Table 3.

Themes and Sub-Themes, Definition, and Supportive Quotes for the Problems faced by Retinoblastoma Survivors

S. No.	Themes and Sub-Themes	Definition of Theme/Sub-Theme (n)*	Supporting Quotes
Physical Problems (N = 205, 50.7%)
1.	Vision-related	Problems specific to sight as noted below (103)
1a.	Sight difficulties	General difficulties with vision (77)	“I also have difficulty seeing.” (ID #50001620) “I don’t have vision in both eyes” (ID #50003700)
1b.	Lack of depth perception	Lack of visual ability to perceive the world in three dimensions and the distance of an object (22)	“No depth perception…” (ID #50003160) “Don’t have depth perception.” (ID #50003420)
1c.	Limited peripheral vision	Limited ability for side vision, that occurs outside the very center of gaze (13)	“…peripheral vision is limited” (ID #50000360) “…loss of peripheral vision on right side of head” (ID #5002290)
2.	Limited options	Limited options in various areas as noted below (78)
2a.	Driving/transportation	Driving limitations, mobility issues, and reliance on others for transportation (32)	“Transportation is always an issue.” (ID #50002600) “Cannot drive so immobility and needing other to get me places is always a draw back.” (ID #50003380)
2b.	Sports	Limited opportunities to play sports (28)	“Limited in playing certain sports…” (ID (#50002720) “I can’t play certain sports” (ID #50002890)
2c.	Career	Limited career opportunities (28)	“Limited jobs: military, law enforcement…” (ID #50002720) “I couldn’t be a pilot/an astronaut…” (ID #50007430)
2d.	Activities	Limited options to participate in activities such as reading, water skiing, going out, shopping, etc (23)	“Avoided certain activities for safety reasons…” (ID #50000660) “I can’t go out at night without help from other people.” (ID #50003580)
3.	Prosthetics-related	Struggles related to having prosthetics in various areas noted below (33)
3a.	Daily care and maintenance	Daily care and regular maintenance of prosthesis (20)	“But with the prosthesis, it took me a long time to be able to pull it out and clean it by myself…” (ID #50006720)
3b.	Lack of movement	Lack of movement in prosthetic eye (8)	“…limited movement with prosthesis…” (ID #50006210)
3c.	Discharge	Tears or discharge from the prosthetic eye (8)	“…also the discharge is bothersome” (ID #50002700) “My eyes are teary and that bothers me.” (ID #50003610)
3d.	Dryness	Dryness in the eye (3)	“Sometimes, the eye is dry and blinking is difficult…” (ID #50002150)
4.	Appearance	Struggles with appearance – difficulty putting make-up, altered appearance, etc. [Note: patient did not mention self-consciousness or confidence issues…just noted appearance to be an issue] (25)	“…trying to put makeup on was difficult…” (ID #50000020) “…changed the appearance of face…” (ID #50006560)
5.	General struggles (no specific description	General struggles with one eye/no eye, but no specific struggles identified (20)	“It has affected every aspect of my life.” (ID #50000020) “Effects, has effected, and continues to effect my life in almost every aspect.” (ID #50003760)
6.	Pain and irritation	Pain in the eye/eye socket (11)	“…severe amounts of pain.” (ID #50001110) “…socket pain…” (ID #50003160)
7.	Clumsiness	Bumping into things or people; general clumsiness (7)	“I run into doorways fairly often” (ID #50003750) “…clumsy, bumping into things” (ID #50009140)
Intrapersonal Problems (N = 77, 19.1%)
1.	Increased insecurities	Struggles related to increased consciousness, loss of self-esteem, and increased self-doubt (64)
1a.	Self-conscious of appearance	Uncomfortable, embarrassed, or awkward with oneself (51)	“Very self-conscious of appearance” (ID #50000200) “Self-conscious as a young adult and child” (ID #50000360)
1b.	Loss of self-esteem/self-confidence	Lack of confidence in one’s abilities or one’s worth (15)	“Loss of self-confidence, both as a child and as an adult” (ID #50000260) “Shaken self-confidence sometimes” (ID #50001620)
1c.	Changed personality	Shy or introverted personality because of the loss of eye (6)	“Made me reserved…” (ID #50006010) “Shy and introvert” (ID #50006720)
2.	Regular/reoccurring thought processes	Struggles related to regular and reoccurring thoughts about general uncertainties in life, unable to imagine life with one or both eyes, and increased awareness of a loss (19)
2a.	Increased awareness of loss	Heightened awareness of a loss, which may/may not compound with extra caution in daily life (8)	“…awareness of concept of illness/loss at an early age” (ID #50007470) “Constantly needing to remind oneself about the difference in 2 eyes” (ID #50007810)
2b.	Inability to imagine a different life	Inability to imagine a life where one or both eyes were functioning properly (7)	“Not knowing life with 2 eyes” (ID #50004160) “Can't tell you what it is like to have two seeing eye” (ID #50004840)
2c.	General effects	General effects on daily thought processes (4)	“…mentally” (ID #50001920) “Affected daily thought process” (ID #50004470)
Social and Relational Problems (N = 98, 24.3%)
1.	Negative impact	Limited or negative impact on social interactions/relationships (42)
1a.	General social interactions	Eye problems have negatively impacted patient’s interactions and communication with others (21)	“affects daily interaction with others, always have to think about which side of people to sit on at a table/meal/meeting…” (ID #50003750)
1b.	Uncomfortable when talking to others	Eye problems made patient self-conscious and uncomfortable in social settings (13)	“because you can't focus, you try to look at people but you think they’re looking at your eyes…” (ID #50005990) “people don't think that I'm looking at them when I really am” (ID #50000880)
1c.	Limited opportunities with dating/finding a partner/maintaining romantic relationships	Impacted opportunities with dating, finding a partner, or maintaining romantic relationships (12)	“impacted opportunities with dating” (ID #50000700) “my inability to find a life partner (a wife)” (ID #50003760)
1d.	Increased parental protectiveness	Parents became over-protective (3)	“my parents' protectiveness of me…” (ID #50004510) “it affected the way I was raised (over protected)” (ID #50007750)
1e.	Limited parenting opportunities	Impacted one’s ability to care for their children/other children in the family (3)	“Family- limited the amount of children due to Retinoblastoma possibilities” (ID #50003380)
2.	Negative reactions from people	Getting negative response during interactions with people (37)
2a.	People stare	Getting stared at by people (17)	“People have always stared at me, especially children.” (ID #50004010) “As an adolescent I recall often being stared at.” (ID #50001630)
2b.	People form negative judgment about the patient	People form negative opinion about the patient, and get annoyed or scared (11)	“People are prejudiced towards me at some times.” (ID #50001970) “People get afraid when a person with one eye sees them differently” (ID #50000110)
2c.	Differential treatment by people	People treat patient differently (in both good and bad ways) because of eye problems (8)	“A person is judged by their symmetry/appearance. This affects how I am treated by others.” (ID #50001620) “Has also affected how people treat me in both good and bad ways.” (ID #50004470)
2d.	Too much questioning from people	Constant questioning from people about patient’s eyes (5)	“People (esp. children) expect and explanation for why my eyes are different…” (ID #50009970) “As an adult, some adults are rude and ask if you are looking at them or ask what is wrong with your eye? Insensitive” (ID #50001920)
3.	Teased/bullied in school	Getting teased, bullied, made fun of, and called names (more as a child) (32)	“I was teased as a child at times.” (ID #50001820) “Growing up with only one eye meant a lot of teasing and name calling for other kid” (ID #50002520)
4.	Positive impact on personal relationships	Patient reported having good luck and good bonding in relationships (3)	“Other than that, I can't say that I've had any less luck in my relationships” (ID #50002600) “I have older brothers and sisters and I played a lot with them even though they were older” (ID #50002990)
Affective Description of the Problem (N = 34, 8.4%)
1.	Positive affect	Emotional state that expresses favorable feelings or experience (32)
1a.	Acceptance	Patient has come to terms with their condition (22)	“improved acceptance as an adult” (ID #50001630) “not much of an issue, it’s a way of life” (ID #50000640)
1b.	Grateful	Patient is thankful for life and in some instances, vision (10)	“I'm fortunate and have had a great life” (ID #50002600) “I feel "lucky" to have a normal life and vision.” (50001750)
1c.	Empathy	Made patient more empathic (3)	“Increased sensitivity to others-especially people diagnosed with cancer” (ID #50004160) “I became an empathetic person” (ID #50006360)
2.	Negative affect	Emotional state that expresses unfavorable feelings or experience (25)
2a.	Worry	Feelings of anxiety or uneasiness regarding appearance, acceptance, losing friends, etc. (8)	“I'm always worried how my prosthesis will look in photos” (ID #50002660) “worry a lot more about things, worry about being accepted by people.” (ID #50006690)
2b.	Sadness	Feelings of sadness, grief, depression (5)	“periods of depression” (ID #50004670) “…upset feelings about this has been at least part of the cause of my depression” (ID #50006630)
2c.	Fear	Distress due to feelings of getting good eye injured, losing eyesight completely, or cancer reoccurring (4)	“…fears associated with receiving an injury to my good eye or losing my eye sight” (ID #50002720) “worry about losing other eye” (ID #50003750)
2d.	Annoyance/frustration	Irritation with the condition of the eye and problems associated with it (4)	“it's annoying and frustrating…” (ID #50005060) “minor annoyance with prosthetics and care” (ID #50003890)
2e.	Disgruntled	Being bothered and dissatisfied, usually, pertaining to appearance issues (4)	“Radiation stunted growth of nose so that does bother me” (ID #50004140)
3.	General affect	General effect on patient’s life (without specifying a negative or positive affect) (4)	“it’s affected how she has had to choose how to plan her life” (ID #50009490) “everyday life is affected by what you see” (ID #50006320)

^*(n) is for the number of participants whose response fit the theme/sub-theme.

NOTE: Themes and sub-themes are not mutually exclusive.