ORIGINAL PAPER

A Multifaceted Model of Changes and Adaptation among KoreanMothers of Children with Disabilities

Hye Jun Park • Grace H. Chung

� Springer Science+Business Media New York 2014

Abstract The present study sought to strengthen existing

research on parenting in the context of child disability in

two ways. First, we applied the caregiving stress process

model to systematically examine a dynamic process of

change and adaptation among mothers raising children

with disabilities over time. Second, we conducted six focus

groups with 18 Korean mothers to enrich cultural under-

standing of what contributes to their adaptation in the

context of Korean society, paying particular attention to

informal support. A convenient, purposive sampling

method was used to recruit Korean mothers from local

special education centers, who were married and had at

least one schoolage child with a disability. The focus group

narratives primarily revolved around how mothers have

come to embrace their child’s disability over time though

they are aware that it is a never-ending endeavor in pro-

cess. Caregiving experiences were shaped by their sub-

jective appraisal of the child’s disability and their own

lives, which had gone through significant changes over the

years following an initial diagnosis of a child’s disability.

Social support, particularly the informal support from other

mothers who are also raising a child with a disability, was

not something that was immediately available to them but

gradually came to take a meaningful place in their lives

over time. Findings suggest that for an intervention pro-

gram to be effective, it should be embedded in the larger

public policy that offers the context where mothers can

build informal support network.

Keywords Parenting � Child disability � Korean mothers �Stress process model

Introduction

Parenting a child with a disability accompanies special

demands that many parents are not prepared to meet at the

time of initial diagnosis. As parents navigate their way

through this unexpected and nonnormative situation pre-

viously unknown to them, it presents enormous challenges

to their adaptation. As such, earlier research on parenting in

the context of child disability primarily addressed chil-

dren’s behavior problems and parenting stress (e.g., Baker

et al. 2002; Clark and Standard 1996; Ho and Keiley 2003).

Over the years, however, researchers have come to rec-

ognize that the lives of these families are filled with neg-

ative as well as positive experiences just like any other

families (Trute et al. 2007). Thus, it has become an

important goal of research to present a more balanced and

realistic portrayal of families with child disability by

examining not only their hardships and pain, but also their

resilience and achievement (Seligman and Darling 2007).

Also, given that adaptation to caregiving stress is under-

stood as a process rather than a fixed outcome (Pearlin

1989), there is a small but emerging body of research that

focuses on change as these families cope with, and make

sense of, child disability over time (e.g., Banks 2003; Gray

2006).

Despite these advances in research, the current schol-

arship is limited to studies conducted in Western societies

(Rao 2001). More research is needed to understand how

H. J. Park (&) � G. H. Chung

Department of Child Development and Family Studies, Research

Institute of Human Ecology, Seoul National University, 1

Gwanakro, Gwanakgu, Seoul 151-742, Republic of Korea

e-mail: hyejun@snu.ac.kr

123

J Child Fam Stud

DOI 10.1007/s10826-014-9902-y

families in non-Western societies adapt to child disability.

Also, very few studies drew upon a theoretical model to

examine changes over time that these families experience

and the interplay between such changes and their adapta-

tion. In light of this gap, the present study sought to

strengthen the body of research in this area in two ways.

First, we applied a caregiving stress process model (Pearlin

1989) to examine a dynamic process of change and adap-

tation over time in the context of child disability from the

perspectives of mothers. We paid particular attention to

multiple stages of reconstructing perceptions of a self as a

caregiver and of the child disability as children grow over

time. The caregiving stress process model (Pearlin 1989)

provided the structure for systematically exploring multiple

factors that lead to changes and how these changes interact

together to influence their adaptation in this study. Second,

by conducting focus groups with 18 Korean mothers of

children with disabilities, we also aimed to enrich cultural

understanding of what contributes to their adaptation in the

context of Korean society. As the importance of informal

social support for families with child disability is well

documented in Western research (e.g., Boyd 2002; Lind-

blad et al. 2007), we were particularly interested in Korean

mothers’ perception of informal social support in the cul-

tural context that values familism and ‘saving face’ from

outsiders and the role that it may potentially play in their

adaptation.

While caregiving stress in the context of child disability

has been extensively studied, several important issues

remain that merit further exploration. First, much of the

prior research has primarily devoted to studying negative

caregiver outcomes (Baker et al. 2002; Clark and Standard

1996; Ho and Keiley 2003), which inevitably has generated

a tendency to interpret the experiences of mothers raising a

child with a disability in a negative light. Specifically,

mothers of children with disabilities reported considerably

higher levels of emotional difficulties, daily and chronic

stress, and parenting burdens and demands than did the

parents of children without disabilities (e.g., Cadman et al.

1991; Dyson 1993). The extent of caregiving stress, how-

ever, is determined by multiple factors, such as child

characteristics, mother’s perception of the child’s disability

and informal social support (Hassal and Rose 2005). For

instance, mothers of children with disabilities reported

higher levels of stress when they perceived that it was

challenging to control their child’s behavioral problems

and that caring for their children has taken control of their

lives (Lloyd and Hastings 2009). On the contrary, mothers

with high parental efficacy (Kuhn and Carter 2006) and

mothers who have positive perceptions of their child’s

disability showed better psychological well-being (Dykens

2005; Taunt and Hastings 2002). Despite such evidence of

positive adaptation, we have little systematic understanding

about how it is shaped by multiple factors interacting

together. A small body of research highlighting evidence of

positive adaptation, such as satisfaction, as opposed to

caregiving stress, have recently begun to emerge (e.g.,

Hastings et al. 2009; Lee et al. 2008; Trute et al. 2007).

Yet, more multidimensional understanding of the process

in which parents of children with disabilities reach positive

adaptation is very much needed.

In contrast to the abundance of studies focused on

parental strain and outcomes, less is known about the ways

in which parents may change and mature over time as a

person through the experience of parenting in the context

of child disability and what is involved in this process of

change. In prior studies, children with disabilities have

been perceived as passive recipients of caregiving and as a

source of parental strain and burden. However, several

scholars (Hastings et al. 2009; Scorgie and Sobsey 2000)

have highlighted in their research that children may play an

active role, contributing to positive changes and growth in

their parents over time. The notion that parents also con-

tinue to change and mature through the experience of

caregiving has not received much attention. We speculate

that physical and cognitive changes in children as they

develop and changes in their disability conditions may also

pose new challenges for mothers, creating changes in their

perceptions as well as actual parenting practices.

Another important issue has to do with the lack of

attention to culture in the existing research. Prior studies in

this area are primarily based on the experiences of non-

Hispanic White parents in the US (Goldner and Drentea

2009). Thus, what we currently know about this topic

provides only a partial portrayal, lacking the perspectives

of parents from other cultural backgrounds. Particularly,

even though a positive significance of informal social

support in the lives of parents raising children with dis-

abilities is extensively documented in research (Boyd

2002; Lindblad et al. 2007), we do not know how parents in

non-Western societies experience informal social support.

In South Korea, for instance, disability is still stigma-

tized and perceived with prejudice even though a series of

legislations and mandates are enacted to expand opportu-

nities for children with disabilities (Choi 2010). South

Korea witnessed an outburst of free public special educa-

tion programs and related services for children and ado-

lescents with disabilities since the very first enactment of

Special Education Promotion Act in 1977 and its amend-

ments in 1994 (Law No. 4716) (Kwon 2005; Paik and

Healey 1999). The Child Care Law for Infants and Young

Children in 2002 allowed the Ministry of Health and Social

Welfare to expand community-based services for children

and families in needs, including families of children with

disabilities. Then the newly reformed Special Education

Law in 2009 brought the attention to the importance of

J Child Fam Stud

123

inclusive education for children with disabilities (Kim

2012, 2013), along with the revised Koreans with Dis-

abilities Act in 2007 to protect individuals with disabilities.

In 2012, the Special Education Law administered by the

Ministry of Education mandated free public education in

kindergartens and high schools. These legislative efforts to

ensure discrimination-free education did increase the

number of social services for families of children with

disabilities and opportunities to receive public education.

However, experts criticize that such an improvement in

quantity did not necessarily lead to changes in social cli-

mate as perceptions towards people with disabilities remain

negative and biased.

In such a negative social climate, Korean parents of

children with disabilities may be hesitant to seek support

from social agencies. For instance, Jung (2007) reported

that many parents who were financially capable preferred

to pay for expensive private services because they were

reluctant to expose their children’s disabilities by regis-

tering them for eligible public services offered by the

Ministry of Health and Welfare or the Ministry of Educa-

tion. Thus, informal social support, such as support from

extended family members, may be a valuable source of

support for these families. However, Oh and Lee (2009)’s

study on caregiver burden and social support among Kor-

ean mothers raising children with developmental delays

showed the negative impact of familial support, particu-

larly the relatives on the husband’s side who were not

sensitive to disabilities. In addition, families may not

believe in the benefit of seeking informal support outside

the boundary of extended family either due to a strong

cultural emphasis on ‘saving face’ and familism in Korea

because it would mean having to disclose the child’s dis-

ability to outsiders (Kim 2004). Overall, there is evidence

that social support can operate like a double-edged sword

for these families and sense of ambivalence towards social

support appears prevalent among Korean parents. In this

light, more research is needed to shed light on what entails

meaningful social support for Korean parents and how it

helps them reach positive adaptation in the context of child

disability. Our study aimed to fill this gap by asking Korean

mothers to share their experiences in terms of social

support.

Past studies tended to emphasize negative attitudes

toward disability and explain higher levels of guilt and

stress reported by Korean mothers of children with dis-

abilities by highlighting a culturally deep-seated miscon-

ception that equates disability with karma (Kim-Rupnow

2001; Seo et al. 1992; Shin and Crittenden 2003). More

recent studies, however, have shown that as medical

explanations of disabilities gain more popularity over

unscientific assumptions rooted in traditional beliefs,

Korean parents are increasingly less likely to blame

themselves but resist prejudice (Oh and Lee 2009; You and

McGraw 2011; BLINDED). Given the role of cultural

misconceptions towards disability in Korean parents’

adaptation, it is necessary to delve into the intersection of

disability and culture and its influence upon the lives of

families in Korean society.

Lastly, while theoretical frameworks exist that explain

the processes of stress and coping in general (e.g., Lazarus

and Folkman 1984) as well as for caregivers of elderly with

dementia in particular (Pearlin 1989), very few studies

drew upon a theoretical model to conceptualize the process

of parental adaptation specifically in the context of child

disability (e.g., Raina et al. 2004). By applying the care-

giving stress process model (Pearlin 1989) in this study, we

sought to generate a systematic and comprehensive

understanding of how Korean mothers raising children with

disabilities achieve adaptation over time.

The caregiving stress process model (Pearlin 1989)

provided a useful framework in this study for mapping how

parental adaptation is shaped over time by multiple factors,

including stressors, subjective appraisal, and various

resources in the context of caregiving for children with

disabilities (see Fig. 1). Although this model was originally

developed to explain the caregiver stress process among

caregivers of elderly adults, its constructs are useful and

relevant for the purpose of the present investigation. By

focusing on caregiver adaptation as an outcome, this model

is useful for highlighting how the changes that occur at

multiple levels as parents care for their child are related to

caregiver well-being. In the context of raising a child with

disability, parents encounter various stressors that are

ongoing in nature, stemming directly from the child’s

disability as they navigate day-to-day responsibilities and

tasks. The amount of care that the child requires and the

degree of the child’s problem behaviors may be examples

of such stressors. These objective stressors are termed

primary stressors in the model. Subjective stressors such as

perceived caregiving distress are also categorized as pri-

mary stressors. In addition, secondary stressors refer to

caregiver role strains and instrapsychic strains related to

factors such as personality and life orientation. While

recognizing the role of these stressors in the individual

caregiver outcomes, this model emphasizes that their

implications may be either negative or positive, depending

on the subjective meanings that he/she attaches to the sit-

uation (Hassal and Rose 2005). For instance, a parent who

perceives his/her child’s disability as an exceptional path to

personal growth despite the pain associated with it will

likely to experience a sense of personal fulfillment as a

parent compared to the one who continues to see it as a

curse or a burden to be carried on. Such subjective

appraisals do not take place in vacuum but is influenced by

multiple factors, including availability of social support,

J Child Fam Stud

123

personal dispositions, and coping style (Lindblad et al.

2007). Thus, it is important to identify what these social

and personal resources are and the ways in which they help

individuals to make sense of a stressful situation in their

own positive and constructive ways.

Method

Participants

A convenient, purposive sampling method was used to

recruit mothers who were married and raising at least one

child with a disability diagnosed by a professional on an

IEP (Individualized Education Plan), attending elementary

or middle school in Korea. All mothers were full-time

housewives at the time of the focus group interview. Six of

them finished high school and 12 mothers received college

education. Their mean age was 43 (SD = 2.01). A mean

age for fathers was 45 (SD = 1.76). All were employed

full-time. Two of them received high school education

while fourteen fathers finished college and two had doc-

toral degrees. We did not collect information about their

household income but none of the families was receiving

welfare support from the government for their child’s

disability, indicating that they are financially stable. Child

characteristics of the participants are summarized in

Table 1. The children of the participants in this study had a

wide range of physical, cognitive, social and emotional

disabilities from mild to moderate and severe conditions.

The types of schools that the children were attending also

varied from full inclusion classroom in general education

school (n = 6) to separate special education schools

(n = 12).

Procedure

The narratives of mothers were used as the main source of

data because mothers have been considered a primary

caregiver throughout the long history of Confucianism in

Korea (Yang and Rettig 2003). Following a childbirth,

Korean women’s personal identity is defined by their child

as they are called so-and-so’s mother rather than her given

name (Grinker 2007). This practice reflects how much the

Korean society places parenting responsibilities on mothers

and expects them to serve as primary caregivers. The other

important selection criteria for this study was a marital

status because research suggests that it is related to the

well-being of mothers raising children with disabilities

(Kersh et al. 2006; Knestrict and Kuchey 2009).

Narratives of parenting experiences were obtained via

six focus group interviews conducted with 18 mothers of

children with disabilities. Procedures for recruitment and

data collection were approved by the Institutional Review

Board of the university that the authors are employed. A

focus group interview is often used to collect narrative data

from socially vulnerable populations or to explore sensitive

topics (Ferrell et al. 1997). A unique strength of this

method compared to the individual interview is that it

creates an atmosphere where participants feel connected

with other members in the group through their shared

experiences, thus effective for drawing diverse experi-

ences, reactions, emotions, and insights from participants

that may not easily surface during individual interviews

(Kitzinger 1994).

The first author of this study had a professional rela-

tionship with two local special education centers for chil-

dren with disabilities in the Provinces of Kyunggi and

Choongchung. We contacted the centers and asked them to

Fig. 1 The model of caregiving

stress process

J Child Fam Stud

123

Table 1 Child characteristics of the participants

Child Diagnosis Disability condition Grade/school type Siblings/Family context

FG 1

A

Boy

Cognitive disabilities Severe

Delayed cognitive development

Limited self-help skills

Nonverbal

4th grade

Special school

Younger sister

B

Girl

Rett syndrome Severe w/worsening condition

Limited motor movement

Needs help for feeding and toileting

Nonverbal

4th grade

Special school

Older sister

C

Boy

Cognitive disabilities Moderate to Severe

Limited verbal communication w/single

words

Limited social interaction

Severe sleep problems

Some behavior problems

4th grade

Special school

*transferred from general

school

Younger sister

FG 2

D

Boy

Congenital brain anomaly Mild

Cognitive developmental delay

w/difficulty in school work

Verbal

1st grade

Full inclusion classroom in

general School

Older sister

E

Girl

Cerebral palsy Severe

Good social interaction w/peers

Moderate self-help skills

Nonverbal

4th grade

Special classroom in general

school

Younger sister

F

Boy

Traumatic brain injury Severe

Multiple disabilities w/limited vision,

but walk independently

Limited verbal communication w/words

2nd grade

Inclusive school

Second child is adopted

Boy Autism Severe

Severely impaired social interaction

Severe behavior problems

Nonverbal

1st grade

Inclusive school

FG 3

G

Boy

Cerebral palsy Moderate to severe

Global developmental delays

Good self-help skills

Verbal

3rd grade

Full inclusion classroom in

general school

Older sister

H

Boy

Hemiplegic cerebral palsy Mild to Moderate

Delayed cognitive development

Nonverbal

Some behavior problems

3rd grade

Special school *transferred

from general school

Only child

FG 4

J

Girl

Cognitive disabilities Mild to moderate

Delayed cognitive and language

development

Limited verbal communication w/words

4th grade

Special classroom in general

school

Only child

J Child Fam Stud

123

introduce mothers who might be interested in this study.

Directors of these centers allowed us to briefly make an

invitation announcement during a monthly public forum

that they have for community members and parents who

are interested in disability-related issues, parenting and

education. Ten mothers volunteered to participate in the

study and these mothers invited their friends who also have

a child with a disability. Thus, a total of 18 mothers par-

ticipated in the focus group interviews.

Because it may be difficult for mothers of children with

disability to share their personal experiences with a

researcher whom they just met, we organized six groups so

that mothers were in the same group with other mothers

whom they had built a close relationship with over the

years through participation in center programs with their

children. It created a comfortable setting that enabled them

to freely talk about their experiences and feelings around a

particular issue that the researcher prompted for open-

ended discussion among the group members. Both authors

were present during all focus group interviews as facilita-

tors. Each group was given a series of topics (e.g., the first

time, being a mother of a child with a disability, changes in

children, challenges, what helps me go on, support and

resources, changes in perception, evaluation of life) to

freely discuss each one with one another in light of their

own personal experiences. We identified these topics based

Table 1 continued

Child Diagnosis Disability condition Grade/school type Siblings/Family context

K

Girl

Cerebral palsy and non-

epileptic seizures

Severe

Delayed motor and cognitive

development

Verbal

Good social interactions

Medication for seizures

5th grade

Special classroom in general

school

Two younger sisters

L

Boy

Mitochondrial disorders and

epileptic seizures

Severe w/worsening conditions

Global developmental delays

Limited verbal communication

Medication for seizures

6th grade

Special classroom in general

school

Older sister

FG 5

M

Boy

Cognitive disabilities Mild

Recently diagnosed

Verbal communication

Difficulty in school work

2nd grade

Full inclusion classroom in

general school

Twin (same school

w/different classroom)

N

Girl

Cerebral palsy premature

birth

Severe

Limited motor movement

Needs help for toileting

Good social interaction w/peers

Verbal communication

3rd grade

Full inclusion classroom in

general school

*transfer from special school

Two older sisters (6th and

4th grade)

*Long distance marriage

O

Boy

Autism Mild to moderate

Verbal communication

4th grade

Special classroom in general

school

Younger sister (2nd grade)

FG 6

P

Boy

Epileptic seizures Severe

Global developmental delays

Limited verbal communication

4th grade

Special classroom in general

school

Older sister

Q

Girl

Epileptic seizures Severe w/worsening conditions

Severe motor and cognitive delays

Nonverbal/imitating sounds

Medications for seizures

5th grade

Special school

Two younger sisters

R

Boy

Cognitive disabilities Severe

Cognitive delays

Limited verbal communication

Behavior problems

3rd grade

Special school (Redshirting)

Two brothers

J Child Fam Stud

123

on the key concepts from the caregiving stress process

model (e.g., stressors, subjective appraisal, support, and

caregiver outcomes). For each topic, we asked multiple

probing questions and additional related questions (see

‘‘Appendix’’ for sample questions). All six focus group

interviews took place in a private room located at the

center. Four of the six focus group interviews were con-

ducted with three mothers and two focus group interviews

were each conducted with two and four mothers, respec-

tively. Each focus group interview lasted about 2 h.

Interviews were digitally recorded and transcribed upon

participant consent.

To ensure trustworthiness of the data, both authors were

present during all focus group interviews rather than hav-

ing one person facilitate. This reduced the researcher bias

associated with having one person conduct all interviews

(Patton 1990). Also during data analysis, we ensured

consistency across interviews by meeting up with each

other throughout data collection to reflect on the focus

group interviews and the topics that were covered. This

also allowed us to gain depth as we proceeded. We were in

frequent communication about the interviews as we

evolved to maintain a common sense of the data and to

identify points for data analysis.

Data Analysis

For data analysis, a process introduced by Creswell (1994)

was employed. First, we individually read the transcripts

numerous times, grouping narratives by elements of the

caregiving stress process model (e.g., primary and sec-

ondary stressors, subjective appraisal, support, and etc.).

Simultaneously we also noted similarities and variations in

perspectives or themes that emerged on each element

across the transcripts. We then met to compare and review

individual findings and reached consensus over the find-

ings. Next, relationships between and among the key ele-

ments were identified by reviewing individual findings one

more time, eliminating irrelevant data, and identifying

overlapping elements. The core category of ‘the changes

within change’ emerged from the focus group narratives,

holding the emergent themes that were identified earlier.

We then put all the pieces together in the frame of the

caregiving stress process model as shown in Fig. 2. In this

model, we emphasized changes in the mothers’ caregiving

experiences and changes that such change had brought

about in mothers’ lives. After data analysis was completed,

we selected interview quotes that best captured the essence

of each element in Fig. 2. These selected quotes were

translated to English by a bilingual researcher, and checked

for accuracy in meaning by the first author. To protect

participants’ anonymity all names were replaced with a

single alphabet letter.

Results

The stories of 18 Korean mothers during focus group

interviews primarily revolved around how they have come

to embrace their child’s disability over time though they

were aware that it is a never-ending endeavor in process. As

illustrated in Fig. 2, the mothers’ experiences of caregiving

were shaped by their subjective appraisal of the child’s

disability and their own lives, which had gone through sig-

nificant changes over the years following an initial diagnosis

of a child’s disability. Gradual changes that took place in the

child’s conditions (e.g., developmental changes as well as

changes in disability conditions) also considerably changed

these mothers’ perceptions of the child and parenting. Social

support, particularly the informal support from other moth-

ers who are also raising a child with a disability, was not

something that was immediately available to them but

gradually came to take a meaningful place in their lives over

time. Each of these factors interacted with one another,

contributing to the ways in which mothers redefined and

reframed caregiving in the context of the child disability.

A Constant Interplay Between Primary and Secondary

Stressors

Previous studies support that the child’s disability and

behavior problems are key factors associated with care-

giver’s physical and psychological health (Raina et al.

2004). Yet, very few studies focused on the dynamic pro-

cess that parents go through to reconstruct their perception

of the child’s disability over time (Gray 2002). Focus group

narratives of the mothers in this study showed that it was

not easy for them to readily embrace their child’s disabil-

ity. Instead, it was more like a journey that required a series

of considerable but gradual reconstructions of their beliefs

and expectations alongside the revolving changes in their

child’s conditions over the years.

Primary Stressors: My Child Has a Disability

The place of disappointment and sorrow was where

mothers in this study initially began their journey. Narra-

tives of the mothers’ initial reaction to their child’s dis-

ability still carried the sense of despair and unbelief that

had pierced their hearts years ago.

A’s mom: Back when I first acknowledged finally

that my son had a disability, I felt like dying. It was

really, really hard to accept it. I cried almost every-

day. It was the most difficult time. Wasn’t it?

C’s mom: Absolutely. I agree.

A’s mom: Accepting it. I knew that something was

not right, but I was hoping that he would only be a

J Child Fam Stud

123

little delayed. I expected him to get better as he grew

up. But once I heard the word, ‘disability’, it was a

different story. I asked myself, ‘‘Why is this hap-

pening to me?’’

Mothers in this study also had held on to a belief that

‘their children’s disability can be cured’ if they tried hard

enough when the child was still young regardless of the

child’s condition. This belief ultimately operated as a

stressor rather than a hope. A below narrative of B’s mom

illustrates this point:

Right after receiving B’s diagnosis of Rett Syndrome,

I was doing something with her every moment I was

awake. I’d sing a song to her whenever she was

playing with her toys. I was doing everything that I

could think of to help her get better. The psychologist

warned that I needed to keep working with her for the

next 10 to 20 years, not 2 to 3 years. She warned me

that I would be worn out unless I paced myself. But I

thought 2 or 3 years would be just enough time for

her to get better. I never dreamed back then that I

would be doing the same things for 10 years. The

doctor was right.

Secondary Stressors: Children Grow Physically,

Cognitively, and Emotionally

In contrast to the abundance of studies focused on parental

experiences of caring for a young child with disabilities,

very little research has focused on mothers of older chil-

dren (Lounds et al. 2007). Even as the child gets older,

parents may still be involved in parenting tasks more typ-

ical in families with younger children (Murphy et al. 2006;

Raina et al. 2005). Also, physical and pubertal changes in

children (e.g., increase in body weight and height,

menstruation, and etc.) as they get older and heavier may

present new challenges for parents. In this study, several

mothers of children with physical disabilities indeed shared

the increased physical burden of caregiving as children got

older and heavier. N’s mother explained:

N weighs only 25 kg. Even though she is very small

and skinny for her age it feels so heavier when lifting

her from a wheelchair or carrying her around because

of her hypotonic muscle tones. So one day I screamed

out of pain. I know I shouldn’t, but sometimes I can’t

help it.

Physical and pubertal changes in children also changed

patterns of daily interactions especially between parents

and their opposite-gender children. Such changes further

created a change in parental roles, expectations, and par-

ent–child relationships. Changing roles of fathers were

particularly noteworthy. L’s mother mentioned that her

expectations for her husband’s participation in caregiving

changed as her son began to show signs of pubertal

changes. She stated, ‘‘I was the one doing everything to

take care of L. But as he got bigger, it was not natural for a

mother to wash such a big boy. So I asked my husband to

take that job.’’

On the other hand, K’s father was actively involved

actively in caregiving for his daughter. However, as K

turned 11, much has changed. K has non-epileptic seizures

with low cognitive functioning that she needs extensive

physical care. K’s mother elaborated on the change:

As she grows, it looks unnatural for a father to take

care of a grown daughter. K still needs help with her

toileting. Whenever she goes out, that’s the most

difficult task. Her father can’t take her to a public

restroom anymore. He used to carry her on his back

Fig. 2 A multifaceted model of

change and adaptation among

Korean mothers raising children

with disabilities

J Child Fam Stud

123

when they go out for a walk, but he is now self-

conscious about what others might think. Yet K is not

aware of others’ perspectives. So she still acts like a

baby and kisses her father’s cheek.

Increased self-awareness over time among children with

higher cognitive functioning also presented new chal-

lenges. Due to N’s well-developed cognitive functioning

and communication skills, N recently transferred to a full

inclusion classroom. However, N became more aware of

her physical limitation and its impact on her mother. N’s

mother shared her emotional pain in relation to N’s total

dependence in daily living, but at the same time, she was

deeply touched by how much N cares about her mother.

It really hurts whenever I think of what N used to say

to others. She often said, ‘‘I just want to die.’’ She

hated gaining weight, because she overheard other

people saying to me ‘How will you carry her when

she gets taller and heavier?’ Nobody asked her to eat

less, but N would refuse to eat in fear of gaining

weight and became seriously constipated.

Subjective Meaning and Appraisal: Reframed

Perceptions of Disability

Changes in mothers’ subjective perceptions did not take

place in vacuum but in the context of changes in their

children’s condition (i.e., secondary stressors) over time that

were already described above. Whether the child’s condition

improved or declined over the years, mothers in this study

learned to reconstruct positive meanings for their experience

with the child. However, for mothers of children with mild

disabilities, it was harder to let go of their initial hope for

cure and expectations for their child, which served as

another stressor. Mothers’ perceptions of self, personalities,

and their own meaning making process served as internal

mediators that contributed to how they perceived their

child’s disability now in the context of changing conditions.

Internal Mediators: Self-Perception, Personalities,

and Meaning-Making

Slow for Others but Exciting for Me Obviously, develop-

mental paths of children with disabilities are different from

that of children without disabilities. With extensive support

through education and therapies, some delayed domains of

development slowly got better or manageable to live with. J

is a 10-year-old girl with cognitive disabilities, who recently

began to say a couple of words. When she entered elementary

school, J’s mother quit her job and got involved in her school

work and speech therapy after school. J’s mother shared her

experience with a smile on her face. She was happy:

It’s fun to engage in short conversations with her. If I

ask, ‘‘Where do you want to go?’’ J replies, ‘‘Sta-

tionary.’’ Then I ask, ‘‘How many colored papers do

you need?’’ J answered, ‘‘One or two.’’ These

exchanges were not possible even several years ago.

It might seem slow for others, but exciting for me.

Our daily interactions became easier and more fun

because simple conversations are now possible. Her

changes made me happy. I feel happy these days.

A slow but steady expansion of J’s vocabulary and her

improvement in understanding of receptive language also

changed the way her family has rituals. J’s family rarely

dined out before because of her inability to remain seated.

However, now that J can follow simple directions and

behave in socially acceptable manners in public places,

family meals in nice restaurants have become a new ritual

that everyone enjoys. Likewise, small improvements that

parents of typically developing children often take for

granted helped these mothers make a more positive

appraisal of their current lives.

Steadily Mild, So Harder to Let Go On the other hand,

mothers of children with steadily mild disability conditions

had quite a different perception of their child’s disability as

the mildness of their condition allowed them to attend

general education schools just like typically developing

children. Subsequently, mothers could not let go of the

hope that their child might someday become like typically

developing peers at school if they tried just a little harder.

Such a pressure and high standard kept both mother and the

child in great tension. The tension can be more visible

especially when the children with disabilities are placed in

inclusive classrooms. Research shows that regardless of

their children’s disabilities, Korean parents want their

children to academically excel in schools (Kim and Kang

2003; Park et al. 2004). Such a high expectation for aca-

demic success must be understood in the context of edu-

cation fever (‘‘gyoyoukyul’’) (Grinker 2007), which refers

to Korean parents’ excessive desire and dedication for their

children’s educational achievement. Education fever is a

common feature of Korean parenting behaviors often

manifested in the form of financial support for private

after-school classes, pressuring children for higher test

scores, and serving as a dedicated personal manager of a

child (Yang and Rettig 2003). In other words, education

fever is more of a norm than an anomaly for Korean par-

ents. In this context, it was not shocking to see that a

child’s mild disability did not stop D’s mother from

emphasizing academic success for her child although she

struggled over parenting and schooling:

My brain is constantly 100 % filled with endless

thoughts about D. It’s hard to get away from

J Child Fam Stud

123

depressive feelings. He controls my whole life. I

spent every second with him to keep up with his first

grade classroom activities. If we try harder, I think he

can do as good as his peers. Sometimes I get him

prepared for a dictation test until 10 or 11 PM. It’s

overwhelming, but I can’t give up on him. But, it

seems like the harder I try, the more depressed I feel.

Getting Worse, but Very Proud Quite a few children in

this study showed significant declines in their functioning

over time. It is noteworthy that mothers of children with

worsening conditions or intensive medical problems

showed more positively reframed perception of the dis-

ability, compared to the mothers of children with more

mild disability conditions. Mothers of children with wors-

ening conditions were able to infuse ordinary events with

positive meanings as emphasized by Folkman and Mo-

skowitz (2002). Mothers did not compare their own chil-

dren with other children without disabilities. Instead they

focused on any smallest accomplishment of their children.

For instance, A’s mom shared how a small achievement of

her son with severe cognitive disabilities is so special and

makes her proud of him. She explained:

For mothers like me, the smallest things make me

thankful and happy. I think I have different expec-

tations for A compared to his sister who is healthy. I

feel happy when his sister gets A’s on her school

work, but way more happier and excited when A did

something by himself, like, trying to use a toilet tis-

sue to wipe his bottom in the bathroom. ‘‘Wow, how

did you do that? My son did it so well!’’

Embracing My Child’s Disability ‘‘Like We Eat Three

Meals a Day’’ During focus group interviews, mothers

often used phrases like ‘back then’, or ‘I used to…’ when

they referred to the time of early days of getting to know

the conditions of their child’s disability. These phrases

suggest that mothers now see themselves being in different

stages of the journey. They were no longer caught up with

unrealistic expectations for cure of their child’s disability.

Instead, they came to fully accept what their child’s dis-

ability is truly about, its prognosis and its long-term nature.

Such an acceptance led them to readjust their expectations

for their child and to accept the child as he/she is. It was as

though these mothers found calmness in the midst of the

life’s storm. One mother whose daughter is diagnosed with

cerebral palsy, articulately described the nature of a life-

long disability with two other mothers:

K’s mom: She was three when diagnosed with cere-

bral palsy. I didn’t think of ‘disability’, because the

medical connotation of cerebral palsy made me think

somehow that there will be a cure. I kept my belief

until she finished the kindergarten. Well, it’s much

harder to accept the fact that it cannot be cured than

the disability itself. So I changed some of my

expectations. I hoped that she could go out for

shopping and chat with me like what any mother and

daughter would do. Then I used to wish that maybe

she would be able to speak at least a few words. But

now I know that I have to let go of this little hope. So,

now, I don’t get upset or frustrated, but I don’t get so

excited, either. The therapies and medical services

become part of our everyday lives, like we eat three

meals a day. I can’t say my life is full of joy right

now but sorrow isn’t much part of it either.

J’s mom: I agree. It’s just part of our life now. But

that doesn’t mean that we gave up. Little by little. I

see tiny little changes, so I keep working with her.

L’s mom: For me, I was afraid that L would show no

improvement over time. Now, I am just thankful that

he is healthy, at least physically. I came to love him

just the way he is.

External Mediators: From Friends to Sisters, Brothers,

Aunts, and Uncles

Also significant in further reframing the child’s disability

and redefining Korean mothers’ caregiving experience was

the role of informal support from other mothers of children

with disabilities who also participated in this study. None

of the mothers in this study mentioned their extended

family members as the source of informal support as they

felt their child’s disability created distance from other

family members. Instead, they have come to create and

build another family of their own with other mothers who

shared the same pain and burdens. Shared experiences in

the context of social isolation brought these mothers and

even the fathers closer together and this union has gradu-

ally taken a meaningful place in their lives.

H with a hemiplegic cerebral palsy recently transferred

to a special education school from an inclusive classroom

in general education school due to difficulties of managing

increased amount of school work and some behavior

problems. At the time of the focus group interview, it had

only been several months since H began to attend a special

education school. H’s mother was struggling yet again with

having to accept her son’s disability for the second time

because of the transfer. During this stressful time, the

support from other mothers, whom she now considers as

her sisters, was like a lifeline for her. For instance, during

the focus group interview, G’s mother expressed her frus-

tration and sense of deep sorrow on account of H’s mother.

Two of them had met each other when their children were

J Child Fam Stud

123

attending an integrated preschool and developed a sister-

like relationship for the last 6 years. H’s mother called G’s

mother ‘‘Unni’’, an older sister since G’s mother is older.

Their children also call the other mother ‘‘Imo’’, an aunt in

Korean. Imo is often used casually to refer to close friends

of the mother. G’s mother and H’s mother along with other

mothers whom they met through their children’s school

gradually became close over the years and their casual

gatherings naturally became a great source of informal

support for the mothers who came to be involved in this

informal network.

Fathers’ participation in mothers’ informal social net-

work was also notable in this study. K’s mother explained

how fathers got involved in their special group of mothers:

It just happened naturally. It was one evening when

several mothers were together with the children at my

house. It was close to a dinner time and we figured

that it would be too late for us to each go back home

and prepare dinner for family. My husband came

home and he said, ‘‘Why don’t we just invite all of

the fathers to come and have dinner here?’’ So we

ordered some food and had dinner together. It was the

first time for father to meet one another. They clicked

that night and became good friends. I guess they felt

safe and comfortable to talk to one another. My

husband does not say explicitly, but he mentioned

that as a father of a child with disability, there is a

sense of failure. I think that for men it is important to

keep their inner feelings inside. Fathers do not talk

about their child in public, yet they need space to

share their emotions and experiences.

The essence of togetherness among fathers was best

captured by the conversations between H and G’s mothers

below. Just like mothers had formed sisterhood, the fathers

also built their own brotherhood with one another over the

years by sharing meals and spending holidays together. As

the bond got strengthened over the years among not only

the mothers, but also the fathers, their interaction resem-

bled that of one big intimate family.

H’s mom: I think fathers meet up with one another

outside from time to time. They get along very well.

It is common for mothers like us to get together, but

it’s not easy for fathers.

G’s mom: Well, they all have common pain, raising

children with disabilities. It’s not easy for men to

get along like that, but I think they have gotten to be

more than just friends. I think there is a big brother in

the group with younger brothers.

H’s mom: Who’s the big one?

G’s mom: They call each other ‘Hyungnim’(older

brother) and ‘Awoonim’(younger brother). When we

go out for weekends or holidays for barbecue, fathers

take turns for preparing meals and playing with kids

so that we could take some rest.

H’s mom: Sometimes I think they have way too many

meetings. (laughs) Wasn’t the gathering originally for

us? But now, it seems like it’s them who are enjoying

one another’s company more than we do. Remember

last summer when we had a family retreat? They

went fishing together, so we had to play with the kids

while they were gone.

Caregiver Adaptation: Growing Together with Children

Mothers Have Grown Over Time as An Individual: ‘‘I Now

Look Forward to My 40’s’’

All mothers in this study shared that the changes their

child’s disability brought to their own lives helped them

grow over time as a person. Many agreed that they have

become more open-minded and have new expectations for

life as a person apart from life as a mother. O’s mother

went through such a transformation over the years. When O

was diagnosed with autism at a very young age, she tried

out every treatment option available for her son. Like most

mothers in this study, she also went through early years of

disappointment and anxiety over her son’s life. Because O

had behavior problems during those early years, she took

on a full-time caregiver role with no time available for

herself whatsoever. When O entered preschool, she was

able to have some time for herself at least during the day. It

was during this time when she began to do some volun-

teering work at a local center for human rights for people

with disabilities and she enjoyed it. She spent more time at

the center and learned about the work. Her personal interest

in the subject motivated her to attended workshops and

open-lectures whenever possible. O’s mother said:

I am 38 now. It’s been about 3 years since I began to

feel like I’m really living. It’s enjoyable. Until that

time, I was living my life as a mother. Now, it’s

different. I enjoy learning new things in my life. I

can’t wait until I turn 40. I feel like I am a grown up

now, finally. I now look forward to my 40’s.

Overall, mothers of children with severe disabilities in

this study have found some comfort around their child’s

disability and meaning in their own lives. During focus group

interviews, they frequently used the words, such as ‘happy’

and ‘grateful’ when sharing their experiences of everyday

lives. Below K’s mother describes how much she came to

appreciate things in life that seemed small or trivial before:

Caring for K wears me out, but it also makes me happy.

I am thankful that she doesn’t get any worse. I am

J Child Fam Stud

123

happy that she is accepted as part of my family and my

husband’s family. I don’t mean that I am thrilled with

happiness, but I go day by day and take little things as

they are in my days. One day for instance, I just lied

down on my couch watching TV, I felt happy, for that

brief moment of being completely free. Little things

like that are just enough to make me happy.

Discussion

This study applied the caregiving stress process model

(Pearlin 1989) to understand a dynamic process of changes

and adaptation over time among Korean mothers raising

children with disabilities. It was clear from the focus group

narratives that not just the mothers but every family member

experienced changes over time, including their children with

disabilities. Children and parents gradually became different

people in terms of expectations and perceptions of disabilities

over the years of closely interacting with each other. As time

went by, children’s disability conditions got better or worse.

Some children with higher cognitive function became aware

of their own disability condition and its impact on their par-

ents. Further, as they got older, physical growth and transition

to adolescence emerged as new challenges that the families

had to embrace. In line with the lifespan developmental per-

spective (Honzik 1984), the results of this study also illustrate

that not only the children, but also the adult parents continue to

mature and develop through the experience of parenting. The

mothers became more open-minded and self-reflective

through the process of actively reconstructing the meaning of

parenting for themselves in the context of these changes. It

was also noteworthy that these mothers have developed spe-

cial long-term relationships with other mothers who have

similar experiences of raising children with disabilities. Their

special relationships grew into more like extended families by

exchanging caregiving responsibilities and sharing meals,

weekends, and holidays together.

Previous research noting positive contributions that children

with disabilities make to their parents (Grant et al. 2007) points

to a need for taking bidirectional perspectives when studying

parent–child interactions (Mol and Buysse 2008). In this study,

the child’s disability and changes associated with it over time

served as fertile soil for mothers to redefine and reframe their

child’s disability and to grow and transform into a better and

happier person. Such a reciprocal nature of parenting has

important implications for experts in parenting education and

professionals working with families of children with disabili-

ties. We suggest that it might be an effective strategy to help

parents in their practice to see parenting as an opportunity for

their own growth, rather than a one-way phenomenon (from

parent to child).

As noted by Folkman and Moskowitz (2002), the co-

occurrence of positive affect with negative affect was con-

stantly expressed by mothers in this study. However, the

level of perceived stress and the degree of positive versus

negative affect expressed varied between mothers of chil-

dren with mild disabilities and children with severe and

worsening disabilities according to the disability status of the

child and its changing conditions over time. If the disability

was severe (e.g., a child with cerebral palsy with low func-

tioning), it was more visible and ironically easier to make

others recognize the difficulties of caring. If the disability

condition was mild (e.g., a child with cognitive disabilities

and related behavior problems) sometimes it was hard to

recognize for others to understand the challenges of daily

interactions with the child. Mothers of children with severe

disabilities in this study demonstrated resilience by

expressing more feelings of happiness and finding joy in the

child’s smallest accomplishment because they learned not to

compare their children with other typically developing

children without disabilities. On the other hand, mothers of

children with mild disabilities expressed less positive affect

and more feelings of guilt, frustration, and depression,

because they constantly compared the status of their child

with typically developing children. As our findings suggest,

mothers of children with mild disabilities have unique needs

and challenges that are different from those encountered by

mothers of children with severe disabilities. It is possible that

the mild nature of the child disabilities may prohibit these

mothers from seeking support, thus outreach effort should be

made to include them in intervention programs for parents of

children with disabilities.

The mothers in this study shared their stories of how

they managed to live their personal and family lives with

varying degrees of support from their informal social net-

work. Relationships that they built over the years with

other mothers of disabled children naturally took on the

shape of a supportive and intimate extended family where

they shared not only meals and holidays, but also the

burdens of parenting their children with special needs. The

origin of such communal practice can be found in the

Korean collectivistic tradition of exchanging labor (pum-

asi). Pumasi was a common practice especially among

close neighbors (iutsachon, which literally means a

neighbor cousin) in rural villages where they helped one

another not only with farming, but also with child care and

housework, during a busy farming season or when there

was a big family event or tragedy. In that era, if you lived

in the same village, you were considered as cousin even

though you did not share the same blood line, which the

term iutsachon originates from. Our informant’s new

family of sisterhood reflects a modern day version of

pumasi and iutsachon among Korean mothers of children

J Child Fam Stud

123

with disabilities. These mothers shared practical (e.g., child

care, useful information) as well as emotional labor (e.g.,

caring for and comforting one another, celebrating as a

family, and being aunts, brothers, and sisters to one

another), which eased the psychological burden carried by

mothers raising children with disabilities.

As we delved into the beginning of these informal net-

works, we were able to connect the dots between formal

support and informal support as well as public policy and a

tradition of pumasi among iutsachon. Although the child

care policy (e.g., Special Education Promotion Act in 1994,

Child Care Law for Infants and Young Children in 2004)

was originally intended to increase the overall birth rate in

Korea by lessening the burden of care for families of young

children in need, the families of children with disabilities

got the most benefit from this policy. In order to lessen the

burden of caring children with disabilities, the Korean

government expanded community-based daycare facilities

and inclusive preschools for children with disabilities over

the last 10 years. Because of this policy, most of the

mothers in this study were able to send their children to

such community-based daycare centers or inclusive pre-

schools with no cost for parents. Also, it is noteworthy that

it was through these community-based child care programs

or inclusive preschools that mothers in this study were able

to gradually build informal networks of support in the first

place. Given that the informal support network played a

significant role in mothers’ adaptation over time, our

findings highlight the importance of creating a social

context in which mothers can casually meet other mothers

in similar circumstances through community-based pro-

grams and form support groups to exchange information

and help. A public policy, such as Child Care Law for

Infants and Young Children, should be in place that can

offer the context in which mothers can begin this process of

building informal support network early on rather than

later. Without the community-based daycare facilities for

children with disabilities and inclusive preschools where

families in this study first met years ago, the informal

mother-to-mother, father-to-father, and family-to-family

networks may have not been possible. The stories of

informal support group underscore the importance of

engaging in the community-based system of care for chil-

dren with disabilities during early childhood years in

Korea.

In conclusion, this study shed light on the process of

changes within changes that occur over the years as

mothers, fathers, and children changed in the context of

child disability in Korea and how these changes contrib-

uted to adaptation particularly among mothers. Our results

add to research by showing how Korean mothers of

children with disabilities are active navigators rather than

passive recipients of their fate. The mothers in our study

not only engaged in active meaning-making for their

child’s disability and their caregiving role, but also pro-

actively used formal services to build a meaningful infor-

mal social support network. Perspectives of fathers were

only indirectly examined through mothers’ narratives in

this study. Thus, a reasonable next step in research might

be to conduct focus group interviews with fathers. Changes

in this study were assessed by the mothers’ retrospective

narratives collected at one point in time. For more in-depth

exploration of changes, more longitudinal studies are

needed to follow a group of parents over time.

Acknowledgments Support for this research came from the

National Research Foundation of Korea (NFR-2011-413-350-

20110028) in partnership with the Ministry of Education, Science,

and Technology in South Korea.

Appendix

See Table 2.

Table 2 Topics and Sample Questions for Focus Group Interviews

Elements of the

caregiving stress

process model

Topic words Sample questions

Primary stressor The first time Describe when you first

found out about your

child’s disability

Being a mother

of a child with

a disability

What was it like to be a

mother of your child?

How is it now?

Challenges What are some challenges

of being a mother of a

child with a disability?

Secondary stressor Changes in child What kinds of changes do

you see in your child?

How did these changes

affect you, your child,

and/or your family?

Appraisal and

subjective

meaning

Changes in

perception

How has your perception of

motherhood, your child’s

disability, and life

changed over time?

External mediators Support and

resources

Where do you get support

and resources?

Internal mediators What helps me

go on

What helps you go on

despite the challenges?

Caregiver

adaptation

Evaluation of life How do you evaluate your

life as a person and as a

mother now?

J Child Fam Stud

123

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