Cognitive Behavior Therapy for Asian American Families of Children With Developmental Disabilities

Abstract

Parents of children with developmental disabilities usually experience stress, grief, and isolation. Asian American parents may experience higher stress and other difficulties due to their cultural background, discrimination, and different acculturation status. Parental well-being also has an impact on the parent–child interaction and the child’s development. Psychological and educational intervention for parents of children with developmental disabilities has been studied from different approaches, such as family system and cognitive behavior therapy. The possibility of integrating cognitive behavior therapy and structural family therapy was also proposed.

Keywords

developmental disabilities Asian American cognitive behavior therapy structural family therapy

Parents of children with development disabilities usually encounter different life experiences compared to their peers with children without developmental disabilities (Power & Orto, 2004). According to the Center of Disease Control and Prevention,

Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime. (Centers for Disease Control and Prevention, “Facts about Developmental Disabilities,” 2014, para. 1)

It is estimated that in recent years, 13.8% of children aged 3–17 in the United States have been diagnosed with one or more developmental disabilities, including autism spectrum disorder, intellectual disabilities, attention-deficit hyperactivity disorder, and so on (Boyle et al., 2011). From 1996 to 2008, the prevalence of developmental disabilities (DDs) has increased 17.1%—that’s about 1.8 million more children with DDs in 2006–2008 compared to a decade earlier (Boyle et al., 2011).

The Asian population in the United States has increased 46% from 2000 to 2010—the largest increasing rate across all races in the United States (Waldman, Perlman, & Garey, 2015). There are estimated 65,000 Asian children (2.0% of all Asian children) less than 18 years of age with one or more severe disabilities, and the number is expected to grow due to the quick growth of new immigrant number. Local services need to prepare for the changes (Waldman et al., 2015). However, Asian Americans tend to underutilize available mental health services, typically due to cultural barriers such as different language, beliefs, and attitudes (Choi & Wynne, 2000; Kennedy, Schepp, & Rungruangkonkit, 2008).

Scholars and professionals from multiple disciplines, such as education, counseling, and psychology, work with families with children with developmental disabilities on parenting skills, child treatment planning, marriage, and family counseling (McIntyre, 2008; Neely, Amatea, Echevarria-Doan, & Tannen, 2012). This literature review discusses (a) the struggles and unique needs of families of children with developmental disabilities, (b) the unique struggles for Asian American families, (c) how parental well-being and child development influence each other, and (d) current interventions for families of children with developmental disabilities, such as structural family therapy and behavior parent training. In addition, cognitive behavior therapy (CBT) for parents of children with developmental disabilities will be analyzed, including the components of the programs, the effectiveness of CBT in both individual and group setting, the duration of the intervention, and provision of culturally sensitive CBT to Asian families. Furthermore, incorporation of CBT with behavior parent training and structural family therapy will be discussed.

Families of Children With Developmental Disabilities

Parents of children with disabilities typically face more stress than parents of children without a disability, and they may also experience grief and loss, guilt and self-blame, social isolation, financial pressure, and mental health problems (Christopher, 2001; Gallagher & Whiteley, 2012; Patrick-Ott & Ladd, 2010; Pelchat, Bisson, Ricard, Perreault, & Bouchard, 1999; Power & Orto, 2004; Woodman & Hauser-Cram, 2013).

The developmental disability may also dominate family life and hinder the functioning of the family members, resulting in marital problems, stress on siblings, and tense relationships between parents and other children (Lobato & Kao, 2002; Neely et al., 2012; Patrick-Ott & Ladd, 2010; Power & Orto, 2004).

Asian American’s Perception of Developmental Disabilities

Generally, Asian Americans view disabilities differently from European Americans. However, Asian American is one broad ethnic group that includes several subgroups, such as Pacific Islanders, Southeast Asians, and East Asians (Parette, Chuang, & Huer, 2004). People from different ethnic subgroups may hold different perceptions toward developmental disabilities (Parette et al., 2004; Ryan & Smith, 1989). Other factors such as acculturation levels, language proficiency, education level, social–economic status, and the community they live in may also significantly influence Asian American’s perceptions toward developmental disabilities (Parette et al., 2004; Ryan & Smith, 1989). Asian Americans that receive higher education degrees and speak fluent English tend the have more objective perception toward developmental disabilities, while those who are not well educated and have lower income tends to attribute the cause to supernatural agents and/metaphysical elements (Parette et al., 2004; Ryan & Smith, 1989). Therefore, researcher and practitioners should be cautious about making stereotypical judgments about Asian American’s perceptions of developmental disabilities.

The Special Struggles of Asian Families With Children With Developmental Disabilities

Cross-cultural studies show that many Asian families with children with mental retardation experience more stress than their American counterparts, partly because of the shame and blame the culture ascribes to having children with mental retardation (Shin & Crittenden, 2003). Shin and Crittenden (2003) indicated that, for American mothers, the maladaptive behavior of the children directly related to maternal stress, while Korean mothers were affected more globally by their attitudes toward the disability and by Korean traditional values rather than by the children themselves. The Asian American parenting style of restrictive, overprotective, or even authoritarian was in conflict with the positive and independent style promoted by the mainstream U.S. culture—which may also cause intensive frustration and stress in Asian American parents of children with developmental disabilities (DeLambo, Chung, & Huang, 2011).

Many Asian American families also feel stigmatized due to the developmental disabilities (Jegatheesan, 2009; Yang et al., 2014). Fear for the discrimination within the community, parents may live in isolation and secrecy for a long period to prevent other people from knowing the diagnosis (Jegatheesan, 2009; Sage & Jegatheesan, 2010). Family members are more likely to take all responsibilities for the child, instead of seeking professional help (Choi & Wynne, 2000; Ryan & Smith, 1989). Asian parents of children with disabilities may feel more isolated than their non-Asian counterparts partly because of the current small percentage of Asian Americans with developmental disabilities utilizing services in the mainstream service delivery system (Choi & Wynne, 2000). The feelings of isolation, discrimination, and the lack of social support are likely to cause more stress or may result in psychological disorders (Leong, Park, & Kalibatseva, 2013).

Parents’ beliefs about the child’s disability can also affect siblings of children with developmental disabilities (Sage & Jegatheesan, 2010). For example, some parents hide the diagnosis from the siblings for fear the siblings might unintentionally reveal the condition to the rest of the community and cause them shame (Sage & Jegatheesan, 2010). Asian parents are also more likely to expect their children without DD to take more responsibilities, serve as role models, and give in to their child with DD (Sage & Jegatheesan, 2010). The lack of understanding of the diagnosis and overburden for the siblings can lead to more negative emotional and behavioral manifestations in siblings (Dauz Williams et al., 2010; Sage & Jegatheesan, 2010).

Asian parents with limited English encounter more difficulties when they deal with professionals (Baker, Miller, Dang, Yaangh, & Hansen, 2010; Choi & Wynne, 2000; Jegatheesan, 2009). Locating a bilingual translator sometimes can be unsuccessful since the Asian American population is a small minority in the community and there are diverse dialects even within one specific ethnic language (Choi & Wynne, 2000). Even when parents speak fluent English, they do not always understand the medical and psychological terms used by the professionals (Jegatheesan, 2009). It is frustrating for the families when they do not understand the language and cannot ask questions (Choi & Wynne, 2000).

It has been observed that the language barriers in service delivery can be more complicated, when Asian American families find themselves having a hard time relating to other Asian American families from different ethnic origins for support and group services that may be offered by the agency (Choi & Wynne, 2000). Confusion and misunderstanding of the diagnosis and services can further lead to lack of trust toward service providers (Choi, Wynne, & Asian Human Services of Chicago, 1996). Asian parents who have experienced dismissive service providers, including unqualified interpreters and professionals that lack patience and multicultural sensitivity, may feel frustrated and experience more stress (Jegatheesan, 2009).

Systemic View of Parental Well-Being and Child Development

According to Bronfenbrenner (1979), social support and resources from external social system could impact parents’ well-being and their parenting beliefs. These resources and support can have either positive or negative consequences on parent–child interactions and child development, depending on the nature of the relationships among these people and environmental factors. Emerson, Hatton, Llewellyn, Blacker, and Graham (2006) suggested that children’s intellectual disabilities and lower socioeconomic status can contribute to poor maternal self-esteem and self-efficacy. Trivette, Dunst, and Hamby (2010) also proposed that external factors such as family socioeconomic status, education, and parents’ self-efficacy as caregivers can impact parent–child interaction and child development. Family support, including capacity-building, help-giving practices, and family-system intervention practices, can all influence parents’ self-efficacy (Trivette, Dunst, & Hamby, 2010).

Parental Psychological Symptoms and Child Development

Research has shown that the most common psychological effects on the parents of children with disabilities are a poorer quality of life, stress-related symptoms, compulsive thoughts, evasion, uncertainty, fear, and dejection (Anclair & Hiltunen, 2014). Parents suffer a great deal and are in dire need of support.

The parents’ psychological health also affects the child’s health, development, and adjustment (Anclair & Hiltunen, 2014; Eccleston, Palermo, Fisher, & Law, 2012). In early interventions for children with developmental disabilities, high levels of parental stress may interfere with decision-making in treatment planning and thus counteract the effectiveness of early teaching interventions for children with developmental disabilities (Osborne, McHugh, Saunders, & Reed, 2008; Strauss et al., 2012). Parental stress, family problem-solving communication, and family time and routines also significantly contribute to well siblings’ adjustment difficulties (Giallo & Gavidia-Payne, 2006). Therefore, psychological supports for family members are needed.

Therapy Approaches

Although parents of children with developmental disabilities usually experience more challenges in life, Singer, Ethridge, and Aldana (2007) noticed that the disability could bring both negative and positive influences to the family. Recently, authors suggested that family may experience resilience from stressful life situation (Grant, Ramcharan, & Flynn, 2007; Singer, Ethridge, & Aldana, 2007). Short-term interventions addressing parental depressive symptoms, anxiety, and stress can be helpful in building up long-term resilience and dealing with short-term problem as well (Singer et al., 2007).

Structural Family Therapy

Families with a disability usually suffer in a dysfunctional system, as the structure may be altered with children established in positions of power due to a power vacuum, necessity, or the inability of parents to maintain their executive role (Messina, Kolbert, Hyatt-Burkhart, & Crothers, 2015). Family system approaches consider families as unique interactive and reactive unites, with their own basic social system of rules, values, and goals (Cridland, Jones, Magee, & Caputi, 2014). As an important part of family system theory, structural family therapy views families and emotional distress from an organizational perspective: Individual problems are maintained through flaws in a family’s organizational design (Durtschi & Wetchler, 2014; Minuchin, 1974). Once a new family structure is formed, all family members can benefit from the intervention.

According to the studies implementing structural family therapy to families of a child with special needs (Becerra & Michael-Makri, 2012; Sim, 2007; Yang & Pearson, 2002), techniques that have been effective including joining with the family, accommodating to their family system, modifying the family structure through structure diagnosis and enactment, and enhancing the family strengths by reframing the negative interaction and exploring the hidden resources such as extended family members. Structural family therapy can also be integrated with psychoeducation and behavioral treatment (Yang & Pearson, 2002).

Asian Family System

Asian American families have distinct systems because of their culture and, for many of them, immigration background. Asian culture emphasizes contributing to the collective social good, which means they work for the benefit of the community and country, even when they need to sacrifice individual wishes. Therefore, parents are concerned with raising children who will be able to honor their ancestors and family, and many parents are willing to sacrifice their own life for the well-being of their children (Sim, 2007).

The majority of Asian American families are immigrant families, consisting of foreign-born parents and U.S.-born children ( J. M. Kim, 2003). The second-generation children of the new immigrant families are exposed to the dominant values in the United States that encourage autonomy and individual accomplishment and separate individuals from the family ( J. M. Kim, 2003; Navarre, 1998). Although both generations experience traditional Asian and American ways of being, the acculturation levels of the generations are different, and their reactions to these two opposing worldviews may differ ( J. M. Kim, 2003; Navarre, 1998). Parents may try to maintain the traditional values from their homeland, while their children quickly adopt Western ways of thinking and behaving through school and peer friendships (J. M. Kim, 2003).

Minuchin’s approach is ideal for Asian population because it does not focus on changing individual’s value system but focuses on the family system and assists family members in improving communication and modifying behaviors (Navarre, 1998). Researchers have suggested that structural family therapy can be applied to address intergenerational conflicts and other issues in Asian American families by setting clear boundaries, promoting generational hierarchies, and providing flexible rules within the family (Figley & Nelson, 1990; J. M. Kim, 2003; Navarre, 1998).

Cognitive Behavior Therapy

CBT has been applied to dealing with stress symptoms across various population, including parents of children with developmental disabilities (Singer et al., 2007). Family-based CBT is also effective in treating children with obsessive-compulsive disorder, chronic pediatric headache and anxiety disorder, and pediatric bipolar disorder (Drake & Ginsburg, 2012; Pavuluri et al., 2004; Storch et al., 2010). CBT techniques that have been effective in treating families of children with developmental disabilities including (a) cognitive restructuring, (b) coping skills training, and (c) communication skills training.

Cognitive restructuring

Cognitive restructuring was used to help parents decrease negative feelings and depressive thoughts (Anclair & Hiltunen, 2014; Gammon & Rose, 1991; Greaves, 1997; Nixon & Singer, 1993; Wong & Poon, 2010; Wong, Poon, & Kwok, 2011). By using acceptance and commitment therapy, parents were allowed to grieve on their own pace (Anclair & Hiltunen, 2014), helping them adapt to the loss of their own dreams and hopes, and seek understanding to accept changes in their life as well as their child’s life (Patrick-Ott & Ladd, 2010). A problem-solving approach was also introduced to deviate parents from problems to solutions, reducing stress and increasing self-efficacy (Anclair & Hiltunen, 2014; Gammon & Rose, 1991; Kirkham, 1993; Schultz et al., 1993).

Coping skills

Studies show that Chinese parents who more frequently use helpful coping patterns also experience less childcare burden (Liu, Lambert, & Lambert, 2007). Coping skills that help reduce the stress and depressive symptoms may further promote well-being for parents of children with developmental disabilities (Singer et al., 2007).

Communication skills

Parents of children with developmental disabilities usually need to work with many professionals. Many Asian parents experience unique challenges when they interact with professionals due to their cultural background. For example, because people tend to look very docile and compliant in Asian culture, especially in front of authority, parents may comply with the professionals’ advice although they had some doubts or were not fully in agreement (Jegatheesan, 2009). Therefore, Asian parents should be encouraged to discuss their challenges in working with professionals and provided training on how to communicate more effectively with professionals from a different cultural background.

Parents of children with developmental disabilities often feel isolated from others (Patrick-Ott & Ladd, 2010; Pelchat et al., 1999). Some Asian parents may experience even more isolation because they stigmatize the disabilities, leading them to feel hesitant to share their story and prevent other people from finding out about their child’s diagnosis (Jegatheesan, 2009). However, there are greater possibilities of receiving support from friends, family, and community if they are able to communicate effectively with others about the diagnosis and their needs. Therefore, parents need training on psychoeducation of the diagnosis, communication, and interpersonal skills.

Cognitive-Behavioral-Systemic Approach

Dattilio and Nichols (2011) proposed the cognitive–behavioral–systemic approach to families, which is based on the premises that members of a family simultaneously influence, and are influenced by, each other’s thoughts, emotions, and behavior. Patterson (2014) also suggested that CBT and family system theory could be well integrated based on the following interlocking concepts: structure and organization, contextuality, communication, and homeostasis. He claimed that structure and organization in a system means how individuals are arranged (and rearranged), so that the system does not disintegrate. CBT is a highly structured approach which involves restructuring thoughts and modifying behaviors and thinking. Both the system theory and behavioral theory involve the concept that individuals and groups affect the environment and are in turn influenced by it. Patterson (2014) also stated that communication is present in systems, with one action leading to a reaction, similar to behavior therapy where the communication patterns within the family are examined through contingencies of responses. Finally, by incorporating direct in-session and daily activities, CBT disrupts old patterns through thought and behavior change and aims at directly achieving a more functional balance within the system (Patterson, 2014).

Cognitive–behavioral–systemic therapy has been applied to family members and survivors of brain injury with potential success (Kreutzer et al., 2009). However, the integration of CBT and family system theory has rarely been studied in Asian parents of children with developmental disabilities.

Culturally Sensitive Interventions Are Needed for Asian American Families

Based on the literature, culturally sensitive interventions for Asian families of children with developmental disabilities are still needed. Although Asian parents share similar experience as their non-Asian American counterparts in terms of stress, isolation, and grieving (Anclair & Hiltunen, 2014), they have very special experiences such as stigma and language barriers due to their cultural background and their acculturation status (Jegatheesan, 2009; Leong et al., 2013).

There is a lack of studies addressing Asian cultural related stigma and barriers. Only two studies that employed CBT addressed self-blame and guilt of parents of children with disabilities (Anclair & Hiltunen, 2014; Nixon & Singer, 1993), and only one participant was from Asia (Middle East). The mother resided in Sweden, and experienced extreme isolation and lack of social network (Anclair & Hiltunen, 2014). The CBT treatment was effective for her psychological symptoms including her emotion and behaviors. However, no culturally sensitive adaptation was mentioned in the study (Anclair & Hiltunen, 2014). Yang et al. (2014) adapted the existing anti-stigma intervention program and applied it to a sample of 11 Chinese immigrant caregivers of individual with psychosis. The quantitative and qualitative results showed potential effect. Therefore, therapy that incorporates anti-stigma component could be potentially effective for Asian parents of children with developmental disabilities.

Cultural barriers prevail in mental health services for Asian families such as language and communication barriers (Cheremshynski, Lucyshyn, & Olson, 2013; Kennedy et al., 2008), lacking knowledge of Asian family structure, and lack of understanding of their attitudes toward treatment (Jegatheesan, 2009; Lau, Fung, & Yung, 2010).

For many Asian American immigrant families, limited English proficiency prevents them from receiving effective services from professionals (Jegatheesan, 2009). Cultural differences in nonverbal communication can also serve as barriers between family members and professionals (Cheremshynski et al., 2013). For example, in Japanese culture, communication in public in a vague and ambiguous manner maintains a standard of politeness, while one’s true feelings, usually are not shared, and if shared, only expressed to persons very close to them (Cheremshynski et al., 2013). Treatment effectiveness may be strongly interfered if professionals are not aware of these cultural rules.

In addition, most psychotherapy approaches that originated from Western values do not apply to the Asian American population very well, because the basic assumptions of horizontal relationship, individualism, independence, self-closure, and change may go counter to the Asian values of vertical relationship, interdependence, self-control, and acceptance (S. C. Kim, 1985). Therefore, sensitivity attending to their needs is extremely important when working with Asian parents. For example, as in structural family therapy, protection of boundaries from interference from other subsystems (such as in-laws) cannot be totally applied to some Asian families because they were taught to listen and respect elders. In order to encourage behavior changes, authority figures in the subsystems (such as in-laws) usually need to be included (Navarre, 1998). For some traditional Asian families, family-based parental control, which includes grandparents, parents, and older siblings were more prevalent than parental control. Practitioners need to understand the power structures within and/or outside the Asian family by conducting assessments (S. C. Kim, 1985).

Because the respect toward authority is highly valued in Asian culture, Asian Americans usually expect that the professionals (such as doctors and therapists) can cure or correct the client (S. C. Kim, 1985). The therapist can utilize the expectations to define clear roles in therapeutic situations and use specific cues for the family to judge the expertise and authority (S. C. Kim, 1985). Therapists taking a directive therapy stance also work more effectively for many Asian Americans because they expect receiving advice from therapy (S. C. Kim, 1985).

Conclusion

The disability of a child challenges the core values and resources of the family system, and families usually experience more stress and have more depressive symptoms adapting to emerging needs (Power & Orto, 2004). Researchers and professionals addressed their mental health issues through different intervention approaches, such as structural family therapy and cognitive behavior therapy (Messina et al., 2015; Singer et al., 2007).

Asian American families of children with developmental disabilities experience unique challenges because of their collective values, stigma feelings, different acculturation levels, discrimination experiences, lack of understanding of the diagnosis and mainstream service delivery system, and communication barriers (Choi & Wynne, 2000; Epstein et al., 2012; Jegatheesan, 2009). Researchers need to develop culturally tailored family intervention which specifically tackle these challenges.

Families with a disability usually suffer in a dysfunctional system, as the structure may be altered with children established in positions of power due to a power vacuum, necessity, or the inability of parents to maintain their executive role (Messina et al., 2015). Intergenerational conflicts are also common in immigrant Asian American families due to the different acculturation levels between the generations ( J. M. Kim, 2003; E. Kim et al., 2014). Structural family therapy can effectively tackle these dysfunctional dynamics and boundary issues for Asian American families because it addresses the family as a whole system (Navarre, 1998).

CBT was found to be one of the effective interventions in promoting parents’ mental health based on the studies (Anclair & Hiltunen, 2014; Gammon & Rose, 1991; Greaves, 1997; Kirkham, 1993; Nixon & Singer, 1993; Schultz et al., 1993; Singer et al., 1994; Wong & Poon, 2010; Wong et al., 2011). Cognitive restructuring, coping skills, and communication skills training were helpful for many families in decreasing parental stress, depressive syndrome, and increasing social support (Gammon & Rose, 1991; Singer et al., 2007). Incorporating structural family therapy and CBT will be very promising for Asian American families of children with developmental disabilities.

Footnotes

Author’s Note

This research was done while the author was a doctoral student at Mississippi College.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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