Abstract

Background

The Childhood Atopic Dermatitis Impact Scale (CADIS) was developed to measure the impact of AD on QoL in both affected children and their families. However, no scale of this kind exists in Japan. The aims of this study were to validate the Japanese Culturally Modified Version of the CADIS (JCMV-CADIS) and to describe the family impact of children with AD in a Japanese context.

Methods

Participants included primary-caregivers for children with AD between 2 and 6 years of age. Interviews were conducted, and new items for the Japanese version were drafted. Reliability and validity were evaluated and compared with the original CADIS, and unique features of the Japanese version were analyzed.

Results

Exploratory factor analysis revealed the following factors: “Symptoms” and “Activity Limitations and Behavior” in the Child domain, and “Emotions Related to Social Factors,” “Emotions Related to the Childs Condition,” “Family and Social Function,” “Complexity of Care,” and “Approaches to Management of AD in Daily Life” in the Parent domain. The latter two factors were unique to the JCMV-CADIS and were not derived from the Original. “Emotion” was split into two independent factors. All factors showed good reliability (internal consistency and stability) and validity (concurrent validity and discriminant validity), except for the concurrent validity of “Approaches to Management of AD in Daily Life.” This factor seemed to reflect characteristics similar to the family-related function.

Conclusions

The JCMV-CADIS is a QoL scale developed for Japanese children with AD and their families. Further evaluation of clinical applicability is needed.

Keywords

Atopic dermatitis; Child; Family; Quality of life; Reliability and validity

Abbreviations

AD, atopic dermatitis; CADIS, Childhood Atopic Dermatitis Impact Scale; JCMV-CADIS, Japanese Culturally Modified Version of the CADIS; SCORAD, Severity Scoring of Atopic Dermatitis

Introduction

Atopic dermatitis (AD) is a chronic, pruritic inflammatory skin disease that occurs most frequently in children (17% of American children), but that also affects many adults.1 and 2 In Japan, 12.8% of 4-month-old children, 9.8% of 18-month-old children, and 13.2% of 3-year-old children are affected by AD3 and the incidence appears to be increasing.

AD influences physical health as well as emotional and social well-being,4, 5, 6 and 7 and is documented to influence the daily lives of parents and caregivers. Faught et al. found that the impact on the daily lives of caregivers of children with eczema, especially in terms of parenting stress, was comparable to that on the daily lives of individuals raising children with other chronic maladies, such as diabetes or deafness. 8 Chamlin et al. reported that AD influences the sleep patterns of both affected children and their parents. 9 A study by Moore et al. revealed that parents of children with AD reported significantly more sleep disorders than parents of children with asthma. 10 They also found that the severity of parents' sleep disruption correlates with anxiety and depression in mothers and with anxiety in fathers.

Although a number of quantitative measures of the impact of AD on the QOL of children and their parents have been developed, comprehensive measures of the impact of AD on the family as a whole are limited to the Dermatitis Family Impact (DFI)11 and the Childhood Atopic Dermatitis Impact Scale (CADIS).7 and 12 Compared to the DFI, the CADIS includes a greater number of items, likely reflecting a more comprehensive measurement of QoL. Although the concurrent validity of the CADIS and other existing measures of QOL has not been verified and this tool has yet to be used in clinical research,13 and 14 its value lies in the ability to comprehensively measure the QoL effects of both children with AD and their parents. Of note, Neri et al. developed the Italian version of the CADIS. 15

The aims of this study were to validate the Japanese Culturally Modified Version of the CADIS (JCMV-CADIS) and to describe the family impact of AD in the Japanese context by comparing the JCMV-CADIS to the original version.

Methods

Study design

This study began with the creation of a direct Japanese-language translation of the original CADIS. First, three Japanese individuals with numerous years of experience living in the United States translated the original CADIS into Japanese. Next, it was back-translated into English and the equivalence of the back-translation and the original CADIS was verified by an American linguist. Next, a native Japanese-speaking linguist checked the validity of the Japanese-language version.

To verify face validity, the Japanese-language version was checked by five Japanese family members of children with AD, and the wording of some items was changed based on their feedback.

Qualitative, open-ended interviews were then conducted with the same five Japanese primary caregivers of children with AD, and new items for the Japanese version were created. Items in the modified scale were compared to those of the original version, and the unique features of the Japanese version were examined.

Participants

Participants were the caregivers of children aged between 2 and 6 years old who had been diagnosed with AD were recruited at 30 Japanese hospitals or clinics. In this study, the reasons that the age of participants of children with AD was set to 2–6 years old are as follows; We set the age over 2 years old because children eat baby food until around 2 years old. In the Family Impact of AD, we assumed that diet would be a difficulty, but that baby food preparations would be equally difficult for children with or without AD. Also, difficulties of child care that did not relate to the presence of the disease were predicted in the stages of development from 0 to 1 year old, when the primary caregiver must see to all aspect of child care regardless of the presence of AD. Thus, in this study, we limited the age of participants of children with AD to 2 years old or older. The reason we limited the study to pre-school children is because it is thought that characteristics of development are different from schoolchildren.

Disease severity was measured by a pediatric allergist using the Severity Scoring of Atopic Dermatitis (SCORAD) Index. Only native Japanese speakers with the ability to complete a written survey were selected.

Ethical considerations

The interview participants received either verbal or written explanation before the research and provided written informed consent. The questionnaire respondents received written explanation, and if they sent the completed questionnaire, consent was considered obtained.

The explanation was as follows: Participation in this study is based on the free will of the person. There are no disadvantages to not participating in the study. Participants personal identifying information will be made indistinguishable. The data will be kept secure, and will not be used for purposes other than for this study.

This study was approved by the ethics committee at Nagoya University Graduate School of Medicine (Approval Nos. 9-165 and 11-135).

Instruments

The following scales were administered to all participants:

  • Childhood Atopic Dermatitis Impact Scale (CADIS);
  • Severity Scoring of Atopic Dermatitis (SCORAD) for evaluation of the severity of AD;
  • Dermatitis Family Impact (DFI) for evaluation of impact on the family;
  • Parenting Stress-Short Form (PS-SF) for evaluation of parenting stress; and
  • Family Assessment Inventory (FAI) for evaluation of family function

Childhood Atopic Dermatitis Impact Scale (CADIS)7 and 12

Chamlin et al. developed a measure of the impact of AD on the QOL of both affected children and their families. Altogether, five subdomains are included: the Child domain consists of “Symptoms” and “Activity Limitations and Behavior,” while the Parent domain consists of “Family and Social Function,” “Sleep,” and “Emotions.” The total score ranges from 0 to 180, with 0 for “Never” to 4 for “All the Time” for each of the 45 items. The lower the total score, the lower the impact of AD

Severity Scoring of Atopic Dermatitis (SCORAD)16 and 17

SCORAD is a set of international criteria to assess the severity of eczema. The Japanese Dermatology Association cites the Japanese-language version of SCORAD in its AD guidelines.18

Dermatitis Family Impact (DFI)11

This instrument measures the impact of a condition on the QOL of the family, just as the CADIS does. The DFI is a disease-specific instrument with verified validity and reliability. A lower score indicates lower impact. Ohya et al. developed a Japanese-language version of the instrument. 19

Parenting Stress-Short Form (PS-SF)20 and 21

The Parenting Stress Index (PSI) is an instrument that measures many facets of childcare stress, such as social factors affecting parents, parents' personalities, and character traits of children. This instrument is divided into subscales for parents and children. Narama et al. developed a Japanese-language version of this instrument. 20 This study used an abbreviated Japanese-language version, the PS-SF.21 A lower score indicates lower parenting stress.

Family Assessment Inventory (FAI)22

The FAI was developed with the goal of understanding the functional status of family systems, and consists of subscales of “Family Communication,” “Family System Flexibility,” “Family Rules,” “Family Evaluation,” and “Family Cohesion.” A lower score indicates lower family functionality.

Validity

Factor analyses were performed using principal axis factoring with a Promax rotation. The missing values were replaced with a mean. Based on the factor structure of the original CADIS, separate factor analyses of items related to children and items related to parents were performed. The number of factors was decided based on use of factors with a cumulative contribution ratio of at least 50%.23 If one factor consisted of only a single item, the number of factors would be decreased and factor analysis would then be performed again. The minimum loading for an item to be retained was set at 0.32.24

Concurrent validity tests were performed by testing the correlation of each factor in the JCMV-CADIS with the DFI and SCORAD. Correlation was verified with Spearmans correlation coefficient.

Discriminant validity tests were performed with the PS-SF, which has a structure that divides factors into child and parent dimensions like the CADIS, and the FAI, which measures family function.

Reliability

Cronbachs alpha was calculated for each factor in order to verify internal consistency. Test-retest reliability was performed to verify stability. Participants (10% of the target group) were requested to complete the retest 48 h after the initial survey.

Results

Demographic characteristics

Surveys were sent to 621 families of children with AD. Of these, 270 were returned, and data from 233 were analyzed in this study (37.5% of distributed surveys, 86.3% of returned surveys). Children not meeting age criteria were excluded from analysis, and surveys with >10% missing values of CADIS were excluded. Details of participant demographics are shown in Table 1.

Table 1. Characteristics of children and caregivers (N = 233).
Children N (%)
Mean ±SD
Mean age 3.79 ±1.38
Age
2 53 22.7
3 55 23.6
4 48 20.6
5 41 17.6
6 36 15.5
Sex
Male 137 58.8
Female 96 41.2
Children in family
1 73 31.3
2 124 53.2
3 33 14.2
4 1 .4
5 2 .9
Birth order
1 144 61.8
2 74 31.8
3 12 5.2
4 1 .4
5 2 .9
Severity
Total SCORAD 20.27 ±16.53
Mild (<25) 135 57.9
Moderate 65 27.9
Severe (>50) 12 5.2
Allergy-related complications
Yes 168 72.1
No 64 27.5
Asthma 65 38.7
Food allergy 132 78.6
Allergic rhinitis 24 14.3
Allergic conjunctivitis 2 1.2
Other 1 .6
Caregivers N (%)
Mean ±SD
Mean age of father 38.44 ±5.19
Occupation of father
Full-time job 207 88.8
Part-time job 1 .4
Self-employed 18 7.7
Temporarily unemployed 1 .4
Mean age of mother 36.16 ±4.04
Occupation of mother
Full-time job 45 19.3
Part-time job 39 16.7
Self-employed 14 6.0
Working at home 2 .9
Unemployed 117 50.2
Temporarily unemployed 14 6.0
Primary caregiver during the day
Mother 113 48.5
Nursery school 117 50.2
Other 3 1.3
Marital status
Single 5 2.1
Married/Living with partner 221 94.8
Separated 7 3.0
Family history of atopic dermatitis
Yes 200 85.8
No 32 13.7
Satisfaction with treatment
Satisfied 203 87.1
Not satisfied 20 8.6

†. Percentages do not always add up to 100 because of missing values.

Creation of the Japanese Culturally Modified Version of the CADIS (JCMV-CADIS)

First, we created a Japanese-language version of the CADIS.

Next, we conducted interviews with primary caregivers of Japanese children with AD and 8 new items were added to the scale, for reasons described in the text.

  • This skin condition has made me more careful about my childs diet.
  • This skin condition has made me more careful about my childs environment.
  • I feel that I have adapted to the everyday life of caring for a child with atopic dermatitis.
  • I feel that our whole family is helping with the care of my childs atopic dermatitis.
  • I can deal with the prospect of long-term care for my child.
  • I can accept that I cannot manage the situation perfectly.
  • Child himself/herself takes the behavior avoiding symptom aggravation of the AD.
  • This skin conditions worsens relationships with siblings.

After this, we conducted a quantitative study with a questionnaire which contains the 45 original items and the 8 new items from the interviews.

As a result of this, the item “This skin condition worsens relationships with siblings” was excluded from this study because 15 participants did not answer this item. Analysis was thus based on seven new items (one item added to a Child domain, six items added to the Parent domain).

Factor structure of the Japanese Culturally Modified Version of the CADIS (JCMV-CADIS)

Exploratory factor analysis (EFA) was performed by analyzing the 16 items in the Child domain, plus one added based on interviews with Japanese parents, and the 29 items in the Parent domain, plus six new items, separately, as performed in the original version of the CADIS. Of note, EFA results produced a different factor structure than the original CADIS.

Analyses of the JCMV-CADIS revealed a KMO of .894 (P < 0.01) and it indicated that the data set characteristics were adequate for performing factor analysis.

Final version of JCMV-CADIS is shown in Supplementary data.

Child domain

Factor analysis of the Child domain identified three factors with a cumulative contribution ratio of 52.4%. One of these factors included only a single item, so the number of factors was reduced to two and the analysis was repeated. The first factor included nine items, including six from the “Symptoms” of the original version, but three items were inconsistent with the original. After comprehensive consideration of these items, the decision was made to retain the designation “Symptoms” for this factor. The second factor included three items, including two from the “Activity Limitations and Behavior” of the original version, but one item was inconsistent. After comprehensive consideration of the items, the decision was made to retain the designation “Activity Limitations and Behavior” for this factor.

Items with a low commonality and a low factor loading (five items) were discarded. As a result, 12 items were included in the Child domain. Details are shown in Table 2.

Table 2. Exploratory factor analysis of the JCMV-CADIS (child domain).
Items Factors in original version Factors and loading Cronbachs α
Symptoms Activity Limitations and Behavior
9. My child scratches or rubs his/her skin. Symptoms .854 −.192 .884
1. This skin condition affects how well my child sleeps. Symptoms .814 −.147
10. This skin condition makes my child feel frustrated. Symptoms .755 .093
6. This skin condition makes my child fussy or irritable. Symptoms .753 .086
14. My childs skin seems to be painful or irritated. Symptoms .692 .031
12. My child seems to cry more because of this skin condition. Symptoms .659 .094
22. My childs itching or scratching affects his/her play. Activity Limitations and Behavior .439 .343
21. Taking a bath makes my child uncomfortable. Activity Limitations and Behavior .376 .222
27. Certain fabrics or clothes seem to bother my childs skin. Activity Limitations and Behavior .350 .233
29. It is difficult to discipline my child because of this skin condition. Activity Limitations and Behavior −.123 .855 .729
34. My child misbehaves more because of this skin condition. Activity Limitations and Behavior −.069 .742
17. My child seems to be restless or hyperactive because of this skin condition. Symptoms .172 .527

Principal axis factoring.

Promax with Kaiser Normalization.

Rotation converged in 3 iterations.

Parent domain

Factor analysis of the Parent domain identified five factors with a cumulative contribution ratio of 52.1%.

The first factor included six items, all from the original versions “Emotion” domain. After consideration, the designation “Emotions Related to Social Factors” was given to this factor. The second factor included eight items, including six from the “Emotion” of the original version; the other two were from the “Sleep.” After comprehensive consideration of the items, the factor was designated “Emotions Related to the Childs Condition.”

The third factor included five items, all from the “Family and Social Function” of the original version. The same designation was therefore retained.

The fourth factor included six items, three from the original versions “Emotion” and three from its “Family and Social Function.” After consideration of the items included, the factor was designated “Complexity of Care.”

The fifth factor consisted of six items, all new items based on the interviews with Japanese caregivers. These items concern issues such as using measures to prevent symptoms worsening, working together with the whole family for long-term management, and accepting that the provided care is not “perfect treatment,” but rather “good enough treatment.” For these reasons, the designation “Approaches to Management of AD in Daily Life” was given to this factor.

Items with low commonality and low factor loading (four items) were discarded. The Parent domain thus included 25 items from the original version and six additional items, for a total of 31 items. Details are shown in Table 3.

Table 3. Exploratory factor analysis of the JCMV-CADIS (Parent domain).
Items Factors in the original version Factors and loading Cronbachs α
Emotions Related to Social Factors Emotions Related to the Childs Condition Family and Social Function Complexity of Care Approaches to Management of AD in Daily Life
44. I am embarrassed by the way my childs skin looks. Emotion .797 −.157 .014 .122 −.058 .839
25. I am bothered by the reaction of strangers to this skin condition. Emotion .677 −.104 .151 .042 .099
33. I worry that this skin condition will affect my childs ability to make friends. Emotion .639 .206 .005 −.132 −.048
38. I worry that this skin condition will affect my childs self-esteem. Emotion .601 .223 .016 −.008 −.055
39. My childs skin condition makes me feel sad or depressed. Emotion .498 .190 .133 .100 .042
16. I/we avoid taking photos of my child because of this skin condition. Emotion .443 .002 .236 −.064 −.087
32. I worry about the side effects from treatments for this skin condition. Emotion .021 .796 −.044 −.066 −.010 .818
13. I worry that my childs skin condition will continue. Emotion .027 .655 −.121 .196 −.089
31. My child sleeps in my bed because of this skin condition. Sleep .016 .518 .182 −.037 .002
35. This skin condition has affected how confident I feel about my childs medical care. Emotion −.006 .511 .121 .030 −.102
3. My childs skin condition affects how well my spouse and I sleep. Sleep −.373 .477 .352 .150 .045
26. I am disappointed that my child has this skin condition. Emotion .253 .443 −.286 .298 .014
28. I worry that my child is exposed to things that may worsen this skin condition. Emotion .300 .419 .148 −.198 .116
42. I blame myself or feel guilty that my child has this skin condition. Emotion .314 .389 −.178 .048 .165
4. I am bothered that this skin condition affects our vacation plans. Family and Social Function −.045 .089 .814 −.083 −.018 .792
7. I am bothered that my family stays home more because of this skin condition. Family and Social Function .080 −.144 .696 .176 .007
8. I am bothered that this skin condition affects our relationships with relatives. Family and Social Function .260 −.069 .581 −.064 .015
5. This skin condition affects our social life. Family and Social Function .105 −.012 .537 .146 −.028
11. I worry about leaving my child with others (babysitters, relatives) because of this skin condition. Family and Social Function .185 .172 .478 −.029 .031
18. I am bothered by how much time is needed to care for my childs skin condition. Emotion −.184 .083 .032 .783 .069 .826
37. I am angry that my child has this skin condition. Emotion .128 .051 −.081 .621 −.040
15. I am frustrated with my childs skin condition. Emotion .090 .166 .064 .575 −.069
45. My childs skin condition makes it hard to do what I enjoy. Family and Social Function .178 −.130 .236 .551 −.006
20. My childs skin condition affects my spouses or my work performance due to missed time and decreased productivity. Family and Social Function .022 .051 .118 .471 .047
30. My childs skin condition has strained my relationship with my spouse or partner. Family and Social Function .370 −.133 −.031 .420 −.001
48. I feel that I have adapted to the everyday life of caring for a child with atopic dermatitis. .066 .008 −.036 −.059 .739 .734
50. I can deal with the prospect of long-term care for my child. .074 −.207 −.075 .040 .718
49. I feel that our whole family is helping with the care of my childs atopic dermatitis. −.011 .066 .004 −.036 .576
51. I can accept that I cannot manage the situation perfectly. −.170 −.168 −.003 .037 .503
47. This skin condition has made me more careful about my childs environment. .017 .220 .057 .022 .488
46. This skin condition has made me more careful about my childs diet. −.143 .110 .141 .100 .399

Principal axis factoring.

Promax with Kaiser Normalization.

Rotation converged in 7 iterations.

†. Additional items in Japanese version.

Reliability

Internal reliability

Cronbachs alpha for internal reliability in the Child domain was .729–.884. In the Parent domain, Cronbachs alpha was .734–.839. The high alpha values for all factors indicate good internal reliability.

Test-retest reliability

Nineteen participants completed the surveys twice at a 48 h interval. Spearmans rho was .925 for “Symptoms,” .899 for “Activity Limitations and Behavior,” .867 for “Emotions Related to Social Factors,” .847 for “Emotions Related to the Childs Condition,” .922 for “Family and Social Function,” .917 for “Complexity of Care,” and .880 for “Approaches to Management of AD in Daily Life” (P < 0.01 in all instances).

Validity

Concurrent validity

A correlation was measured using the Japanese version of DFI scale and the JCMV-CADIS with the following correlations shown: “Symptoms” (.563), “Activity Limitations and Behavior” (.499), “Emotions Related to Social Factors” (.448), “Emotions Related to the Childs Condition” (.546), “Family and Social Function” (.519), and “Complexity of Care” (.616) (P < 0.01 for each). “Approaches to Management of AD in Daily Life” was not shown to be correlated with the DFI.

Total SCORAD score when correlated with the JCMV-CADIS revealed correlations with “Symptoms” (.430), “Activity Limitations and Behavior” (.232), “Emotions Related to Social Factors” (.210), and “Emotions Related to the Childs Condition” (.239) (P < 0.01 for each). Total SCORAD score did not correlate with “Complexity of Care” or “Approaches to Management of AD in Daily Life.” Only “Symptoms” showed a moderate correlation with Total SCORAD, with the rest showing low correlation. Details are shown in Table 4.

Table 4. Concurrent validity and discriminant validity of the JCMV-CADIS.
Confirmation of concurrent validity Confirmation of discriminant validity
DFI Objective SCORAD Subjective SCORAD Total SCORAD PS-SF child domain PS-SF Parent domain PS-SF total score FAI family communication FAI family system flexibility FAI family rules FAI family evaluation FAI family cohesion
Child domain Symptoms Coefficient of correlation .563† .347† .652† .430† .265† .151‡ .258† −.098 −.100 .012 −.031 −.073
P Value .000 .000 .000 .000 .000 .025 .000 .150 .138 .864 .653 .282
Activity Limitations and Behavior Coefficient of correlation .499† .150‡ .350† .232† .461† .261† .410† −.165‡ −.202† −.013 −.124 −.170‡
P Value .000 .024 .000 .001 .000 .000 .000 .013 .002 .851 .064 .010
Parent domain Emotions Related to Social Factors Coefficient of correlation .448† .187† .253† .210† .377† .243† .362† −.093 −.117 .011 −.029 −.048
P Value .000 .005 .000 .002 .000 .000 .000 .168 .078 .866 .662 .472
Emotions Related to the Childs Condition Coefficient of correlation .546† .190† .394† .239† .277† .155‡ .258† −.075 −.079 −.002 −.051 −.089
P Value .000 .005 .000 .001 .000 .022 .000 .271 .244 .974 .456 .189
Family and Social Function Coefficient of correlation .519† .082 .325† .141‡ .261† .191† .272† −.146‡ −.145‡ .049 −.057 −.092
P Value .000 .231 .000 .045 .000 .005 .000 .034 .034 .477 .408 .179
Complexity of Care Coefficient of correlation .616† .067 .299† .113 .342† .274† .368† −.103 −.218† −.114 −.096 −.189†
P Value .000 .322 .000 .102 .000 .000 .000 .125 .001 .089 .150 .004
Approaches to Management of AD in Daily Life Coefficient of correlation .042 −.058 .021 −.041 .000 −.123 −.077 .216† .126 .069 .210† .196†
P Value .530 .400 .763 .557 1.000 .071 .262 .001 .063 .312 .002 .004

†. Correlation is significant at the .01 level (2-tailed).

‡. Correlation is significant at the .05 level (2-tailed).

Discriminant validity

PS-SF total score when correlated with the JCMV-CADIS revealed correlations with “Symptoms” (.258), “Activity Limitations and Behavior” (.410), “Emotions Related to Social Factors” (.362), “Emotions Related to the Childs Condition” (.258), “Family and Social Function” (.272), and “Complexity of Care” (.368). “Approaches to Management of AD in Daily Life” correlated significantly with the FAI subdomain and “Family Communication” (.216), “Family Evaluation” (.210), and “Family Cohesion” (.196) (P < 0.01 for each). Details are shown in Table 4.

Discussion

About concurrent validity of the JCMV-CADIS, it was shown with all factors except “Approaches to Management of AD in Daily Life.” “Approaches to Management of AD in Daily Life” consists solely of items specific to the new Japanese version of the CADIS, so one can reasonably assume that this represents concepts not measured on the existing scale. While there is as yet no scale available to measure the concurrent validity of this factor, a previous study found that characteristics of AD and parenting stress are related to “difficulties of daily care”.25 and 26 The “Approaches to Management of AD in Daily Life” factor captures this concept and is certainly an important family-related factor fitting with the general theme of the JCMV-CADIS.

About discriminant validity, “Approaches to Management of AD in Daily Life” was not found to correlate significantly with the PS-SF, but it was found to correlate with three subdomains of FAI. The added items in “Approaches to Management of AD in Daily Life” measure qualities not found in the original scale, and their general concept is similar to the FAI; namely, a measure of family function.

Factor analysis of the JCMV-CADIS revealed a larger number of factors than in the original version. However, this tool is not intended to be applied as a simple clinical screening instrument, but rather as an instrument for detailed measurement for specialty clinics or clinical trials. As a result, a larger number of factors are appropriate.

As in the original version of the scale, the Child domain in the JCMV-CADIS consists of two factors. A few items were changed, but the Child domain shares the same general factor structure as the original.

“Emotion” was a single factor in the original version, but had to be divided into two factors in the JCMV-CADIS. The first such factor, “Emotions Related to Social Factors,” is strongly influenced by Japanese culture. Benedict pointed out that American culture is primarily a “culture of guilt,” while Japanese culture is more a “culture of shame,” in which individuals place a great deal of importance on how they are seen by others, rather than on how they see themselves.27 Japanese parents are thus very sensitive to the appearance of their children and how others might react to it, and the items related to outward appearance exhibit this particular aspect of Japanese culture very strongly. The second factor, “Emotions Related to the Childs Condition,” is quite similar to the more traditional concept of the “Emotion” on the original version.

“Complexity of Care” does not appear in the original version of the scale. Since 97.4% of respondents in this study were mothers of children with AD, this factor represents the fact that the primary burden of care for children with AD in Japan falls on the shoulders of their mothers. Regarding the Global Gender Gap Report28 and the Organisation for Economic Co-operation and Development report29 on “Balancing paid work, unpaid work and leisure,” Japanese men tend to immerse themselves in work rather than domestic duties, so Japanese women carry the brunt of household work. In Japanese families, where household work is seen as primarily the job of the mother, one can assume that mothers bear the primary burden for both housework and the care of children with AD. One can easily imagine that the complexity of care is felt most keenly by mothers carrying this dual responsibility.

“Approaches to Management of AD in Daily Life” concerns managing family expectations, outlooks, and preventive measures. “Daily Life” concerns issues faced by any family, such as diet and environment, but daily life for children with AD involves continuous, long-term attention to many specific issues in order to ensure that symptoms are not exacerbated. Japan differs from Western countries in a number of ways in this regard. Examples include differences in diet, the use of futons rather than beds, and the practice of removing shoes when entering the home. In addition, Triandis stated that Japans collectivist culture often leads to stronger parent-child bonds, but weaker spouse–spouse bonds, than in individualistic nations.30 Japanese mothers might thus be willing to make more sacrifices for the sake of their children. Contrasting with this perspective, the factor “Approaches to Management of AD in Daily Life” includes a number of items related to caring for the whole family with an eye toward the long-term and accepting care that accommodates the family as a whole, rather than care that is “perfect.” This factors focus on the functioning of the family as a whole can help families move forward with actions that reduce the burden of care and overcome difficulties in daily life by keeping communication open and strengthening family bonds. For all of these reasons, this new factor is needed to address the particular characteristics of the Japanese family structure and the roles within it.

Limitations of this study

Retest surveys were completed after 48 h. This represented only a short period between testing and retesting and may have led to recall bias. However, use of this interval was deemed appropriate, since AD in children generally responds well to treatment within only a few days.

The clinical applicability is yet to be tested, and further evaluation of clinical applicability is needed.

Acknowledgments

We offer our sincere thanks to all of the families who cooperated with this study while caring for a child with AD. We are also grateful to the physicians and nurses who cooperated extensively with this study.

This work was supported by a Grant-in-Aid for Scientific Research (Grant No.: 21792282).

Appendix A. Supporting information

The following is the supporting information related to this article:


Draft Content 110487798-mmc pdf.gif

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