Diverse Perceptions of Social Support: Asian Mothers of Children With Intellectual Disability

Diverse Perceptions of Social Support: Asian Mothers of Children With Intellectual Disability

Ow, Rosaleen

Our article has two main objectives. The first is to share findings on the perception of social support among Chinese and Malay Muslim mothers of intellectually disabled children in multicultural Singapore. Second, in view of the diversity among Asians, it argues for the need to develop culturally sensitive approaches in the utilization of social support among subgroups in an Asian context.

Cross-cultural practice has long been the focus of attention in multicultural societies (e.g., Blake, 1991; Fellin, 2000; Ow, 1999; Payne, 1998). J.W. Green (1982, pp. 53-59) described cultural competence as consisting of five major features, namely, having an awareness of one’s cultural limitations; being open to cultural differences; exercising a systematic, client-centered learning style; utilizing cultural resources; and acknowledging the existence of cultural integrity in which traditional culture may become differentiated, but not replaced, through contact with other cultures. Green’s conceptualization of the help-seeking model among minorities suggested that a client would recognize and label an event as a problem in the context of personal cultural values and beliefs. Help seeking would also include the utilization of indigenous as well as professional resources (J. W. Green, 1982, p. 30). Since Green’s study, there have been many attempts to define the nature of cross-cultural practice and the concept of cultural competence (e.g., Chan & Chan, 2001; Lynch & Hanson, 1992). More recently, Dhooper and Moore (2001) also proposed that, particularly in the United States, cultural competence should include an understanding of the commonalities of experiences and worldviews among groups culturally different from mainstream Americans. These commonalities include understanding the impact of the meaning of the family, the place of religion, the effect of poverty and lower socioeconomic status, and the level of acculturation and culture related disorders among such population groups. In the context of the present article, worldviews associated with the family and religion are most pertinent (Ow & Katz, 1999; Siti Sohanah & Ow, 2001).

Perceived social support reflects people’s beliefs about whether others are likely to provide assistance and emotional support when needed. However, in addition to general perceptions of support, it has been postulated that individuals also develop sets of expectations about the availability of social support in a relationship-specific manner (Ho & Chiu, 1994; Pierce, Sarason, & Sarason, 1990; Sarason, Pierce, & Sarason, 1990). These expectations are a result of historical experiences with specific others and indicate a unique way in which an individual views each of these others. Antecedents such as worldviews and early social relationships in the development of perceived social support have been found to be important (Flaherty & Richman, 1986; Pierce, Sarason, & Sarason, 1991). In Singapore, the Islamic worldview in engaging community and extended family support in the process of developing resilience among teenaged children of Muslim divorced families was found to be important (Siti Sohanah & Ow, 2001).

Persons with intellectual disability commonly live at home with their families (Fujiura & Braddock, 1992, Smull, 1989). Generally, the pattern of assistance to persons with intellectual disability emphasized the enlistment, as availability permits, of immediate family first, then other relatives, friends and neighbors, and finally formal support. For this reason, it is therefore not surprising that marital satisfaction was the best overall predictor of coping behavior (Friedrich, 1979), or that mothers identified their spouse as the greatest source of social support (Blacher, Nihira, & Meyers, 1987). Another study of such families also found that intimate support was relied on more than either friendship or community support networks (Flynt, Wood, & Randall, 1992). Having available both tangible support and close emotional support is important in developing an individual’s sense of efficacy among low-income mothers, which in turn affects the successful use of existing social support systems (B. L. Green & Rodgers, 2001).

Tata and Leong (1994) contended that the attitudes of Chinese-American students toward seeking professional help might be influenced by traditional Chinese cultural values that emphasize reliance on oneself. However, interdependence had also been identified as an important aspect of interpersonal relationship among individuals in the Asian context, (e.g., Chu & Sue, 1984; Hwang, 1987). A study of Chinese mothers of adult children with moderate to severe intellectual disability in Hong Kong, for example, found that support was received mainly from family members and relatives and self-help groups, with professionals perceived as a relatively less common source of support (Chen & Tang, 1997).

Research on the social support of parents of children with intellectual disabilities in Singapore is sparse. Seminal efforts include a qualitative study of 15 Chinese families on the factors that influenced seeking help from the informal network in the care of young children with intellectual disability. It found that among the five factors affecting help-seeking behavior-response cost (perception of the practical and emotional costs to the potential help provider), dependability, indebtedness, reciprocity, and satisfaction-response cost was the most important in seeking informal help with practical needs. For financial needs, all five factors were important, and for seeking help with emotional needs, satisfaction and reciprocity were cited as important considerations. Help with meeting the need for information about intellectual disability and the social services available were sought mainly from professionals and not from the informal helping network (Goh, 1994). A study on permanency planning of Chinese parents for children with intellectual disabilities in Singapore showed that in addition to economic factors, social cultural variables such as the concept of “face” (i.e., social esteem) and the fear of being considered unfair in imposing a long-term burden on close relatives, especially offspring without disabilities, were also important factors in seeking social support. Because of the perceived difficulties and sacrifices involved, parents tend to view caring for the child with disability as mainly a responsibility to be shared by spouses, in spite of the collectivist orientation generally evident in other areas of family life (Ow & Fu, 1999).

Singapore is an island state with a multicultural population of about 3 million citizens, consisting of approximately 76.8% with a Chinese ethnic background; 7.9% with origins in India; 13.9% from the surrounding Malay Archipelago; and 1.4% others, including Eurasians (Singapore Census of Population, 2000). The Chinese tend to be religious (about 80% reported having a religion). Chinese religion is pantheistic, encompassing a variety of worldviews that range from animism; worship of ancestors, fairies, and heroes from Chinese legends; to formal religions such as Buddhism, Taoism, and Christianity (Ow, 1991; Tong, 1989; Wee, 1977). Historically, the Chinese were migrants from different provinces in China and were organized largely in self-help groups called clan associations that reflected the many provincial dialect-surname lineages from their regions of origin. In spite of modernization, the Chinese continue to hold many of their traditional values, such as patrilineal family structure, with most Chinese relying first on the social support of close kin before seeking other sources of help (Ow & Katz, 1999). A study of 301 university students in Singapore found that the need to achieve among the Chinese is high compared to students from other ethnic communities and is possibly an intrinsic motivation that contributes to the Chinese values of industry and harmony (Chang & Wong, 1993). Academic and economic success is therefore a very important aspect of the Chinese life goal. The term for disability in Chinese, canfei, means handicap or uselessness and is normally associated with physical rather than an intellectual condition. Apart from the “loss” of a child who can compete and fulfill family goals for success, the birth of a child with intellectual disability is sometimes perceived as evidence of a parent’s bad karma from the past, or a curse or retribution for bad behavior toward a god or another person. Hence, the birth of a child with disability may also result in the loss of face for the parents. Many myths surround the birth of a child with disability or deformity. Traditional Chinese mothers have been reported to blame themselves for giving birth to a child with disability because they had ignored the various taboos for pregnant women, for example, handling sharp instruments; looking at ugly or frightening objects; eating the wrong kind of food (Lam, 1992); or even accidentally stepping on offerings made to the gods. Such parents may avoid seeking help outside the family, except perhaps to obtain advice or assistance from temples in exorcising or placating evil spirits (Fraser, 1988). In addition to the normal disappointment associated with giving birth to a child with intellectual disability, the social implication intensifies this highly traumatic and stigmatizing experience. The event is often kept a family secret as with other childhood health problems (Ow & Katz, 1999).

In comparison, the Malays are almost entirely Muslims, obedient to the teachings of Islam within a close-knit and supportive community. Islam envisages a society in which close relationships exist between its members, based on service vis-a-vis Allah on the one hand and a close bond of brotherhood and sisterhood among the members of the Islamic community on the other. Marriage is not just for the emotional fulfillment of two individuals but also has religious significance in its role of carrying out the teachings of Islam. Although men and women are created equal, the differences in weaknesses and strengths between them are recognized. They are therefore assigned different roles. The husband is given the central role as the father, the patriarch, and imam (religious teacher), around whom the family rotates through his leadership in prayers and other acts of worship and in protecting and providing for the family. Mothers therefore tend to consult the husband on family matters, in preference to other individuals.

Islam places great emphasis on the preservation of the family, the care and compassion for its members, and the sanctity and dignity of life as given by Allah. Responsibility to members of the family includes taking care of those who are incapacitated or have fallen into misfortunes, such as widows and orphans. Historically, polygamy was allowed in Islam as a way to care for widows and orphans and was an example of the importance of family and community social support. A child is a gift from Allah and must be cared for and loved regardless of its physical or intellectual state. Islam believes that all human beings are created from the same substance by Allah and belong to a single body. If a single member experiences pain, all the other members will become restless because of that pain. Each person has a duty towards every other person in the community. The Prophet Mohammed is quoted as saying, “Every one of you is shouldering a duty and will be responsible for what you are assigned” (JAMIYAH, Muslim Missionary Society Singapore, n.d., p. 36). Islam does not divide life into matter and spirit. The acceptance of a child with intellectual disability may be seen in a spiritual light from a quote in the Qur’an (2: 286) saying that “God only assigns to a soul what it can cope with” (Ja’afar, n.d., p. 31).

The diversity in religious worldviews and cultural practices in help seeking in Singapore has resulted in the provision of both national and community-based social services (Ow, 1999). Although some efforts have been made to examine factors that might influence help seeking among Chinese parents coping with chronic childhood illnesses in Singapore (Ow & Katz, 1999), to the best of our knowledge, no comparison with Malay Muslim families has been attempted. The present exploratory study investigated the social support network characteristics among Chinese and Malay Muslim mothers of children with intellectual disability. Given the collectivist orientation of the Asian population (Markus & Kitayama, 1991) and the cultural propensity for keeping health matters secret from strangers, we expected some similarities in perception between Chinese and Malay Muslim mothers, but we also suspected that fine differences may exist. In general, we expected that for both Chinese and Muslim respondents

1. The network size would be similar.

2. The sources of social network support would be mostly immediate family rather than extended family, friends and formal sources.

3. The spouse would be the most common source of support among immediate family members.

4. The Chinese mothers would be more likely to seek support from formal sources than the Malay Muslim mothers, given the differences in cultural practices as a consequence of differences in worldviews.

Method

Participation in the study was voluntary, with informed consent. The sample consisted of 25 Chinese and 12 Malay mothers with a child attending one of the five special schools operated by the Movement for the Intellectually Disabled of Singapore (MINDS). MINDS provides a range of remedial and developmental services for young children with an IQ of about 50 and below. Only families with children from 5 through 16 years of age were included in this study. At the moment, there is no central registry for persons with intellectual disability in Singapore. Official figures of the number of persons with intellectual disability in Singapore are therefore not available. However, on the basis of the World Health Organization’s estimate, the prevalence figure should be between 1% and 3% of the over 3 million Singapore citizens. For purposes of service provision, individuals of IQ below 50 with limited capacity for self-care and limited social skills are categorized as having intellectual disability. The term mental retardation is now rarely used in Singapore.

Data collection was conducted by means of the Social Support Network Index (SSNI), modeled after the 27-item Social Support Questionnaire developed by Sarason, Levine, Basham, and Sarason (1983). The SNNI measures support across six domains, namely, need for information, emotional, social-recreational, financial, childcare, and practical needs. To test the psychometric properties of the SSNI, we performed a pilot study with 83 mothers of children with intellectual disability. Reliability analyses and confirmatory factor analyses were performed. There was good evidence that one strong factor underlies each of the two SSNI scores (network size [N] and satisfaction [S]) and that they represented different dimensions of the general concept. The N scores and S scores correlated at .37 (p

Results

Network Size

The Chinese parents had a mean P (network profile) score of 8.56, whereas the Malay parents’ mean P score was 4.00. This result appeared to indicate that the Chinese parents had a wider social support network than the Malay parents. However, on examining the specific N scores across the six domains between the Chinese and Malays, the only significant difference found was for the socializing domain, t(35) = 3.595, p

Network Support

There was no significant difference in S scores between the Malay and Chinese mothers across the six domains. The Malay respondents reported a mean S score of 5.667, whereas the Chinese participants reported a mean score of 5.174.

Although the quantitative analysis seems to dovetail with the anticipated cultural differences between the two groups, the small sample size (N = 7) may limit the power of inferential statistics and hence the generalizabilty of the findings. As such, the following report on the perceptions of the mothers relied more on the analysis of descriptive data, in keeping with the exploratory intent of the study.

Network Profile

We examined the sources of support by classifying the people listed in the network profile into four groups: immediate family, friends, extended family, and formal. For both ethnic groups, comparison across the four sources of support showed that immediate family (spouse, parents, siblings, offspring) has the highest mean (see Table 1). The expectation that support is mostly sought from family members rather than friends, extended family members, or formal sources is supported.

Most Common Source of Support Within the Immediate Family. To examine the most common source of support within immediate family members, we further divided the family into four subgroups, namely, spouse, parents, siblings, and offspring. We found that spouse is the most common source of support (Table 2) for both the Chinese (80%) and Malay Muslim (100%) mothers, confirming what is already known about the characteristics of Chinese self-disclosure and social support (Ow & Katz, 1999).

Formal Sources of Support. Forty-eight percent of the Chinese parents reported at least one formal source of support in their support network, but none of the Malay Muslim mothers reported any formal sources of support (Table 2).

To provide further understanding of the differences between the Chinese and Malay Muslim mothers in the use of formal support services, we examined the support source across the six domains. Our results showed that none of the Malay Muslim respondents cited formal social support as a source (Table 3) across the six domains. For the Chinese cohort, formal social support was listed in the domains of need for information and emotional support.

Discussion and Implications

Although the small number of respondents does not allow us to generalize the findings with great certainty, the descriptive data do provide reasons to believe that there may be valid differences in the social support patterns between Chinese and Malay Muslim mothers of children with intellectual disability.

Our expectations that diversity in perceptions regarding social support may exist within the broad classification of Asian families appeared to be supported. Although the perception of social support by both group of mothers appears to follow the same “onion-skin” pattern of self-disclosure among Chinese families of children with chronic illnesses (Ow & Katz, 1999), some differences between Asian Chinese respondents and Asian respondents with an Islamic background may exist. Worldviews such as those derived from a monotheistic religion such as Islam may provide a specific set of historical, developmental, and cognitive experiences regarding the availability and parameters of social support in a family crisis (e.g., Sohanah & Ow, 2001) that are different from those of non-Muslim Asians

For the Muslim individual, the Islamic syariah (laws) provides governance in all aspects of life, ranging from family and economic affairs to social etiquette and politics, with specific injunctions on family and community relations (Abul A’la Al-Maududi, 1981; Hammudah Abdalati, 1991). According to Tham (1994, p. 21), the Muslim conceptualization of the family as an institution cannot be separated from the individual’s understanding of what constitutes a faithful Muslim. Islamic injunctions related to the family stress the two interrelated precepts of the family as a source of religious training for the young and as a structure of mutual ties and obligations binding all related to each other by blood. Islam makes clear stipulation regarding the roles of the father as a provider and protector and the mother primarily as nurturer. It is therefore not surprising to find that Malay Muslim mothers tend to seek support primarily from the spouse in almost all areas of daily living. Other family members and extended kin may provide some, but not always crucial, support. In addition, the emphasis on community bond and support, as well as the injunction to leave what is beyond the individual’s control to the Timeless Knowledge of Allah (the concepts of Qada’ and Qadar) may act as a cognitive parameter with regards to seeking help beyond the Islamic community. The respondents’ scores on satisfaction with network support may be a reflection of the community’s acceptance that the support available within the family and community is sufficient regardless of the perceived lack of formal sources of support.

The Chinese, on the other hand, are generally secular and pragmatic in problem solving. Ali (1998) found that even if religious, Chinese respondents compared with Indian and Malay Muslim respondents tend to have a more extrinsic orientation (religion as a means to an end) rather than a purely intrinsic orientation (religion as inherently meaningful to life regardless of needs). Although the Chinese may be directed by values of social-collective orientation (Au, Chiu, & Rudowicz, 1995), an element of idiocentrism in seeking social support may exist. The Chinese respondents in the present study may, in comparison with their Malay counterparts, have a larger cognitive freedom to expand their network support beyond the family and ethnic community to friends and other sources of formal support.

The findings have implications for the provision of social services to a diverse Asian population in any multicultural society. Although Asians are generally said to be collectivist and family oriented, it is important to note that generally individuals with an Islamic worldview would find the sense of coherence from religious, rather than merely social, injunctions. Whereas non-Muslim Asians may begin with a collectivist orientation rooted in culture and traditions, collectivist behavior for a Muslim individual is likely to be directed by a transcendental force beyond culture and traditions. Families of children with intellectual disabilities have many needs and face different challenges across the lifespan of the child. Immediate social emotional support is necessary at the point of diagnosis or confirmation of the disability, and social workers should include immediate family members, especially the spouse or grandparents of the child, in managing the crisis. However, for longer term needs such as respite care and permanency planning, Chinese parents may be more proactive in seeking formal help, whereas Malay Muslim parents may be more reticent about using formal support such as a residential home unless these are provided in keeping with the tenets of Islam regarding familial and community faith, as well as taboos related to food and rules of interpersonal relationships, particularly between genders.

According to Tsang and Bogo (1997), two key processes in the engagement stage, namely, negotiating compatibility and establishing trust, have implications for a positive working relationship and positive outcomes in cross-cultural practice. In situations where it is necessary to develop trust in enabling Asian mothers to utilize formal services effectively, focusing on work with the immediate family rather than just the individual mother may be more effective. The advantage of including the immediate family, especially the spouse, as a user of formal support cannot be over emphasized, especially among Muslim women. The involvement of the spouse indirectly indicates approval and support for mothers in utilizing services outside the family and ethnic community.

In addition, reliance on family and other informal social support has implications for the stock of knowledge that service users bring to a problem-solving situation. In contrast to professional knowledge, lay knowledge is likely to be a composite of “bits and pieces” of anecdotal information about etiology and helping resources garnered from the informal social support network (J. W. Green, 1982). Hence, knowing about the service user’s sources of informal social support prior to their seeking help from formal sources is one useful avenue for understanding the fears and expectations that often accompany help seeking. Attention to this stock of knowledge may contribute to the process of negotiating compatibility and the success of cross-cultural practice.

In conclusion, although the study was conducted in Singapore specifically with mothers of children with intellectual disabilities, the findings may be relevant for understanding the diversity among Asians in any multicultural society. In this era of rapid globalization, perception of family relations and social support within the Asian Chinese social-collectivist and the Islamic worldviews may be more portable across time and space than envisaged. However, this study is exploratory in nature, and the generalizability of the findings is limited by the small sample. Further research should consider expanding the sample to validate the findings and enhance understanding of the utilization of social support among diverse Asian population groups.

Copyright Families in Society Apr-Jun 2004

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