International Journal of Disability, Development and EducationVol. 55, No. 1, March 2008, 2741

ISSN 1034-912X print/ISSN 1465-346X online 2008 Taylor & FrancisDOI: 10.1080/10349120701827961http://www.informaworld.com

The Perceptions and Experiences of Taiwanese Parents who have Children with an Intellectual Disability

Mei-Ying Changa and Roy McConkeyb*

aNational Taipei College of Nursing, Taiwan; bInstitute of Nursing Research, University of Ulster, Newtownabbey, Northern Ireland

Taylor and Francis LtdCIJD_A_282912.sgm10.1080/10349120701827961International Journal of Disability, Development and Education1034-912X (print)/1465-346X (online)Original Article2008Taylor & Francis551000000March 2008Professor RoyMcConkeyr.mcconkey@ulster.ac.uk Most research into family care-giving has been undertaken in western, English-speakingsocieties with little cognisance taken of possible differences across cultures. Home-basedinterviews were conducted with 117 mothers and fathers in Taipei City, Taiwan and five mainthemes were identified using content analysis. Three themes expressed the impact of the childon family functioning, parental health, and levels of stress and two themes described parentscoping strategies and sources of support. Although these themes broadly replicate findingsfrom other cultures, certain features of TaiwaneseChinese society appear to accentuate theimpact on mothers especially of having a child with an intellectual disability. The implicationsfor the provision of family-centred services are discussed, especially in helping parents torecognise their strengths and coping capabilities, and to promote their influence in changingcultural attitudes.

Keywords: attitudes; Chinese culture; intellectual disability; mental retardation; parents; Taiwan

Introduction

Intellectual disability or mental retardation occurs in every nation, with families often providinglife-long care to their affected relative. Most research into family care-giving has been undertakenin western, English-speaking societies. Latterly there has been a growing interest in cultural differ-ences within countries, but as yet there is a relative paucity of research in Asian and less-developednations (Blacher & Mink, 2004). This is surprising given the well-documented variations in familysystems across cultures (Berry, Poortinga, Segall, & Dasen, 2002).

However, exploration of cultural differences is fraught with difficulties. Broad racial group-ings, such as Asian, ignore the significant ethnic diversities that may exist among subgroupsand even within these subgroupings, for instance among Chinese peoples (Yongling, 1991).Language differences create an additional obstacle, as concepts in one culture may not easilytranslate into another (Mink, 1997). Moreover, attempts to use standardised measures or scalesacross different cultures may not be valid if they have been developed and tested solely withinone culture (Berry et al., 2002).

Nonetheless, a study of the same phenomena across different cultures, such as parenting achild with an intellectual disability, enriches our understanding of a shared experience andaccrues greater insights into the diversity of responses that humans make to different situationsand of the influences that may determine their reactions.

*Corresponding author. University of Ulster, Jordanstown Campus, Shore Road, Newtownabbey, County Antim, BT37 0QB. Email: r.mcconkey@ulster.ac.uk

28 M.-Y. Chang and R. McConkey

Taiwanese Culture

Taiwan is an island state of 22 million people founded in 1949 by the Republic of ChinaGovernment in response to political revolution in mainland China. Taiwanese culture is a blendof its distinctive Chinese heritage and western influences. In Taiwan, over 90% of people withan intellectual disability live at home with their families (Huang, Qiu, & Li, 2000). MostChinese families wish to care for their relative because they feel it is their duty to do so. Being aright and proper person is central to the social role within Confucian-based, Chinese society,and obligations and honour are extremely important among Chinese people (Holroyd, 2003).Most feel shame and loss of face if any member of family has done something wrong or hasfailed in learning, a career, or interpersonal relationships with others outside the family (Szalay,Strohl, Fu, & Lao, 1994). Traditionally, Taiwanese people view the family as the essential basicunit of society that is more important than the individual. Chia-ho-wan-shih-hsing, a popularChinese proverb, means that a harmonious family can accomplish almost everything as long asevery family member is willing to function as a part of the whole, rather than independently(Braun & Browne, 1998).

The concept of the preservation of harmony also affects family decision-making in severalways. People may be less willing to share bad news within the family because of disruption to itsharmony. Furthermore, they may endure hardship and pain and be more likely to keep theirwishes silent, especially if they believe their true desire would inconvenience another person ordisturb the group.

Traditional Chinese people believed that spirits and fate influence health (Chen, 2001). SomeTaiwanese beliefs invoke the concept of karma as a specific explanation of the causes ofdisability or disease. Under Buddhist belief, the soul exists externally, materialising in an endlesssuccession of temporal existences in a variety of forms of life. As one form of existence is endedby death, the soul transmigrates to another form of life. Each violation of moral axioms causesseeds of revenge in the form of misery in the new being. This brings societal stigma and henceparents may not want relatives or friends to know about their child who has an intellectuallydisability. They may feel inferior to other people, do not want to take part in social activities, andgradually become isolated from society (Zhou, 2000). Even so, the majority of Buddhists usuallygive a positive meaning to suffering. They believe that if people can tolerate all the painfulexperiences caused by disease, they will receive a better reward in heaven after death. In addition,they believe that the accumulation of good deeds through compassion will enable them to reachhigher states of being in the world of eternal life (Sheng-Yen, 2000; Shih, 1996).

Service Provision

Although special education provision is provided in Taipei City, early assessment and interventionservices are usually limited to medical practitioners, and parents typically must make active effortsto seek out and pay for additional services such as therapies. Few service programmes have beendesigned to provide support to the families of children with disabilities of the kind that areprovided in many western countries (Sloper, 1999). Respite care services are rarely available. Notsurprisingly, then, many families report a reliance on informal supports, primarily from familymembers (Zhou, 2000). Means-tested, financial benefits are available, however, to families whohave a Disability Certificate based on a medical diagnosis.

Research Aim

To date, the growing body of research in Taiwan into disability and families has tended to focuson quantitative research methods using scales developed mostly in the United States. In common

The Perceptions and Experiences of Taiwanese Parents 29

with studies in other Chinese cultures, these have reported high levels of stress among mothers(Ong, Chandran, & Peng, 1999) and maternal ill-health (Huang, 1999). Chinese mothers arereputed to use a variety of coping styles (Cheng & Tang, 1993), which broadly replicate thoseproposed by Lazarus and Folkman (1984) in their pioneering research in this area. However,parents own accounts of their experiences in bringing up a Taiwanese child with intellectualdisabilities are lacking. Hence the primary aim of the present study was to describe the percep-tions and experiences of parents in Taipei City, Taiwan, as recounted by themselves, of livingwith a child who has intellectual disabilities. This information would add to a greater under-standing internationally of what it means to parent an exceptional child and the adaptationsfamilies make when doing so. More specifically, the insights gained would also help to informthe development of culturally appropriate, family-centred support services that are beginningto emerge in Taiwan. The study may also serve as a model for similar studies with differentcultures or ethnic groups.

The Study

An emic research strategy was adopted that aimed to build up a picture of the culture in its ownterms. This is a necessary step before embarking on the more complex task of cross-culturalcomparisons (Hatton, 2004). Following Maganas (2000) recommendations for researchingcultures, a five-step process was followed. First, the study had a specific focusnamely,parents in Taipei City who had a child with a diagnosis of mental retardation as defined bythe educational system and who attended special schools or classes. Moreover salient issues inparenting a child with intellectual disabilities were identified from past research and incorpo-rated into the information gathered. Second, the researcher was from the informants culture butwas a sympathetic stranger to the family. Third, random sampling was used in issuing invita-tions to parents and a large sample was sought so that within-culture differences could also bedetermined. Fourth, a pilot study had identified home-based interviews as being an acceptablemethod to families; although it identified their reluctance to be audio-taped and this had to berespected. Fifth, the data analysis was conducted thoroughly, with checks made by externalassessors from the culture to ensure the consistency and validity of the resulting categorisationof themes.

The study included both qualitative and quantitative methodologies. The findings from thelatter are reported in another article; notably the inter-relationships among parental responses andcomparisons between Taiwanese parents and those from Irish and Jordanian cultures (McConkey,Truesdale-Kennedy, Chang, Jarrah, & Shukri, 2008).

Recruitment of Parents

The inclusion criteria for the study were parents living in Taipei City with a child (aged 717years) at home with a diagnosis of mental retardation. All children were studying either inspecial education classes of primary and junior high school or in special education schools.

Twenty-one schools in Taipei city were selected at random. Potential participants (N = 540)were informed in writing by school staff about the purpose of the study and the procedures to beused, the confidentiality of their information, and their freedom to withdraw at any time. Ifparents agreed to meet the researcher, they gave their telephone number and contact address tothe childs teachers who then passed them on to the lead researcher. In all 117 parents werewilling to be interviewed (22% of those approached), which represented approximately 11% ofthe total population (N = 1063) of children with mental retardation studying in primary andjunior high school in Taipei City at that time (Department of Budget, Accounting and Statistics,

30 M.-Y. Chang and R. McConkey

2002). Of necessity, it was a self-selected sample and all parents were included to facilitate thequantitative aspects of the study.

Sample

Of the 117 children in the study, 72 were boys (61%) and 45 were girls (39%). Their ages rangedfrom seven to 17 years with a mean of 12 years. Although all were assessed as having mentalretardation, they included the following associated conditions: autism (19.7%), cerebral palsy(13.7%), Down syndrome (11.1%), epilepsy (10.3%), and attention deficit and hyperactivitydisorder (4.3%).

In total, 117 parents were interviewed; 86% (n = 98) were mothers and 14% (n = 19) werefathers, with ages ranging from 30 to 58 years (M = 42 years). The majority of participantswere married (85%; n = 99) and 51.3% of the parents had part-time or full-time jobs. Most werenuclear families (67%), consisting of one or more parents and their children, but 33% wereextended families. In terms of religion, 49% of parents were Buddhist, 20% other religions, and31% reported no religion in the family. In all, 38% (n = 45) of parents had a tertiary education,with 18 parents (15%) holding only primary education or no education qualifications. Mostfamilies (74.7%) had a lower monthly income than the average in Taipei City (NT$110,000;GB2.000 per month) and home ownership was also lower than average in the Taipei City (65.8%compared with 80.2%) (Department of Budget, Accounting and Statistics, 2002).

Ethical Considerations

At the time of the study there were no appropriate ethical committees operating in Taiwan, soapproval was sought from the Nursing Faculty at the University of Ulster, Northern Ireland.

At the beginning of the interview, the researcher explained the purpose and significance ofthe study and obtained the parents informed consent to participation. Parents were assured thatall information they gave was confidential to the researchers and no one would be identified inany reports. A pilot study had identified parents reluctance to the interviews being audiotaped sothe lead researcher (first author) explained the reason for taking notes and the silences that mightensue as she did this.

Parents were reminded that they could refuse to answer any questions or to terminate theinterview without giving any reasons. No one would be told if this happened. It was made clearthat the researcher could not assist the family, but if requested she would try to put the familiesin touch with people who could be of assistance. Parents could also have a report of the findings.The lead researchers name and contact details were provided in writing if parents wished tocontact her after the interview. These statements were also given in writing and parents wereasked to sign their consent prior to the interview starting. All agreed to do so.

Interview Process

All the interviews were conducted by the first author on a single occasion and lasted an averageof two hours, but some took up to three hours. They were conducted in a private room in thefamily home. This setting was intended to put the families at ease, and it also gave the researcheran opportunity to observe the family circumstances and see how members interacted with oneanother. Many parents commented that this was the first time anyone had come to their home toenquire about them and their child.

Usually the interviews were with mothers alone but on some occasions both parents werepresent. Their responses were treated as one participant. In 19 instances, fathers were the main

The Perceptions and Experiences of Taiwanese Parents 31

informants as they were the childs primary carer. On occasions other relatives and children werein adjacent rooms.

General conversation was used at the beginning to build rapport with the parents. This lednaturally into the parents talking about the child with the disability. A free-flowing conversationstyle was adopted although the researcher used interview skills such as asking for further clarifi-cation, utilising critical awareness, encouraging amplification, and refocusing on the intensity ofthe respondents feelings (Kvale, 1996). Trigger questions and probes were used to ensure thatsalient topics were covered. These included: What have been the positive or negative effects ofcaring for a child with disabilities on your family? How has this affected you as a parent? Howdo you manage day-to-day? What help have you had from the family, from outside the family?Which types of help/support would you find most useful in helping you care for your child? Howdo you see the future?

The researcher recorded the parents answers as detailed notes. Immediately after each inter-view, she reviewed and elaborated these field notes; adding in further details to assist in the inter-pretation of the parents comments. Many parents appreciated the opportunity to talk inconfidence about their experiences; and often they did so very emotionally.

After a break, the parents then completed a number of ratings scales either on their own orwith the interviewer. Contact details were left with the families if they wished to discuss furtherany of the issues raised by the interview.

Data Analysis

The researchers notes and observations for all 117 interviews were analysed using thematiccontent analysis (Guba & Lincoln, 1983). This approach was chosen as it fitted most closely withthe aims of the study. All the different themes were logged and example quotations were identifiedthat best exemplified the theme. This was the first level of analysis.

The second level involved identifying superordinate themes under which various subthemesappeared to coalesce. A selection of transcripts (20% of the total) were also analysed indepen-dently by two Taiwanese nursing colleagues who were familiar with qualitative research butwho had had limited experience of families who had children with disabilities. Working fromthe transcripts of individual interviews they were asked to confirm the themes that had beenidentified by the researcher, identify any that may have been overlooked, and to make their ownsuperordinate groupings of them. The researcher and the two assessors then compared anddiscussed the identified themes and groupings until agreement had been reached on the resultingschema (see Figure 1).Figure 1. Superordinate groupings and subthemes identified in parental responsesAll the other transcripts were then re-read by the researcher alongside the final agreed list ofsuperordinate categories and subthemes to ensure this covered the parental experiences that hadbeen generally expressed in the interviews (Burnard, 1991). This ensured that saturation had beenachieved for the overall schema in that no new subthemes were forthcoming (Morse & Field,1996). Only at this point were the categories and themes translated into English from Mandarin.Cross-translations were used to confirm that the meaning had been retained.

In sum, this process of data analysis enhanced the construct validity of the categorisationmethod and acted as a safeguard against researcher bias.

Results

Figure 1 summarises the superordinate groupings and subthemes identified in the parentalinterviews. Three of these superordinate groupingsfamily functioning, parental stress, andparent healthreflected the impact of having a child with disabilities in the family. Two other

32 M.-Y. Chang and R. McConkey

superordinate groupingsparental coping and social supportappear to reflect how parents reactto these impacts. Each superordinate grouping will be discussed in turn.

Family Functioning

Parents recounted both positive and negative impacts that the child had on the family. Threesubthemes were considered to be positive impacts. For example, parents related how the presenceof the child had strengthened family cohesion. One mother said:

We turn to each other for support in stressful situations, and he has brought us closer and increasedunderstanding and tolerance. My son has helped him (husband) understand my spirituality.

This emphasis on bringing families together may be a practical response to the lack of otherassistance but it is in keeping with Chinese cultural traditions to which the families sometimesalluded.

Other parents spoke of how they had increased opportunities for personal growth and achieve-ment:

My husband and the other children take part in household chores. They are also learning how to takecare of my son; everybody has a sense of responsibility. My son has really made all of us grow asindividuals, as a family.

Parents gave various examples of how they have responded to the childs needs, and spoke witha sense of pride in their accomplishments:

There were a lot of knowledge and care skills I needed to learn. I went to many places to learnhow to take care of my child; I learned whatever I could from different health institutes orcommunity resources. I cannot find anyone who can teach me how to be a better mother to mychild now.

Figure 1. Superordinate groupings and subthemes identified in parental responses

The Perceptions and Experiences of Taiwanese Parents 33

Other parents reported that the child had served as a catalyst for an enhanced and renewed senseof reverence of life:

My son has given us a lot of difficult times but we have also had a positive and rewarding life experience.The miracle is there that he enriched our life more than we ever thought. And it made me respect lifemore; I am more understanding and more giving.

Together these three subthemes underline the positive impacts that a child with intellectualdisability can have on families. However, these positive impacts were counter-balanced by threenegative impacts in terms of family lifeand these generally dominated the interviews. Onetheme related to poor communication about emotions and feelings among family members. Themajority of parents commented that they often concealed their negative emotions (e.g., feelingupset, angry or anxious) instead of speaking out. For example:

I think our married relationship stayed the same. He can support material life but not our emotionallife. In some ways, he is really good with the kids. But I cannot talk to my husband about my feelingsand sadness; he always avoids discussing our fears and concerns. When he comes home, the onlywork for him is watching TV.

The reasons parents gave for not expressing their feelings was that they were afraid to hurt some-one unintentionally or to cause embarrassment. Although these feelings are not unique to aChinese culture, they may be heightened in this society.

My mother-in-law thinks that is my fault, and my husband doesnt say anything. I live with myhusbands extended family but I feel I am alone in the whole world and there is no one else. No onedeals with my pain, and it never goes away.

Parents also spoke with a sense of sorrow about the child. Many relived the tragic eventsaround the birth of the child and the growing realisation of the implications it had for their lives.They spoke of the child they had hoped for and the sadness of what their son or daughter willnever be able to do. These feelings were often compounded by family circumstances. As onemother recounted:

When the child was born, my husband asked for a divorce and did not give financial support to us.Because of my daughter I cant get a job. Our money is from the government and my brother, but itis just enough to get by. I think the child has brought much sorrow to us.

A third theme related to other siblings in the family. The majority of parents said that theirother children experienced mixed, and sometimes contradictory, feelings. They perhaps feelguilty or sad when their brother or sister is unable to participate in a particular activity or event.Some siblings felt embarrassed having a child in the family who is ill, disfigured, or disabled asit marks the family as different. Parents spoke of the siblings shame. For example:

Her brother began to feel unhappy and dissatisfied with his disabled sister after studying in juniorhigh school. I think that many families would encounter the same problem as us. He thought it wasshameful to let others know about his sister with mental retardation.

Although some siblings experienced negative feelings, others demonstrated less hostility andanger toward the impaired sibling than they did to their other brothers and sisters.

His sister treated him very well, she sat next to him and taught him how to write his homework.She told me she loved him, because he is her brother But she quarreled with her other sistereveryday!

The positive and negative impacts of child-rearing co-existed in nearly all families. Fewmentioned only one or the other. This is the same with most families but the tension may beheightened in families with a child who has an intellectual disability and they may persist forlonger as most of these parents have to undertake life-long care.

34 M.-Y. Chang and R. McConkey

Parental Stress

A second main theme to emerge from the interviews was the stress that parents personally expe-rienced. The four subthemes identified the different sources of stress reported by parents,although it should be emphasised that not all of these themes were present in all families.

One of the most recurring themes was pessimism about their childs future. In Taiwan,employment and independent living services for children with intellectual disabilities have notbeen well developed. Hence, many parents were concerned about the childs ability to take careof herself or himself away from the family and were concerned about placement when the childfinishes school. One father summed up his feelings:

He looks so handsome and smart, he is more like a non-disabled child. Unfortunately, no matter howhigh he functions, there is no way the community system can take care of him when I die. I feel badand sad.

The majority of parents reported that another important concern was their child getting hurtby other people. This included emotional, psychological or physical abuse.

Sometimes, some classmates trick him, and ask him to do something dangerous, take advantage ofhim, cheat him. I am always worried that they [classmates] would hurt him.

There was a sense of helplessness when parents spoke as they recognised that they cannot be withtheir child at all times to protect them.

I am very worried in case my daughter is abused sexually. She should have tubal ligation. I dont wantmy daughter to have an adverse fate.

A third source of stress was their childs behaviour. Various parents reported instances ofviolence and destructiveness, inappropriate interpersonal manners, self-abusive behaviour,antisocial behaviour, hyperactive tendencies, temper tantrums, screaming, and wandering off.These had a strong impact on their daily lives.

When he passes through the place its just like a typhoon, he throws away anything he sees. Everythinghas to be locked in the cabinet or it is broken. He pulls my hair and everything. I know he has problems,but it is difficult to manage his behaviour.

A fourth source of stress for other parents was a perceived lack of support either from otherfamily members or from services. Many recounted feelings of being on their own and of havingno one to turn to for help.

I hoped I would get some help from the doctors, but I got nothing from them actually. I dont knowwho can provide us more information about whats available and where from. I feel like we were leftin the dark.

Parental Health

A third major theme was also evident for parents; namely their personal health and well-being.Some reported psychological or emotional problems whereas others recounted physical healthdifficulties that may be psychosomatic.

Some mothers and fathers mentioned a range of emotions associated with taking care of theirchild with intellectual disabilities, such as hopelessness, depression, grief, anger, withdrawal, andinadequacy.

I have got a lot of roles, which include mother, wife, daughter, daughter-in-law, teacher. I spendmost of time in taking care of him and have less time to handle my other childrens daily living activities,I neglect my father/mother, father/mother-in-law, and friends and so on. I am filled with guilt at havingfailed in every role which I should play.

The Perceptions and Experiences of Taiwanese Parents 35

Other parents also spoke of the physical effort and strain in taking care of their child, especiallyif their child had a profound disability. Some mothers had suffered long-term physical illness andphysical change, mentioning constant fatigue, and sprains. One mother referred to a slipped disc:

It is hard work indeed. I carry him to the hospital. And you know that I have to go upstairs and down-stairs at home, bathe him, turn him. He is a big child. Every day I ache all over with fatigue. Thedoctor told me I have a slipped disc; I need to wear a brace for my lumbar spine.

Many tried to hide their feelings and ill-health from their family. For example:

It seems I am pretty good every day, but I am actually upset all the time; I lie in bed at night and crybut nobody knows that. I dont feel as strong as everybody thinks I am; there are many days I feel likeI am losing my confidence and hope in life. I am withdrawn from life, and nothing seems to matteranymore. However, we still live with a cloud hanging over our family. I cant imagine life withoutproblems.

Parents appeared more concerned to preserve an appearance of normality rather than admit tohaving needs of their own.

I work worst under pressure, but I dont allow myself to get angry and cry. I keep almost everythinginside. I dont want my emotional bewilderment to affect my son, and I think I am tougher than myhusband. However, I cant deal with it anymore. I feel short of breath, and have palpitations andpressure in my chest.

Parental Coping

In the interviews we were interested to learn how parents coped with family difficulties, stressand health problems. Some did not appear to think that they did anything specialit was just amatter of having to do what they had to do. Others described various coping strategies. Thesewere grouped into three subthemes, as Figure 1 shows.

Proactive Behaviours

Parents described taking action in order to achieve an adjustment or resolution to the difficulty.The methods they used were seeking formal and informal sources of social support, making plans,facing up to their problems, developing specific skills related to the intellectual disability, helpingother parents, and sharing feelings with other families. One father said:

We must become stronger, because we need to solve a lot of problems by ourselves. It is impossiblethat we could manage everything by ourselves. So we started a small family business for our child towork in with the family.

Acceptance

Acceptance was another coping mechanism adopted by some parents. They would try to solveproblems through accepting the disability and its consequence for the family, looking on thebright side of things, reframing the problem to focus on the abilities of the individual and familyrather than their limitations, accepting fate, developing realistic expectations for the disabledchild, and comparing their situation with that of others and realising that they were better off.

The acceptance of my son as he is, took a long process. Then you start to cherish the child in newways and build again in reality. He is sweet and gentle, he is our child and well take care of him.

Lack of acceptance was also a feature in certain families.

My husband is a doctor, he probably loves him, but he does not accept the responsibility. He doesntlet his colleagues or friends to know he has a special child. If we go out or have friends come to thehouse he always sends my daughter to my sisters home.

36 M.-Y. Chang and R. McConkey

Distractions

Other parents mentioned distractions as another way of coping, namely finding things to take theirmind off their problemsthey sought outlets outside of the family, they kept busy, and theylooked for things they wanted to do that would help them to relax. Examples included engagingin an activity with friends or engaging in a hobby, such as shopping, travelling, watching televisionor movies, doing exercise, and visiting the temple.

Sometimes, I feel bad, I know thats an omen of stress. Then, I went to gymnasium for swimmingthat cheers me up again. Sometimes, when I felt very frustrated and sad, I went shopping or didsomething else, such as being a volunteer in school or community. Then, I could get over my painfulexperiences after being away from him and the stressful environment.

Social Support

Throughout the interviews, parents referred to the reactions of other people; often mentioning thenegative responses they had experienced, as well as the support given to them by others.

Social Isolation

From their responses, it appeared that many parents experienced several types of loneliness orisolation, such as loss of friends and relatives, and loss of social life and position. They reportedfeeling cut-off from all friends after they had their child. They also explained that one of theobstacles they encountered was social stigma. For example:

I dont attend temple, I dont feel there is a place for us. They told me about the karma. They saidyou and your son suffer from disability because you have sinned. These kinds of things occurred. Itwas a direct statement that we must have sinned to have something like this happen. Thus, you carrythat pain with you, and it never goes away.

Some parents stated that they had lost their own lives; it has been taken over in caring for their child.

I am so exhausted every day because she gets up in the middle of the night. I have a full-time job, itis so hard, and I never realised how hard it would be.

However, some parents mentioned various sources of support they had received from othersand, when asked, most could think of a range of support they would value. These fell into twomain categories, which we have termed formal and informal support.

Formal Support

Some parents identified several meaningful resources and supports for their children, such asschools, and mentioned the help they received from teachers.

The most helpful advice I got was from a teacher who told me to love my son as much as I could, buttreat him as normally as possible. Even he [the teacher] cannot solve my problems but it helps whenhe took the time to talk with me.

More often, however, parents spoke about the problems of finding social support in Taiwan.Many parents had tried without success to get help from different professionals or institutes.Other spoke of the extra stress this could bring. Some parents stated that they could not even beginto explain how many uncaring health professionals they had had to cope with. They were verysensitive to the issues of professional dominance. One father recounted how his interactions withprofessionals had left him feeling frustrated and degraded.

I dont understand what he [doctor] said. He uses jargon, and he seems very busy. His answers willnot change the fate of my son, so I just listen and I dont ask any questions. Professionals always

The Perceptions and Experiences of Taiwanese Parents 37

look down on parents. They think they are the experts and the parents should do everything theysay. I think the expert is the parent, not a stranger [professional]. Professionals should respect parentsand should listen to what they say.

One mother said that she met with such negative experiences for many years so she developedthis attitude:

All I know he is my son, and I will take care of him by myself.

Informal support

The majority of parents believed that the encouragement they received from families, colleagues,and friends was very important, and often more helpful than that received from professionals.They felt the support from families and friends could reduce their stress and keep them going inthe future.

We [parents of classmates] have similar experiences in rearing our children; they can understandsome of my pain and understand it is a difficult time for me. Hearing and talking with other parentshas helped me cope successfully.

Sometimes, however, families and other parents are unavailable or inaccessible. For example:

My family is my most important support resource, they enrich my life in countless ways also.Sometimes, I share feelings with my husband or other children. Sometimes, I tell my sisters andmother about my problems. But it is impossible to speak about each episode always, because theyhave their own problems.

Similarly, contact with relatives may also be a source of stress.

I have already become numb. My mother-in-law and relatives could not accept him. They were afraidto see him due to his strange behaviour. I am very sad they think in this way, so I keep away fromthem more and more.

In summary, many parents did mention the support available to them but often a sense ofdisappointment pervaded their replies as these did not fully meet their needs and they had to relyon their own resources. Concerns about the future were voiced:

We dont know what will happen with him after he graduates from school. We cannot stop worryingabout his future. We dont know what will happen to them when they are in the society with normalpeople? Who can provide a job for him? And who can take care of him after we die? I always think,who will take care of my son if I were gone?

Discussion

Although this study has one of the largest samples of TaiwaneseChinese parents reported to datein the literature, it cannot be claimed to be wholly representative of Taiwanese society. Parentswho were unwilling to take part in the study, those whose children did not attend school, and thoseliving in rural areas of the country were not included. With the latter parents, certain additionalthemes could emerge or greater weight may need to be given to those themes identified with thepresent sample.

There is also the risk that the themes identified in the present study were influenced by theresearchers knowledge of past findings and these perceptions were imposed on to the parentsresponses. However, we tried to mitigate this by using two colleagues unfamiliar with the topicto check our thematic groupings. Also the number of themes identified here is greater than thosereported in comparable studies with smaller groups of parents (e.g., Holroyd, 2003; McCollum &Chen, 2003).

38 M.-Y. Chang and R. McConkey

However, these methodological weaknesses have to be set against the wealth of informationthat was elicited, albeit against our initial expectations that parents may be reluctant to speak to astranger about such emotional issues. Indeed, many parents positively welcomed the interest thatthe lead researcher took in their situation and were prepared to speak freely about the dilemmasthat they faced. Arguably, this is one of the most important lessons to come from this study forservice personnel interested in creating more family-centred services.

Parental Dilemmas

The word dilemma summarises the parents experiences well. Nearly all of the major themesidentified in Figure 1 contained both positive and negative factors. For example, parents spokeof the rewards of having a child with intellectual disabilities, while also recounting thenegative impacts on family life; a finding also reported by McCollum and Chen (2003).Parents described the value of social support while also remembering the stigma and isolationthey had experienced. Although studies in other countries have also identified these samedilemmas (Turnbull, Brown, & Turnbull, 2004), they are perhaps heightened in Taiwanesesociety through the cultural expectations placed on families and to which they alluded(Holroyd, 2003).

Indeed what is most striking about the data from this study is that all the major themesidentified in Taiwanese parents responses are those that have been commonly reported in theliterature from other countries (Hatton & Emerson, 2003). This would suggest that the impact onparents and families of having a child with a marked intellectual disability outweighs any culturalvariations that otherwise may influence parenting practices and experiences. Hence these parents,and possibly mothers especially, experience higher levels of stress and have poorer emotionalwell-being and physical ill-health than they would otherwise do if their child did not have adisability. Equally they appear to rely on similar coping strategies and in finding support fromothers to help them in their caring roles.

Universal Parental Responses

Acceptance of this argument, implies that there is a universality in much of the literature onparenting; at least across modern technological societies, and possibly also to more rural, agrariansocieties, although these have been rarely studied. It is then a false hope to think that any societyor culture copes better than any other with bringing up a child with intellectual disability, andconsequently they may have little need for family support services. Rather, the presumption mustbe that all parents, the world over, will require assistance.

That said, some parents do manage better than others. The main themes we identified reflectthe totality of the experiences that all the parents shared with us, but the salience of each majortheme and subtheme varied across families. For example, some families seem to experienceminimal social isolation whereas for others this was a dominant reaction that heavily influencedtheir lives. Given the nature of the qualitative research approach we used, we could not easilymap the characteristics of families or parents to certain themes. Nor could we examine the inter-relationships among the themes to address hypotheses such as: Does increased social supportlead to reductions in parental stress? This was the focus of a parallel study in which quantitativemeasures were used to explore these and other relationships (McConkey et al., 2008). However,it is our impression that although there were some common associations, these are outweighed bythe uniqueness of each family. This implies that service personnel should focus on formulatingindividual family plans, informed through dialogue with parents (Sloper, 1999), rather than rely-ing on assumed relationships.

The Perceptions and Experiences of Taiwanese Parents 39

Taiwanese Issues

There are three facets of the data that are worthy of further debate, discussion, and research asthey seem especially pertinent in Taiwanese culture.

Firstly, the poor communication that was apparent among family members is an importantissue. The Taiwanese style of silent communication relies on an implied understandingbetween people of that culture. But when this is allied with pressures on preserving harmony, thiscan create additional strains on parents, and mothers especially. Indeed there is some limitedevidence that stresses are greater among Chinese mothers compared with those in other cultures(Ong, Chandran, & Peng, 1999). Poor communication can also lead to misunderstandings amongfamily members and a lack of agreement on the plan of care (McLaughlin & Braun, 1998). Thisissue is worthy of further research, as it appears to have received little attention to date.

Second, the impact on siblings and their reactions to the affected child is an important issuefor Taiwanese families. Traditionally, parents expect their sons to provide for them in old age, butthis cannot happen if the son has an intellectual disability; an additional source of sorrow forparents (Holroyd, 2003). Hence the role of other siblings becomes more crucial and yet they maybe reluctant to assume their responsibilities if they find it difficult to accept their disabled sibling.The stresses on parents are then all the greater, not just for the present but for the implications thishas for the future.

The link between increased maternal stress and childrens problem behaviours is well estab-lished in the wider literature (e.g., Hastings, Daley, Burns, & Beck, 2006). Taiwanese culture hasparticular expectations as to how children should behave, especially in the company of elders.Thus, not only are the behaviours themselves stressful for mothers, but they are compounded bythe additional pressures of non-conformity to cultural norms. There is then an additional pressureon mothers to hide the child, and maybe even a reluctance to seek help with the problem.

Although these three cultural impacts are not unique to Taiwanese society, they do raise thechallenge as to how cultures can adapt to make more positive responses to children with a disability.Foremost in creating change is the influence of parents particularly when they have come togetherin associations (Turnbull et al., 2004). Underpinning their efforts has been the positive aspectsfamilies have experienced in having child with a disability that were evident also in this study.For example, the child could be a source of joy and happiness in the family and have a positiveimpact on others in the community. Also the childs accomplishments may take on special meaningin light of the obstacles they face, and families have an increased sense of purpose (Hastings, Allen,McDermott, & Still, 2002). Marsh (1992) also noted that family members who cope with thechallenges associated with intellectual disability are likely to discover unexpected resources withinthemselves and their families, along with further opportunities for personal growth and fulfilment.

It is families with sufficient internal resources that have been to the fore in identifying infor-mal supports or seeking professional assistance, although these are not always helpful (Dunst,Trivette, & Deal, 1998). Nonetheless the influence of these supporters is another force for change.

Of course, cultural groups are not homogeneous; every racial and ethnic group contains greatdiversity, and membership of a culture may not reflect an individuals attitudes and beliefs. Thistoo can create a climate of change as minority voices are heard more clearly.

In summary, societal changes have to come from within cultures and often they must beinstigated at a personal and community level. This may explain the length of time required forattitude change to happen across societies and nations.

Parental Support

In Taiwan, many parents are reliant on informal supports mainly from their families as supportservices and community resources for children have not been well developed. Parents showed

40 M.-Y. Chang and R. McConkey

widespread dissatisfaction with professional services, and noted a lack of accessible and availableprovision that was poorly coordinated or integrated. In relation to professionals, they reportedpoor communication, impersonal and insensitive intervention, and a lack of technical competenceand specialist knowledge. The findings are consistent with some reports from western countries(Dale, 1996).

Arguably the greatest need is for professionals with training and experience in family-basedservices that will benefit the family as a whole unit and not just target the child with the disabil-ity (Zhou, 2000). Moreover, quality professional care requires understanding and respect fortraditional values; a willingness to listen to families and to work in partnership with them (Hock-enberry, 2003; Kuo & Kavanagh, 1994). In this respect, the present study is possibly both amodel as to how professionals might approach families as well as giving an insight into the lifeof families. Equally, the perspective of Taiwanese professionals is worthy of further study; anexample of which is the study by Chang (2003) with school nurses.

Conclusions

The impact of children with an intellectual disability on Taiwanese families is wide ranging andseems to reflect common experiences in other cultures. Moreover, Taiwanese society placesparticular expectations on these mothers. It is argued that the positive experiences of parents,allied with the proactive coping strategies that many parents have evolved, can provide a basis onwhich cultural perceptions about disability can occur, which in turn will reduce the stresson parents. This needs to be supported by professional and service systems that are at least familyorientated if not family centred.

Acknowledgements

This research was undertaken by the first author for her doctoral degree. The authors thankcolleagues at the National Taipei College of Nursing for help with data analysis, the school staffwho facilitated access to families, and to the participating parents. Roy McConkeys post isjointly funded by the Eastern Health and Social Services Board.

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