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Parenting stress among caregivers of children with congenital cataracts
Parenting Stress Among Caregivers of Children With Congenital Cataracts Carolyn Drews, PhD,a,b Marianne Celano, PhD,c David A. Plager, MD,d and Scott R. Lambert, MDb Objective: To examine parenting stress among caregivers of young children with congenital cataracts and to assess whether diagnostic and/or treatment differences are associated with differences in perceived parenting stress. Methods: Parents of 41 preschool-age children with congenital cataracts (13 with bilateral cataracts [BCCs] and 28 with unilateral cataracts [UCCs], of whom 14 were aphakic and 14 were pseudophakic) completed the Parenting Stress Index (PSI) and/or a disease-specific parental stress measure, ie, the Ocular Treatment Index (OTI). Results: The 28-item OTI had excellent internal consistency (␣ ⫽ 0.94) and supported three of four a priori validity hypotheses. Parents of children with congenital cataracts reported normal parenting stress levels on the PSI. Parents of children with UCCs tended to report higher levels of stress, but not significantly so, than did parents of children with BCCs. Among parents of children with UCCs, those whose children were aphakic reported higher levels of stress on the OTI and all of the PSI subscales than did parents of pseudophakic children. These differences were statistically significant for two subscales (Adaptability [P ⫽ .03] and Mood [P ⫽ .01]). Conclusions: Although parents of children with congenital cataracts generally did not report increased parenting stress levels, clinicians should be aware that parenting stress can adversely impact patients’ families. We did observe higher stress levels in parents with children who had UCCs and did not receive an intraocular lens—particularly stress related to their child’s reaction to sensory stimulation and mood— compared with parents of pseudophakic children. Thus, clinicians may want to consider parenting stress levels when choosing a treatment for children with UCCs, especially because such stress has been associated with poor treatment compliance for children with other chronic conditions. (J AAPOS 2003;7:244 –250) or many years, parenting stress, defined as stress associated with the parenting role, has been recognized as an important construct in the fields of pediatrics, pediatric psychology, and child development.1,2 Low levels of parenting stress during the first 3 years of a child’s life are critical to the child’s emotional and behavioral development and to the developing parent– child relationship.3 Excessive parenting stress can lead to dysfunctional parenting, which in turn can lead to behavioral and emotional problems in children. High self-reported levels of parenting stress have been empirically linked with infants’ and toddlers’ insecure attachment to the mother,4,5 maternal depression,6 and parent-reported behavioral problems.7 Furthermore, among parents of children with chronic conditions, higher-than-average levels of pa-
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From the Department of Epidemiology,a Rollins School of Public Health, Emory University School of Public Health and the Departments of Ophthalmologyb and Psychiatry and Behavioral Sciences,c Emory University School of Medicine, Atlanta, Georgia; and Indiana University School of Medicine,d Indianapolis, Indiana. Submitted May 20, 2002. Revisions accepted April 18, 2003. Reprint requests: Carolyn Drews, PhD, Department of Epidemiology, Rollins School of Public Health, Emory University, 1518 Clifton Rd, NE, Atlanta, GA 30322. Copyright © 2003 by the American Association for Pediatric Ophthalmology and Strabismus. 1091-8531/2003/$35.00 ⫹ 0 doi:10.1016/S1091-8531(03)00118-6
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rental stress have been associated with poor treatment compliance.8-12 Parents of infants with congenital conditions, chronic illnesses, and disabilities report higher levels of parenting stress on the Parenting Stress Index (PSI)—mainly on the domain assessing perceptions of the child’s behavior (Child Domain)—than do parents in control groups.7,13,14 Longitudinal studies of parenting stress indicate that stress levels remain high for parents of children with disabilities or chronic illness.14,15 However, only one study included children with visual impairments. In this study, compared with the PSI normative sample, mothers of 725 young children with disabilities (38 with visual impairments) reported significantly greater stress on the Child Domain but not on the Parent Domain.16 Congenital cataract is a relatively rare condition, with a prevalence of approximately 2.5/10,000 live births.17-19 Approximately 40% of all congenital cataracts are unilateral.17,19 Adherence to the treatment regimen of patching and visual correction with contact lenses or spectacles is believed to be critical to the visual outcome of children with congenital cataracts.20 Yet, the treatment regimens involving the care and expense of contact lenses and extensive patching can be onerous for caregivers. As infants develop, treatment can become more stressful as the child becomes more adept at resisting patching and contact lens insertion. Contact lenses are costly and easily lost or misJournal of AAPOS
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placed, thus adding financial burden to many families. Thus, parents of infants with congenital cataracts, particularly those with UCCs, may be at increased risk for parenting stress.21 Furthermore, high levels of parenting stress in this population may have negative implications for treatment because stressed parents may “give up” on patching, contact lens wear, or both and settle for suboptimal vision in their child’s aphakic eye. Thus, there is a need for information about parental stress in caregivers of children with congenital cataracts. The purpose of the present study was to examine parenting stress among caregivers of young children with congenital cataracts. The current study examines two specific questions: (1) What levels of parenting stress are reported by caregivers of young children with congenital cataracts? (2) Do the levels of parenting stress differ by type of cataract and/or by treatment regimen?
SUBJECTS AND METHODS Subjects Data for this study come from the parents of 41 children younger than 5 years who have congenital cataracts. Thirteen of the children had BCCs and twenty-eight had UCCs. Half of the children with UCCs had an intraocular lens (IOL) placed at the time of cataract surgery; the remaining 14 remained aphakic. One of the aphakic children subsequently had an IOL implanted and was retained in the aphakic group. The treating pediatric ophthalmologist made all decisions regarding treatment. Patients with UCCs were recruited from four hospitals (ie, Emory and Indiana Universities, the Medical University of South Carolina, and the Manhattan Eye and Ear Institute) as part of a multisite pilot study comparing IOL with contact lens (CL) correction in infants with a UCC removed between the ages of 1 to 6 months. Parents of children with BCCs were recruited from two sites (ie, Emory and Indiana Universities) specifically for this project. The study methods were similar for all groups of parents. The Institutional Review Boards of all participating institutions approved the protocol. Participants were told about the parenting stress study during a regular clinic appointment or during a visit scheduled in a pilot study comparing visual outcomes of aphakic and pseudophakic children with UCC. After they provided informed consent, parents completed a series of self-report questionnaires during the clinic visit; unfinished questionnaires were taken home and returned to the investigators by mail. Measures Parenting stress was assessed using two measures: the PSI3 and the Ocular Treatment Index (OTI). The PSI is a well-researched, standardized, self-report measure of parenting stressors consistently related to dysfunctional parenting. The 120-item scale yields a total stress score and
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two factor-based scores: a Child Domain score and a Parent Domain score. The Child Domain includes 6 subscales (Distractibility/Hyperactivity, Adaptability, Reinforces Parent, Demandingness, Mood, and Acceptability), and the Parent Domain includes 7 subscales (Competence, Isolation, Attachment, Health, Role Restriction, Depression, and Spouse). The PSI also includes a separate scale, Life Stress, which assesses situational stress (eg, death of a relative, loss of a job) outside the parent– child relationship that might affect parenting stress. The five response choices for most items on the PSI range from “strongly agree” to “strongly disagree.” Higher scores indicate greater stress. Disease-specific measures of psychological variables are often preferred to general measures because they focus on domains most relevant to the target disease.22,23 At the time of this study, there were no published reports of disease-specific measures of parenting stress or quality of life for parents of children with congenital cataract or other ophthalmic conditions. Because the PSI does not measure parenting stressors specific to the care of a child with visual impairments or ocular anomalies, we developed the OTI, an illness-specific parenting stress measure. The original OTI consisted of 37 Likert-type items with five response choices ranging from “strongly agree” to “strongly disagree.” All items were written by an interdisciplinary research team (pediatric ophthalmologist, epidemiologist, clinical child psychologist, and orthoptist) based on clinical experience with cataract patients, a focus group with parents of children with UCCs, and familiarity with the bodies of child development and pediatric psychology literature. A few items were added after review of the proposed scaled by the Infant Aphakia Treatment Study (IATS) Advisory Committee and the parents of two young children with BCCs. Statistical Analyses Statistical analyses were conducted using SPSS for windows (SPSS, Chicago, IL) and SAS 8.0 for windows (SAS, Cary, NC). For hypotheses related to differences in the amount of stress reported by parents of children with different types of cataract, analysis of variance (ANOVA) and Student’s t test were used to assess group and UCC– BCC differences in reported stress levels. The results were confirmed using nonparametric tests (ie, nonparametric ANOVAs and Wilcoxon rank sum statistics). Scaling procedures, correlation coefficients, and reliability analyses were conducted to estimate the quality of the OTI. Student’s t test and Wilcoxon rank sum test were also used to assess the criterion validity of the OTI.
RESULTS Participants A total of 41 subjects (14 parents of aphakic children with UCCs, 14 parents of pseudophakic children with UCCs,
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TABLE 1. Characteristics of respondents Unilateral congenital cataract Variable No. (#)/% Male White Child’s health not excellent Respondent is child’s mother Respondent’s health not excellent Mother is employed Child in daycare Mean ⫾ SD (IQR) Age at interview (wk) Age at surgery (wk) Weeks since surgery No. preschool children at home No. older children at home
Aphakic (n ⴝ 14)
Pseudophakic (n ⴝ 14)*
Bilateral congenital cataract (n ⴝ 13)
3 (12)/25.0 10 (10)/100.0 1 (13)/7.7 11 (14)/78.6 5 (13)/38.5 9 (14)/32.1 6 (14)/42.9
7 (14)/50.0 11 (13)/84.6 0 (14)/0.0 12 (14)/85.7 4 (14)/28.6 11 (14)/39.3 8 (13)/61.5
4 (8)/50.0 4 (4)/100.0 4 (12)/33.3 10 (12)/83.3 5 (12)/41.6 4 (12)/33.3 2 (10)/20
92.6 ⫾ 54.0 (61.6, 111.0) 8.5 ⫾ 7.9 (3.3, 10.3) 84.1 ⫾ 53.4 (37.3, 102.3) 1.6 ⫾ 0.8 (1, 2) 0.3 ⫾ 0.6 (0, 0)
59.4 ⫾ 37.4 (25.9, 98.0) 7.6 ⫾ 5.9 (3.1, 10.6) 52.4 ⫾ 37.2 (16.1, 87.5) 1.4 ⫾ 0.7 (1, 2) 0.8 ⫾ 0.8 (0, 1)
162.0 ⫾ 39.6 (129.8, 192.2) 39.2 ⫾ 59.8 (5.4, 66.6) 119.9 ⫾ 50.5 (75.4, 175.7) 1.25 ⫾ 0.5 (1.0, 1.5) 0.8 ⫾ 1.0 (0, 1.5)
*Four subjects missing are all data in the table, but completed the PSI. Numbers in parentheses signify the denominator for the number of subjects answering the question. IQR, interquartile range; PSI, Parenting Stress Index.
and 13 parents of children with BCCs) were recruited for this project. There were no refusals. Table 1 provides details about the participants. All children were younger than 5 years, and the mean age of the children at the time of interview was 2.08 years (⫾ 9 weeks). On average, the children had been followed up for 1 year after surgery, and all of them had been followed up for at least 3 months. Pseudophakic children with UCCs tended to be older and had been followed up longer than were children with BCCs (P ⬍ .01). Children with BCCs also tended to be in poorer health, and their primary caregiver was less likely to be employed than were parents of children with UCCs (P ⫽ .01 and .02, respectively). Children with UCCs who had a primary IOL implant were similar to those who remained aphakic. However, pseudophakic children were slightly younger and had been followed up for slightly less time than those who remained aphakic (P ⫽ .06 for both). Parenting Stress Index Subscale and summary scores on the PSI for this sample were within the normal range (Table 2). None of the diagnostic groups had significantly higher mean scores on the PSI than did population norms. We had hypothesized that parents of children with UCCs would report higher levels of parenting stress than parents of children with BCCs because of the increased treatment burden imposed by patching, which is more commonly needed in children with UCCs. Parents of children with UCCs did report higher scores on all but four (the Adaptability, Acceptability, and Mood subscales in the Child Domain and the Competence subscale in the Parent Domain) of the 13 PSI subscales (Table 2). However, none of these differences approached statistical significance P ⱖ .10). We hypothesized that among parents of children with UCCs, those with aphakic children would report higher
levels of parenting stress than those with pseudophakic children because of the higher treatment burden associated with contact lens wear for the former compared with the latter. We further expected that the bulk of this increased stress would be expressed in the Child Domain and its subscales. In fact, among parents of children with UCCs, those with aphakic children reported higher mean PSI scores, higher scores on the Child Domain and the Parent Domain, and higher scores on all 13 subscales than did parents with pseudophakic children (Table 3). Two of these differences in the Child Domain (the Adaptability and Mood subscales in the Child Domain) were statistically significant (P ⫽ .03 and .01, respectively). Ocular Treatment Index Parents of 22 children (13 UCC aphakes, 6 UCC pseudophakes, and 3 with BCCs) completed at least two thirds of the 37-item scale. Some parents did not complete the questionnaire because they did not answer questions related to patching. Usually this occurred because the treatment regimen did not involve patching or because they were no longer complying with the patching portion of their children’s treatment regimen. Initial analyses of OTI item distributions for the sample of 22 identified one item with considerable missing data (40%). This item referred to the child’s schoolwork and was probably skipped by many parents because their children were too young to attend school or preschool. Consequently, this item was dropped from further reliability analyses. Internal consistency reliability was examined for the 22 respondents with complete OTI data; 8 items with item–total correlations lower than .25 were dropped, resulting in a Cronbach’s alpha of .94 for the 28-item scale. Items on the revised OTI are listed in Table 4. The revised OTI has an observed range of 47 to 123 and a theoretical range of 28 to 140. The mean total score was 85.2, with a
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TABLE 2. PSI Score: Bilateral Cataracts Versus Unilateral Cataracts Population norms Unilateral N ⴝ 28
Child Domain Distractibility Adaptability Reinforces Parent Demandingness Mood Acceptability Parent Domain Competence Isolation Attachment Health Role Restriction Depression Spouse Total Stress Life Stress¶
Bilateral N ⴝ 13
Difference
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P
Mean*
SD
Mean
95% CI
Mean
95% CI
Mean
95% CI
t
Wilcoxon rank sum
98†
20
103.5 26.0 27.1 9.1 19.8 10.1 11.7 117.3 25.2 13.7 11.5 12.7 18.0 17.9 18.1 220.7 8.9
94.9, 112.0 24.3, 27.8 24.9, 29.4 8.1, 10.1 17.3, 22.3 8.8, 11.3 10.2, 13.2 107.1, 127.4 23.0, 27.4 12.4, 15.0 10.5, 12.5 11.5, 13.9 15.9, 20.1 16.0, 19.8 15.9, 20.3 202.6, 238.8 5.3, 12.5
100.5 23.5 27.5 8.2 19.1 10.6 11.7 108.8 25.2 12.1 11.1 11.1 16.8 16.7 15.8 209.3 7.6
91.2, 109.8 21.0, 26.0 24.6, 30.4 8.5, 9.9 16.7, 21.4 8.5, 12.6 9.8, 13.6 94.3, 123.2 20.8, 29.5 9.8, 14.4 8.9, 13.3 10.0, 12.2 14.6, 19.1 13.0, 20.3 12.8, 18.8 166.2, 232.3 2.7, 12.5
2.96 2.50 ⫺0.39 0.90 0.70 ⫺0.51 0.05 8.50 0.01 1.60 0.42 1.63 1.13 1.26 2.24 11.46 1.31
⫺11.1, 17.07 ⫺0.55, 5.55 ⫺4.22, 3.43 ⫺0.90, 2.71 ⫺3.38, 4.79 ⫺2.74, 1.72 ⫺2.48, 2.58 ⫺9.15, 26.15 ⫺4.19, 4.22 ⫺0.80, 4.00 ⫺1.62, 2.44 ⫺0.35, 3.61 ⫺2.33, 4.59 ⫺2.35, 4.88 ⫺1.54, 6.02 ⫺19.22, 42.15 ⫺4.88, 7.50
0.67 0.11 0.84 0.32 0.73 0.64 0.97 0.36 1.00 0.18 0.71 0.10 0.44 0.48 0.24 0.41 0.67
0.79 0.18 0.69 0.30 0.88 0.53 0.87 0.44 0.97 0.19 0.47 0.06 0.64 0.42 0.41 0.57 0.76
127‡
26
224§
38
*In the second year of life. †Mean (SD) in parents of 2-year-olds ⫽ 104 (19), in 3-year-olds ⫽ 97 (18), and in 4-year-olds ⫽ 103 (19). ‡Mean (SD) in parents of 2-year-olds ⫽ 126 (28), in 3-year-olds ⫽ 122 (23), and in 4-year-olds ⫽ 126 (26). §Mean (SD) in parents of 2-year-olds ⫽ 229 (39), in 3-year-olds ⫽ 221 (38), and in 4-year-olds ⫽ 229 (40). ¶Median in normal population is 6 with interquartile range from 3 to 11. PSI, Parenting Stress Index; CI, confidence interval.
TABLE 3. PSI scores by type of treatment in parents of children with UCCs: aphakic versus pseudophakic Population Pseudophakic norms Aphakic (N ⴝ 14) (N ⴝ 14) Difference
Child Domain Distractibility Adaptability Reinforces Parent Demandingness Mood Acceptability Parent Domain Competence Isolation Attachment Health Role Restriction Depression Spouse Total Stress Life Stress㛳 OTI¶
Mean*
SD
Mean
95% CI
Mean
95% CI
98†
20
111 26.2 29.5 9.5 22.0 11.6 12.8 126.9 27.1 14.9 12.3 12.3 19.3 22.6 19.4 237.9 9.9 90.9
96.6, 125.4 23.7, 28.8 28.1, 32.9 8.2, 10.8 17.8, 26.4 9.5, 13.6 10.3, 15.3 112.1, 141.7 23.5, 30.7 13.5, 16.4 10.9, 13.6 11.4, 15.1 18.0, 22.6 16.4, 22.8 16.1, 22.7 209.7, 266.2 3.3, 16.5 78.2, 103.6
95.9 25.8 24.7 8.6 17.6 8.6 10.6 107.6 23.3 12.4 10.7 12.1 16.6 16.2 16.7 203.5 7.9 78.7
88.5, 105.4 23.0, 28.6 22.0, 27.5 7.0, 10.3 15.0, 20.2 7.4, 9.7 8.8, 12.4 93.8, 121.3 20.7, 25.9 10.3, 14.6 9.1, 12.3 10.3, 14.0 13.4, 19.5 14.1, 18.3 13.6, 19.9 181.1, 225.9 4.0, 11.8 58.2, 90.1
127‡
26
224§
38
Mean 15.1 0.4 4.8 0.9 4.4 3.0 2.1 19.4 3.8 2.5 1.6 1.4 2.6 3.4 2.7 34.4 1.9 12.3
P
95% CI
t
Wilcoxon rank sum
⫺1.3, 31.5 ⫺3.2, 4.0 0.6, 8.9 ⫺1.1, 2.8 ⫺0.4, 9.3 0.8, 5.2 ⫺0.8, 5.1 0.1, 38.6 ⫺0.4, 8.0 0.0, 5.0 ⫺0.4, 3.6 ⫺1.3, 3.6 ⫺1.5, 6.8 ⫺0.2, 7.1 ⫺1.6, 7.1 0.2, 68.7 ⫺5.4, 9.2 ⫺9.2, 33.7
0.07 0.81 0.03 0.38 0.07 0.01 0.14 0.05 0.08 0.05 0.12 0.35 0.20 0.06 0.21 0.05 0.59 0.24
0.15 0.50 0.04 0.29 0.11 0.02 0.23 0.06 0.10 0.06 0.17 0.49 0.21 0.13 0.22 0.07 0.80 0.15
*In the second year of life. †Mean (SD) in parents of 2-year-olds ⫽ 104 (19), in 3-year-olds ⫽ 97 (18), and in 4-year-olds ⫽ 103 (19). ‡Mean (SD) in parents of 2-year-olds ⫽ 126 (28), in 3-year-olds ⫽ 122 (23), and in 4-year-olds ⫽ 126 (26). §Mean (SD) in parents of 2-year-olds ⫽ 229 (39), in 3-year-olds ⫽ 221 (38), and in 4-year-olds ⫽ 229 (40). 㛳Median in normal population is 6 with interquartile range from 3 to 11. ¶Data from parents of 13 aphakic and 6 pseudophakic children. PSI, Parenting Stress Index; CI, confidence interval; OTI, Ocular Treatment Index.
standard deviation of 20. This suggests a good distribution of scores. Four validity hypotheses were tested: (1) OTI total scores would be significantly correlated with several PSI
subscale scores measuring different dimensions of parenting stress; (2) OTI total scores would not be significantly correlated with situational stress unrelated to parenting as measured by the Life Stress subscale of the PSI; (3) OTI
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TABLE 4. Items on the Revised Ocular Treatment Index 1. My child’s poor vision gets in the way of his or her learning. 2. I am afraid that my child will never have good vision. 3. I don’t like the way my child’s treated eye looks. 4. Taking my child to the eye doctor is stressful. 5. I have trouble putting on my child’s patch. 6. The patch irritates my child’s skin. 7. I worry that my child will become injured when the patch is on. 8. I worry that my child will take his or her patch off when I am not around. 9. Patching is a source of tension or conflict in my marriage. 10. My child is much less active when patched than when not patched. 11. I worry that my child will be teased when he or she is wearing an eye patch. 12. My child can see well with his or her patch on.* 13. I have trouble keeping the patch on my child. 14. My child is clumsy and uncoordinated when patched. 15. I worry about what others may think when they see my child with his or her patch on. 16. I have trouble getting my child to wear the patch. 17. Patching is a source of tension or conflict in my relationship with my child. 18. I worry that my child does not wear the patch enough. 19. I worry that my child’s contact lenses or glasses will become broken. 20. I worry that my child will be injured because of wearing his or her contact lenses or glasses. 21. Wearing glasses or contact lenses is comfortable for my child.* 22. I have to replace my child’s glasses or contact lenses often. 23. Replacing my child’s glasses or contact lenses is expensive. 24. I worry that my child’s contacts will fall out or glasses will fall off during the day. 25. I worry that my child will lose his or her glasses or contact lenses. 26. My child’s eye become pink or bloodshot from wearing his or her contact lenses or glasses. 27. I can’t leave my child with other people because I am afraid that he or she will lose his or her contacts or glasses. 28. I am worried that my child’s glasses or contact lenses will become scratched. *Item is reversed in scoring.
total scores would not be significantly correlated with the child’s age; and (4) among the UCC group, parents of aphakic children would have higher OTI scores than parents of pseudophakic children. Three of the four validity hypotheses were supported. OTI scores were significantly and positively correlated with all three PSI summary scores and 11 of 13 PSI subscales (Table 5). OTI scores were positively associated with 1 of the remaining 2 PSI subscales P ⬍ .10), but the correlation was not statistically significant. Neither the Life Stress subscale of the PSI nor the child’s age was significantly correlated with the OTI, although both associations were positive (r ⫽ .17; P ⫽ .39, .31, and .09, respectively). Wilcoxon rank sum analysis indicated that OTI scores were higher among the UCC aphake group than among the pseudophakes (means were 90.9 versus 78.7, respectively, P ⫽ .24), but not significantly so.
TABLE 5. Spearman correlation coefficients between the PSI scores and the OTI PSI Child Domain summary score Distractibility subscale Adaptibility subscale Reinforces Parent subscale Demandingness subscale Mood subscale Acceptibility subscale PSI Parent Domain summary score Competence subscale Isolation subscale Attachment subscale Health subscale Role Restriction subscale Depression subscale Spouse subscale PSI Total Score PSI Life Stress Current age of the child
RSpear
P
.52 .45 .47 .45 0.56 .47 .38 .65 .60 .52 .25 0.48 .66 .48 .63 .63 .03 0.31
.001 .01 .01 .02 .002 .01 .04 ⬍.001 .001 .004 .20 .009 ⬍.001 .008 ⬍.001 ⬍.001 .39 .09
PSI, Parenting Stress Index; OTI, Ocular Treatment Index.
DISCUSSION This study aimed to examine patterns and levels of parenting stress in a population of young children with congenital cataracts and to develop and validate a conditionspecific instrument to assess the stress associated with caring for a young child undergoing treatment for UCC. As a group, the parents of children with congenital cataracts in our sample did not demonstrate increased levels of parenting stress compared with Abidin’s normative sample.3 On average, parents of children with UCCs did not report significantly higher levels of parenting stress than parents of children with BCCs. However, median reported stress was higher for parents of children with UCCs whose affected eye was initially left aphakic than for parents of pseudophakic children. These differences were statistically significant for the Adaptability and Mood subscales of the Child Domain. High scores on the Adaptability subscale are associated with the child’s difficulty in adjusting to changes in the physical or social environment, including overreaction to increases or decreases in sensory stimulation.3 High scores on the Mood subscale suggest that the child is perceived as depressed or unhappy and cries frequently. Thus, parents of aphakic children perceived their children as being overreactive to changes in sensory stimulation, including those changes associated with patching and CL wear, than did parents of pseudophakic children. Parents of aphakes also perceived their affected children to show more signs of unhappiness than did parents of pseudophakes. This study also provides preliminary evidence of the reliability and validity of a disease-specific measure of parenting stress in the treatment of congenital cataract. The OTI has excellent internal consistency reliability for a
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sample of children with congenital cataracts. Furthermore, a similar measure has recently been used for amblyopic children.24 Because it is important to examine linkages between new disease-specific measures and their generic counterparts,24 we assessed correlation of the OTI with a more psychometrically robust measure of generic parenting stress, the PSI. As hypothesized, the OTI shared significant portions of variance with 11 of 13 PSI subscales and all three summary scores. These data are particularly encouraging in light of the small sample available for this analysis. The specificity of the OTI is supported by the nonsignificant correlation with the Life Stress subscale of the PSI, suggesting that the OTI measures respondent stress caused by parenting rather than other life circumstances (eg, divorce, financial problems). Given the growing importance of disease-specific measures in pediatric psychological research,24 the OTI offers promise primarily as a tool for evaluating the effects of interventions designed to decrease parenting stress in this population and secondarily as a potential outcome of clinical trials to assess the comparative efficacy of various cataract treatments. The primary limitation of the current study is the small size of our study sample. Our small sample restricted the number and type of statistical analyses to examine the psychometric properties of the OTI. For example, factor analyses were not conducted to determine the factor structure of the 28-item scale. Additionally, we conducted a number of statistical tests without adjusting the alpha level. However, the significant findings that we observed were consistent across testing modalities as well as with our a priori hypotheses. Furthermore, our small sample size limits the power of this study to detect differences as being statistically significant. For example, given our sample size of 14 aphakic and 14 pseudophakic children, we had adequate power (ie, ⬎ 80%) to detect a difference of approximately 20% in mean PSI score. We had slightly more power to detect differences in parenting stress levels between parents of children with UCCs and BCCs, but the power to detect a 15% change in the mean PSI score was still less than 70%. It is also likely that demographic differences affect parenting stress in these families. Given the limited demographic data, it is therefore difficult to generalize these findings to other populations. It is also possible that clinicians selected treatments that minimized stress or financial burdens in certain families and that such uncontrolled confounding contributed to our findings. However, we would expect that such “confounding by indication” would tend to decrease the observed differences between parents of aphakic and pseudophakic children because, to maximize treatment compliance, doctors may implant IOLs in the patients they believe come from the highest stress households. However, such questions can only be fully
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answered in a randomized clinical trial, such as the proposed IATS. Increased parenting stress among parents of children with congenital cataract may have clinical implications that can be addressed by a pediatric psychologist in collaboration with the child’s ophthalmologist. Although further research is needed to examine the relationship between parenting stress and adherence to the treatment regimens for congenital cataract, parenting stress has been associated with poor treatment compliance in other pediatric conditions.8-12 Because adherence has been cited as the major determinant of success in patching therapy,25,26 high levels of parenting stress may ultimately undermine visual outcomes for these children. To maximize treatment compliance and the resultant visual outcomes, ophthalmologists may want to consider treatment modalities for these children that will minimize parenting stress. In addition, ophthalmologists may want to screen and monitor parenting stress among parents of children with congenital cataracts as well as provide psychosocial interventions to decrease this stress. Successful interventions to decrease parenting stress require a collaborative partnership between the ophthalmologist, the mental health professional, and the patient’s family. References 1. Goodman JF, Cameron J. The meaning of IQ constancy in young retarded children. J Genet Psychol 1978;132:109-19. 2. Ostberg M, Hagekull B. A structural modeling approach to the understanding of parenting stress. J Clin Child Psych 2000;29:61525. 3. Abidin RR. Parenting Stress Index: professional manual. 3rd ed. Odessa (FL): Psychological Assessment Resources; 1995. 4. Moran G, Pederson DR. Proneness to distress and ambivalent relationships. Infant Behav Dev 1998;21:493-503. 5. Hadadian A, Merbler J. Mother’s stress: implications for attachment relationships. Early Child Dev Care 1996;125:59-66. 6. Frankel KA, Harmon RJ. Depressed mothers: they don’t always look as bad as they feel. J Am Acad Child Adolesc Psychiatry 1996;35: 289-98. 7. Goldberg S, Morris P, Simmons RJ, Fowler RS, Levinson H. Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol 1990;15:347-58. 8. Eddy ME, Carter BD, Kronenberger WG, Conradsen S, Eid NS, Bourlnad SL, et al. Parent relationships and compliance in cystic fibrosis. J Pediatr Health Care 1998;12:196-202. 9. Otero S, Hodes M. Maternal expressed emotion and treatment compliance of children with epilepsy. Dev Med Child Neurol 2000; 42:604-8. 10. Kazdin AE, Wassell G. Barriers to treatment participation and therapeutic change among children referred for conduct disorder. J Clin Child Psychol 1999;28:160-72. 11. Thompson SJ, Auslander WE, White NH. Comparison of singlemother and two-parent families on metabolic control of children with diabetes. Diabetes Care 2001;24:234-8. 12. Anthony H, Paxton S, Bines J, Phelan P. Psychosocial predictors of adherence to nutritional recommendations and growth outcomes in children with cystic fibrosis. J Psychosom Res 1999;47:623-34. 13. Pelchat D, Ricard N, Bouchard J-M, Perreault M, Saucier J-F, Berthiaume M, et al. Adaptation of parents in relation to their 6-month-old infant’s type of disability. Child Care Health Dev 1999;25:377-97.
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14. Singer LT, Salvator A, Guo S, Collin M, Lilien L, Baley J. Maternal psychological distress and parenting stress after the birth of a very low-birth-weight infant. JAMA 1999;281:799-805. 15. Warfield ME, Krauss MW, Hauser-Cram P, Upshur CC, Shonkoff JP. Adaptation during early childhood among mothers of children with disabilities. J Dev Behav Pediatr 1999;20:9-16. 16. Innocenti MS, Huh D, Boyce GC. Families of children with disabilities: normative data and other considerations on parenting distress. Top Early Childhood Special Educ 1992;12:403-27. 17. Rahi JS, Dezateux C. National cross sectional study of detection of congenital and infantile cataract in the United Kingdom: role of childhood screening and surveillance. The British Congenital Cataract Interest Group. Br Med J 1999;318:362-5. 18. James LM. Maps of birth defects occurrence in the U.S., Birth Defects Monitoring Program (BDMP)/CPHA, 1970-1987. Teratology 1993;48:551-646. 19. Stewart-Brown SL, Haslum MN. Partial sight and blindness in children of the 1970 birth cohort at 10 years of age. J Epidemiol
Community Health 1988;42:17-23. 20. Birch EE, Stager DR. Prevalence of good visual acuity following surgery for congenital unilateral cataract. Arch Ophthalmol 1988; 106:40-2. 21. Smith KH, Baker DB, Keech RV, Adams LW, Rosa RH Jr, Austin CJ, Austin KM. Monocular congenital cataracts: psychological effects of treatment. J Pediatr Ophthalmol Strabismus 1991;28:245-9. 22. La Greca AM, Lemanek KL. Assessment as a process in pediatric psychology (editorial). J Pediatr Psychol 1996;21:137-151. 23. Testa MA, Simonson DC. Assessment of quality-of-life outcomes. N Engl J Med 1996;334:835-40. 24. Cole SR, Beck RW, Moke PS, Celano MP, Drews CD, Repka MX, et al. The amblyopia treatment index. J AAPOS 2001;5:250-4. 25. Simons K. Major review. Preschool vision screening: rationale, methodology and outcome. Surv Ophthalmol 1996;41:3-30. 26. Smith LK, Thompson JR, Woodruff G, Hiscox F. Factors affecting treatment compliance in amblyopia. J Pediatr Ophthalmol Strabismus 1995;32:98-101.
An Eye on the Arts – The Arts on the Eye
Berta said goodbye and watched her all the way until she disappeared down the alley beside the church. The years she had spent sitting outside her door, looking up at the mountains and the clouds, and holding conversations in her mind with her dead husband had taught her to ‘see’ people. Her vocabulary was limited, so she could find no other word to describe all the many sensations that other people aroused in her, but that was what happened; she ‘saw through’ other people, and could tell what their feelings were. It had all started at the funeral for her one great love. She was weeping, and a child next to her—the son of an inhabitant of Viscos, who was now a grown man and lived thousands of miles away—asked her why she was sad. Berta did not want to frighten the child by mentioning death and final farewells, so all she said was that her husband had gone away and might not come back to Viscos for a long time. ‘I think he was having you on,’ the boy replied. ‘I’ve just seen him hiding behind a grave, all smiles, and with a soup spoon in his hand.’ The boy’s mother heard what he said and scolded him for it. ‘Children are always seeing things,’ she said, apologising to Berta. But Berta immediately stopped crying and looked in the direction the child had indicated; her husband had always had the annoying habit of wanting to eat his soup with a special spoon, however much this irritated her— because all spoons are the same and hold the same amount of soup—yet he had always insisted on using his special spoon. Berta had never told anyone this, for fear people would think him crazy. So the boy really had seen her husband; the spoon was the proof. Children could ‘see’ things. From then on, Berta decided that she was going to learn to ‘see’ as well, because she wanted to talk to her husband, to have him back—if only as a ghost. —Paulo Coelho (from The Devil and Miss Prym)
F
From the Department of Epidemiology,a Rollins School of Public Health, Emory University School of Public Health and the Departments of Ophthalmologyb and Psychiatry and Behavioral Sciences,c Emory University School of Medicine, Atlanta, Georgia; and Indiana University School of Medicine,d Indianapolis, Indiana. Submitted May 20, 2002. Revisions accepted April 18, 2003. Reprint requests: Carolyn Drews, PhD, Department of Epidemiology, Rollins School of Public Health, Emory University, 1518 Clifton Rd, NE, Atlanta, GA 30322. Copyright © 2003 by the American Association for Pediatric Ophthalmology and Strabismus. 1091-8531/2003/$35.00 ⫹ 0 doi:10.1016/S1091-8531(03)00118-6
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rental stress have been associated with poor treatment compliance.8-12 Parents of infants with congenital conditions, chronic illnesses, and disabilities report higher levels of parenting stress on the Parenting Stress Index (PSI)—mainly on the domain assessing perceptions of the child’s behavior (Child Domain)—than do parents in control groups.7,13,14 Longitudinal studies of parenting stress indicate that stress levels remain high for parents of children with disabilities or chronic illness.14,15 However, only one study included children with visual impairments. In this study, compared with the PSI normative sample, mothers of 725 young children with disabilities (38 with visual impairments) reported significantly greater stress on the Child Domain but not on the Parent Domain.16 Congenital cataract is a relatively rare condition, with a prevalence of approximately 2.5/10,000 live births.17-19 Approximately 40% of all congenital cataracts are unilateral.17,19 Adherence to the treatment regimen of patching and visual correction with contact lenses or spectacles is believed to be critical to the visual outcome of children with congenital cataracts.20 Yet, the treatment regimens involving the care and expense of contact lenses and extensive patching can be onerous for caregivers. As infants develop, treatment can become more stressful as the child becomes more adept at resisting patching and contact lens insertion. Contact lenses are costly and easily lost or misJournal of AAPOS
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placed, thus adding financial burden to many families. Thus, parents of infants with congenital cataracts, particularly those with UCCs, may be at increased risk for parenting stress.21 Furthermore, high levels of parenting stress in this population may have negative implications for treatment because stressed parents may “give up” on patching, contact lens wear, or both and settle for suboptimal vision in their child’s aphakic eye. Thus, there is a need for information about parental stress in caregivers of children with congenital cataracts. The purpose of the present study was to examine parenting stress among caregivers of young children with congenital cataracts. The current study examines two specific questions: (1) What levels of parenting stress are reported by caregivers of young children with congenital cataracts? (2) Do the levels of parenting stress differ by type of cataract and/or by treatment regimen?
SUBJECTS AND METHODS Subjects Data for this study come from the parents of 41 children younger than 5 years who have congenital cataracts. Thirteen of the children had BCCs and twenty-eight had UCCs. Half of the children with UCCs had an intraocular lens (IOL) placed at the time of cataract surgery; the remaining 14 remained aphakic. One of the aphakic children subsequently had an IOL implanted and was retained in the aphakic group. The treating pediatric ophthalmologist made all decisions regarding treatment. Patients with UCCs were recruited from four hospitals (ie, Emory and Indiana Universities, the Medical University of South Carolina, and the Manhattan Eye and Ear Institute) as part of a multisite pilot study comparing IOL with contact lens (CL) correction in infants with a UCC removed between the ages of 1 to 6 months. Parents of children with BCCs were recruited from two sites (ie, Emory and Indiana Universities) specifically for this project. The study methods were similar for all groups of parents. The Institutional Review Boards of all participating institutions approved the protocol. Participants were told about the parenting stress study during a regular clinic appointment or during a visit scheduled in a pilot study comparing visual outcomes of aphakic and pseudophakic children with UCC. After they provided informed consent, parents completed a series of self-report questionnaires during the clinic visit; unfinished questionnaires were taken home and returned to the investigators by mail. Measures Parenting stress was assessed using two measures: the PSI3 and the Ocular Treatment Index (OTI). The PSI is a well-researched, standardized, self-report measure of parenting stressors consistently related to dysfunctional parenting. The 120-item scale yields a total stress score and
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two factor-based scores: a Child Domain score and a Parent Domain score. The Child Domain includes 6 subscales (Distractibility/Hyperactivity, Adaptability, Reinforces Parent, Demandingness, Mood, and Acceptability), and the Parent Domain includes 7 subscales (Competence, Isolation, Attachment, Health, Role Restriction, Depression, and Spouse). The PSI also includes a separate scale, Life Stress, which assesses situational stress (eg, death of a relative, loss of a job) outside the parent– child relationship that might affect parenting stress. The five response choices for most items on the PSI range from “strongly agree” to “strongly disagree.” Higher scores indicate greater stress. Disease-specific measures of psychological variables are often preferred to general measures because they focus on domains most relevant to the target disease.22,23 At the time of this study, there were no published reports of disease-specific measures of parenting stress or quality of life for parents of children with congenital cataract or other ophthalmic conditions. Because the PSI does not measure parenting stressors specific to the care of a child with visual impairments or ocular anomalies, we developed the OTI, an illness-specific parenting stress measure. The original OTI consisted of 37 Likert-type items with five response choices ranging from “strongly agree” to “strongly disagree.” All items were written by an interdisciplinary research team (pediatric ophthalmologist, epidemiologist, clinical child psychologist, and orthoptist) based on clinical experience with cataract patients, a focus group with parents of children with UCCs, and familiarity with the bodies of child development and pediatric psychology literature. A few items were added after review of the proposed scaled by the Infant Aphakia Treatment Study (IATS) Advisory Committee and the parents of two young children with BCCs. Statistical Analyses Statistical analyses were conducted using SPSS for windows (SPSS, Chicago, IL) and SAS 8.0 for windows (SAS, Cary, NC). For hypotheses related to differences in the amount of stress reported by parents of children with different types of cataract, analysis of variance (ANOVA) and Student’s t test were used to assess group and UCC– BCC differences in reported stress levels. The results were confirmed using nonparametric tests (ie, nonparametric ANOVAs and Wilcoxon rank sum statistics). Scaling procedures, correlation coefficients, and reliability analyses were conducted to estimate the quality of the OTI. Student’s t test and Wilcoxon rank sum test were also used to assess the criterion validity of the OTI.
RESULTS Participants A total of 41 subjects (14 parents of aphakic children with UCCs, 14 parents of pseudophakic children with UCCs,
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TABLE 1. Characteristics of respondents Unilateral congenital cataract Variable No. (#)/% Male White Child’s health not excellent Respondent is child’s mother Respondent’s health not excellent Mother is employed Child in daycare Mean ⫾ SD (IQR) Age at interview (wk) Age at surgery (wk) Weeks since surgery No. preschool children at home No. older children at home
Aphakic (n ⴝ 14)
Pseudophakic (n ⴝ 14)*
Bilateral congenital cataract (n ⴝ 13)
3 (12)/25.0 10 (10)/100.0 1 (13)/7.7 11 (14)/78.6 5 (13)/38.5 9 (14)/32.1 6 (14)/42.9
7 (14)/50.0 11 (13)/84.6 0 (14)/0.0 12 (14)/85.7 4 (14)/28.6 11 (14)/39.3 8 (13)/61.5
4 (8)/50.0 4 (4)/100.0 4 (12)/33.3 10 (12)/83.3 5 (12)/41.6 4 (12)/33.3 2 (10)/20
92.6 ⫾ 54.0 (61.6, 111.0) 8.5 ⫾ 7.9 (3.3, 10.3) 84.1 ⫾ 53.4 (37.3, 102.3) 1.6 ⫾ 0.8 (1, 2) 0.3 ⫾ 0.6 (0, 0)
59.4 ⫾ 37.4 (25.9, 98.0) 7.6 ⫾ 5.9 (3.1, 10.6) 52.4 ⫾ 37.2 (16.1, 87.5) 1.4 ⫾ 0.7 (1, 2) 0.8 ⫾ 0.8 (0, 1)
162.0 ⫾ 39.6 (129.8, 192.2) 39.2 ⫾ 59.8 (5.4, 66.6) 119.9 ⫾ 50.5 (75.4, 175.7) 1.25 ⫾ 0.5 (1.0, 1.5) 0.8 ⫾ 1.0 (0, 1.5)
*Four subjects missing are all data in the table, but completed the PSI. Numbers in parentheses signify the denominator for the number of subjects answering the question. IQR, interquartile range; PSI, Parenting Stress Index.
and 13 parents of children with BCCs) were recruited for this project. There were no refusals. Table 1 provides details about the participants. All children were younger than 5 years, and the mean age of the children at the time of interview was 2.08 years (⫾ 9 weeks). On average, the children had been followed up for 1 year after surgery, and all of them had been followed up for at least 3 months. Pseudophakic children with UCCs tended to be older and had been followed up longer than were children with BCCs (P ⬍ .01). Children with BCCs also tended to be in poorer health, and their primary caregiver was less likely to be employed than were parents of children with UCCs (P ⫽ .01 and .02, respectively). Children with UCCs who had a primary IOL implant were similar to those who remained aphakic. However, pseudophakic children were slightly younger and had been followed up for slightly less time than those who remained aphakic (P ⫽ .06 for both). Parenting Stress Index Subscale and summary scores on the PSI for this sample were within the normal range (Table 2). None of the diagnostic groups had significantly higher mean scores on the PSI than did population norms. We had hypothesized that parents of children with UCCs would report higher levels of parenting stress than parents of children with BCCs because of the increased treatment burden imposed by patching, which is more commonly needed in children with UCCs. Parents of children with UCCs did report higher scores on all but four (the Adaptability, Acceptability, and Mood subscales in the Child Domain and the Competence subscale in the Parent Domain) of the 13 PSI subscales (Table 2). However, none of these differences approached statistical significance P ⱖ .10). We hypothesized that among parents of children with UCCs, those with aphakic children would report higher
levels of parenting stress than those with pseudophakic children because of the higher treatment burden associated with contact lens wear for the former compared with the latter. We further expected that the bulk of this increased stress would be expressed in the Child Domain and its subscales. In fact, among parents of children with UCCs, those with aphakic children reported higher mean PSI scores, higher scores on the Child Domain and the Parent Domain, and higher scores on all 13 subscales than did parents with pseudophakic children (Table 3). Two of these differences in the Child Domain (the Adaptability and Mood subscales in the Child Domain) were statistically significant (P ⫽ .03 and .01, respectively). Ocular Treatment Index Parents of 22 children (13 UCC aphakes, 6 UCC pseudophakes, and 3 with BCCs) completed at least two thirds of the 37-item scale. Some parents did not complete the questionnaire because they did not answer questions related to patching. Usually this occurred because the treatment regimen did not involve patching or because they were no longer complying with the patching portion of their children’s treatment regimen. Initial analyses of OTI item distributions for the sample of 22 identified one item with considerable missing data (40%). This item referred to the child’s schoolwork and was probably skipped by many parents because their children were too young to attend school or preschool. Consequently, this item was dropped from further reliability analyses. Internal consistency reliability was examined for the 22 respondents with complete OTI data; 8 items with item–total correlations lower than .25 were dropped, resulting in a Cronbach’s alpha of .94 for the 28-item scale. Items on the revised OTI are listed in Table 4. The revised OTI has an observed range of 47 to 123 and a theoretical range of 28 to 140. The mean total score was 85.2, with a
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TABLE 2. PSI Score: Bilateral Cataracts Versus Unilateral Cataracts Population norms Unilateral N ⴝ 28
Child Domain Distractibility Adaptability Reinforces Parent Demandingness Mood Acceptability Parent Domain Competence Isolation Attachment Health Role Restriction Depression Spouse Total Stress Life Stress¶
Bilateral N ⴝ 13
Difference
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P
Mean*
SD
Mean
95% CI
Mean
95% CI
Mean
95% CI
t
Wilcoxon rank sum
98†
20
103.5 26.0 27.1 9.1 19.8 10.1 11.7 117.3 25.2 13.7 11.5 12.7 18.0 17.9 18.1 220.7 8.9
94.9, 112.0 24.3, 27.8 24.9, 29.4 8.1, 10.1 17.3, 22.3 8.8, 11.3 10.2, 13.2 107.1, 127.4 23.0, 27.4 12.4, 15.0 10.5, 12.5 11.5, 13.9 15.9, 20.1 16.0, 19.8 15.9, 20.3 202.6, 238.8 5.3, 12.5
100.5 23.5 27.5 8.2 19.1 10.6 11.7 108.8 25.2 12.1 11.1 11.1 16.8 16.7 15.8 209.3 7.6
91.2, 109.8 21.0, 26.0 24.6, 30.4 8.5, 9.9 16.7, 21.4 8.5, 12.6 9.8, 13.6 94.3, 123.2 20.8, 29.5 9.8, 14.4 8.9, 13.3 10.0, 12.2 14.6, 19.1 13.0, 20.3 12.8, 18.8 166.2, 232.3 2.7, 12.5
2.96 2.50 ⫺0.39 0.90 0.70 ⫺0.51 0.05 8.50 0.01 1.60 0.42 1.63 1.13 1.26 2.24 11.46 1.31
⫺11.1, 17.07 ⫺0.55, 5.55 ⫺4.22, 3.43 ⫺0.90, 2.71 ⫺3.38, 4.79 ⫺2.74, 1.72 ⫺2.48, 2.58 ⫺9.15, 26.15 ⫺4.19, 4.22 ⫺0.80, 4.00 ⫺1.62, 2.44 ⫺0.35, 3.61 ⫺2.33, 4.59 ⫺2.35, 4.88 ⫺1.54, 6.02 ⫺19.22, 42.15 ⫺4.88, 7.50
0.67 0.11 0.84 0.32 0.73 0.64 0.97 0.36 1.00 0.18 0.71 0.10 0.44 0.48 0.24 0.41 0.67
0.79 0.18 0.69 0.30 0.88 0.53 0.87 0.44 0.97 0.19 0.47 0.06 0.64 0.42 0.41 0.57 0.76
127‡
26
224§
38
*In the second year of life. †Mean (SD) in parents of 2-year-olds ⫽ 104 (19), in 3-year-olds ⫽ 97 (18), and in 4-year-olds ⫽ 103 (19). ‡Mean (SD) in parents of 2-year-olds ⫽ 126 (28), in 3-year-olds ⫽ 122 (23), and in 4-year-olds ⫽ 126 (26). §Mean (SD) in parents of 2-year-olds ⫽ 229 (39), in 3-year-olds ⫽ 221 (38), and in 4-year-olds ⫽ 229 (40). ¶Median in normal population is 6 with interquartile range from 3 to 11. PSI, Parenting Stress Index; CI, confidence interval.
TABLE 3. PSI scores by type of treatment in parents of children with UCCs: aphakic versus pseudophakic Population Pseudophakic norms Aphakic (N ⴝ 14) (N ⴝ 14) Difference
Child Domain Distractibility Adaptability Reinforces Parent Demandingness Mood Acceptability Parent Domain Competence Isolation Attachment Health Role Restriction Depression Spouse Total Stress Life Stress㛳 OTI¶
Mean*
SD
Mean
95% CI
Mean
95% CI
98†
20
111 26.2 29.5 9.5 22.0 11.6 12.8 126.9 27.1 14.9 12.3 12.3 19.3 22.6 19.4 237.9 9.9 90.9
96.6, 125.4 23.7, 28.8 28.1, 32.9 8.2, 10.8 17.8, 26.4 9.5, 13.6 10.3, 15.3 112.1, 141.7 23.5, 30.7 13.5, 16.4 10.9, 13.6 11.4, 15.1 18.0, 22.6 16.4, 22.8 16.1, 22.7 209.7, 266.2 3.3, 16.5 78.2, 103.6
95.9 25.8 24.7 8.6 17.6 8.6 10.6 107.6 23.3 12.4 10.7 12.1 16.6 16.2 16.7 203.5 7.9 78.7
88.5, 105.4 23.0, 28.6 22.0, 27.5 7.0, 10.3 15.0, 20.2 7.4, 9.7 8.8, 12.4 93.8, 121.3 20.7, 25.9 10.3, 14.6 9.1, 12.3 10.3, 14.0 13.4, 19.5 14.1, 18.3 13.6, 19.9 181.1, 225.9 4.0, 11.8 58.2, 90.1
127‡
26
224§
38
Mean 15.1 0.4 4.8 0.9 4.4 3.0 2.1 19.4 3.8 2.5 1.6 1.4 2.6 3.4 2.7 34.4 1.9 12.3
P
95% CI
t
Wilcoxon rank sum
⫺1.3, 31.5 ⫺3.2, 4.0 0.6, 8.9 ⫺1.1, 2.8 ⫺0.4, 9.3 0.8, 5.2 ⫺0.8, 5.1 0.1, 38.6 ⫺0.4, 8.0 0.0, 5.0 ⫺0.4, 3.6 ⫺1.3, 3.6 ⫺1.5, 6.8 ⫺0.2, 7.1 ⫺1.6, 7.1 0.2, 68.7 ⫺5.4, 9.2 ⫺9.2, 33.7
0.07 0.81 0.03 0.38 0.07 0.01 0.14 0.05 0.08 0.05 0.12 0.35 0.20 0.06 0.21 0.05 0.59 0.24
0.15 0.50 0.04 0.29 0.11 0.02 0.23 0.06 0.10 0.06 0.17 0.49 0.21 0.13 0.22 0.07 0.80 0.15
*In the second year of life. †Mean (SD) in parents of 2-year-olds ⫽ 104 (19), in 3-year-olds ⫽ 97 (18), and in 4-year-olds ⫽ 103 (19). ‡Mean (SD) in parents of 2-year-olds ⫽ 126 (28), in 3-year-olds ⫽ 122 (23), and in 4-year-olds ⫽ 126 (26). §Mean (SD) in parents of 2-year-olds ⫽ 229 (39), in 3-year-olds ⫽ 221 (38), and in 4-year-olds ⫽ 229 (40). 㛳Median in normal population is 6 with interquartile range from 3 to 11. ¶Data from parents of 13 aphakic and 6 pseudophakic children. PSI, Parenting Stress Index; CI, confidence interval; OTI, Ocular Treatment Index.
standard deviation of 20. This suggests a good distribution of scores. Four validity hypotheses were tested: (1) OTI total scores would be significantly correlated with several PSI
subscale scores measuring different dimensions of parenting stress; (2) OTI total scores would not be significantly correlated with situational stress unrelated to parenting as measured by the Life Stress subscale of the PSI; (3) OTI
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TABLE 4. Items on the Revised Ocular Treatment Index 1. My child’s poor vision gets in the way of his or her learning. 2. I am afraid that my child will never have good vision. 3. I don’t like the way my child’s treated eye looks. 4. Taking my child to the eye doctor is stressful. 5. I have trouble putting on my child’s patch. 6. The patch irritates my child’s skin. 7. I worry that my child will become injured when the patch is on. 8. I worry that my child will take his or her patch off when I am not around. 9. Patching is a source of tension or conflict in my marriage. 10. My child is much less active when patched than when not patched. 11. I worry that my child will be teased when he or she is wearing an eye patch. 12. My child can see well with his or her patch on.* 13. I have trouble keeping the patch on my child. 14. My child is clumsy and uncoordinated when patched. 15. I worry about what others may think when they see my child with his or her patch on. 16. I have trouble getting my child to wear the patch. 17. Patching is a source of tension or conflict in my relationship with my child. 18. I worry that my child does not wear the patch enough. 19. I worry that my child’s contact lenses or glasses will become broken. 20. I worry that my child will be injured because of wearing his or her contact lenses or glasses. 21. Wearing glasses or contact lenses is comfortable for my child.* 22. I have to replace my child’s glasses or contact lenses often. 23. Replacing my child’s glasses or contact lenses is expensive. 24. I worry that my child’s contacts will fall out or glasses will fall off during the day. 25. I worry that my child will lose his or her glasses or contact lenses. 26. My child’s eye become pink or bloodshot from wearing his or her contact lenses or glasses. 27. I can’t leave my child with other people because I am afraid that he or she will lose his or her contacts or glasses. 28. I am worried that my child’s glasses or contact lenses will become scratched. *Item is reversed in scoring.
total scores would not be significantly correlated with the child’s age; and (4) among the UCC group, parents of aphakic children would have higher OTI scores than parents of pseudophakic children. Three of the four validity hypotheses were supported. OTI scores were significantly and positively correlated with all three PSI summary scores and 11 of 13 PSI subscales (Table 5). OTI scores were positively associated with 1 of the remaining 2 PSI subscales P ⬍ .10), but the correlation was not statistically significant. Neither the Life Stress subscale of the PSI nor the child’s age was significantly correlated with the OTI, although both associations were positive (r ⫽ .17; P ⫽ .39, .31, and .09, respectively). Wilcoxon rank sum analysis indicated that OTI scores were higher among the UCC aphake group than among the pseudophakes (means were 90.9 versus 78.7, respectively, P ⫽ .24), but not significantly so.
TABLE 5. Spearman correlation coefficients between the PSI scores and the OTI PSI Child Domain summary score Distractibility subscale Adaptibility subscale Reinforces Parent subscale Demandingness subscale Mood subscale Acceptibility subscale PSI Parent Domain summary score Competence subscale Isolation subscale Attachment subscale Health subscale Role Restriction subscale Depression subscale Spouse subscale PSI Total Score PSI Life Stress Current age of the child
RSpear
P
.52 .45 .47 .45 0.56 .47 .38 .65 .60 .52 .25 0.48 .66 .48 .63 .63 .03 0.31
.001 .01 .01 .02 .002 .01 .04 ⬍.001 .001 .004 .20 .009 ⬍.001 .008 ⬍.001 ⬍.001 .39 .09
PSI, Parenting Stress Index; OTI, Ocular Treatment Index.
DISCUSSION This study aimed to examine patterns and levels of parenting stress in a population of young children with congenital cataracts and to develop and validate a conditionspecific instrument to assess the stress associated with caring for a young child undergoing treatment for UCC. As a group, the parents of children with congenital cataracts in our sample did not demonstrate increased levels of parenting stress compared with Abidin’s normative sample.3 On average, parents of children with UCCs did not report significantly higher levels of parenting stress than parents of children with BCCs. However, median reported stress was higher for parents of children with UCCs whose affected eye was initially left aphakic than for parents of pseudophakic children. These differences were statistically significant for the Adaptability and Mood subscales of the Child Domain. High scores on the Adaptability subscale are associated with the child’s difficulty in adjusting to changes in the physical or social environment, including overreaction to increases or decreases in sensory stimulation.3 High scores on the Mood subscale suggest that the child is perceived as depressed or unhappy and cries frequently. Thus, parents of aphakic children perceived their children as being overreactive to changes in sensory stimulation, including those changes associated with patching and CL wear, than did parents of pseudophakic children. Parents of aphakes also perceived their affected children to show more signs of unhappiness than did parents of pseudophakes. This study also provides preliminary evidence of the reliability and validity of a disease-specific measure of parenting stress in the treatment of congenital cataract. The OTI has excellent internal consistency reliability for a
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sample of children with congenital cataracts. Furthermore, a similar measure has recently been used for amblyopic children.24 Because it is important to examine linkages between new disease-specific measures and their generic counterparts,24 we assessed correlation of the OTI with a more psychometrically robust measure of generic parenting stress, the PSI. As hypothesized, the OTI shared significant portions of variance with 11 of 13 PSI subscales and all three summary scores. These data are particularly encouraging in light of the small sample available for this analysis. The specificity of the OTI is supported by the nonsignificant correlation with the Life Stress subscale of the PSI, suggesting that the OTI measures respondent stress caused by parenting rather than other life circumstances (eg, divorce, financial problems). Given the growing importance of disease-specific measures in pediatric psychological research,24 the OTI offers promise primarily as a tool for evaluating the effects of interventions designed to decrease parenting stress in this population and secondarily as a potential outcome of clinical trials to assess the comparative efficacy of various cataract treatments. The primary limitation of the current study is the small size of our study sample. Our small sample restricted the number and type of statistical analyses to examine the psychometric properties of the OTI. For example, factor analyses were not conducted to determine the factor structure of the 28-item scale. Additionally, we conducted a number of statistical tests without adjusting the alpha level. However, the significant findings that we observed were consistent across testing modalities as well as with our a priori hypotheses. Furthermore, our small sample size limits the power of this study to detect differences as being statistically significant. For example, given our sample size of 14 aphakic and 14 pseudophakic children, we had adequate power (ie, ⬎ 80%) to detect a difference of approximately 20% in mean PSI score. We had slightly more power to detect differences in parenting stress levels between parents of children with UCCs and BCCs, but the power to detect a 15% change in the mean PSI score was still less than 70%. It is also likely that demographic differences affect parenting stress in these families. Given the limited demographic data, it is therefore difficult to generalize these findings to other populations. It is also possible that clinicians selected treatments that minimized stress or financial burdens in certain families and that such uncontrolled confounding contributed to our findings. However, we would expect that such “confounding by indication” would tend to decrease the observed differences between parents of aphakic and pseudophakic children because, to maximize treatment compliance, doctors may implant IOLs in the patients they believe come from the highest stress households. However, such questions can only be fully
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answered in a randomized clinical trial, such as the proposed IATS. Increased parenting stress among parents of children with congenital cataract may have clinical implications that can be addressed by a pediatric psychologist in collaboration with the child’s ophthalmologist. Although further research is needed to examine the relationship between parenting stress and adherence to the treatment regimens for congenital cataract, parenting stress has been associated with poor treatment compliance in other pediatric conditions.8-12 Because adherence has been cited as the major determinant of success in patching therapy,25,26 high levels of parenting stress may ultimately undermine visual outcomes for these children. To maximize treatment compliance and the resultant visual outcomes, ophthalmologists may want to consider treatment modalities for these children that will minimize parenting stress. In addition, ophthalmologists may want to screen and monitor parenting stress among parents of children with congenital cataracts as well as provide psychosocial interventions to decrease this stress. Successful interventions to decrease parenting stress require a collaborative partnership between the ophthalmologist, the mental health professional, and the patient’s family. References 1. Goodman JF, Cameron J. The meaning of IQ constancy in young retarded children. J Genet Psychol 1978;132:109-19. 2. Ostberg M, Hagekull B. A structural modeling approach to the understanding of parenting stress. J Clin Child Psych 2000;29:61525. 3. Abidin RR. Parenting Stress Index: professional manual. 3rd ed. Odessa (FL): Psychological Assessment Resources; 1995. 4. Moran G, Pederson DR. Proneness to distress and ambivalent relationships. Infant Behav Dev 1998;21:493-503. 5. Hadadian A, Merbler J. Mother’s stress: implications for attachment relationships. Early Child Dev Care 1996;125:59-66. 6. Frankel KA, Harmon RJ. Depressed mothers: they don’t always look as bad as they feel. J Am Acad Child Adolesc Psychiatry 1996;35: 289-98. 7. Goldberg S, Morris P, Simmons RJ, Fowler RS, Levinson H. Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol 1990;15:347-58. 8. Eddy ME, Carter BD, Kronenberger WG, Conradsen S, Eid NS, Bourlnad SL, et al. Parent relationships and compliance in cystic fibrosis. J Pediatr Health Care 1998;12:196-202. 9. Otero S, Hodes M. Maternal expressed emotion and treatment compliance of children with epilepsy. Dev Med Child Neurol 2000; 42:604-8. 10. Kazdin AE, Wassell G. Barriers to treatment participation and therapeutic change among children referred for conduct disorder. J Clin Child Psychol 1999;28:160-72. 11. Thompson SJ, Auslander WE, White NH. Comparison of singlemother and two-parent families on metabolic control of children with diabetes. Diabetes Care 2001;24:234-8. 12. Anthony H, Paxton S, Bines J, Phelan P. Psychosocial predictors of adherence to nutritional recommendations and growth outcomes in children with cystic fibrosis. J Psychosom Res 1999;47:623-34. 13. Pelchat D, Ricard N, Bouchard J-M, Perreault M, Saucier J-F, Berthiaume M, et al. Adaptation of parents in relation to their 6-month-old infant’s type of disability. Child Care Health Dev 1999;25:377-97.
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14. Singer LT, Salvator A, Guo S, Collin M, Lilien L, Baley J. Maternal psychological distress and parenting stress after the birth of a very low-birth-weight infant. JAMA 1999;281:799-805. 15. Warfield ME, Krauss MW, Hauser-Cram P, Upshur CC, Shonkoff JP. Adaptation during early childhood among mothers of children with disabilities. J Dev Behav Pediatr 1999;20:9-16. 16. Innocenti MS, Huh D, Boyce GC. Families of children with disabilities: normative data and other considerations on parenting distress. Top Early Childhood Special Educ 1992;12:403-27. 17. Rahi JS, Dezateux C. National cross sectional study of detection of congenital and infantile cataract in the United Kingdom: role of childhood screening and surveillance. The British Congenital Cataract Interest Group. Br Med J 1999;318:362-5. 18. James LM. Maps of birth defects occurrence in the U.S., Birth Defects Monitoring Program (BDMP)/CPHA, 1970-1987. Teratology 1993;48:551-646. 19. Stewart-Brown SL, Haslum MN. Partial sight and blindness in children of the 1970 birth cohort at 10 years of age. J Epidemiol
Community Health 1988;42:17-23. 20. Birch EE, Stager DR. Prevalence of good visual acuity following surgery for congenital unilateral cataract. Arch Ophthalmol 1988; 106:40-2. 21. Smith KH, Baker DB, Keech RV, Adams LW, Rosa RH Jr, Austin CJ, Austin KM. Monocular congenital cataracts: psychological effects of treatment. J Pediatr Ophthalmol Strabismus 1991;28:245-9. 22. La Greca AM, Lemanek KL. Assessment as a process in pediatric psychology (editorial). J Pediatr Psychol 1996;21:137-151. 23. Testa MA, Simonson DC. Assessment of quality-of-life outcomes. N Engl J Med 1996;334:835-40. 24. Cole SR, Beck RW, Moke PS, Celano MP, Drews CD, Repka MX, et al. The amblyopia treatment index. J AAPOS 2001;5:250-4. 25. Simons K. Major review. Preschool vision screening: rationale, methodology and outcome. Surv Ophthalmol 1996;41:3-30. 26. Smith LK, Thompson JR, Woodruff G, Hiscox F. Factors affecting treatment compliance in amblyopia. J Pediatr Ophthalmol Strabismus 1995;32:98-101.
An Eye on the Arts – The Arts on the Eye
Berta said goodbye and watched her all the way until she disappeared down the alley beside the church. The years she had spent sitting outside her door, looking up at the mountains and the clouds, and holding conversations in her mind with her dead husband had taught her to ‘see’ people. Her vocabulary was limited, so she could find no other word to describe all the many sensations that other people aroused in her, but that was what happened; she ‘saw through’ other people, and could tell what their feelings were. It had all started at the funeral for her one great love. She was weeping, and a child next to her—the son of an inhabitant of Viscos, who was now a grown man and lived thousands of miles away—asked her why she was sad. Berta did not want to frighten the child by mentioning death and final farewells, so all she said was that her husband had gone away and might not come back to Viscos for a long time. ‘I think he was having you on,’ the boy replied. ‘I’ve just seen him hiding behind a grave, all smiles, and with a soup spoon in his hand.’ The boy’s mother heard what he said and scolded him for it. ‘Children are always seeing things,’ she said, apologising to Berta. But Berta immediately stopped crying and looked in the direction the child had indicated; her husband had always had the annoying habit of wanting to eat his soup with a special spoon, however much this irritated her— because all spoons are the same and hold the same amount of soup—yet he had always insisted on using his special spoon. Berta had never told anyone this, for fear people would think him crazy. So the boy really had seen her husband; the spoon was the proof. Children could ‘see’ things. From then on, Berta decided that she was going to learn to ‘see’ as well, because she wanted to talk to her husband, to have him back—if only as a ghost. —Paulo Coelho (from The Devil and Miss Prym)