Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2016, 29, 46–57
Caregiving Experience for Children with Intellectual Disabilities among Parents in a Developing Area in China Xue Yang*, Victoria Byrne† and Marcus Y. L. Chiu‡ *Department of Psychology, The Chinese University of Hong Kong, Hong Kong, Hong Kong; †Centre for Research in the Social Sciences, University of Huddersfield, Huddersfield, UK; ‡Department of Social Work, National University of Singapore, Singapore City, Singapore
Accepted for publication 24 November 2014
Background By utilizing grounded theory methodology, this study attempted to fill a gap whereby little research explored family caregiving perspectives in China where public support is insufficient and familial responsibility is highly valued. Methods Data were collected through the qualitative methods of interviews and observations among a purposive sample of 15 parents of children with intellectual disabilities in central China. Results The central idea emerging from the data encompassed five broad categories of caregiving experiences: (i) unavoidable caregiving responsibility and (ii) uncertain future as the greatest worries which
Introduction ‘Mental retardation’ or ‘intellectual disability’ has been classified into mentally illness by the Chinese Classification of Mental Disorders, 3rd revision (CCMD3), which is the Chinese diagnostic guide for mental disorders (Kwok et al. 2011), and is defined in accordance with international diagnostic systems (American Association of Intellectual and Developmental Disabilities 2011; World Health Organization 2011). According to the latest National Sampling Survey on Disability in 2006, there were more than 1% of residents in China (more than 13 billion) living with intellectual disabilities, which accounted for 11.9% of the entire population with disabilities (Kwok et al. 2011). As high as 84% of the children with intellectual disabilities had never received service such as rehabilitation training or community-based care (Zhang & Ji 2005). The majority of people with disabilities depend on their families to © 2015 John Wiley & Sons Ltd
are the perception towards the recipient; (iii) compromising quality of life and (iv) positive roles of caregiving tasks which focus on the self; and (v) community support which is the perceived support from the external system. Conclusion A recursive relationship existed among these categories. Chinese culture and traditional beliefs dominated throughout these issues. The implications and limitations of this study were discussed. Keywords: Chinese cultures, intellectual disabilities, parents
grounded
theory,
survive and develop (Tang & Li 2010; World Health Organisation 2011). Nevertheless, little research comprehensively and qualitatively explored the family caregiving experience in China, except for the study on the needs of parents in a developed city in South China (Wong et al. 2004). With the use of focus group interviews, five themes/areas of needs were revealed, including parental, informational, attitudes towards the child, coping and support. However, how they perceive their caregiving tasks, roles, benefit finding or loss in the Chinese context is still largely unknown. Chinese cultures may influence both how to understand intellectual disability and familial responsibility. Individuals manifesting themselves insanely or bizarrely are often pejoratively called ‘shazi’ (idiot) and shunned by the Chinese public because of their violations of the Confucian, such as ethic filial piety (Lam et al. 2010). Confucians also conceptualize all members of a family as one body (Yang & Kleinman 2008). Thus, it is the 10.1111/jar.12157
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moral duty of family members to take care of people with disabilities, and they even feel self-blame for the onset of the deviance (Chiu et al. 2015). This study is to contribute to this body of work by comprehensively exploring parents’ caregiving experience in China where community and social support are limited and particular cultures are valued. This issue is important because caregiving tasks can hurt parents with such as lifelong caregiving strains (Carter & McGoldrick 1988; Haveman et al. 1997; Haley & Perkins 2004), high expense of caregiving, employment problems and damaged family relationships (Shearn & Todd 2000). Particularly in respect of their social life, they have to deal with the socio-structural constraints and public stigma towards intellectual disability (Green 2007), which puts them under greater stress (Baxter et al. 2000) and results in a lower quality of life and poorer well-being than non-caregivers (Chou et al. 2009). In contrast, some studies have reported that caregiving experience may relate with positive perceptions, such as a sense of fulfilment (Kearney & Griffin 2001), personal maturity and reinforced bonds between caregivers and recipients (Hastings et al. 2002). Therefore, it is meaningful to explore the source of these conflicted feelings and how they treat and integrate their caregiving role and other roles as a whole. The narrow focus on individual burdens of or benefits from caregiving can lead to a biased and incomplete understanding of their experience. This study, guided by the grounded theory, addresses the questions why the different even conflicting perceptions occur and how the factors at external and cultural levels colour or entangle personal experiences.
Methodology The present research broadly followed an interpretative, constructivist approach to grounded theory (Charmaz 2006; Dunne 2011). Central to this approach is the recognition that individuals construct the world in different ways, and concepts are generated from empirical data and reflect the interaction with the local context, rather than grounded on existing literature or preconceptions of the researcher. Initial themes were generated purely from the data and with minimal assumptions, but were then checked and consolidated with existing literature. New themes were put to test in subsequent interviews. By constant comparison of data gathered throughout the whole research process, a theory is built up around a core category and related categories (Glaser & Strauss 1967). The need for a © 2015 John Wiley & Sons Ltd, 29, 46–57
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qualitative study into the caregiving experience in China has been informed by earlier studies (Chiu & Hung 2006; Chiu et al. 2013) and is made possible by a generally more open attitude towards research among healthcare and education officials. To comprehensively identify the issues specifically related to regional situations and cultural beliefs over time, this study adhered to this approach as a way in which to study the caregiving experience of parents of children with intellectual disabilities.
Study setting and participants This study used a purposive sample of parents of people with intellectual disabilities living in Henan province, central China. Parents were eligible if they (i) lived with their children with intellectual disabilities in Henan province, (ii) identified themselves as the principal family member providing day-to-day care to the relative with intellectual disability at home, (iii) did not suffer from a life-threatening illness that would prevent them from continuing in the caregiving role over the length of the study, (iv) were not financially reimbursed for caregiving activities and (v) had been a caregiver for a minimum of 6 weeks prior to the study (Kim et al. 2003; Chiu et al. 2013). Because there is a lack of recorded information in relative institutions, caregivers and their family members with intellectual disabilities were mainly identified through four government-funded special education schools. The four schools are located in the three major areas of Henan province which are regarding as developing areas of China, and we got contact with the parents under school managers’ help and with the parents’ permission. Additional participants were identified through the snowball sampling method. The investigator visited and assessed the selected parents in their homes with permission from them. Demographic information of the caregivers who met the criteria was recruited. The study participants selected were given an overview of the study and asked to identify mutually agreeable times for in-home interviews. The study sample was continually snowballed until no new theme emerges. The saturation was reached with a sample size of 15. This sample consisted of 10 mothers and five fathers of children with intellectual disabilities. They ranged in age from 38 to 55 years. One was divorced (caregiver D) and others were married. Time dedicated to providing care ranged from 12 to 24 h per day. The children with intellectual disabilities ranged in age from 6 to 18 years
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old. Three had a sibling without intellectual disability and others were single child in the family. All were diagnosed as having moderate degrees of intellectual disability by medical professionals (Table 1).
Data collection and analyses Data collection and analyses were processed from February to April in 2012. Ethics approval was obtained from the University Research Committee, and the researchers kept their procedures under review to comply with research ethics and the Declaration of Helsinki (http://www.wma.net/en/30publications/10policies/ b3/). Participants were interviewed individually in Mandarin by the first author. The interviewer started with the questions that ‘What have you experienced when caring for your child (with intellectual disability)?’ and ‘What do you think of it?’ On hearing initial response, the interviewers used further probing questions to encourage them to elaborate their stories (e.g. ‘Why did you think so?’ and ‘How did you react to/cope with it?’). Participants’ demographics, such as age, self-reported socioeconomic status (SES), residence and their child’s gender, age and the number of siblings, were recorded. Each interview lasted from 40 min to 1 h and was audiorecorded with informed consents. The audio records were later transcribed with the removal of possibly identifiable information. To enhance the credibility of analyses, initial open codes were discussed and cross-checked with another
researcher, together with the memos and field notes information. Data collection and data analyses were conducted concurrently using the constant comparative method, whereby new information gained from participants is constantly compared with that of data already received (Strauss & Corbin 1998). Data received from the interviews were transcribed verbatim into English and examined by the primary researcher and a research assistant who are both Chinese–English bilingual. Keywords used by participants were coded as substantive codes and then categorized independently by them. During the data analysis procedure, new codes or categories were added when new information or themes were identified. Necessary revisions of code titles and criteria for the categories were ongoing during coding for a final conditional matrix. Upon completion of their separate coding, meetings and discussions to compare and negotiate researchers’ coding and categories were conducted. Different categories were negotiated and criteria for categories were devised if necessary and appropriate. Two British researchers who had experience of qualitative research read the findings and affirmed the coding and categories were appropriate.
Findings Five broad categories of caregiving perceptions describing the process in which Chinese parents
Table 1 Demographics of participants and children with intellectual disabilities
Caregiver
Age
Relation
SES
Residence
Gender (Intellectual disability)
Age (Intellectual disability)
Sibling (Intellectual disability)
A B C D E F G H I J K L M N O
44 46 38 40 40 45 50 52 48 50 42 47 49 55 43
Mother Father Mother Father Mother Father Mother Mother Mother Mother Mother Mother Father Mother Father
Low High Low Middle High Middle Middle Low High Middle High Middle Low Low Middle
Rural Urban Rural Urban Urban Urban Urban Urban Urban Urban Urban Urban Urban Rural Urban
Male Male Male Female Female Male Male Female Female Male Male Male Male Male Male
15 17 7 6 12 12 18 18 13 16 9 17 15 18 8
Elder brother Single child Single child Single child Single child Single child Single child Single child Younger sister Single child Single child Single child Single child Younger sister Single child
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maintain care for children with intellectual disabilities at home were identified: (i) unavoidable caregiving responsibility and (ii) uncertain future as the greatest worries which are the perception towards the recipient; (iii) compromising quality of life and (iv) benefits of caregiving for the self; and (v) community support which is the perspective on the external system (Figure 1). These categories represent three concerns and systems in ecological model, that is the intrapersonal system, interpersonal system and external/macro system, and they may interact with one another to strengthen or weaken the effects on caregivers.
Unavoidable caregiving responsibility for the recipient All 15 participants considered caregiving for the child with intellectual disability as an unavoidable responsibility, and it has become an integral part of life. They explained their caregiving activities mainly related to providing daily care, study assistance and emotional support for children with intellectual disabilities and help them in relation to improvement/rehabilitation. It was a routine fully integrated into their lives that they would continue as long as possible.
Daily care Although caregivers expressed that the daily care task is very tedious and cumbersome, they told their stories with no sense of resentment. As I said: Needless to say, it is my duty to care for my daughter’s daily life, such as cooking for her, dressing her, washing her clothes, and preventing her from hurt. I am her mother. These are what I should do. No one can do it better than me. Every parent would do the same thing for their child. M also remarked, ‘Although the caregiving task is cumbersome, I can handle it. Actually, I have to. It is a necessary part of my life, as a parent’.
Study assistance Three caregivers emphasized study assistance for their children with intellectual disabilities as an important part of their caregiving task. J and M expressed similar experience of having expectations for their children with intellectual disabilities as high as for other children without
Toward community
Toward recipient Unavoidable caregiving responsibility: -Daily care; -Study assistance; -Emotional supports; -Helping for improvements /rehabilitation. Uncertain future as greatest worries: -Financial, emotional, and daily care providing; -Marriage paradox.
Figure 1 The central theme and related categories. © 2015 John Wiley & Sons Ltd, 29, 46–57
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Community support: -A lack of financial and professional support; -Holding hope for service improvement.
Caregiving perceptions of Chinese parents of children with intellectual disabilities
Toward self
Compromising quality of life: -Trapping own ambitions; -Damaging social connections; -Conflicts in self-concepts; -Daily emotions and well-being. Benefits for the self: -Attachment; -Psychological resilience.
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intellectual disabilities. They had to put in extra effort to help their children study after school, which increased the pressure. K described her psychological and behavioural changes as a study assistant to her son as follows: At first, I did not want to admit that he [her son with intellectual disability] could not study as well as other children without intellectual disability. So I put lots of efforts into his study. I always accompanied and supervised him until he finished the homework. But it was difficult for him in concentrating on the study. I had to teach him again and again, no matter how easy the work was. Gradually, I have accepted the fact. Now I just hope that he can read some Chinese characters.
Emotional supports All participants mentioned that they played the most important role in meeting the emotional needs of their children with intellectual disabilities. As principle caregivers, they also needed to play the role of friends and help children with intellectual disabilities regulate their emotions. L reported: He [her son with intellectual disability] likes chatting and making friends. But children without intellectual disability would not like to make friends with him and often laughed at him. So I have to be his only friend. I often accompany him to give him feelings of warmth and love. M mentioned, ‘To keep my son from loneliness, I always play and chat with him once I have free time. I want to give him courage to live in the world and live happily’.
Responsibility for improvement Some caregivers mentioned their efforts to help their children with intellectual disabilities to make improvements as a part of caregiving tasks. Focusing on the responsibility for improvement/rehabilitation was also a dynamic that made caregivers maintain their caregiving tasks and make healthy decisions. O explained how he tried to create more chances to help his son [with intellectual disability] improve his living skills, such as taking him outside to talk with others and teaching him to do some simple housework. E said, ‘I let my daughter play piano and hope she can find a way to
express her feelings’. She still held the hope that her daughter can learn a skill to care herself and to live independently in the future, as she mentioned that ‘Maybe she [the daughter with intellectual disability] can play piano to make herself money for basic survival’. This concern was also related to the future worries that mentioned below.
Uncertain future of the recipient All participants remarked that the uncertain future of their children with intellectual disabilities made them confused and was their greatest concern. The possible problems for the future included providing financial, emotional and daily care after current caregivers died, and the marriage paradox of people with intellectual disabilities. These uncertainties resulted from the public stigma towards people with intellectual disabilities and the lack of social support for them.
Provision of financial, emotional and daily care in the future Caregivers worried that no one would hire or care for people with intellectual disabilities and that public discrimination would hurt their children. A shared her feelings as follows: I cannot help sighing whenever I think about my child’s future. It is always a big rock in my mind. I have no idea about what he can do independently once he enters the society. No one will want to employ him because of his incompetence. I having a 13-year-old daughter said: Although she [her daughter with intellectual disability] can do some simple housework, like sweeping and washing, she still needs someone to support her daily life financially and emotionally, and to protect her from being bullied, after I die.
Marriage paradox Caregivers stated concerns over the marriage issue of people with intellectual disabilities after the child reached adulthood. All three caregivers of children with intellectual disabilities aged 18 reported that the marriage issue became a common topic within their families. Because traditionally parents highly valued family and marriage, they hoped for their children to get married as the normal. On the other hand, they had © 2015 John Wiley & Sons Ltd, 29, 46–57
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Tang J. & Li J. (2010) Studies of the Social Services System for Disability in Guangdong [in Chinese]. The Research Publisher, Beijing. Todd S. & Shearn J. (1996) Time and the person: impact of support services on the lives of parents of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 9, 40–60. Walden S., Pistrang N. & Joyce T. (2000) Parents of adults with intellectual disabilities: quality of life and experiences of caring. Journal of Applied Research in Intellectual Disabilities 13, 62–76. Wong S. Y., Wong K. S., Martinson I., Lai C., Chen W. J. & He Y. S. (2004) Needs of Chinese parents of children with
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developmental disability. Journal of Learning Disabilities 8, 141–158. World Health Organisation (2011) World Report on Disability. World Health Organisation. Available at: http:// www.who.int/sdhconference/declaration/en/ (5 February 2015). Yang L. H. & Kleinman A. (2008) Face and embodiment of stigma in China. Social Science & Medicine 67, 398– 408. Zhang X. & Ji C. Y. (2005) Autism and mental retardation of young children in China. Biomedical Environmental Sciences 18, 334–340.
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Benefits for the self Caregivers in this study reported positive effects of caregiving tasks, including increasing attachment with their children with intellectual disabilities and psychological resilience.
Attachment Parents mentioned caregiving tasks increased child– parent attachment based on time spent and experiences shared with their children with intellectual disabilities. For example, L said, ‘I spend most of my time with him [her son with intellectual disability]. No matter where I go, I take him with me. I felt he needs me. He only trusts me’. Attachment was bidirectional. N talked about her sense of dependence and attachment to her son [with intellectual disability] as follows: We have gone through a lot of things together. He always took my hand and stayed with me. Ordinary children always start a new life and leave their old parents alone when they grow up. I feel that we will never abandon each other.
Psychological resilience Caregivers reported that they felt less fragile and more psychologically resilient when confronting life difficulties and learnt how to live in a sustainable and balanceable way after the chronic caring task. Two caregivers mentioned that they have psychologically accepted the fact that they used to deny, adjusted their expectation towards life and their children with intellectual disabilities to a more realistic one and felt grateful and self-compassionate. O said, ‘I am grateful and sincerely happy even if my son just makes a little progress’. When they felt that they can successfully adjust themselves and master caregiving tasks, they perceived more self-confidence and self-empowered. For instance, I remarked, ‘Life was tough, but I overcame it. I am more qualified to say I am tougher’.
Perception of community support Lack of financial and professional support Generally, participants did not support from the public participants mentioned that financial aids and professional
perceive any significant and government. All they mainly needed guidance about how to
care for their child with intellectual disability appropriately. C explained her financial difficulties caused by the high expense of rehabilitation services in the past years. Most families like us [who have a child with intellectual disability] are not rich, because our savings have mostly been spent on medical treatments for the child’s disability. The hospitals providing rehabilitation services are far away, in the developed cities. So we had to pay for traveling fee and spend lots of time. D remarked, ‘I hope there are professionals who can tell me how to deal with the child with intellectual disability effectively. I feel confused about the current situation and the future of our whole family’. In this study, the children with intellectual disabilities did not receive constant provision of rehabilitation services. Most caregivers gave up on medical treatments for children with intellectual disabilities after they entered school. However, caregivers often found that the education in special schools was not professional or useful. G explained her observations and concerns as follows: Teachers in the special school did not major in special education or even education. They are just like babysitters who look after the children and play with them. My son will have to graduate from the school. But he learnt little skills. I do not know what he can do after entering the society.
Holding hope for government Although caregivers perceived little community support, they still held hope for government that policy makers would pay more attention to this vulnerable group and improve the public service and welfare provision in the future. O said, ‘I believe the public care system will develop well before I get too old to take care of him [his son with intellectual disability]’. I shared her information and confidence in relation to governments’ support. I know the national government has implemented some policies to improve the quality of life of families with children with intellectual disabilities. There are some professional schools and service institutions for people with intellectual disabilities © 2015 John Wiley & Sons Ltd, 29, 46–57
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and their associates in several developed cities, such as Beijing. They will be available in the developing areas in the near future.
Discussion Caregiving at home is a challenging task for caregivers, and their perceptions are always interwoven with a local context and values (Chiu et al. 2013). Guided by the grounded theory, the current study identified five themes in the caregiving experiences among caregivers from a developing area of China. These themes are much richer in description and more complicated in meaning than a previous study performed in a very developed city (Wong et al. 2004). The caregiving stories in this study are more dynamic and cannot be simply summarized as either negative or positive. We discuss these themes and their relationships from the perspectives of the self (intrapersonal system), the recipient (interpersonal system) and the community (external/macro system), respectively (Bronfenbrenner 1977).
Caregiving concerns towards the recipient In accordance with the report of WHO (2011), support and assistance from outside the family (e.g. communities and governments) in the developing areas was scarce. Chinese parents were the primary source of support (i.e. daily care, study assistance, emotional support and rehabilitation care) for children with intellectual disabilities. Furthermore, the majority of caregivers showed a supportive attitude towards their caregiving task and considered it as an unavoidable parenting responsibility. These findings were consistent with previous studies in Asian cultures which valued kinship and familial responsibility (Wong et al. 2004; Mak & Ho 2007). It is not unusual that study assistance was highlighted as a caregiving task by the Chinese caregivers, because of the high family expectations for children’s academic performance in Chinese tradition. Thus, the extra efforts to assist children’s study and attempt to fulfil the family expectation turned out to cause more stress and disappointment for parents. It is also worth noting that caregivers in this study not only felt responsibility for basic needs of children with intellectual disabilities but also to their rehabilitation and improvement. This all-round obligation is less likely grown out of the practical demand from the context. Rather, it points to more deep-rooted role expectations © 2015 John Wiley & Sons Ltd, 29, 46–57
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that are encapsulated in the culture, which sustain the caregivers to go against all odds in fulfilling one’s perceived duties. Prior research has suggested that perception of responsibility for improvement has a dynamic function to promote caregivers’ healthy behaviour and positive adaption (Moulton et al. 1987). However, perceiving responsibility for children’s rehabilitation could also be driven by the high family expectations and might result in psychological pressure for caregivers. Cross-culture studies should be conducted to explore whether the two types of caregiving tasks are more culture-related behaviours and their complicated effects on caregivers’ well-being. It is interesting to find that majority of caregivers mentioned that their greatest concern or difficulty was about future life of their children with intellectual disabilities (i.e. future caregiving provision and marriage issues). It differed from previous studies which only focused on current difficulties and needs in daily caregiving tasks (Wong et al. 2004; Li et al. 2012). These future concerns may lead parents to a chronic anxiety and depression (Haley & Perkins 2004) and even drive some parents into the decision of marrying the child with intellectual disability to a stranger as a perceived solution to secure future caregiving for him or her. Future studies should explore caregivers’ mental health issues and their irrational behaviours. The dilemmas between morality and social expectation and problems surrounding marriage of people with intellectual disabilities, though not quite described by this study, should receive more attention in future studies.
Ambivalent perceptions of caregiving and consequences on the self Although the tedious caregiving task has become routine and regular in caregivers’ daily life, it still affect their perceptions and self-feelings profoundly and intricately. Parents in this study reported both negative and positive caregiving perceptions and consequences on themselves. Although some were also noted in Western studies, their ambivalence might be amplified when interwoven with cultural beliefs. The strong sense of ambivalence among caregivers seems to be oscillating between the deep conviction that they have to take care of the child with disability and the clear awareness that there is not much they can rely to fulfil their duties. We have no objection to any attempt to strengthen their sense of family responsibility and morality, and they have a sacred mission to
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achieve, but we shall not exploit such personal conviction or to justify inactions not to develop further supports for them. There is no doubt that these fatalistic ideas may have positive impact, making them more ready to psychologically accept their caregiving role and difficulties without resistance. However, collectivism and interdependence, through valuing relationship and important others in self-concepts, might have also put caregivers’ mental well-being at a higher risk for those who took the responsibility for their children’s disability and experienced feelings of shame facing other family members (Chiu et al. 2013). Research on ambivalence also demonstrated that when people have both positive and negative attitudes towards an object and have to choose how to react to or treat it/him will feel unpleasant and anxious (van Harreveld et al. 2008). However, crossculture studies found that ambivalent perception was associated with better subjective health and fewer physical symptoms among Asians than Americans because the former are more tolerant with dialectical emotion (Miyamoto & Ryff 2011). This leads to a particular concern on the ambivalent feelings and attitudes towards the caregiving task and the recipient generated by caregiving burdens, kinship and parental responsibility in future studies, given the multiple facets of Chinese cultures. Whether the ambivalence is a buffer or extra burden for their well-being deserves further study. Social restriction on own ambition and career was highlighted by all of the fathers instead of mothers. Because the social expectations and masculism often stress achievement, emotional control and autonomy on men (Barbee et al. 2010), fathers who are primary caregivers at home might perceive more restriction on their expressions and feelings, social roles, selfappraisals and willingness to seek support. In accordance with prior research (Kayfitz et al. 2010), mothers as the traditional role of caregivers perceived less negative experience or conflicting feelings. Todd & Shearn (1996) categorized the parents who feel their ambitions curtailed as ‘captive’ and it was found that these parents reported greater parental stress and pessimism than captivated parents who find purpose and contentment within their parental role (Walden et al. 2000). This study may provide one potential mechanism that why parents feel captive and more stressful in their caregiving. Future studies should further explore fathers’ stories as caregivers, their ambivalent feelings generated and amplified by social/moral/cultural expectations for a man and a father in the patriarchal society, and how to help parents become captivated.
In accordance with Western literature (Kearney & Griffin 2001; Hastings et al. 2002), caregivers perceived closeness and parent–child attachment. However, whether the relationship quality would moderate this positive perception needs further investigations. In addition, this study found that caregiving tasks might strengthen psychological resilience for those who have successfully adjusted to this task. Long-term caregiving appears to have made, gradually over time, one accept the role, adjust oneself to the stress and develop better skills to cope with the challenges. It makes caregiving become a part of a routine which is fully integrated into their lives. As the adaptation model (Lazarus & Folkman 1984) suggests, the more time spent experiencing a source of stress, the greater the adaption to this challenge. Future studies need to examine the potential moderator, acceptance and adaption, between caregiving difficulties and psychological resilience as well as identify which factors would facilitate their acceptance and adaption.
Perceptions of community and social support Because raising children with intellectual disabilities usually involves great challenges and requires specialized caring knowledge and skills, the lack of adequate social support and professional instruction may vary family caregiving experience (Green 2007; Bousso et al. 2012; Rempel et al. 2012). In relation to previous research, the findings with regard to the financial burden and the lack of professional support that the participants felt showed similar results (Shearn & Todd 2000; Ouyang et al. 2010). Interestingly, conditional matrix suggested a potential recursive relationship among categories (i.e. caregiving perceptions towards the recipient, self and community, see Figure 1). Perceiving the lack of community support can increase their caregiving burdens and feelings of insecurity in the future and reduce their quality of life and psychological well-being. In turn, their perceived burdens may strengthen their belief that the government have done very little to provide trainings, opportunities and safeguards for people with intellectual disabilities to live dependently and safely. Admittedly, even in the developed areas of southern China where community and social support are relatively available and accessible, parents still reported a lack of support for them and their children (Wong et al. 2004; Tang & Li 2010). It seems that if these measures were in place, many of the worries and pressures suffered by the marginal groups would be eased to some degree.
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However, it is interesting to find that these participants still held the hope for governments’ improvement in policy and social welfare. They seem to be pinning their hopes on future improvements; that the government might act as a buffer for their current difficulties and reduce their self-blame in relation to their responsibilities through external attribution. Future studies are encouraged to explore whether this trust on governments derives from collectivism and how different attribution styles are interwoven with cultural values and further result in different health status of care providers.
Limitations and Future Research Although strategies guided by the grounded theory were applied, it is still difficult to detect or to prevent researcher-induced bias. The findings here are recognized as important but tentative that need quantitative research’s test. Furthermore, the experience and dilemmas highlighted by parents here cannot be simply applied to other family caregivers (e.g. siblings and grandparents), as their self-/recipient-oriented concerns, perceived family support and perceived responsibilities could vary from the parents. Studies specific on other family members are warranted and would be productive. Finally, the themes and theory suggest an ecological model of caregiving experience, are inspiring and require further examination in an evidence-based approach. How the ecological systems change caregivers across time and how their previous self-concept interacts with their life change (becoming a parent of child with intellectual disability) need longitudinal studies.
Conclusion and Implication This study was the first to use grounded theory to work towards providing a culture-based and ecological framework. This theory can be applied to design local healthcare strategies and culturally sensitive interventions as well as to be a foundation for research in other developing areas to help parents to provide high-quality care and live high-quality life. In summary, there were two significant areas in which findings and implications for health care shall be highlighted. First, instead of a dichotomized view of having either positive or negative caregiving experience, we have demonstrated the existence of both. This might derive from the dual role of cultural beliefs. While kinship value and fatalism encouraged caregivers in maintaining a caregiving task for family members, the © 2015 John Wiley & Sons Ltd, 29, 46–57
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culture-related feeling of shame exacerbated their mental health problems. Nevertheless, the conflicted feelings towards interaction with others and their selfconcepts per se could be hurtful. Caregiving perceptions and beliefs due to cultural values played major roles in making decision and seeking service throughout the caregiving process. Hence, nurses, social workers and other service providers should deeply understand and integrate cultural and scientific knowledge into clinical practice for promoting quality of life of not only children with intellectual disabilities but also their caregivers. Furthermore, the findings demonstrated the need for the government and other service providers to have a greater emphasis on this vulnerable group to address the various needs and block the vicious circle exemplified here. More preparation, training and peer group support for the sharing of experience or information for parents and other family caregivers to manage current challenges and caregiving confusion should be provided by community health nurses. Community-based care system and professional education for people with intellectual disabilities can be helpful to buffer their future concerns and to promote well-being.
Acknowledgments We would like to thank the anonymous reviewers for their questions and comments.
Correspondence Any correspondence should be directed to Xue Yang, Room 351, Sino Building, Department of Psychology, The Chinese University of Hong Kong, Shatin, NT, Hong Kong (e-mail: [email protected]).
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Kayfitz A. D., Gragg M. N. & Orr R. R. (2010) Positive experiences of mothers and fathers of children with autism. Journal of Applied Research in Intellectual Disabilities 23, 337– 343. Kearney P. M. & Griffin T. (2001) Between joy and sorrow: being a parent of a child with development disability. Journal of Advanced Nursing 34, 582–592. Kim S., Mollet J. C., Dong J., Zhang K. L., Park S. Y. & Lord E. M. (2003) Chemocyanin, a small basic protein from the lily stigma, induces pollen tube chemotropism. Proceedings of the National Academy of Sciences of the United States of America 100, 16125–16130. Kwok H. W. M., Cui Y. & Li J. (2011) Perspectives of intellectual disability in the People’s Republic of China: epidemiology, policy, services for children and adults. Current Opinion in Psychiatry 24, 408–412. Lam C. S., Angell B., Tsang H. W. H., Shi K., Corrigan P. W., Jin S. H., Lee Y. T. & Larson J. E. (2010) Chinese lay theory and mental illness stigma: implications for research and practices. Journal of Rehabilitation 76, 35–40. Lazarus R. & Folkman S. (1984) Stress, Appraisal, and Coping. Free Press, New York. Li W. O., Fan T. W. & Yu C. K. C. (2012) Difficulty and burden experienced by principal family caregivers of people with intellectual disabilities in Hong Kong. Asia Pacific Journal of Counselling and Psychotherapy 3, 95–105. Mak W. S. & Ho S. M. (2007) Caregiving perceptions of Chinese mothers of children with intellectual disability in Hong Kong. Journal of Applied Research in Intellectual Disabilities 20, 145–156. Miyamoto Y. & Ryff C. D. (2011) Cultural differences in the dialectical and non-dialectical emotional styles and their implications for health. Cognition and Emotion 25, 22– 39. Moulton J. M., Sweet D. M., Temoshok L. & Mande J. S. (1987) Attributions of blame and responsibility in relation to distress and health behavior change in people with AIDS and AIDSrelated complex. Journal of Applied Social Psychology 17, 493– 506. Ouyang L., Grosse S., Raspa M. & Bailey D. (2010) Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey. Journal of Intellectual Disability Research 54, 918–928. Rempel G. R., Blythe C., Rogers L. G. & Ravindran V. (2012) The process of family management when a baby is diagnosed with a lethal congenital condition. Journal of Family Nursing 18, 35–64. Shearn J. & Todd S. (2000) Maternal employment and family responsibilities: the perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 13, 109–131. Strauss A. L. & Corbin J. (1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Thousand OAKS, CA: Sage.
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Tang J. & Li J. (2010) Studies of the Social Services System for Disability in Guangdong [in Chinese]. The Research Publisher, Beijing. Todd S. & Shearn J. (1996) Time and the person: impact of support services on the lives of parents of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 9, 40–60. Walden S., Pistrang N. & Joyce T. (2000) Parents of adults with intellectual disabilities: quality of life and experiences of caring. Journal of Applied Research in Intellectual Disabilities 13, 62–76. Wong S. Y., Wong K. S., Martinson I., Lai C., Chen W. J. & He Y. S. (2004) Needs of Chinese parents of children with
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developmental disability. Journal of Learning Disabilities 8, 141–158. World Health Organisation (2011) World Report on Disability. World Health Organisation. Available at: http:// www.who.int/sdhconference/declaration/en/ (5 February 2015). Yang L. H. & Kleinman A. (2008) Face and embodiment of stigma in China. Social Science & Medicine 67, 398– 408. Zhang X. & Ji C. Y. (2005) Autism and mental retardation of young children in China. Biomedical Environmental Sciences 18, 334–340.
Journal of Applied Research in Intellectual Disabilities 2016, 29, 46–57
Caregiving Experience for Children with Intellectual Disabilities among Parents in a Developing Area in China Xue Yang*, Victoria Byrne† and Marcus Y. L. Chiu‡ *Department of Psychology, The Chinese University of Hong Kong, Hong Kong, Hong Kong; †Centre for Research in the Social Sciences, University of Huddersfield, Huddersfield, UK; ‡Department of Social Work, National University of Singapore, Singapore City, Singapore
Accepted for publication 24 November 2014
Background By utilizing grounded theory methodology, this study attempted to fill a gap whereby little research explored family caregiving perspectives in China where public support is insufficient and familial responsibility is highly valued. Methods Data were collected through the qualitative methods of interviews and observations among a purposive sample of 15 parents of children with intellectual disabilities in central China. Results The central idea emerging from the data encompassed five broad categories of caregiving experiences: (i) unavoidable caregiving responsibility and (ii) uncertain future as the greatest worries which
Introduction ‘Mental retardation’ or ‘intellectual disability’ has been classified into mentally illness by the Chinese Classification of Mental Disorders, 3rd revision (CCMD3), which is the Chinese diagnostic guide for mental disorders (Kwok et al. 2011), and is defined in accordance with international diagnostic systems (American Association of Intellectual and Developmental Disabilities 2011; World Health Organization 2011). According to the latest National Sampling Survey on Disability in 2006, there were more than 1% of residents in China (more than 13 billion) living with intellectual disabilities, which accounted for 11.9% of the entire population with disabilities (Kwok et al. 2011). As high as 84% of the children with intellectual disabilities had never received service such as rehabilitation training or community-based care (Zhang & Ji 2005). The majority of people with disabilities depend on their families to © 2015 John Wiley & Sons Ltd
are the perception towards the recipient; (iii) compromising quality of life and (iv) positive roles of caregiving tasks which focus on the self; and (v) community support which is the perceived support from the external system. Conclusion A recursive relationship existed among these categories. Chinese culture and traditional beliefs dominated throughout these issues. The implications and limitations of this study were discussed. Keywords: Chinese cultures, intellectual disabilities, parents
grounded
theory,
survive and develop (Tang & Li 2010; World Health Organisation 2011). Nevertheless, little research comprehensively and qualitatively explored the family caregiving experience in China, except for the study on the needs of parents in a developed city in South China (Wong et al. 2004). With the use of focus group interviews, five themes/areas of needs were revealed, including parental, informational, attitudes towards the child, coping and support. However, how they perceive their caregiving tasks, roles, benefit finding or loss in the Chinese context is still largely unknown. Chinese cultures may influence both how to understand intellectual disability and familial responsibility. Individuals manifesting themselves insanely or bizarrely are often pejoratively called ‘shazi’ (idiot) and shunned by the Chinese public because of their violations of the Confucian, such as ethic filial piety (Lam et al. 2010). Confucians also conceptualize all members of a family as one body (Yang & Kleinman 2008). Thus, it is the 10.1111/jar.12157
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moral duty of family members to take care of people with disabilities, and they even feel self-blame for the onset of the deviance (Chiu et al. 2015). This study is to contribute to this body of work by comprehensively exploring parents’ caregiving experience in China where community and social support are limited and particular cultures are valued. This issue is important because caregiving tasks can hurt parents with such as lifelong caregiving strains (Carter & McGoldrick 1988; Haveman et al. 1997; Haley & Perkins 2004), high expense of caregiving, employment problems and damaged family relationships (Shearn & Todd 2000). Particularly in respect of their social life, they have to deal with the socio-structural constraints and public stigma towards intellectual disability (Green 2007), which puts them under greater stress (Baxter et al. 2000) and results in a lower quality of life and poorer well-being than non-caregivers (Chou et al. 2009). In contrast, some studies have reported that caregiving experience may relate with positive perceptions, such as a sense of fulfilment (Kearney & Griffin 2001), personal maturity and reinforced bonds between caregivers and recipients (Hastings et al. 2002). Therefore, it is meaningful to explore the source of these conflicted feelings and how they treat and integrate their caregiving role and other roles as a whole. The narrow focus on individual burdens of or benefits from caregiving can lead to a biased and incomplete understanding of their experience. This study, guided by the grounded theory, addresses the questions why the different even conflicting perceptions occur and how the factors at external and cultural levels colour or entangle personal experiences.
Methodology The present research broadly followed an interpretative, constructivist approach to grounded theory (Charmaz 2006; Dunne 2011). Central to this approach is the recognition that individuals construct the world in different ways, and concepts are generated from empirical data and reflect the interaction with the local context, rather than grounded on existing literature or preconceptions of the researcher. Initial themes were generated purely from the data and with minimal assumptions, but were then checked and consolidated with existing literature. New themes were put to test in subsequent interviews. By constant comparison of data gathered throughout the whole research process, a theory is built up around a core category and related categories (Glaser & Strauss 1967). The need for a © 2015 John Wiley & Sons Ltd, 29, 46–57
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qualitative study into the caregiving experience in China has been informed by earlier studies (Chiu & Hung 2006; Chiu et al. 2013) and is made possible by a generally more open attitude towards research among healthcare and education officials. To comprehensively identify the issues specifically related to regional situations and cultural beliefs over time, this study adhered to this approach as a way in which to study the caregiving experience of parents of children with intellectual disabilities.
Study setting and participants This study used a purposive sample of parents of people with intellectual disabilities living in Henan province, central China. Parents were eligible if they (i) lived with their children with intellectual disabilities in Henan province, (ii) identified themselves as the principal family member providing day-to-day care to the relative with intellectual disability at home, (iii) did not suffer from a life-threatening illness that would prevent them from continuing in the caregiving role over the length of the study, (iv) were not financially reimbursed for caregiving activities and (v) had been a caregiver for a minimum of 6 weeks prior to the study (Kim et al. 2003; Chiu et al. 2013). Because there is a lack of recorded information in relative institutions, caregivers and their family members with intellectual disabilities were mainly identified through four government-funded special education schools. The four schools are located in the three major areas of Henan province which are regarding as developing areas of China, and we got contact with the parents under school managers’ help and with the parents’ permission. Additional participants were identified through the snowball sampling method. The investigator visited and assessed the selected parents in their homes with permission from them. Demographic information of the caregivers who met the criteria was recruited. The study participants selected were given an overview of the study and asked to identify mutually agreeable times for in-home interviews. The study sample was continually snowballed until no new theme emerges. The saturation was reached with a sample size of 15. This sample consisted of 10 mothers and five fathers of children with intellectual disabilities. They ranged in age from 38 to 55 years. One was divorced (caregiver D) and others were married. Time dedicated to providing care ranged from 12 to 24 h per day. The children with intellectual disabilities ranged in age from 6 to 18 years
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old. Three had a sibling without intellectual disability and others were single child in the family. All were diagnosed as having moderate degrees of intellectual disability by medical professionals (Table 1).
Data collection and analyses Data collection and analyses were processed from February to April in 2012. Ethics approval was obtained from the University Research Committee, and the researchers kept their procedures under review to comply with research ethics and the Declaration of Helsinki (http://www.wma.net/en/30publications/10policies/ b3/). Participants were interviewed individually in Mandarin by the first author. The interviewer started with the questions that ‘What have you experienced when caring for your child (with intellectual disability)?’ and ‘What do you think of it?’ On hearing initial response, the interviewers used further probing questions to encourage them to elaborate their stories (e.g. ‘Why did you think so?’ and ‘How did you react to/cope with it?’). Participants’ demographics, such as age, self-reported socioeconomic status (SES), residence and their child’s gender, age and the number of siblings, were recorded. Each interview lasted from 40 min to 1 h and was audiorecorded with informed consents. The audio records were later transcribed with the removal of possibly identifiable information. To enhance the credibility of analyses, initial open codes were discussed and cross-checked with another
researcher, together with the memos and field notes information. Data collection and data analyses were conducted concurrently using the constant comparative method, whereby new information gained from participants is constantly compared with that of data already received (Strauss & Corbin 1998). Data received from the interviews were transcribed verbatim into English and examined by the primary researcher and a research assistant who are both Chinese–English bilingual. Keywords used by participants were coded as substantive codes and then categorized independently by them. During the data analysis procedure, new codes or categories were added when new information or themes were identified. Necessary revisions of code titles and criteria for the categories were ongoing during coding for a final conditional matrix. Upon completion of their separate coding, meetings and discussions to compare and negotiate researchers’ coding and categories were conducted. Different categories were negotiated and criteria for categories were devised if necessary and appropriate. Two British researchers who had experience of qualitative research read the findings and affirmed the coding and categories were appropriate.
Findings Five broad categories of caregiving perceptions describing the process in which Chinese parents
Table 1 Demographics of participants and children with intellectual disabilities
Caregiver
Age
Relation
SES
Residence
Gender (Intellectual disability)
Age (Intellectual disability)
Sibling (Intellectual disability)
A B C D E F G H I J K L M N O
44 46 38 40 40 45 50 52 48 50 42 47 49 55 43
Mother Father Mother Father Mother Father Mother Mother Mother Mother Mother Mother Father Mother Father
Low High Low Middle High Middle Middle Low High Middle High Middle Low Low Middle
Rural Urban Rural Urban Urban Urban Urban Urban Urban Urban Urban Urban Urban Rural Urban
Male Male Male Female Female Male Male Female Female Male Male Male Male Male Male
15 17 7 6 12 12 18 18 13 16 9 17 15 18 8
Elder brother Single child Single child Single child Single child Single child Single child Single child Younger sister Single child Single child Single child Single child Younger sister Single child
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maintain care for children with intellectual disabilities at home were identified: (i) unavoidable caregiving responsibility and (ii) uncertain future as the greatest worries which are the perception towards the recipient; (iii) compromising quality of life and (iv) benefits of caregiving for the self; and (v) community support which is the perspective on the external system (Figure 1). These categories represent three concerns and systems in ecological model, that is the intrapersonal system, interpersonal system and external/macro system, and they may interact with one another to strengthen or weaken the effects on caregivers.
Unavoidable caregiving responsibility for the recipient All 15 participants considered caregiving for the child with intellectual disability as an unavoidable responsibility, and it has become an integral part of life. They explained their caregiving activities mainly related to providing daily care, study assistance and emotional support for children with intellectual disabilities and help them in relation to improvement/rehabilitation. It was a routine fully integrated into their lives that they would continue as long as possible.
Daily care Although caregivers expressed that the daily care task is very tedious and cumbersome, they told their stories with no sense of resentment. As I said: Needless to say, it is my duty to care for my daughter’s daily life, such as cooking for her, dressing her, washing her clothes, and preventing her from hurt. I am her mother. These are what I should do. No one can do it better than me. Every parent would do the same thing for their child. M also remarked, ‘Although the caregiving task is cumbersome, I can handle it. Actually, I have to. It is a necessary part of my life, as a parent’.
Study assistance Three caregivers emphasized study assistance for their children with intellectual disabilities as an important part of their caregiving task. J and M expressed similar experience of having expectations for their children with intellectual disabilities as high as for other children without
Toward community
Toward recipient Unavoidable caregiving responsibility: -Daily care; -Study assistance; -Emotional supports; -Helping for improvements /rehabilitation. Uncertain future as greatest worries: -Financial, emotional, and daily care providing; -Marriage paradox.
Figure 1 The central theme and related categories. © 2015 John Wiley & Sons Ltd, 29, 46–57
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Community support: -A lack of financial and professional support; -Holding hope for service improvement.
Caregiving perceptions of Chinese parents of children with intellectual disabilities
Toward self
Compromising quality of life: -Trapping own ambitions; -Damaging social connections; -Conflicts in self-concepts; -Daily emotions and well-being. Benefits for the self: -Attachment; -Psychological resilience.
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intellectual disabilities. They had to put in extra effort to help their children study after school, which increased the pressure. K described her psychological and behavioural changes as a study assistant to her son as follows: At first, I did not want to admit that he [her son with intellectual disability] could not study as well as other children without intellectual disability. So I put lots of efforts into his study. I always accompanied and supervised him until he finished the homework. But it was difficult for him in concentrating on the study. I had to teach him again and again, no matter how easy the work was. Gradually, I have accepted the fact. Now I just hope that he can read some Chinese characters.
Emotional supports All participants mentioned that they played the most important role in meeting the emotional needs of their children with intellectual disabilities. As principle caregivers, they also needed to play the role of friends and help children with intellectual disabilities regulate their emotions. L reported: He [her son with intellectual disability] likes chatting and making friends. But children without intellectual disability would not like to make friends with him and often laughed at him. So I have to be his only friend. I often accompany him to give him feelings of warmth and love. M mentioned, ‘To keep my son from loneliness, I always play and chat with him once I have free time. I want to give him courage to live in the world and live happily’.
Responsibility for improvement Some caregivers mentioned their efforts to help their children with intellectual disabilities to make improvements as a part of caregiving tasks. Focusing on the responsibility for improvement/rehabilitation was also a dynamic that made caregivers maintain their caregiving tasks and make healthy decisions. O explained how he tried to create more chances to help his son [with intellectual disability] improve his living skills, such as taking him outside to talk with others and teaching him to do some simple housework. E said, ‘I let my daughter play piano and hope she can find a way to
express her feelings’. She still held the hope that her daughter can learn a skill to care herself and to live independently in the future, as she mentioned that ‘Maybe she [the daughter with intellectual disability] can play piano to make herself money for basic survival’. This concern was also related to the future worries that mentioned below.
Uncertain future of the recipient All participants remarked that the uncertain future of their children with intellectual disabilities made them confused and was their greatest concern. The possible problems for the future included providing financial, emotional and daily care after current caregivers died, and the marriage paradox of people with intellectual disabilities. These uncertainties resulted from the public stigma towards people with intellectual disabilities and the lack of social support for them.
Provision of financial, emotional and daily care in the future Caregivers worried that no one would hire or care for people with intellectual disabilities and that public discrimination would hurt their children. A shared her feelings as follows: I cannot help sighing whenever I think about my child’s future. It is always a big rock in my mind. I have no idea about what he can do independently once he enters the society. No one will want to employ him because of his incompetence. I having a 13-year-old daughter said: Although she [her daughter with intellectual disability] can do some simple housework, like sweeping and washing, she still needs someone to support her daily life financially and emotionally, and to protect her from being bullied, after I die.
Marriage paradox Caregivers stated concerns over the marriage issue of people with intellectual disabilities after the child reached adulthood. All three caregivers of children with intellectual disabilities aged 18 reported that the marriage issue became a common topic within their families. Because traditionally parents highly valued family and marriage, they hoped for their children to get married as the normal. On the other hand, they had © 2015 John Wiley & Sons Ltd, 29, 46–57
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Tang J. & Li J. (2010) Studies of the Social Services System for Disability in Guangdong [in Chinese]. The Research Publisher, Beijing. Todd S. & Shearn J. (1996) Time and the person: impact of support services on the lives of parents of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 9, 40–60. Walden S., Pistrang N. & Joyce T. (2000) Parents of adults with intellectual disabilities: quality of life and experiences of caring. Journal of Applied Research in Intellectual Disabilities 13, 62–76. Wong S. Y., Wong K. S., Martinson I., Lai C., Chen W. J. & He Y. S. (2004) Needs of Chinese parents of children with
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developmental disability. Journal of Learning Disabilities 8, 141–158. World Health Organisation (2011) World Report on Disability. World Health Organisation. Available at: http:// www.who.int/sdhconference/declaration/en/ (5 February 2015). Yang L. H. & Kleinman A. (2008) Face and embodiment of stigma in China. Social Science & Medicine 67, 398– 408. Zhang X. & Ji C. Y. (2005) Autism and mental retardation of young children in China. Biomedical Environmental Sciences 18, 334–340.
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Benefits for the self Caregivers in this study reported positive effects of caregiving tasks, including increasing attachment with their children with intellectual disabilities and psychological resilience.
Attachment Parents mentioned caregiving tasks increased child– parent attachment based on time spent and experiences shared with their children with intellectual disabilities. For example, L said, ‘I spend most of my time with him [her son with intellectual disability]. No matter where I go, I take him with me. I felt he needs me. He only trusts me’. Attachment was bidirectional. N talked about her sense of dependence and attachment to her son [with intellectual disability] as follows: We have gone through a lot of things together. He always took my hand and stayed with me. Ordinary children always start a new life and leave their old parents alone when they grow up. I feel that we will never abandon each other.
Psychological resilience Caregivers reported that they felt less fragile and more psychologically resilient when confronting life difficulties and learnt how to live in a sustainable and balanceable way after the chronic caring task. Two caregivers mentioned that they have psychologically accepted the fact that they used to deny, adjusted their expectation towards life and their children with intellectual disabilities to a more realistic one and felt grateful and self-compassionate. O said, ‘I am grateful and sincerely happy even if my son just makes a little progress’. When they felt that they can successfully adjust themselves and master caregiving tasks, they perceived more self-confidence and self-empowered. For instance, I remarked, ‘Life was tough, but I overcame it. I am more qualified to say I am tougher’.
Perception of community support Lack of financial and professional support Generally, participants did not support from the public participants mentioned that financial aids and professional
perceive any significant and government. All they mainly needed guidance about how to
care for their child with intellectual disability appropriately. C explained her financial difficulties caused by the high expense of rehabilitation services in the past years. Most families like us [who have a child with intellectual disability] are not rich, because our savings have mostly been spent on medical treatments for the child’s disability. The hospitals providing rehabilitation services are far away, in the developed cities. So we had to pay for traveling fee and spend lots of time. D remarked, ‘I hope there are professionals who can tell me how to deal with the child with intellectual disability effectively. I feel confused about the current situation and the future of our whole family’. In this study, the children with intellectual disabilities did not receive constant provision of rehabilitation services. Most caregivers gave up on medical treatments for children with intellectual disabilities after they entered school. However, caregivers often found that the education in special schools was not professional or useful. G explained her observations and concerns as follows: Teachers in the special school did not major in special education or even education. They are just like babysitters who look after the children and play with them. My son will have to graduate from the school. But he learnt little skills. I do not know what he can do after entering the society.
Holding hope for government Although caregivers perceived little community support, they still held hope for government that policy makers would pay more attention to this vulnerable group and improve the public service and welfare provision in the future. O said, ‘I believe the public care system will develop well before I get too old to take care of him [his son with intellectual disability]’. I shared her information and confidence in relation to governments’ support. I know the national government has implemented some policies to improve the quality of life of families with children with intellectual disabilities. There are some professional schools and service institutions for people with intellectual disabilities © 2015 John Wiley & Sons Ltd, 29, 46–57
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and their associates in several developed cities, such as Beijing. They will be available in the developing areas in the near future.
Discussion Caregiving at home is a challenging task for caregivers, and their perceptions are always interwoven with a local context and values (Chiu et al. 2013). Guided by the grounded theory, the current study identified five themes in the caregiving experiences among caregivers from a developing area of China. These themes are much richer in description and more complicated in meaning than a previous study performed in a very developed city (Wong et al. 2004). The caregiving stories in this study are more dynamic and cannot be simply summarized as either negative or positive. We discuss these themes and their relationships from the perspectives of the self (intrapersonal system), the recipient (interpersonal system) and the community (external/macro system), respectively (Bronfenbrenner 1977).
Caregiving concerns towards the recipient In accordance with the report of WHO (2011), support and assistance from outside the family (e.g. communities and governments) in the developing areas was scarce. Chinese parents were the primary source of support (i.e. daily care, study assistance, emotional support and rehabilitation care) for children with intellectual disabilities. Furthermore, the majority of caregivers showed a supportive attitude towards their caregiving task and considered it as an unavoidable parenting responsibility. These findings were consistent with previous studies in Asian cultures which valued kinship and familial responsibility (Wong et al. 2004; Mak & Ho 2007). It is not unusual that study assistance was highlighted as a caregiving task by the Chinese caregivers, because of the high family expectations for children’s academic performance in Chinese tradition. Thus, the extra efforts to assist children’s study and attempt to fulfil the family expectation turned out to cause more stress and disappointment for parents. It is also worth noting that caregivers in this study not only felt responsibility for basic needs of children with intellectual disabilities but also to their rehabilitation and improvement. This all-round obligation is less likely grown out of the practical demand from the context. Rather, it points to more deep-rooted role expectations © 2015 John Wiley & Sons Ltd, 29, 46–57
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that are encapsulated in the culture, which sustain the caregivers to go against all odds in fulfilling one’s perceived duties. Prior research has suggested that perception of responsibility for improvement has a dynamic function to promote caregivers’ healthy behaviour and positive adaption (Moulton et al. 1987). However, perceiving responsibility for children’s rehabilitation could also be driven by the high family expectations and might result in psychological pressure for caregivers. Cross-culture studies should be conducted to explore whether the two types of caregiving tasks are more culture-related behaviours and their complicated effects on caregivers’ well-being. It is interesting to find that majority of caregivers mentioned that their greatest concern or difficulty was about future life of their children with intellectual disabilities (i.e. future caregiving provision and marriage issues). It differed from previous studies which only focused on current difficulties and needs in daily caregiving tasks (Wong et al. 2004; Li et al. 2012). These future concerns may lead parents to a chronic anxiety and depression (Haley & Perkins 2004) and even drive some parents into the decision of marrying the child with intellectual disability to a stranger as a perceived solution to secure future caregiving for him or her. Future studies should explore caregivers’ mental health issues and their irrational behaviours. The dilemmas between morality and social expectation and problems surrounding marriage of people with intellectual disabilities, though not quite described by this study, should receive more attention in future studies.
Ambivalent perceptions of caregiving and consequences on the self Although the tedious caregiving task has become routine and regular in caregivers’ daily life, it still affect their perceptions and self-feelings profoundly and intricately. Parents in this study reported both negative and positive caregiving perceptions and consequences on themselves. Although some were also noted in Western studies, their ambivalence might be amplified when interwoven with cultural beliefs. The strong sense of ambivalence among caregivers seems to be oscillating between the deep conviction that they have to take care of the child with disability and the clear awareness that there is not much they can rely to fulfil their duties. We have no objection to any attempt to strengthen their sense of family responsibility and morality, and they have a sacred mission to
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achieve, but we shall not exploit such personal conviction or to justify inactions not to develop further supports for them. There is no doubt that these fatalistic ideas may have positive impact, making them more ready to psychologically accept their caregiving role and difficulties without resistance. However, collectivism and interdependence, through valuing relationship and important others in self-concepts, might have also put caregivers’ mental well-being at a higher risk for those who took the responsibility for their children’s disability and experienced feelings of shame facing other family members (Chiu et al. 2013). Research on ambivalence also demonstrated that when people have both positive and negative attitudes towards an object and have to choose how to react to or treat it/him will feel unpleasant and anxious (van Harreveld et al. 2008). However, crossculture studies found that ambivalent perception was associated with better subjective health and fewer physical symptoms among Asians than Americans because the former are more tolerant with dialectical emotion (Miyamoto & Ryff 2011). This leads to a particular concern on the ambivalent feelings and attitudes towards the caregiving task and the recipient generated by caregiving burdens, kinship and parental responsibility in future studies, given the multiple facets of Chinese cultures. Whether the ambivalence is a buffer or extra burden for their well-being deserves further study. Social restriction on own ambition and career was highlighted by all of the fathers instead of mothers. Because the social expectations and masculism often stress achievement, emotional control and autonomy on men (Barbee et al. 2010), fathers who are primary caregivers at home might perceive more restriction on their expressions and feelings, social roles, selfappraisals and willingness to seek support. In accordance with prior research (Kayfitz et al. 2010), mothers as the traditional role of caregivers perceived less negative experience or conflicting feelings. Todd & Shearn (1996) categorized the parents who feel their ambitions curtailed as ‘captive’ and it was found that these parents reported greater parental stress and pessimism than captivated parents who find purpose and contentment within their parental role (Walden et al. 2000). This study may provide one potential mechanism that why parents feel captive and more stressful in their caregiving. Future studies should further explore fathers’ stories as caregivers, their ambivalent feelings generated and amplified by social/moral/cultural expectations for a man and a father in the patriarchal society, and how to help parents become captivated.
In accordance with Western literature (Kearney & Griffin 2001; Hastings et al. 2002), caregivers perceived closeness and parent–child attachment. However, whether the relationship quality would moderate this positive perception needs further investigations. In addition, this study found that caregiving tasks might strengthen psychological resilience for those who have successfully adjusted to this task. Long-term caregiving appears to have made, gradually over time, one accept the role, adjust oneself to the stress and develop better skills to cope with the challenges. It makes caregiving become a part of a routine which is fully integrated into their lives. As the adaptation model (Lazarus & Folkman 1984) suggests, the more time spent experiencing a source of stress, the greater the adaption to this challenge. Future studies need to examine the potential moderator, acceptance and adaption, between caregiving difficulties and psychological resilience as well as identify which factors would facilitate their acceptance and adaption.
Perceptions of community and social support Because raising children with intellectual disabilities usually involves great challenges and requires specialized caring knowledge and skills, the lack of adequate social support and professional instruction may vary family caregiving experience (Green 2007; Bousso et al. 2012; Rempel et al. 2012). In relation to previous research, the findings with regard to the financial burden and the lack of professional support that the participants felt showed similar results (Shearn & Todd 2000; Ouyang et al. 2010). Interestingly, conditional matrix suggested a potential recursive relationship among categories (i.e. caregiving perceptions towards the recipient, self and community, see Figure 1). Perceiving the lack of community support can increase their caregiving burdens and feelings of insecurity in the future and reduce their quality of life and psychological well-being. In turn, their perceived burdens may strengthen their belief that the government have done very little to provide trainings, opportunities and safeguards for people with intellectual disabilities to live dependently and safely. Admittedly, even in the developed areas of southern China where community and social support are relatively available and accessible, parents still reported a lack of support for them and their children (Wong et al. 2004; Tang & Li 2010). It seems that if these measures were in place, many of the worries and pressures suffered by the marginal groups would be eased to some degree.
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However, it is interesting to find that these participants still held the hope for governments’ improvement in policy and social welfare. They seem to be pinning their hopes on future improvements; that the government might act as a buffer for their current difficulties and reduce their self-blame in relation to their responsibilities through external attribution. Future studies are encouraged to explore whether this trust on governments derives from collectivism and how different attribution styles are interwoven with cultural values and further result in different health status of care providers.
Limitations and Future Research Although strategies guided by the grounded theory were applied, it is still difficult to detect or to prevent researcher-induced bias. The findings here are recognized as important but tentative that need quantitative research’s test. Furthermore, the experience and dilemmas highlighted by parents here cannot be simply applied to other family caregivers (e.g. siblings and grandparents), as their self-/recipient-oriented concerns, perceived family support and perceived responsibilities could vary from the parents. Studies specific on other family members are warranted and would be productive. Finally, the themes and theory suggest an ecological model of caregiving experience, are inspiring and require further examination in an evidence-based approach. How the ecological systems change caregivers across time and how their previous self-concept interacts with their life change (becoming a parent of child with intellectual disability) need longitudinal studies.
Conclusion and Implication This study was the first to use grounded theory to work towards providing a culture-based and ecological framework. This theory can be applied to design local healthcare strategies and culturally sensitive interventions as well as to be a foundation for research in other developing areas to help parents to provide high-quality care and live high-quality life. In summary, there were two significant areas in which findings and implications for health care shall be highlighted. First, instead of a dichotomized view of having either positive or negative caregiving experience, we have demonstrated the existence of both. This might derive from the dual role of cultural beliefs. While kinship value and fatalism encouraged caregivers in maintaining a caregiving task for family members, the © 2015 John Wiley & Sons Ltd, 29, 46–57
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culture-related feeling of shame exacerbated their mental health problems. Nevertheless, the conflicted feelings towards interaction with others and their selfconcepts per se could be hurtful. Caregiving perceptions and beliefs due to cultural values played major roles in making decision and seeking service throughout the caregiving process. Hence, nurses, social workers and other service providers should deeply understand and integrate cultural and scientific knowledge into clinical practice for promoting quality of life of not only children with intellectual disabilities but also their caregivers. Furthermore, the findings demonstrated the need for the government and other service providers to have a greater emphasis on this vulnerable group to address the various needs and block the vicious circle exemplified here. More preparation, training and peer group support for the sharing of experience or information for parents and other family caregivers to manage current challenges and caregiving confusion should be provided by community health nurses. Community-based care system and professional education for people with intellectual disabilities can be helpful to buffer their future concerns and to promote well-being.
Acknowledgments We would like to thank the anonymous reviewers for their questions and comments.
Correspondence Any correspondence should be directed to Xue Yang, Room 351, Sino Building, Department of Psychology, The Chinese University of Hong Kong, Shatin, NT, Hong Kong (e-mail: [email protected]).
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