Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome.

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Journal of Intellectual Disability Research 962

doi: 10.1111/jir.12126

volume 58 part 10 pp 962–977 october 2014

Maternal perceptions of sibling adaptation in Korean families of children with Down syndrome H. Choi1 & M. Van Riper2 1 College of Nursing, Kyungpook National University, Daegu, South Korea 2 School of Nursing/Carolina Center for Genomic Sciences, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

Abstract Background It is estimated that more than 500 infants with Down syndrome (DS) are born each year in Korea. DS affects not only these individuals, but family members as well. Some siblings deal successfully with the challenges of living with a child with DS and adapt well while others struggle or fail to adapt. The aims of this descriptive study were to explore how Korean mothers of children with DS perceive the adaptation of their typically developing (TD) children aged 4 to 19 and how family variables contribute to sibling adaptation. Method This descriptive, cross-sectional study was conducted with 105 Korean mothers. Results Most mothers indicated that their TD children were not experiencing psychological or behavioural problems; however, many described problems in the sibling relationship. It was found that family factors (i.e. condition management effort, condition management ability, child’s daily life, parental mutuality, family hardiness and social support) were strong predictors of sibling psychological, behavioural and relational adaptation. Demographic characteristics of the child with DS, the mother and the Correspondence: Dr Hyunkyung Choi, College of Nursing, Kyungpook National University, 700-422, 680 Gukchabosangro, Jung-gu, Daegu, South Korea (e-mail: [email protected]).

family appeared to significantly influence sibling adaptation. Conclusions These findings highlight the importance of familial contexts in understanding sibling adaptation. Knowledge of family factors associated with better adaptation in Korean siblings of child with DS will facilitate the development of culturally appropriate interventions for these children and their families. In addition, an awareness of demographic characteristics associated with sibling adaptation will help health care professionals identify siblings who are at increased risk of experiencing difficulties in adapting. Keywords adaptation, Down syndrome, family, Korean, siblings During the past two decades there has been growing interest in the sibling experience of living with a child with an intellectual disability (ID). Moreover, many of the existing studies have been conducted with siblings of children with Down syndrome (DS), the most common genetic cause of ID (National Down Syndrome Society 2013). However, our understanding of this sibling experience remains incomplete because most of the participants in the existing studies were Caucasian individuals from either North America or Europe (Rossiter & Sharpe 2001; Stoneman 2001, 2005; Skotko et al. 2011a;

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

Journal of Intellectual Disability Research

volume 58 part 10 october 2014

963 H. Choi & M. Van Riper • Adaptation in siblings of children with Down syndrome

Nielsen et al. 2012; Choi & Van Riper 2013). Given that DS occurs in all races and ethnicities (National Down Syndrome Society 2013) and that societal values and cultural beliefs are likely to play a critical role in how one responds to the sibling experience of living with DS, there is an urgent need for research that includes non-Caucasian participants from countries outside of North America and Europe. Therefore, the aims of this descriptive study were to explore how Korean mothers of children with DS perceive the adaptation of their typically developing (TD) children aged 4 to 19 and how family variables contribute to sibling adaptation.

Background Reviews of research on siblings of children with DS and other disabilities (Rossiter & Sharpe 2001; Stoneman 2001, 2005; Choi & Van Riper 2013) suggest that sibling adaptation is influenced by a complex variety of factors including competencies and behavioural problems of the child with disabilities, household and caregiving responsibilities given to the TD sibling, differential parental attention (perceived favouritism of one sibling over the other), parental psychological well-being, the nature of subsystem relationships within the family, and family variables such as family demands and family resources. Despite growing recognition that family context plays a critical role in sibling adaptation in families of children with disabilities (Giallo & Gavidia-Payne 2006), only a few researchers have examined how family factors influence sibling adaptation in families of children with DS. According to Jeevanandam (2009), Korea has adequate services (e.g. early intervention, special schools, integrated education, vocational centres, etc.) available for individuals with ID including DS. However, in a cross-cultural study conducted with mothers of children with ID (Shin 2002), less social support (informal and professional) was available in Korea than it was in the USA. The Korean mothers reported higher stress and less social support than did their counterparts in the USA (Shin 2002). Lack of adequate support may be related to negative societal attitudes and stigmatisation towards individuals with DS and other ID in Korea (Cho et al. 2000).

Although the impact of traditional Confucian values may have been weakened by growing acceptance of Western values (Kim & Hoppe-Graff 2001), Confucianism continues to be the central philosophic background for much of the culture in Korea and other parts of East Asia (Park & Chesla 2007). Because of this, Confucian values are likely to play a critical role in shaping family structures and processes in Korea. Current estimates suggest that about 0.42% of Koreans who profess religious affiliation follow Confucian values (Statistics Korea 2005). In Confucianism, the family is the fundamental unit of the society and family harmony is greatly valued. In order to maintain the ideal family, family members are strongly encouraged to follow strict role divisions (Kim & Hoppe-Graff 2001; Park & Chesla 2007). For example, younger siblings are expected to respect and follow their older siblings, and older siblings are expected to act as a good ‘role model’ for younger siblings. In addition, it is often assumed that the oldest sibling will assume a parental role with younger siblings (Park & Chesla 2007). These commonly accepted family role divisions are difficult to follow in families of children with ID (e.g. DS), especially if the oldest child has ID (e.g. DS; Stoneman et al. 1991). TD siblings may be expected to overachieve in academics and demonstrate exceptionally good behaviour so they can serve as a strong role model for the child with DS and other siblings, as well as compensate for the decreased competencies and behaviour problems of the child with DS. This may ultimately result in the TD siblings being confused and overwhelmed with family role expectations (Park 2005). However, silence and humility are encouraged in families who follow Confucian values (Kim-Rupnow 2005), so TD siblings may be reluctant to openly challenge these new role expectations (Hwang & Charnley 2010). This may eventually lead to an increase in psychological and behavioural problems, as well as an increase in sibling conflict. Existing research on siblings of children with DS and other disabilities suggests that some siblings adapt and become stronger, whereas others remain vulnerable and some deteriorate (Rossiter & Sharpe 2001; Stoneman 2001; Orsmond & Seltzer 2009; Choi & Van Riper 2013). A theoretical framework that can help explain reported differences in how




H. Choi & M. Van Riper • Adaptation in siblings of children with Down syndrome

siblings adapt is the Resiliency Model of Stress, Adjustment and Adaptation (hereafter the Resiliency Model) (McCubbin et al. 1996). According to this framework, two children that appear to be undergoing similar experiences (e.g. growing up with a sibling with DS) may respond very differently depending on family factors such as family demands, family type, family appraisal, family resources and family problem-solving communication. The Resiliency Model was previously used as the guiding framework for a study of sibling adaptation in families of children with DS in the USA (Van Riper 2000) and the findings revealed that all three family factors assessed (i.e. family demands, family resources and family problem-solving communication) were significantly associated with one or more indicators of sibling well-being. There is growing evidence that the Resiliency Model is applicable to families from a wide variety of cultural and ethnic backgrounds (Rungreangkulkij et al. 2002; White et al. 2002; Chui & Chan 2007; Hsiao & Van Riper 2011). Moreover, there is evidence that the importance or salience of family factors may vary depending the family’s cultural and ethnic background (e.g. Taiwanese families by Gau et al. 2008 and Hsiao & Van Riper 2011; Thai families by Rungreangkulkij et al. 2002). For example, in a cross-cultural study conducted with mothers of children with ID in Korea and the USA, family demands (i.e. maladaptive behaviours of child with an ID) was not a significant contributor, while family resources (i.e. social support) and family appraisal (i.e. attitudes towards child with an ID) were significant contributors in explaining maternal adaptation in Korean families; however, for American mothers all of these family factors were significant predictors in explaining their adaptation (Shin & Crittenden 2003). This study is one of the first studies of Korean families of children with DS to focus specifically on sibling adaptation. Findings from this study will add to the limited knowledge base that currently exists about sibling adaptation in families of children with DS living in places other than North America and Europe. In addition, the findings will contribute to the growing recognition that attitudes towards and support for individuals with disabilities and their families may vary greatly from one county to the next.

Methods Participants The target population was Korean mothers of TD children aged 4 to 19 years who were living with a brother or sister with DS in Korea. To participate in the study, mothers were (1) the primary caregiver for both a child with DS and at least one TD child aged 4 to 19 years old; (2) at least 19 years of age; (3) able to understand and speak Korean; and (4) willing to complete the self-report questionnaires. Mothers whose TD children were not living together in the same family were excluded. For this study, if a mother had more than one TD child who did not have any chronic illness or disability, the mother was asked to complete the questionnaires for the child who was closest in age to the child who had DS. The reason for this decision is that the sibling closest in age is the sibling who is likely to spend the most time with the child with DS (e.g. Fisman et al. 1996, 2000; Gau et al. 2008). Also, if the TD sibling closest in age is younger than the child with DS, the potential for the TD sibling to have some role confusion may be greater. The mean age of participating mothers was 42.93 years ranging from 28 to 55 years. The majority of them were partnered. In response to the question, ‘what is your current family income?’, over 80% of mothers rated their current family income as middle and middle-low. The majority of them had two children in the family. There were no differences between mothers who completed an online version and mothers who completed a hard copy of the packet of self-report questionnaires in light of demographic characteristics. The ages of children with DS ranged from 1 to 21 years; the mean age of children with DS was 12.88 years. About half of the children with DS were first born. In Korea, individuals with ID are diagnosed using criteria in the Diagnostic and Statistical Manual of Mental Disorder-Fourth Edition and they are often classified into the following three categories based on their IQ and their level of adaptive behaviour: first degree (mild ID referring to an IQ of 50 to approximately 70), second degree (moderate ID referring to an IQ ranging from 35 to 49) and third degree (severe ID referring to an IQ at or below 34; Ministry of Health and Welfare 2013) along with delayed adaptive behavioural skills in





functioning at the level of expected for their age. In this study, 41 children with DS were assessed to have a mild ID (a first degree); 40 had a moderate ID (a second degree). The mean age of the TD children was 12.39 years ranging from 4 to 19 years; 50 (52.38%) were male and 55 (47.62%) were female. About one-third of the TD children were first-born whereas more than 60% of them were second-born (Table 1).

Data collection procedure A cross-sectional, correlational study was performed to explore how Korean mothers of children with DS living in Korea perceive the adaptation of their TD children aged 4 to 19 years to a child with DS and family factors that influence sibling adaptation in families of children with DS. After Institutional Review Board approval was obtained from the University of North Carolina at Chapel Hill, mothers were recruited through the Korea Down Welfare Center, local and online DS parents’ support groups, and 10 special schools in two metropolitan areas in Korea. Leaders and administrators in these places were given information about the study to share with eligible mothers. Mothers who expressed interest in hearing more about the study were contacted by the Principal Investigator. Eligible mothers were provided two options for participating in the study: completing an online version or a hard copy of the packet of selfreport questionnaires. Mothers who did not complete the online survey or return a completed hard copy of the survey received either a reminder email or a phone-call 2 to 3 weeks after the surveys were distributed.

Measurements Measures used in this study have been widely used in prior research concerning sibling adaptation in families of children with ID. Translation and cultural adaptation was done for three measures (Sibling Need and Involvement Profile, Family Index of Regenerativity and Adaptation – General, and Family Management Measure) using guidelines presented by Guillemin et al. (1993). The following steps were taken: (1) bilingual translator who was aware of the concepts of the instrument and whose

first language was Korean (first author) translated the original English versions into Korean (translation); (2) the Korean versions were back-translated into English by other bilingual translators who were blind to the original measures and whose first language was English (back-translation); (3) these two English versions were reviewed by two experts – the first expert developed one of the measures and the other expert has previously used the original measures in a variety of studies. Comparisons and modifications were continued through repeated translation and back-translation processes until all committee members agreed (committee review); and (4) two pilot tests were conducted in December 2010 and in March, 2011 (pre-testing). After thorough reviews in the two pilot tests with Korean mothers of children with DS, the wording of certain items was modified [i.e. the word ‘condition’ in Family Management Measure (FaMM) was specified; the word ‘clinic’ in FaMM was revised to hospital]. Finally, the relevancy of these instruments to the Korean culture was examined by three evaluators (Koreans who were familiar with lives in both countries). All of the items used in this study were considered relevant to the Korean culture. Sibling Need and Involvement Profile (SNIP) Maternal perceptions of the relationship between their child with DS and their TD child were assessed using the SNIP (Fish et al. 1995), a 28-item self-report measure designed to assess five areas of the sibling relationship (awareness, feelings, having fun, helping and advocacy). This measure has been used to help parents of children with disabilities (including DS and other ID) understand the strengths and concerns of their TD children (Fish et al. 1995; Buys 2003). Lower scores on the SNIP sub-scales reflect areas of strength, while higher scores reflect areas of concern. For this sample, the Cronbach’s alpha coefficients for the five sub-scales were satisfactory, ranging from 0.61 to 0.85. Strengths and Difficulties Questionnaire (SDQ) The Korean version of the SDQ (SDQ-Kr) was used to assess five dimensions of behavioural and psychological functioning: emotional symptoms, conduct problems, hyperactivity, peer relationships





Characteristics

Age of mother Marital status (N = 104) Married Partnered/living together Divorced Religion (N = 102) Protestant Catholic Buddhism None Highest level of education (N = 103) Graduate Undergraduate High school Middle school Elementary school Employed (N = 104) Yes No Current family income (N = 103) High Middle-high Middle Middle-low Low Number of children in family (N = 104) Two Three Four Age of child with DS Gender Male Female Position in family First Second Third Diagnosis of disability: severity of ID ID – first degree ID – second degree ID – third degree Did not receive Child’s diagnosis of DS Before child was born After child was born Age of sibling Gender Male Female Position in family First Second Third Fourth Position in relation to child with DS Older Twin Younger

n

%

99 2 3

95.19 1.92 2.88

30 12 27 32

29.41 11.76 26.47 31.37

2 39 58 3 1

1.94 37.86 56.31 2.91 0.97

33 71

31.73 68.27

2 8 57 26 10

1.94 7.77 55.34 25.24 9.71

76 24 4

73.08 23.08 3.85

58 47

55.24 44.76

53 39 13

50.48 37.14 12.38

41 40 22 2

39.05 38.10 20.95 1.90

3 102

2.86 97.14

50 55

52.38 47.62

33 64 6 2

31.43 60.95 5.71 1.90

42 4 59

40.00 3.81 56.19

M (SD)

Min–Max

42.93 (4.57)

28–55 (year)

12.88 (4.12)

1–21 (year)

12.39 (4.28)

4–19

Table 1 Characteristics of mothers, children with Down syndrome (DS), typically developing children and the family

In Korea, intellectual disabilities (ID) are often classified into the following three categories: first degree (mild ID referring to an IQ of 50 to approximately 70), second degree (moderate ID referring to an IQ ranging from 35 to 49) and third degree (severe ID referring to an IQ at or below 34; Ministry of Health and Welfare 2013).





and prosocial behaviours (Goodman 1997). This 25-item measure was previously found to have satisfactory internal consistency reliability (0.61–0.80), test–retest reliability (0.88–0.94) and discriminant validity (Ahn et al. 2003). To obtain a prosocial behaviours score, all of the items on the prosocial sub-scale are summed. A total difficulties score is calculated by summing the items on the other four sub-scales. Satisfactory Cronbach’s alpha coefficients were obtained for the prosocial behaviour sub-scale and the other sub-scales combined but not for three of the individual sub-scales (i.e. emotional symptoms, conduct problems and peer relationships).Therefore for further analyses, only prosocial behaviours (Cronbach’s alpha: 0.75) and total difficulties (Cronbach’s alpha: 0.70) scores were used. Family Index of Regenerativity and Adaptation – General (FIRA-G) This 74-item self-report measure was developed to test the major dimensions and components of the Resiliency Model in one set of measures consisting of the most reliable and valid items drawn from the primary measures (McCubbin et al. 1996). Included in this set of measures are a measure that assesses family demands (the Family Strains Index), three measures to assess family resources (the Relative and Friend Support Index, the Social Support Index and the Family Hardiness Index), and one measure to assess family problem-solving and coping (the Family Coping-Coherence). All of the sub-scales had acceptable Cronbach’s alpha coefficients (ranging from 0.82 to 0.88), except the family coping-coherence sub-scale. Therefore, values from this sub-scale were not used for any of the later analyses. Family Management Measure (FaMM) This 53-item, five-point Likert scale was developed to measure parental perceptions of family management for a child with a chronic condition/illness (Knafl et al. 2009). The FaMM has five sub-scales for all parents (Child’s Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty and View of Condition Impact) and one sub-scale for partnered parents (Parental Mutuality), which is answered only by

mothers who have adult partners in their households. For the Child’s Daily Life scale, higher values indicate a more normal life for the child despite the condition. Higher values on the Condition Management Ability scale mean the condition is viewed as more readily manageable. Higher values on the Condition Management Effort scale mean more effort is expected in managing the condition. Higher values on the Family Life Difficulty scale indicate more difficulty managing the condition. For the View of Condition Impact scale, higher scores indicate greater concern in managing the condition. Finally, higher values on the Parental Mutuality scale indicate more shared responsibility and greater satisfaction with how the couple works together to manage the condition (Knafl et al. 2009). The FaMM showed satisfactory Cronbach’s alpha coefficients for 5 sub-scales ranging from 0.63 to 0.90. The View of Condition Impact sub-scale was not used for further analyses because of its unacceptable Cronbach’s alpha coefficient for this sample. Family Problem Solving Communication Index (FPSC) This 10-item, four-point Likert scale measure was developed to assess the pattern of family communication style in managing family tension and strain (McCubbin et al. 1996). The internal consistency reliability of the FPSC for this sample (0.85) was acceptable.

Data analysis A sample of 105 Korean mothers recruited for the study detects a medium effect size (R2) of 0.15 (Cohen 1988) with a statistical power of 0.80 at 0.05 alpha level with four to six predictors. All analyses were performed with SAS version 9.2 for Windows (SAS Institute Inc., Cary, NC, USA). Descriptive statistics were calculated. Then maternal perceptions of sibling adaptation were described. Model assumptions in regression and multicollinearity were evaluated. In an effort to find important family predictor variables, bivariate correlations between each sibling adaptation variable and each family predictor variable based on the Resiliency Model were executed. Variables showing





significant correlations with sibling adaptation outcome variables at alpha level 0.05 were included in subsequent composite regression models. In addition, sibling adaptation outcome variables were analysed within the separate dimensions of the Resiliency Model. In order to find the best model of all dimensions from the Resiliency Model for each sibling adaptation outcome variable, the variable selection procedures using forward selection, stepwise selection and backward elimination were conducted with significant variables found from bivariate correlations, which included all variables from analyses within all dimensions. With the final model of family predictor variables in relation to each sibling adaptation outcome variable, each demographic variable was evaluated in terms of its significance in the model based on a P-value at the 0.05 level. First, by adding each demographic variable into the model of each sibling adaptation outcome variable conditioned on significant family predictor variables found from the prior analysis steps, the change in R2 was examined. If needed, some continuous demographic variables (e.g. age) were grouped categorically based on its frequency. Second, these significant demographic variables were examined in combination using the three variable selection procedures while holding significant family predictor variables fixed in the model. The final best predicting model was evaluated with residual analysis with regard to the assumptions in regression.

Results Maternal perceptions of sibling adaptation The mean scores of prosocial behaviours and total difficulties along with five SNIP sub-scales were presented in Table 2. Mean prosocial behaviours and total difficulties scores fell within the normal range, suggesting a good adaptation, according to the guidelines provided by the developers of the SDQ (Goodman 1997).

Relationships between sibling adaptation and modifiable family factors All relationships between sibling outcome variables and family predictor variables were in expected

Table 2 Mean scores of SDQ-Kr and SNIP

SDQ-Kr SNIP

Variables

M

SD

Min

Max

Prosocial behaviours Total difficulties Awareness Feelings Having fun Helping Advocacy

6.68 8.81 12.86 16.57 15.48 15.03 13.89

2.29 4.13 3.61 3.79 4.41 2.90 3.54

1 1 5 6 6 6 5

10 22 25 27 27 20 21

SDQ-Kr, Korean version of the Strengths and Difficulties Questionnaire; SNIP, Sibling Need and Involvement Profile.

directions (correlation matrix; Table 3) and best models for sibling adaptation variables were presented in Table 4. Prosocial behaviours The best model for prosocial behaviours in siblings of children with DS in Korean families consisted of condition management effort and family hardiness with non-religious mother as a covariate, F3,93 = 8.90, P < 0.001. After controlling for the effects of non-religious mothers and the other variable fixed, for 1 unit change in condition management effort, sibling prosocial behaviours increased on average by about 0.21 units, t(1) = 2.58, P = 0.011. For an increase in family hardiness of 1 unit, sibling prosocial behaviours increased on average by about 0.12 units, t(1) = 4.02, P < 0.001. Mothers who did not report a religious preference perceived prosocial behaviours of their TD child on average 1.44 units greater than those who did report a religious preference, t(1) = 3.17, P = 0.002. Total difficulties Siblings total difficulties were best estimated by the model including social support and diagnosis of ID (first degree) of child with DS, F2,94 = 12.21, P < 0.001. This variable was estimated to decrease on average by about 0.17 units for an increase in social support of 1 unit, t(1) = −3.21, P = 0.002, controlling for the ID of children with DS in the first degree. Mothers who had a child with DS who was diagnosed with ID in the first degree perceived their TD child’s total difficulties score on average


−0.26* −0.16 −0.01 −0.27* −0.36** −0.18 −0.13 0.15 0.05 0.04 −0.07 0.13 0.18 −0.08 0.14 0.24*

0.30* 0.18 0.17 0.14 0.26* 0.24* −0.06 −0.10 −0.24* 0.04 −0.33** −0.25* −0.01 −0.35** −0.26*

2

0.19 0.45** 0.45** 0.65** 0.20* 0.14 −0.12 −0.25* 0.27* −0.24* −0.11 −0.28* −0.32* −0.21*

3

0.41** 0.41** 0.30* 0.33* 0.37** −0.32* −0.32* 0.32* −0.23* −0.24* −0.20* −0.20 −0.23*

4

0.63** 0.56** 0.27* 0.39** −0.38** −0.47** 0.47** −0.28* −0.27* −0.22* −0.36** −0.40**

5

0.43** 0.34* 0.16 −0.36** −0.41** 0.43** −0.24* −0.20 −0.22* −0.41** −0.45**

6

0.29* 0.15 −0.31* −0.47** 0.33** −0.43** −0.31* −0.32* −0.38** −0.36**

7

0.39** −0.36** −0.41** 0.49** −0.38** −0.37** −0.16 −0.35** −0.46**

8

−0.37** −0.29* 0.68** −0.25* −0.22* −13 −0.20* −0.34**

9

0.44** −0.58** 0.37** 0.29* 0.23* 0.23* 0.41**

10

−0.57** 0.52** 0.45** 0.39** 0.61** 0.59**

11

−0.45** −0.38** −0.37** −0.46** −0.63**

12

0.71** 0.22* 0.53** 0.63**

13

0.21* 0.50** 0.68**

14

0.38** 0.21*

15

0.51**

16

17


* P < 0.05, ** P < 0.001. 1: Prosocial Behaviours, 2: Total Difficulties Score, 3: Awareness, 4: Feelings, 5: Having Fun, 6: Helping, 7: Advocacy, 8: Family Strains, 9: Condition Management Effort, 10: Child’s Daily Life, 11: Condition Management Ability, 12: Family Life Difficulty, 13: Parental Mutuality, 14: Family Problem Solving Communication, 15: Relative and Friend Support, 16: Social Support, 17: Family Hardiness.

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17

1

Table 3 Correlation matrix

969 volume 58 part 10 october 2014






Table 4 Final models of sibling adaptation

Sibling adaptation

Model

Prosocial behaviour

Condition management effort Family hardiness Maternal religion – none Social support Diagnosis of intellectual disability – first degree Social support Maternal age Current family income – middle and high Age of child with DS Condition management effort Condition management ability Age of child with DS > 15 years Condition management ability Condition management effort Current family income – middle and high Social support Child’s daily life Family hardiness Maternal religion – Protestant Condition management ability Parental mutuality Number of children in family Age of child with DS Diagnosis of DS – before child’s birth

Total difficulties Awareness

Feelings

Having fun

Helping

Advocacy

R2

β

sr2

8.90**

0.22

12.21**

0.21

11.09**

0.34

9.09**

0.23

16.11**

0.34

11.78**

0.34

13.05**

0.43

0.21* 0.12** 1.44* −0.17* −2.34* −0.17** −0.17* 1.40* −0.21* 0.40* −0.13* −1.99* −0.36** 0.42* 2.06* −0.12* −0.18* −0.08* 1.65* −0.19** −0.18* −1.67* −0.22* −4.30*

0.06 0.14 0.08 0.09 0.07 0.11 0.03 0.03 0.04 0.08 0.03 0.06 0.18 0.06 0.04 0.07 0.03 0.03 0.07 0.08 0.05 0.06 0.07 0.05

F

* P < 0.05. ** P < 0.001. DS, Down syndrome.

2.34 units less than those whose child with DS was diagnosed with ID in other than first degree or was not diagnosed with ID yet, t(1) = −2.94, P = 0.004. Awareness Sibling awareness was best explained by maternal perceptions about social support along with maternal age, current family income (middle and high) and the age of a child with DS, F4,88 = 11.09, P < 0.001. After controlling for the effects of current family income and the rest of the variables fixed, the score of sibling awareness was estimated to decrease (indicating greater awareness) on average by about 0.17 units for an increase in social support of 1 unit, t(1) = −3.77, P < 0.001. Moreover, the score decreased on average by about 0.17 units, t(1) = −2.11, P = 0.038, for an increase in maternal age of 1 year and by about 0.21 units, t(1) = −2.36, P = 0.021, for an increase in the age of child with

DS of 1 year. However, mothers who reported that their family income was middle to high perceived the extent to which their TD child was aware of the diagnosis of DS on average 1.40 units greater (indicating less awareness) than those whose family income was middle-low or low, t(1) = 2.04, P = 0.044. Feelings Sibling feelings regarding their brother or sister with DS were best predicted by condition management effort and condition management ability along with the age of a child with DS, in particular, over 15 years, F3,92 = 9.09, P < 0.001. After accounting for whether the child with DS was over 15 years or not and the other variable fixed, sibling feelings were estimated to increase (indicating more negative feelings about their sibling with DS) on average by about 0.40 units, t(1) = 3.12, P = 0.002, for an





increases in condition management effort of 1 unit, but to decrease on average by about 0.13 units, t(1) = −2.02, P = 0.046, for an increase in condition management ability of 1 unit. Mothers who had children with DS over the age of 15, perceived their TD child’s feelings about the sibling with DS on average 1.99 units less (indicating more positive feelings) than mothers who had children with DS who were less than or equal to 15 years old, t(1) = −2.57, P = 0.012. Having fun The extent to which TD children play with their sibling with DS and have fun was best explained by the following variables: condition management ability, condition management effort, and current middle and high family income, F3,93 = 16.11, P < 0.001. After controlling for current family income and the other variable fixed, the extent of sibling having fun was estimated to decrease (indicating having more fun) on average by about 0.36 units for an increase in condition management ability of 1 unit, t(1) = −5.11, P < 0.001, but to increase on average about 0.42 units, t(1) = 3.00, P = 0.003 for an increase in condition management effort of 1 unit respectively. In addition, mothers who described their family income as middle to high perceived the amount of fun their TD child had with their brother or sister with DS was on average 2.06 units greater (indicating having less fun) than mothers who described their family income as middle-low or low, t(1) = 2.51, P = 0.014. Helping Sibling helping was best predicted by social support, child’s daily life, family hardiness and maternal religion of Protestant, F4,91 = 11.78, P < 0.001. After controlling for maternal religion of Protestant and the rest of the variables fixed, sibling helping was predicted to decrease (indicating more helping) on average by about 0.12 units for an increase in social support of 1 unit, t(1) = −3.17, P = 0.002, to decrease on average about 0.18 units for an increase in child’s daily life of 1 unit, t(1) = −2.18, P = 0.032, and also to decrease on average about 0.08 units for an increase in family hardiness of 1 unit, t(1) = −2.11, P = 0.038. Mothers who were

Protestant perceived the extent of helping that their TD child provides for a sibling with DS on average 1.65 units greater (indicating less helping) than those who were not Protestant, t(1) = 3.10, P = 0.003. Advocacy The extent to which TD children advocate for their sibling with DS was best estimated by the following variables: condition management ability, parental mutuality, number of children in the family, the age of child with DS, and diagnosis of DS before child’s birth, F5,88 = 13.05, P < 0.001. These decreases indicate a greater willingness for TD children to advocate for their brother or sister with DS. After accounting for the diagnosis of DS during pregnancy and the rest of the variables fixed, sibling advocacy was estimated to decrease on average by about 0.19 units for an increase in condition management ability of 1 unit, t(1) = −3.33, P = 0.001, and by about 0.18 units for an increase in parental mutuality of 1 unit, t(1) = −2.69, P = 0.009. As the number of children in the family increases, sibling advocacy was estimated to decrease on average by about 1.67 units, t(1) = −3.11, P = 0.003, and also to decrease on average by about 0.22 units for an increase in the age of child with DS of 1 year, t(1) = −3.18, P = 0.002. Mothers who knew about the child’s DS before the child was born perceived their TD child’s advocacy on average 4.30 units less than those who were diagnosed child’s DS after the child was born, t(1) = −2.63, P = 0.010.

Discussion Maternal perceptions of sibling adaptation Based on the SDQ-Kr data for prosocial behaviours and overall sibling difficulties, the mothers who participated in this study did not indicate that their TD children were experiencing psychological or behavioural problems. The SDQ-Kr mean scores for prosocial behaviours and overall sibling difficulties for this study were similar to those reported by researchers who had used the SDQ-Kr with mothers of TD children who were in the nonclinical group (Ahn et al. 2003) suggesting that the Korean siblings of children with DS were adapting





as well as siblings of TD children. These findings are consistent with findings from previous studies, which concluded that children who have a sibling with DS do not necessarily experience poor adaptation (Hastings 2007; Gau et al. 2008). Although some studies reported maladaptation (e.g. Rossiter & Sharpe 2001), in a number of studies no differences were reported between siblings of children with DS and TD children who do not have a sibling with DS with regard to their emotional, behavioural problems and sibling competence (Cuskelly & Gunn 2006; Hastings 2007; Gau et al. 2008). Then, in another study, mothers reported that siblings of children with DS were socially competent and had a low incidence of behaviour problems (Van Riper 2000). Mandleco et al. (2003) also reported that siblings of children with DS had highly co-operative behaviours and more self-control than children without a disabled sibling. However, when comparing the findings of sibling relationships from this study with those from a similar study conducted in the USA (Van Riper 2000), mothers in Korea tended to perceive sibling relationships as less desirable or less healthy than did Caucasian mothers in the USA. This suggests that siblings of children with DS in Korea may be experiencing more problems than siblings of children with DS in the USA in the following areas: awareness, feeling, having fun, helping and advocacy. A recent study conducted with 2044 parents of children with DS in the USA reported that the majority of parents perceived good relationships between their TD child and the sibling with DS (Skotko et al. 2011b). In contrast, a researcher who conducted a qualitative study with Korean siblings of children with DS reported that these siblings were often ashamed by their sibling’s unique facial appearances and behaviours and were also distressed by unfriendly attention from others (Park 2005). These difficulties might affect their relationships with a sibling with DS. In addition, the Confucian belief that an older sibling should take on a parental role with younger siblings may also lead to less than ideal sibling relationship because the TD sibling may find it difficult or annoying to take on the parental role with an older sibling who has DS. In summary, Korean mothers perceived their TD children were well-adapted in the psychological and behavioural areas, but they also perceived the rela-

tionships between TD sibling and their child with DS were not ideal when compared with siblings of children with DS in the USA. Thus, more attentions are needed in these relational areas.

Relationships between sibling adaptation and modifiable family factors and demographic characteristics Findings from this study indicated that various modifiable family factors played important roles in understanding sibling experiences in Korean families of children with DS. That is, the well-being of TD children can be greatly influenced by demands and challenges that are associated with caring for a child with DS (family demands), the way the family views the situation of having a child with DS (family appraisal), the way the family copes with difficulties (family problem-solving and coping) and available resources (family resources). In particular, mothers who reported it took more effort to manage their child’s condition also reported more prosocial behaviour in their TD child. Findings from previous studies have indicated siblings of children with DS take caregiving responsibilities to some extent (Choi & Van Riper 2013), and they also feel helpful to their siblings and parents (Skotko & Levine 2006). In addition, these caregiving activities were negatively associated with their behavioural problems (Cuskelly et al. 1998). Along with being a good sibling of a child with DS, offsprings are taught not only to take care of their parents, but also to respect elderly people in traditional Korean families. Therefore, based on findings from this study it can be posited that because of these disciplines, TD children might be willing to help others as well as their parents. Thus, Korean mothers might believe that their TD child may have learned how to help both their sibling with DS and other people by helping their parents deal with the everyday demands associated with having a child with DS in the family and, in turn, exhibit prosocial behaviours. In this study, the age of the child with DS was an important predictor of understanding the nature of sibling relationships particularly regarding awareness, feelings and advocacy. This might be related to the fact that parents in traditional Korean families often scold their TD children when they do not





respect their older sibling or look after their younger sibling with a disability. Thus, as their brother or sister with DS grows, siblings might better understand and have more positive feelings about their sibling with DS and, therefore, be more able to advocate for their sibling with DS. In particular, mothers from families where the child with DS was older than 15 years old were more likely to indicate that their TD child felt positive about their sibling with DS than were mothers from families where the child with DS was less than or equal to 15 years old. This finding suggests it is important to consider the age of child with DS when developing effective intervention programmes for their TD siblings, in particular, who may have difficulties creating positive feelings about their brother or sister with DS. Given the importance considering the characteristics of siblings (Stoneman et al. 1987, 1988, 1989, 1991) in understanding the adaptation of siblings of children with DS, the age, gender and birth order of siblings were taken into account in this study. However, none of these characteristics were found to be statistically significant. These inconsistent findings call for further examination of siblings’ demographic factors in consideration of the moderating effects. Although religion is considered to be an important coping resource in ameliorating parental stress and family tension in many studies of families of children with disabilities (Cho 1998; Tarakeshwar & Pargament 2001), mothers without a religious preference in this study reported fewer psychological and behavioural problems in their TD children. This inconsistent finding can be understood in the Korean cultural and social context. For Korean families, attending religious services might bring more uncomfortable attention to their families, possibly because of the atypical behaviours the child with DS might exhibit. Unwanted attention is often considered to be a major stressor. Therefore, mothers who reported a religious preference might have observed fewer prosocial behaviours in their TD children. Another finding that was inconsistent with prior research is that mothers who reported their family had a higher socio-economic status were more likely to report lower levels of sibling adaptation. This inconsistent finding may be due to the fact that many of the services and resources provided by the Korean Ministry of

Health and Welfare (2013) are need-based resources. That is, only families with limited income are able to qualify for these services and sources. Considering things that most families of children with DS need are likely to be ongoing services and resources, even families with high income might have difficulties to some extent and lack of time and resources for TD children could influence their adaptation. Another explanation is that families with a higher socio-economic status may also have higher expectations for their TD children. Given the need for considering the influence of familial, cultural and social factors on sibling adaptation (Stoneman 2005) on the basis of a guiding framework, this study is one of the few studies encompassing these perspectives. It is likely that the findings of this study will not only contribute to our knowledge about family factors that influence sibling adaptation in Korean families of children with DS, but also help in the development of culturally appropriate, effective interventions for siblings who may be at increased risk of having difficulties. In other words, health care professionals should assess family factors such as family demands, family resources, family appraisal and family problem-solving communication and, then, based on the findings of their family assessment, they should focus on interventions that address the family factors they have determined are most in need of strengthening. For example, if the TD sibling is experiencing behavioural problems and the family appears to have limited support available for the TD sibling, the most effective intervention is likely to be one designed to provide additional support for the sibling (e.g. sibling workshops or links to websites where siblings can connect with other siblings of children with DS). On the other hand, if the family factor that seems to need strengthening is family appraisal, the most effective intervention is likely to be one that helps the family to view their situation more positively. Finally, if family demands seem to be unusually high, the most effective intervention is likely to be one that helps identify the specific demands the family is facing, as well as explore possible approaches to decrease these demands (e.g. providing respite care services for a family that has limited child care services).





In addition, this study was conducted with measures encompassing both positive and negative influences of having a sibling with DS on TD children in light of their psychological, behavioural and relational adaptation. This study also used the FaMM measure (Knafl et al. 2009) to effectively quantify maternal perceptions on how the family viewed having a child with DS and successfully demonstrated its substantial role in understanding sibling adaptation. Finally, this study examined maternal perceptions at three different levels: individual (i.e. sibling adaptation), a dyadic relationship (i.e. parental mutuality) and the family as a unit (e.g. family factors) in an effort to comprehensively understand sibling experiences. The limitations of the study should be considered when interpreting the results. The major limitation of this study is that the study used a maternal perspective only at a certain point in time. Although it was found that maternal perceptions of traditional value orientation associated with collectivism had a direct or indirect impact on various family factors (Shin & Crittenden 2003), we could not be sure whether or not the participating mothers in this study followed the Confucian values and, thus, we would not be able to explain the impact these values have on the mothers as we did not specifically examine the values in this study. Therefore, to fully understand cultural influences, examining the Confucian values of subjects (e.g. mothers) needs to be included in future studies. Another limitation was the wide range in age of the TD siblings. Thus, future studies need to use multiple respondents (including both parents, teacher and sibling themselves) and a variety of developmentally appropriate measures to thoroughly understand sibling experiences and their adaptation. In addition, future sibling research needs to include longitudinal studies and intervention studies that can provide information about cause and effect of family factors on sibling experiences, which changes developmentally. Although a great deal of efforts was given to the process of establishing measurement comparability by following the guideline (Guillemin et al. 1993), there were sub-scales that were not reliable for the use of Korean mothers in this study. Thus, further investigations of psychometric properties on measures that were

translated into Korean should be conducted in the careful and thorough consideration. There were several inconsistent findings as well compared with previous studies. Thus, this study needs to be replicated with a larger sample. In addition, a convenience sample from mainly two major metropolitan areas in Korea was used for this study, which is likely to reduce the generalisability of findings. Participants from rural areas or small cities were less likely to be included in this study. Therefore, a future study with a larger and more representative sample of families of children with DS from various geographical areas in Korea is needed to increase generalisability within the country. This study did not include a comparison group of siblings of TD children and thus findings from this study could not be explained in relation to siblings of non-disabled children. It was beneficial to explore the similarities and unique features of sibling relationships; however, this study did not include a comparison sample from the USA. In addition, the comparison (Korea vs. USA) conducted with the existing data was limited to their relationships only, and so possible explanations for the differing experiences in the family context could not be explored. Thus, conducting a cross-cultural sibling study with samples drawn from both Korea and the USA can deepen our understanding about how ethnic difference can influence dynamics in family relationships. Finally, when it comes to other siblings in the family, the generalisability of the findings from this study can be questionable (Hodapp et al. 2005; Graff et al. 2008). Regarding this sampling issue, Hodapp and his colleagues (2005) suggested the followings: (a) studying more than one sibling of the individual with disability; (b) systematically sampling older and younger siblings, and (c) analysing the contributions of age span, gender and size of sibling group on both childhood and later life outcomes (Hodapp et al. 2005, p. 335). Thus, these concerns should be taken into account for the future study to comprehensively understand sibling experiences and, thereby, to help develop effective intervention programmes for each sibling who may be at risk of experiencing difficulties in adapting to living with a sibling with DS. Moreover, it should be considered different developmental stages of





both TD children and their siblings with DS can influence sibling experiences.

Conclusion Most of the Korean mothers who participated in this study did not indicate that their TD child was currently experiencing psychological or behavioural difficulties; however, they did express concern about a number of areas in the relationship between their TD child and their child with DS. Various family factors played critical roles in understanding sibling adaptation, and the characteristics of the child with DS, TD sibling and the family influenced sibling adaptation. These findings provide a foundation for health care professionals to identify TD children who might be at increased risk for experiencing difficulties adapting to the ongoing challenges associated with being the sibling of a child with DS and to design culturally appropriate, effective intervention programmes using modifiable family factors (e.g. family hardiness, social support) targeted to these Korean siblings. These interventions may be also used for siblings living in other Asian countries sharing similar situations and values (i.e. Confucianism). In particular, the guiding framework can be successfully used by health care professionals who are interested in understanding sibling experiences in families of children with DS in the consideration of familial, social and cultural contexts and developing appropriate intervention strategies.

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Acknowledgements

Cuskelly M., Chant D. & Hayes A. (1998) Behaviour problems in the siblings of children with Down syndrome: associations with family responsibilities and parental stress. International Journal of Disability, Development and Education 45, 295–311. doi: 10.1080/ 1034912980450305

The authors wish to thank all Korean mothers of children with DS who participated in this study.

Fish T., McCaffrey F., Bush K. & Piskur S. (1995) Sibling Need and Involvement Profile. Ohio State University, Nisonger Center UAP, Columbus.

Conflict of interests

Fisman S., Wolf L., Ellison D., Gillis B., Freeman T. & Szatmari P. (1996) Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of American Academy of Child and Adolescent Psychiatry 35, 1532–41. doi: 10.1097/00004583199611000-00023

The authors have no conflicts of interest to disclose.

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Accepted 24 January 2014


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