Design
A qualitative study was conducted using a descriptive phenomenological approach. This approach was selected to attain a holistic meaning and in-depth description of the caregiver’s experiences of caring for preschool children with IXT. From the interview process, the research participants are allowed to move from themselves to the object, and through the process of interacting with themselves, their experiences caring for preschool children with IXT can be raised to the level of consciousness as much as possible and fully described. To ensure comprehensive reporting of this qualitative study, we adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [17].
Participants
Caregivers were selected by purposive sampling. Children with IXT were assessed by an ophthalmologist in an ophthalmology clinic of a medical center in northern Taiwan. Caregivers were included if they met the following criteria: (1) the child’s age was between 5–7 years; (2) the child had not undergone surgery for IXT, optic nerve anomaly, or retinopathy of prematurity (3) the child had a diagnosis of IXT by an ophthalmologist and had a prism diopter (PD) greater than 20 for the angle of near deviation (The previous study indicated the angle of exodeviation, PD > 20 is the indicator of surgery of children with IXT [11] (4) the caregiver showed a willingness to participate and provided informed consent, and (5) ability to communicate in Mandarin or Taiwanese. Caregivers were excluded if the child had comorbid eye diseases such as glaucoma or cataracts and in cases of self-reported mental illnesses by the caregiver. If a caregiver met the inclusion criteria, the ophthalmologist referred the caregiver to the researcher. Finally, we interviewed 15 caregivers of children with IXT, and none of them declined to participate. All the caregivers were female, 14 mothers (93.3%), and 1 grandmother (6.7%); the mean age was 35.40 years (SD = 3.83, range = 31–57); three caregivers had been diagnosed as having strabismus. Regarding the children with IXT, the mean age was 5.53 years (SD = 0.74); there were 7 males and 8 females; and the mean angle of deviation was 33.33 PD (SD = 10.47; range = 20–60). Only three children (20.0%) had normal stereoacuity and 11 (73.3%) had stereoacuity ≥ 80 arcsec on the Titmus stereotest (Table 1).
Table 1
Characteristics of study participants and their children with intermittent exotropia
Parent code | Relationship to child | Age | Educational level | Diagnosed with strabismus | Child’s age | Child’s gender | Child’s angle of deviation | Child’s stereoacuity (arcsec)* |
A | Mother | 38 | University | No | 5 | Female | 40 | Moderate |
B | Mother | 32 | Graduate institute and above | No | 6 | Female | 30 | Good |
C | Grandmother | 57 | Junior college | No | 5 | Male | 30 | Poor |
D | Mother | 31 | Senior high school | No | 6 | Male | 45 | Poor |
E | Mother | 37 | Senior high school | No | 7 | Female | 35 | Good |
F | Mother | 44 | University | No | 5 | Male | 30 | Moderate |
G | Mother | 36 | Graduate institute and above | Yes | 5 | Female | 25 | Moderate |
H | Mother | 33 | Senior high school | No | 5 | Male | 30 | Moderate |
I | Mother | 39 | Junior high school | No | 5 | Female | 20 | Poor |
J | Mother | 33 | Junior college | No | 5 | Female | 20 | Poor |
K | Mother | 37 | Junior college | Yes | 5 | Male | 25 | Good |
L | Mother | 34 | Graduate institute and above | No | 6 | Female | 30 | Moderate |
M | Mother | 38 | Senior high school | Yes | 6 | Female | 40 | Poor |
N | Mother | 35 | Junior college | No | 7 | Male | 40 | Moderate |
O | Mother | 36 | Graduate institute and above | No | 5 | Male | 60 | Moderate |
*Child’s stereoacuity (arcsec): Good: 40–60, Moderate: 80–200, Poor: > 200 |
Data Collection
Data were collected using in semi-structured, face-to-face interviews. All interviews were audio-recorded and written field notes were maintained. A researcher with experience in qualitative studies and pediatric nursing conducted all the interviews who also held a Registered Nurse (RN) designation and a PhD in Nursing following an interview guide, which was developed based on the research purpose, published papers, and the researcher’s clinical experiences (Table 2). Participants got the interview guide before the interview and were encouraged to share their personal experiences of providing care to a child with IXT. The researcher observed non-verbal expressions and listened to the content of their responses and adjusted the interview questions to facilitate the open sharing of their experiences and perspectives, this also allowed the researcher to build rapport with participants. Interviews were conducted in a quiet, private space; only the researcher and participant are in the interview room; there was no limit to the interview time; the interview ended when the participants expressed thematic saturation. Interviews lasted approximately 40–60 minutes. There are no repeat interviews carried out in this study. For general data, caregivers’ and children’s demographic details, information about children’s strabismus, and the PD angle of deviation were collected. When transcripts were completed, the researcher returned them to the participants for confirming the data. No participants provided new comments.
Table 2
1. Can you describe how did you first notice your child’s eye problem? How did you feel about it? |
2. Can you describe the diagnosis and treatment process of your child’s eye? How did you feel about it? 3. How does IXT impact your child’s daily life? How do you feel about these impacts? What do you do about them? |
4. What are your concerns with regards to your child having IXT? What do you do about them? |
5. What are the barriers or challenges you have encountered in the course of your child’s IXT care? |
Data analysis
Interviews were transcribed verbatim and analyzed immediately after the interview. Data were analyzed using the five-phase descriptive phenomenological method developed by Giorgi [18] as follows: (1) reading the text to obtain a sense of the narrative; (2) extracting the significant statements (meaning units) regarding ‘the experiences of living with a child with IXT’; (3) comprehensively examining the meaning units from a disciplinary perspective; (4) transforming meaning units into psychological language describing the phenomenon; and (5) relating specific subcategories to general themes. An example of the analytic process is illustrated in Table 3. As the study finding was completer, the reports were mailed to participants. All participants did not provide feedback on the findings.
Table 3
Examples of the data analysis process
Step 1: Reading the text to obtain a sense of the narrative Step 2: Extracting the meaning units Step 3: These meaning units were examined to gain a sense of and comprehensively | Step 4: Meaning units were transformed into psychological language | Step 5: Specific subcategories were related to general themes |
Meaning unit | Psychological language | Subcategories | Theme |
Children nowadays are truly straight-talkers in terms of appearance, and sometimes they are actually mean. I worry that she may feel that she is different from her classmates. ...Moreover, she is introverted; so------I hope that her interpersonal relationships will not be affected due to her appearance. (J) | Worries classmates may have negative behavior or attitudes toward her child due to the child’s appearance. | 5 − 3 Interpersonal tension | 5. Worries |
The most obvious condition is that when I look at him, one of his eyes deviates. His pupil goes to the other side, which makes you feel weird. Why doesn’t he look at me when I am talking to him? I hope that other people may not think that he is rude. (C) | Worries that others may think their child is rude. | 5 − 3 Interpersonal tension |
First, I worry about the success rate of the surgery. In other words, will he become completely normal after surgical adjustment? Will he become 100% normal? If the surgery fails, how will his eyes be? Will his visual acuity become worse than before? Will his IXT become more severe? Moreover, there is also anesthesia risk, and general anesthesia may also pose a risk. Isn’t it that some patients may not wake up from anesthesia? (F) | Worries about the success rate of the surgery Worries about surgery outcomes Worries about the risk of pediatric anesthesia | 5 − 4 Surgical risks |
I told the teacher before my child went to kindergarten because I didn’t want to see her suffering from the second injury of ridicule. I told the teacher, ‘She has an illness that affects her eyes, I hope that you will not be surprised if other classmates feel frightened.’ ----- (J) | Explains the condition of the child’s IXT to the teacher before the child begins school. | 6 − 2 Taking the initiative | 6. Rising to challenges |
Rigor
Rigor was ensured by closely adhering to the qualitative research principles outlined by Lincoln and Guba [19] throughout the study. All researchers maintained an open and objective approach before data collection. One researcher supervised the collection and review of all interview data, thereby enhancing data credibility. Subsequently, two other authors analyzed the data, listening to each interview at least twice, transcribing verbatim, and reviewing written field notes twice to ensure data credibility. The authors convened periodically to discuss and enrich their perspectives on meaning units and themes based on the data. Data collection, discussion, and analysis continued until no new meaning units emerged. Formal audit trails of the research history were established to guarantee data dependability and conformability.
Ethical considerations
The study protocol and the informed consent form were reviewed and approved by the Institutional Review Board (IRB number 103-6575C) of the medical center before data collection, to ensure adherence to rules regarding the participants’ rights and interests. All procedures in this study met the tenets of the Declaration of Helsinki. The researcher explained the study’s purpose and the interview procedure to each participant. If a caregiver and their child met the inclusion criteria and agreed to participate, the caregiver provided written informed consent before beginning the interview. Moreover, all participants received assurance of anonymity and confidentiality and were informed that they were free to withdraw from the study at any time.
Findings
The study revealed that primary caregivers’ experience of caring for a child with IXT is a process of “energy conversion” as a vortex. Energy conversion refers to caregivers convert energy in different caring stage to help their children and themselves face adversity and get through this journey. When the primary caregiver becomes aware of the changes caused by IXT, they seek answers and confront the problems in multiple ways. The decision to treat and the distress for the child can make their emotions struggle, moreover, the disease impact of child’s emotional well-being and can cause the caregiver’s worries and fatigue; but in the end, the primary caregiver accumulates energy to rise to the challenges for the sake of the child. (Fig. 1). Six themes are identified: “Awareness of differences,” “Seeking answers,” “Struggle with their own feelings,” “Focus on the impact of child’s emotional well-being,” “Worries,” and “Rising to challenges”. See Table 4 for the results of the analysis.
Table 4
theme | subcategories | Description |
1. Awareness of differences | 1–1 Changes in appearance 1–2 Physical symptoms | 1–1 Perceive changes in the child’s appearance due to slanted eyes and asymmetrical eyes 1–2 Perceive changes in the child’s physical symptoms, such as headache, photophobia, blurred vision, and diplopia |
1–3 Unusual behavior | 1–3 Perceive changes in the child’s daily behavior, such as inattention, falling up and down stairs, and dazing |
2. Seeking answers | 2 − 1 Internet searches | 2 − 1 Enhance understanding of the disease and its treatment through social media and search engines |
2–2 Ask friends and relatives | 2–2 Learn from the experience and advice of friends and relatives |
2–3 Professional advice | 2–3 Seek advice from multiple medical professionals |
3. Struggle with their own feelings | 3 − 1 Guilt | 3 − 1 Self-reflection and feeling sorry for the child because of the child’s illness |
3 − 2 Uncertainty | 3 − 2 Unable to understand and imagine the world as the child sees it |
3–3 Hesitation | 3–3 Unable to choose treatment because of differences in professional opinions |
4. Focus on the impact of child’s emotional well-being | 4 − 1 Misunderstanding | 4 − 1 The child is not understood by others due to the illness and thus develops psychological distress |
4 − 2 Negative labeling | 4 − 2 The child is stigmatized due to the condition and is bullied or treated unfairly |
4 − 3 Low self-esteem | 4 − 3 Observe that the child does not like themselves |
5. Worries | 5 − 1 Life hazards | 5 − 1 Worry that strabismus will put the child’s life at risk |
5 − 2 Visual deterioration | 5 − 2 Worry that the child’s vision will continue to deteriorate and thus have lifelong effects |
5 − 3 Interpersonal tension | 5 − 3 Worry that the disease will affect the child’s interactions with peers, teachers, and others |
5 − 4 Surgical risks | 5 − 4 Worry about the success of surgery, the risk of anesthesia, and tracheal intubation |
6. Rising to challenges | 6 − 1 Close observation | 6 − 1 Observe and remind the child of the condition of his or her eyes at all times |
6 − 2 Take the initiative | 6 − 2 Explain the child’s illness directly to avoid questions or embarrassment |
6 − 3 Take precautions | 6 − 3 Assist the child in developing adjustment strategies to minimize possible harm |
6 − 4 Adjust the mindset | 6 − 4 Changing mindset to accept the fact that the child has the disease |
6 − 5 Active treatment | 6 − 5 Cooperate fully with doctors for treatment |
6–6 Set goals | 6–6 Set illness management goals as a direction to work toward |
Awareness of differences
At the beginning of the disease, as young children cannot fully express their experiences, primary caregivers often discover through their repeated observations that the child has some physical symptoms, unusual behavior, and changes in appearance, among which changes in appearance are often the first to be noticed.
“When she was about two years old, I suddenly noticed that one of her eyes was out of focus when she was looking at me. That is to say, one eye was looking at me, and the other was not looking at me but in the side.” (B02)
Physiological discomfort, such as photophobia, blurred vision, and diplopia, can also alert primary caregivers. Seeing overlapped images is a common symptom in some children.
“My son says that he sees overlapped images – similar to astigmatism with two images. He says that he sees overlapped images of people.” (F54)
Photophobia is another related manifestation that can be observed by family members in retrospect.
“Grandma took him outside on the motorcycle, in the sun, and found that when he took off his helmet and looked up, he would squint one eye. One eye would squint, which is similar to photophobia.” (K5)
For one of the participants, when the child started kindergarten, teachers would inform the primary caregiver that the child was dazed or inattentive in class and that some children with poor stereoacuity may have difficulty fetching objects accurately or fall when going up and down the stairs, which affects daily life activities.
“Ever since my son started kindergarten last year, his teacher would write in his communication book about his frequent dazed look in class or during meals. Then we also discovered this when watching TV at home – I feel it’s difficult for him to understand things. He could not focus on things to accurately experience them.” (C55)
Thus, overlapped images, single-eye squinting, and inattention are all observable differences in children with IXT, which often come first to caregivers’ awareness.
Seeking answers
Most primary caregivers cannot determine the exact condition when they notice an abnormality in their child. Some primary caregivers, because they have/had strabismus or have been told by doctors that premature births may lead to ocular sequelae, can sense these abnormalities more astutely. Nonetheless, primary caregivers usually do everything they can to find possible causes and treatments through various channels, with Internet searches being the first method that most primary caregivers adopt.
“Nowadays, a lot of information can actually be found on the Internet, so I’m more aware of the causes and treatments now, and I’m not as ignorant as I used to be (laughs~~!).” (M220)
Asking friends and relatives is also a common strategy used by primary caregivers when investigating the causes of the condition.
“I’d like to know the cause of this disease. Some people say that it may be a genetic disease. I asked many people whether it was caused by a fall. However, the answers to my questions were uncertain and unclear. No one was sure about the cause.” (F14)
A mother mentioned that she mistakenly presumed that her child’s frequent falls were caused by obesity and sought medical attention only after several home remedies failed to improve the condition.
“I thought she was too fat, so her center of gravity was unstable, and therefore she fell often. After once she fell and broke her hand, I took her to the rehabilitation department. The doctor told me my child often stepped off the balance bar and single log. I also asked her to learn inline skating to train her sense of balance. Afterward, the rehabilitation doctor suggested that it might have something to do with the eyes, so we went to the ophthalmologist.” (J227)
After getting a preliminary understanding of the child’s condition, primary caregivers begin to seek professional advice. However, because children are too young to express their own feelings and experiences, and because the symptoms are not necessarily directly related to ophthalmology, caregivers often go through different healthcare professionals, such as ophthalmology, rehabilitation, and psychiatry, before being diagnosed with IXT.
Struggle with their own feelings
After the initial diagnosis, primary caregivers struggle with their own feelings. They often have negative feelings of self-blame, and guilt, challenged by decisions in their child’s treatment. The guilt comes from the belief of passing on abnormalities to the child or not taking good care of the child.
“My own thoughts are that I feel sorry for him! How could I not have given good birth to him? Or take care of him well! Because of that ...... I hope it will not affect his life, so it would be best not to operate as much as possible.” (F103)
Since the child is unable to describe symptoms fully, due to their age, they relied on family caregivers to recognize symptoms through their own observation of the child. Primary caregivers are often unsure if the child is describing and perceiving the world in the same way as them. Further, they also feel uncertain about how the symptoms of strabismus will affect the child.
“She mentioned that there was a huge piece of paper where 4 wheels were running on roads. She felt that it was miraculous. Because the world that she saw was different from ours. She saw a flat world. Moreover, she was afraid of walking on flat ground, because it looked rugged and sharp to her. We had to hold her hand to walk across it. I wondered if the world in her eyes differed from ours. I could not understand what she saw.” (J395)
The most challenges the caregiver face in seeking and accessing care and continuity of care is the different treatment suggestion of IXT. Some doctors take a more conservative approach and recommend observation until elementary school, and some suggest that immediate surgery is required, while others give equivocal answers, leaving the primary caregiver hesitant about the best treatment options.
“After the doctor’s assessment, there was no real definite answer, only that surgery can be performed or not and that I can wait and see. Such vague responses make me feel that I spend so much time and money here, but I can’t get a definite answer, ... It’s too ambiguous and I feel overwhelmed.” (N132)
Thus, primary caregivers struggle with feelings of guilt, uncertainty, hesitation, and indecision.
Focus on the impact of the child’s emotional well-being
Primary caregivers become aware of the potential impact of strabismus on their child’s emotional well-being, including misunderstanding, negative labeling, and low self-esteem, which can have a profound impact on the child’s feelings of belonging and feeling accepted by their peers.
The child must wear glasses for correction or eye patches for treatment because of concurrent amblyopia or astigmatism, which can lead to comments from others and thus hurt the child’s feelings.
“The guest in a breakfast store saw her and directly called her, ‘Little Cyclops!’ She rejected wearing an eye patch for a while. She said, ‘It’s ugly. People will laugh at me!” (I46)
Some children, because of the symptoms of strabismus or inability to focus, are dazed, inattentive, or unable to look directly at others when speaking. Thus, they are considered by teachers to be slow learners or impolite and are even treated unfairly.
“He is listening to the teacher, but his eyes are slanted outward! The teacher will think that OO is not listening to him/her seriously or ask him whether he is listening to him/her or not. ...... The teacher will misunderstand him, misinterpret him, and frustrate him. (D159)
Some children may begin to dislike themselves because of the sarcastic remarks or because they notice that they look different from others due to their slanted eyes, or as they are wearing glasses or eye patches.
“She is always bothered by her eyes being slanted....... In fact, she is concerned with her reputation and cares a lot about her appearance, so you can see that all the princesses she draws are long hair, all of them! (Tone becomes graver for emphasis). She cares so much about her appearance that she has to dress beautifully for class every day........ Sometimes she tells me, ‘Mommy! I don’t like myself!’ When I ask, ‘Why?’ She says, ‘If I don’t have surgery, my eyes won’t be able to look like normal people’s!” (J164)
Children also often feel ugly because of the appearance of their eyes.
“She used to say to me, ‘Mom, I feel ugly!’ I said, ‘Why? You’re cute!’ She said, ‘Because my eyes are weird, and I wear glasses.” (M37)
Caregivers believe that misunderstanding, negative labeling, and low self-esteem have caused changes in children’s body image of themselves.
Worries
After noticing the physical, psychological, social, and daily impact of IXT on the child, primary caregivers were mostly mothers who begin to have worries about their child’s physical and emotional safety, and the child’s future and wanted their child to attain their full potential. The potential dangers of living with strabismus, for instance, visual deterioration, interpersonal tension, and surgical risks are concerned by caregivers. These worries may cause the primary caregiver fatigue which is both physical and emotional impacting their quality of life.
Strabismus can be comorbid diplopia, poor stereoacuity, amblyopia, myopia, photophobia, and astigmatism. These visual discrepancies can affect the child’s movement accuracy and speed and even endanger their daily activities, leaving primary caregivers worried and scared.
“We are afraid of her walking up and down the stairs, especially when she goes down the stairs, she often steps on the air; ........ we avoid her going down the stairs. Earlier, she had gone down three steps (of the stairs) and broke her bones.” (J330)
The comorbidity of strabismus, diplopia, poor stereoacuity, amblyopia, myopia, photophobia, and astigmatism can cause the primary caregiver to worry that the child’s eyes will continue to deteriorate and thus have a lifelong impact.
“I worry that his strabismus could affect future visual acuity because we are both myopic. I am afraid that if he doesn’t immediately receive treatment, he may suffer from severe myopia in the future, which may affect his whole life.” (C277)
Misunderstandings, unkind words, and unfair treatment from others can also make primary caregivers worry about their stressful interpersonal situation.
“I am worried that it will affect her self-esteem and lead to possible low self-esteem in the future. It’s very important because once deviated, it’s hard to get back, and it will affect her ability to get along with others, so I’m more worried about this.” (L601)
Moreover, the success of the surgery and the risks of anesthesia and tracheal intubation are worrisome to primary caregivers as the child is still young.
“First, I worry about the success rate of surgery. In other words, will he become completely normal after surgical adjustment? Will he become 100% normal? If the surgery fails, how will his eyes be? Will his visual acuity become worse than before? Will his IXT become more severe? Moreover, there is also the risk of anesthesia, and general anesthesia may also pose a risk. Isn’t it that some patients may not wake up from anesthesia?” (F81)
Thus, in addition to the responsibility of taking care of the child, the child’s every move and related decisions also affect the primary caregiver and cause them to experience further worries.
Rising to Challenges
Amid intricate experiences and feelings, primary caregivers understand that they must be strong to help the child, and therefore, they begin to transform themselves by observing closely, taking initiative, taking precautions, adjusting their mindset, adopting active treatment, and setting goals, to help themselves and their children adjust to the stress and overcome difficulties, leading their children to overcome challenges and learning to live with the disease. Some of them are successful in helping their children. For instance, some primary caregivers observed the child’s squint more frequently and helped the child maintain eye position through constant reminders.
“She now knows she has a squint because I keep telling her and reminding her to practice pulling her squinted eye back.” (L52)
Some primary caregivers take a proactive approach by directly explaining their child’s strabismus and treatment status to kindergarten teachers and relatives to avoid unnecessary follow-up questions or ridicule. Some parents got the successful in helping their children.
“I told the teacher before my child went to kindergarten, because I didn’t want to see her suffering from a second injury of ridicule. I told the teacher, ‘She has an illness that affects her eyes, I hope that you will not be surprised if other classmates feel frightened.’ Her teacher informed classmates of her situation ‘in advance.’ Therefore, she gets along with classmates very well at school.” (J140)
Primary caregivers also employ strategies such as teaching the child interpersonal skills, reducing the child’s rejection of therapy, and preventing harm from others before it occurs.
“She refuses to wear an eye patch; so, I told her, ‘You are great. You can use one eye only.’ I let her paint a sign on the eye patch every day. Afterwards, I told her, ‘You can tell your classmates that your mother signed the eye patch for you.’” (G96)
To prevent the child from being hurt by misunderstandings, some primary caregivers explain or guide the child in words and methods that the child understands.
“We adults have to think of different ways and say things to guide her. I don’t like to lie to children, but some things can’t be said frankly, or very clearly, because she may not be able to understand them at her age and she still thinks more graphically, … Then we have to think about a lot, like the way the eyes get back to the right, or after the doctor explains certain things, we have to explain to her again, … Sometimes we even have to talk to her beforehand about what the doctor might actually mean, so that she doesn’t misunderstand.” (L499)
The primary caregivers must also balance their emotions in the face of the child’s illness and change their beliefs through comparison. Accepting the fact that the child has an illness is one of the ways they adjust their mindset.
“I personally feel that he is as normal as other kids. The only issue is the asymmetrical eyes.” (H60)
Some primary caregivers fully cooperate with doctors to minimize the effects of strabismus.
“I think it’s important to operate as soon as possible, so I asked the doctor to schedule a surgery as soon as possible, if necessary…because when the child is at the preschool stage there is no homework pressure … He can heal his eyes quickly when he doesn’t understand, then he won’t be affected afterward!” (C134)
Most primary caregivers set goals for the direction of their efforts to maintain their child’s eyes in the best condition possible and to reduce the differences from average children caused by strabismus.
“The goal is to keep the eyes from moving upward, or to keep the distance of upward movement less pronounced and closer to the average child… Regarding the stereoacuity, I don’t know how much can be recovered, but I’m trying to get her to stop here, so that she can keep it and it won’t continue to get worse.” (J357)
In summary, primary caregivers, even if physically and mentally exhausted, take action to solve problems and help and protect the child, in addition to adjusting their own emotions.