An overview of parental perceptions in cross-cultural groups on disability.
This article examines studies on parental perceptions on disability among families of children with disabilities across varied traditional cultural groups, including Mexican American, Chinese American, Arab, and Jewish communities. These studies have focused on parental perceptions on the nature, causation, and treatment of disability.
Research and practices on child development and EI/ECSE reveal a great need for understanding the contexts of families, along with recognizing families' cultural backgrounds in EI/ECSE programs. Therefore, the impact of sociocultural influences on infant and child development is acknowledged and widely accepted in recent conceptual models and approaches of development, including an ecological model (Bronfenbrenner, 1979), a transactional model (Sameroff & Fiese, 2000), and relationship-based approaches (Bertacchi, 1996; Moss & Gotts, 1998). These models consider the child a focus within the immediate context of his/her family, community, and social services. Giving a great emphasis to the complexity of development and to the large number of environmental influences on children's development, these models also view the family, along with their cultural background, as having a pivotal role in the development of their children. Relationship-based approaches focus on the relationships between parent and service providers, between parent and child, and between child and service providers. These approaches focus on the child's and family's strengths and the child's adaptive capacities within the ecological context; thus, they are in harmony with sociocultural theory about learning. The goals of assessment and intervention in relationship-based approaches are identified, based on family and cultural expectations and improvement of parent-child relationships (Burnett & Meares, 2000).
In addition to receiving attention in conceptual models of development, the importance of sociocultural constructs in the development of children and in the field of EI/ECSE has been receiving great consideration in the political and clinical areas. For example, the Individuals With Disabilities Education Act (IDEA), originally signed in 1986 (P.L. 99-457) and amended in 1997, acknowledges the child and family as a focal point in EI/ECSE programs, and encourages family involvement in the EI/ECSE programs (Burnett & Meares, 2000). Active parental participation is extremely valued during the whole process. Individual family service plans (IFSPs) also encourage parental involvement. The aim of the IFSP is to set goals and objectives for the family and child, based on their needs. The notion of the IFSP illustrates the great attention given to families of children with special needs, a significant change in EI programs, especially for families and practitioners, in terms of positive interactions (Meisels & Shonkoff, 2000).
The demographic pattern in the United States is rapidly changing, as is the cultural composition of the children who have special needs or are at-risk for disabilities. For example, the 2000 U.S. Census revealed that both African Americans and Hispanic Americans constitute 25.4 percent of the total U.S. population. Trends indicate that Hispanic Americans will become the country's largest ethnic minority, accounting for 25 percent of the U.S. population by 2050 (Howard, Williams, Port, & Lepper, 2001). It is also assumed that a greater proportion of young children from diverse groups will need EI/ECSE programs and services, possibly due to socioeconomic, cultural, and language barriers. These young children with special needs, and those at-risk, and their families are often culturally different from most EI/ECSE professionals. As a result of the new trend utilizing family-centered EI/ECSE practices, EI/ECSE professionals will need to be culturally sensitive when interacting with families with special needs children.
The success of EI/ECSE programs often depends on understanding, respecting, and being sensitive to the cultural contexts of children with disabilities. In cultural contexts, parents' perceptions about their children often affect their behaviors, such as seeking help, setting goals, and cooperating with the professionals regarding programs affecting their children. In short, parents' perceptions shape their behaviors toward the entire process of EI/ECSE programs (Wayman, Lynch, & Hanson, 1990).
A "cultural mismatch" (Coll & Magnuson, 2000, p. 96) between service providers and parents may lead to less effective services for children, if their parents" views about the development of their children and the services differ from those of the intervention system and service providers. The goal is to build a bridge between those different beliefs on behalf of child.
The efficacy of professionals working with culturally different families is influenced by families' cultural values and beliefs about the disabilities of their children. Therefore, the first and most important task for professionals is to understand parents' perceptions about the nature, causation, and treatment of the disability of their children. Since these perceptions shape parents' attitudes towards the entire intervention process, studying parental perceptions on disability, among families of children with disabilities and across varied cultural groups, brings greater insight into the practice of building positive interactions between parents and EI/ECSE professionals.
Perceptions Regarding the Nature of Disabilities
Parents' perceptions about the nature of their children's disabilities have been a focal point among different cultural groups (Mexican American, Chinese American, Arab, and Jewish communities) in several studies (Garcia, Perez, & Ortiz, 2000; Mardiros, 1989; McCallion & Janicki, 1997; Reiter, Mar'i, & Rosenberg, 1986; Ryan & Smith, 1989; Stahl, 1991; Steinberg & Davila, 1997). These studies indicate that although parents' perceptions on the nature of a disability may differ from each others' to some degree, based on their cultural values, they also hold similar views about the nature of a disability. Common perceptions include seeing their children as developing normally, identifying their children's condition as a temporary or passing condition, and perceiving a disability as God's punishment or, conversely, God's special gift.
Developing Normally. Studies of Mexican American parents of children with disabilities (Garcia, Perez, & Ortiz, 2000; Mardiros, 1989) demonstrated that the parents believe their child's development to be normal. Although children in both studies were disabled, the majority of parents did not believe that their children had any disability. Some parents defined their child as having both a disability and developing normally. In the exploration of Mexican American mothers' beliefs about their children with language disabilities, Garcia, Perez, and Ortiz (2000) state that Mexican American mothers were not concerned about their children's language difficulties. Although they accepted that their children were developing at a different rate, they had expectations that their children would have better communication skills after age 3. On the other hand, parents in the study by Mardiros (1989) clearly distinguish between being disabled and being normal. Believing that each child with a disability was unique, parents perceived their child's condition as a disability, and not an illness or disease.
Temporary/Passing Condition. Considering the condition of children with disabilities as a temporary or passing one is a common parental perception among different cultural groups. This perception was reported in several studies among Mexican American parents (Garcia, Perez, & Ortiz, 2000), Chinese American parents (Ryan & Smith, 1989), Druse parents in Arab communities (Reiter, Mar'i, & Rosenberg, 1986), and Jewish Oriental mothers (Stahl, 1991). Studies indicate that Mexican American mothers believe that as their children grew older, they would "catch up" with their peers. Although the parents of Chinese American children with mental retardation and developmental disabilities demonstrate a lack of knowledge and understanding of the diagnoses, they had a tendency to see the disability as a temporary problem (Ryan & Smith, 1989). Druse parents in Arab communities, who believe in reincarnation and life after death, also consider the disability to be a temporary or passing condition. Jewish Oriental mothers were greatly confident in their beliefs that a change would happen suddenly and their child would become "normal." One of the mothers from the study states with assurance, "She will grow, God will be merciful" (Stahl, 1991, p. 365).
God's Punishment/God's Special Gift. God is perceived by some parents, especially those coming from strongly traditional cultural groups, as the agent of disabled children. The studies with Hispanic parents reveal they view disability as a punishment for wrongdoing, or as a divine punishment for sin. The sin, in general, was presumed to be that of the parents (Mardiros, 1991; Steinberg & Davila, 1997). McCallion and Janicki (1997) point out that while some Mexican American parents see their disabled child as God's special gift, others might see the child as God's punishment. Jewish Oriental mothers also conceptualized the disability as God's punishment (Stahl, 1991).
Perceptions Regarding the Causation of Disability
Parental perceptions about the causes of disability have a tremendous impact on parents' behaviors in terms of seeking help or intervention for their children. Consequently, many studies investigate the perceptions of parents from different cultural groups about the causation of childhood disabilities (Hanson, Lynch, & Wayman, 1990; Mardiros, 1989; Nicholls, 1993; Reiter, Mar'i, & Rosenberg, 1986; Ryan & Smith, 1989; Stahl, 1991; Steinberg & Davila, 1997).
Studies show that parents have various cultural explanations for the causation of their children's disabilities. Studies also reveal that some parents have a tendency to accept modern explanations that are rational, scientific, or biomedical in nature. Parents believe medications taken for infections, diabetes, and epilepsy might affect the development of a child. Mexican American parents cited premature birth, oxygen deprivation, forceps delivery, induced labor, and cerebral aneurysm as possible causes for a child's disability. Environmental factors also were commonly cited; air and water pollution, preservatives in food, and toxic waste disposal were some of the reasons given by Mexican American parents to explain causes of disability (Mardiros, 1991).
Although studies show parents were aware of and cited scientific and biomedical causes, they also endorsed sociocultural or folk beliefs. Parents from traditional cultural contexts tended to express more traditional perspectives, including religious, supernatural, or folk beliefs, about the cause of a disability. Parents in the studies most frequently mentioned prenatal influences, religious beliefs, "fate" and the "evil eye," and the role of parents/families.
Prenatal Influences. Some cultural groups viewed prenatal influences as having a great impact on the causation of disability. These were accepted as causes of a child's appearance, character, and behavior. For example, it was commonly believed among Jewish Oriental mothers that meeting a bad or misshapen person or unclean animal during pregnancy might affect the development of the unborn child (Stahl, 1991). Mexican American parents also held to those beliefs to explain the cause of disabilities in children, and to other beliefs: practicing birth control, having had an abortion, not following a cultural prescription, seeking retribution against the spouse, and not wanting the child (Mardiros, 1989). Moreover, Mardiros (1989) states that parents also believe mistreating family members and prior attitudes toward people with disabilities might be causes of disability.
Religious Beliefs. Studies disclosed that religious beliefs also played a role in parents' views on causation of a disability. In many Asian and African groups, violating a religious code is believed to be a cause of disability, especially when rational explanations of disability are not clear (Nicholls, 1993; Ryan & Smith, 1989). Among religious perspectives about the causation of disability, God is considered the main cause, especially among Mexican American parents. When studying Hispanic families with deaf children, Steinberg and Davila (1997) found that most parents referred to God as the essential cause of deafness. Mardiros (1991) describes similar results from his study with Mexican American parents, which showed that parents most commonly believed that having a child with a disability was God's will. This belief may be conceptualized as God punishing the parent, testing the parent, or selecting the parent for reasons known only to God. Jewish Oriental mothers also showed similar feelings, referring to God as the cause of their children's disabilities (Stahl, 1991).
Fate and the Evil Eye. Hanson, Lynch, and Wayman (1990) state that many cultural groups place a strong emphasis on the role of fate in determining a person's outcome. Among those cultural groups, Jewish Oriental mothers reveal a strong belief in an impersonal force, such as fate. They saw fate as the primary causal agent for a disability. They had many stories that even God could not do anything to prevent fate (Stahl, 1991). Chinese American parents also pointed to fate as a causal factor (Ryan & Smith, 1989). Stahl (1991) states that the evil eye was accepted as a reality, especially among Jewish Oriental parents, and the causation of all kinds of misfortunes, including having a child with a disability.
The Role of Parents/Families. In some cultural groups, such as Chinese American, Jewish, and Arab communities, parents may consider themselves or their families as the causal agent of disability. For example, several Chinese American parents reacted with guilt about their child's condition. These parents believed that the child's condition was a result of something they had done and feared being blamed for causing the disability. Some blamed their spouse for causing the disability (Ryan & Smith, 1989). Stahl (1991) reports similar findings with Jewish Oriental mothers. Parents had a propensity to blame each other and gave great importance to the belief that the disability might have been caused by either the father's or mother's side of the family. The child's disability tended to produce feelings of shame and guilt among Arab societies (Reiter, Mar'i & Rosenberg, 1986) and Chinese American parents (Ryan & Smith, 1989).
Perceptions Regarding the Treatment of Disability
Parents' perceptions regarding the treatment of their child's disability are a critical factor influencing all aspects of the intervention process. Their perceptions shape their attitudes and behaviors towards seeking help, the kind of help they look for, and their support of the treatment process. When parents recognize that something is wrong with the development of their children, they start searching for all kinds of remedies. Most parents with modern cultural roots seek the advice of biomedical professionals. Some, however, emphasize traditional remedies first, as they believe them to be more effective. Studies show that although most parents in almost all cultural groups choose modern or biomedical treatments, they consider sociocultural, folk, or religious remedies as well (Brookins, 1993; Hanson, Lynch, & Wayman, 1990; Mardiros, 1989; Ryan & Smith, 1989; Stahl, 1991).
The studies also show that some parents from traditional backgrounds may defy reasonable health or treatment solutions for their children with disabilities. For example, institutionalization of children with profound disabilities may be recommended because of difficulties in management and the level of care needed. Among families with severely and profoundly affected children, studies showed that Mexican Americans were more likely to keep their children at home than in an institution. Mexican American parents believe that all family members are valued as they are, due to strong family unity. This belief is common among Native Americans as well (Brookins, 1993).
Among Mexican American parents, traditional healing practices were the most popular remedies for disabilities in this cultural group. However, the attitudes and meanings attached to folk remedies varied widely from family to family. Home remedies were utilized for usual childhood illnesses and were applied to the child with a disability. Mardiros (1989) reports that prayer was perceived as the most common treatment agent among Mexican American families. They "gave" their children spiritually to either the patron saint or the Lady of Guadalupe. They believed that the child would be ensured a perpetual place next to God by offering the child to God, cutting off the child's hair, refraining from drinking alcohol, and rededicating themselves to the child and family.
Ryan and Smith (1989) report that disagreements may exist between the parents' beliefs about physical, supernatural, and metaphysical causes of disability, and the Western diagnoses and professionals' beliefs. This conflict may lead the parents to seek some alternative cures.
Conclusions and Implications
When considering cultural beliefs on the nature of disability, results showed that some parents did not believe their children had a disability, although they recognized their children were developing at a slower rate. Interestingly, some parents within the same cultural group defined their children as having both a disability and as being healthy. Several cultures also perceive the disabled child as both a gift and a punishment from God. Some parents from different cultural groups also believed that the disability was a temporary condition.
Some parents held both biomedical and sociocultural/folk beliefs about the causation of the disability, and some believed only in supernatural and metaphysical causes. God was seen as a main causal agent among families who were in a more traditional or religious culture. Parents also identified fate, the "evil eye," and prenatal influences as other potential causes.
Studies showed that a strong relationship existed between the perceptions regarding the causation and the perceptions regarding the treatment of disability. Although most parents believed in the biomedical or modern treatment methods, many of those families, in addition to getting the modern treatment remedies, also relied on traditional folk or religious remediation methods. Studies also reveal that even parents from the same cultural backgrounds may hold different beliefs, based on their level of acculturation, socioeconomic status, and education.
Professionals have a tremendous responsibility to respond to the needs of young children with disabilities and their families from diverse groups. Research discusses these responsibilities (Bailey, 2001; Burnett & Meares, 2000; Lieberman, 1998; Vincent, 1992). Bailey (2001) states that given the diversity of family cultures, resources, priorities, and concerns, parent involvement and family support programs need to be individualized in EI/ ECSE practices. Professional interactions with families from diverse groups require being responsive to their individual cultural perceptions, expectations, and practices. In identifying some principles for EI practitioners, Lieberman (1998) states that "understanding a child, therefore, needs to involve an understanding of the psychological and sociological configuration created by the parent's culture and specific circumstances" (p. 4). In short, the interaction between professionals and parents must include knowledge of and respect for families' cultural beliefs in order to find common ground to help the child.
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Ibrahim H. Diken is Assistant Professor of Special Education, Anadolu University, Eskisehir, Turkey.
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|Author:||Diken, Ibrahim H.|
|Date:||Jun 22, 2006|
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