by peer groups [19], so it is not surprising that the strongest intensity of negative feelings were found to be during this stage. Adolescents are at a vulnerable stage where negative treatment by others (e.g., bullying, teasing) can have detrimental, long-standing impacts on their self-esteem and sense of worth [20]. Losing an eye at this age can predispose adolescents to such treatment and negatively impact on their sense of acceptance or belonging, leading to more salient negative feelings and reduced self-esteem. The heightened intensity of negative feelings for patients who lose their eye during adolescence highlights the particular importance of providing psychological support for adolescents who lose their eye. This support might include the provision of strategies to address others’ comments, how to talk about it with others, building up self-esteem in important areas and training in compensatory strategies. Such support for adolescents may also reduce the level of social difficulties found to be greater in younger anophthalmic patients.

As adolescents move on to young adulthood (19-40 years) they are faced with the developmental task of establishing intimate and loving relationships with others [19]. Losing an eye during this period generated the second highest level of intensity of negative feelings with anophthalmic patients reporting feelings of insecurity, shyness, and inferiority as they struggle to form close relationships. The next developmental stage is middle adulthood (40-65 years) when people are mainly concerned with giving to the next generation and being committed to family and community [19]. Eye loss during this period generated less intense negative feelings than during young adulthood; however, concerns about acquired monocular vision and appearance impacting on employment may be one of the reasons for the presence of negative feelings during this stage.

Moving into maturity (65+ years), the developmental focus shifts to a person’s sense of fulfillment about and satisfaction with their life [19]. Priorities shift away from cosmetic or outward appearance to physical functioning [21,22], meaning the negative feelings triggered by appearance concerns may become less salient and result in less negative emotional intensity accompanying eye loss during this period.

Conclusion

Previous psychological research has focused almost exclusively on appearance-related issues but the results of this study demonstrate that discharge and acquired monocular vision, as well as appearance issues, can negatively affect the psychological wellbeing of anophthalmic patients. This study has also found that accident victims who lose an eye have stronger initial negative feelings than those who lose an eye because of medical conditions and that there appears to be a link between the strength of initial negative feelings and the developmental stage during which eye loss occurs with adolescents being most at risk. The authors recommend that psychological intervention and support be provided in the early stages following eye loss, especially for accident victims and adolescents, and that concerns regarding appearance, mucoid discharge, and acquired monocular vision be addressed. All patients can take heart from the finding that initial strong negative feelings decrease over time while positive feelings increase.

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