Amer. J.

Onhopsychiat 64(3), My 1994

STRESS AND ADAPTATION IN ORTHODOX JEWISH FAMILIES WITH A DISABLED CHILD

Yona Leyser, Ph.D.

A four-year follow-up study of 82 religious families of children with disabilities revealed decreases in the negative impact of the child and increases in sibling and overall family adjustment. Parents reported various coping techniques and cited religion as a source of strength. Lack of time, behavior problems, and limited availability or use of professional assistance were continuing difficulties.

he impact of a disabled or chronically ill child on family life has been widely researched and documented. Anecdotal observations and numerous empirical studies have concluded that the birth and continued care needs of a disabled child expose the family to increased levels of stress, frustration, strain, and chronic sorrow and also require readjustment in family roles, relationships, and organization (Beckman & Pokorni, 1988; Friedrich & Friedrich, 1981; Kazak & Marvin, 1984; McCubbin & Tine Huang, 1989; Mullins, 1987; Noh, Dumas, Wolf, & Fisman, 1989; Shapiro, 1989; Singer & Farkas, 1989). The many forms that these stresses and difficulties take are reported in the literature. Among the problems most often documented are physical and time demands, prolonged burden of care, feeling of stigma, long-term uncertainty, reduction of career opportunities, emotional and psychological difficulties of family members, lack of information and resources, strained relationships with professionals, and financial burden (Friedrich & Friedrich, 1981; Gallagher, Beckman, & Cross, 1983; Harris & McHale, 1989; Marcenko & Meyers, 1991;

Slater & Wilder, 1986). It is important to note, however, that these experiences are not all universal and that families differ in their reactions to a disability as well as in their coping resources (Bernheimer, Young, & Winton, 1983; Burden & Thomas, 1986; Crnic, Friedrich, & Greenberg, 1983; Powell & Ogle, 1985). In fact, researchers have found that some families experience no apparent negative effects and that many parents are capable of satisfactory adjustments (Abbott & Meredith, 1986; Parker, Hill, & Goodnow, 1989; Salisbury, 1987). Family experts have also noted a number of positive outcomes in families with a disabled member, including increased family cohesion, enriched and more meaningful lives, and increased understanding and compassion (Featherstone, 1980; Hymovich & Baker, 1985; Singer & Farkas, 1989; Turnbull & Turnbull, 1990; Wikler, Wasow, & Hatfield, 1983). The extent to which families successfully cope and adjust is determined by the availability and utilization of several psychological and environmental resources. Folkman, Schaffer, and Lazarus (1979) outlined five broad categories of coping resources to

A revised version ofa paper submitted to the Journal in June 1993. Author is at the Department of Educational Psychology, Counseling and Special Education, Northern Illinois University, DeKalb.

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1994 American Ortnopsychiatric Association, Inc.

YONA LEYSER mediate stress. These include 1) individual health, energy, and moral resources (e.g., initial state of mind, depression, physical disabilities); 2) problem-solving skills; 3) general and specific beliefs (e.g., about self-efficacy or in existential belief systems); 4) social networks; and 5) utilitarian resources (e.g., socioeconomic status, money, community social agencies). Numerous empirical studies have found that these resources are related to family adjustment and reduced parenting stress (Frey, Greenberg, & Fewell, 1989; Friedrich & Friedrich, 1981; Friedrich, Wilturner, & Cohen, 1985). Although many investigations of family stress and coping have been conducted, few have explored changes in family stress and adaptation over time. For example, a follow-up study of families with retarded children ranging in age from preschool to young adulthood (Suelzle & Keenan, 1981) found increased utilization of several types of health care professionals (e.g., doctors) over time, yet also noted a decline in the utilization of personal support networks (family members, friends). In a ten-month follow-up study of mothers of retarded children, Friedrich, Wilturner, and Cohen (1985) reported significant increases in maternal depression and in parent and family problems. In contrast, a two-year follow-up of families of preterm infants (Beckman & Pokorni, 1988) found no significant changes in parent and family problems, no changes in the amount of social support parents received, and a significant decrease in the number of child-related problems. The present study is a four-year followup of religious families with a disabled child investigated in Israel during the 1986 1987 school year by Leyser and Dekel (1991). Data from the previous study showed that, although the families experienced such hardships as financial difficulties, lack of community support, feeling of stigma, behavior problems, and shortage of time, many were coping and adjusting adequately. The present follow-up investiga-

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tion, carried out during the 1990-1991 school year, was designed to measure changes over time in 1) types and levels of stress experienced, 2) utilization of psychological and environmental coping resources, and 3) overall adjustment. It was hypothesized that families would continue to encounter major life stressors yet would demonstrate overall adequate adjustment and would lead normal lives within their community.
METHOD

Subjects Eighty-two families of children with moderate to severe developmental disabilities participated. They resided in a section of Jerusalem that is inhabited by ultra-orthodox religious Jews who share a deep commitment to a life-long religious life-style. They follow strictly the edicts and obligations specified in Judaic sources, i.e., the Bible, Talmud, and the Halachic writings, which are highly specific about the conduct of life for Jews. Families that are intact and functioning harmoniously are highly valued, and extensive measures are taken to prevent them from breaking up. According to Lauffer (1988), these families have three major characteristics. 1) Fathers, though heads of the households, are not necessarily the breadwinners. They serve as biblical scholars and, as such, have a unique standing in the family hierarchy. Mothers expect the fathers to study and to provide educational guidance and leadership, while they themselves are expected to raise and educate the children according to the Judaic sources. 2) To have many children is both an obligation and an ideal. 3) The rabbi is the educator and the spiritual leader of every person, family, and the community. Contact with persons or institutions outside their religious circle, including health-care and human-services agencies, is very limited for members of the community. The children's primary handicapping conditions included mental retardation (#=33), learning disabilities (N=2S), and organic disabilities (i.e., CNS impairment) (#=13).

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FAMILIES OF DISABLED ORTHODOX JEWISH CHILDREN disabled child on family life and on siblings, areas of daily hardship and stresses, parental use of personal psychological adaptation techniques, and the availability of informal (family, friends, neighbors) and formal (professional) support systems; several items focused on future plans and concerns. In the final section the interviewer was asked to judge the overall level of family adjustment, functioning, and stability on five-point Likert-type scales. The questionnaire did not include items exploring views about spouses' roles and behavior because such questions have been discouraged in that religious community (Lauffer, 1988). Responses, recorded by the social worker on the interview forms, included yes or no answers, ratings on fivepoint Likert-type scales, and answers to several open-ended questions. Of the interviews, 90% were with mothers, 8% with fathers, 1% with both parents, and 1% with other family members. Because of their preponderance among the caregivers interviewed, respondents are generally referred to as mothers in this article. Measures of child competence. Several domains taken from the revised American Association on Mental Retardation Adaptive Behavior ScaleSchool edition (ABS) (Lambert & Windmiller, 1981) were used to assess the adaptive behavior of the disabled child. Using the Hebrew version developed by Riess and colleagues (Ministry of Labor and Welfare, n.d.), teachers rated the students during the first and the followup studies on ten items selected from four domains, as follows: Eating and Dressing (Domain 1, Independent Functioning); Writing and Reading (Domain 4, Language Development); Initiative and Attention (Domain 7, Self-Direction); and General Responsibility, Cooperation, Interaction with Others, and Participation in Group Activities (Domain 8, Responsibility). Extensive information is available on the development of the ABS that has established its validity (predictive, construct) and reliability (internal consistency).

A few of the remaining eight children were identified as emotionally maladjusted (autistic), and others with physical and sensory disabilities. Most disabilities were identified early (40% at or shortly after birth, and 90% before children entered school). About 60% of the children with disabilities were firstborn, and at the time of the follow-up their mean age was 11.63 years (range=6-17 years; SD=2.30). The group consisted of 55% girls and 45% boys. The mean age of fathers was 41.51 (range=29-68 years; SZ>=7.91); the mean age of mothers was 39.06 (range=28-57 years; SD=6.64). Procedure Both parent interviews and a child competence measure were utilized to provide a longitudinal follow-up of all families studied in 1986-1987 (Year One study). Home interviews. A semi-structured indepth interview with parents was conducted by an experienced female social worker who worked at the school and helped families in the community. Most interviews took place in the families' homes, but in a few cases parents were invited to their child's school. Due to the relatively large number of families and scheduling difficulties, data were collected over several months. Interviews ranged from 60 to 150 minutes per family. A slightly modified version of the interview questionnaire from the first investigation of the families (Leyser & Dekel, 1991) was used; a similar instrument has been utilized in a study of families living in rural communal settlements (kibbutzim) in Israel (Leyser, Margalit, & Avraham, 1988). The original version was formulated using several instruments reported in the literature measuring stress and coping (Borsch, 1968; Friedrich & Friedrich, 1981; Hymovich, 1983). The first section of the questionnaire elicited basic demographic information (ages of parents and children, number of children, and parental occupation). The second section focused on the impact of the

YONA LEYSER
RESULTS

379 in the follow-up. Most of the rest were employed as teachers, secretaries, or domestic workers. Several who had previously been homemakers now had paying jobs, while a few had left paying jobs to become fulltime homemakers. One noticeable change over the four-year period (see TABLE 1) was a significant increase in the number of children per family. Family and Child Adjustment TABLE 1 depicts changes on selected measures of family adjustment between Year One and Year Five. Fewer mothers in Year Five (24.7%) than in Year One (37.4%) reported that the special-needs child had a negative impact on family life. However, about one-fourth of the mothers felt that the child did have a negative influence on the family. Fewer mothers in Year Five (45%) than in Year One (60%) felt that they were stigmatized for having a disabled child. In Year Five more respondents felt mat siblings were better adjusted and that they had more time for siblings as compared to earlier responses (in Year One, 52.7% reported lack of time for siblings compared to 17.3% in Year Five). Only slight differences, however, were noted in perceptions of the time needed to care for the disabled child (at both times about 50% of respondents reported not having enough time) or in perceptions of the child's behavior problems (54% at Year One and 53% at Year Five).

Family Characteristics Several changes in family background characteristics were noted over the fouryear span. At the time of the Year One study, only two (2.4%) of the families were divorced; at follow-up, three families were divorced and one father was deceased. During the first investigation, eight (9.8%) of the 82 children studied were not in home placement: six were in foster families in the same community or from similar religious communities in Israel or the United States, and two had been placed in institutions. At the time of the follow-up study, 11 children (13.4%) were in out-of-home placements, ten in foster care and one in an institution. Changes were also noted in parents' occupation. As reported earlier, most fathers in the community were biblical scholars, studying or teaching, who received minimal monthly financial assistance from several religious charitable organizations. During the first study, 73% of the fathers were so occupied, while others were employed mostly as unskilled laborers or clerks. At the time of the follow-up study, 60% of the fathers were biblical scholars; the rest were owners of small businesses, merchants, clerks, or unskilled laborers. One father was deceased and another was unemployed. Shifts were also noted for mothers. The proportion of full-time homemakers had dropped from 86% in the first study to 82%

Table 1
FAMILY ADJUSTMENT IN FIRST AND FOLLOW-UP STUDIES
STUDY YEAR1 MEASURE Negative impact of disabled child on family life Family feeling of stigma Family adjustment (rating by social worker) Sibling adjustment Number of children Lack of time for disabled child Behavior problems of disabled child Lack of time for siblings Much or very much. Good or very good. M 2.83a 1.84 3.31" 1.78 5.74 1.53 1.53 1.52 % 37.4 60.0 46.2 77.2 50.0 54.0 52.7 YEAR 5

SD
1.59 0.77 0.98 0.41 2.82 0.50 0.50 0.50

M 2.32 1.52 4.10 1.89 7.26 1.50 1.53 1.17

%
24.7 45.0 68.3 82.9 48.1 53.1 17.3

SD
1.50 0.62 1.03 0.31 3.01 0.50 0.50 0.38

t 2.55 3.30 -5.08 2.54 -8.52 0.49 0.00 4.98

df 77 74 78 73 81 75 75 73

P 0.013 0.002 0.000 0.059 0.000 0.62S(NS) 1.000(NS) 0.000

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FAMILIES OF DISABLED ORTHODOX JEWISH CHILDREN

The overall rating by the social worker of family adjustment on the five-point Likert scale indicated a significant improvement over the five-year period, with 68% of families showing good or very good adjustment at Year Five, as compared to 46% at Year One.

the maternal and the paternal grandparents; almost 60% reported weekly or even daily contact with the maternal grandparents and over 4 1 % with the paternal grandparents, as compared to 41% and 30% respectively in Year One. However, a significant decline was noted (from 74.4% in Year One to 42.5% in Year Five) in consultations and contacts regarding the child with health Child Functioning TABLE 2 depicts ratings by teachers of care experts, i.e., family doctors, pediatrichildren's functioning (adaptive behavior) cians, neurologists, and therapists, as well during Year One and Year Five. Significant as a substantial decline (from 78% in Year improvement was noted for the total scale One to 32% in Year Five) in consultations score over the five-year span. Significant with the rabbi about the child. Data also improvement was also evident in six adap- showed that fewer parents (from 37% in tive skill areas: eating, dressing, reading, Year One to 12% in Year Five) expressed a need to communicate with other families writing, attention, and general responsibility. of special-needs children. Availability and Use of Resources Important changes were noted in the arResponses in the follow-up study sug- eas of financial resources and of commugest that, over time, parents have actively nity supports and services. Fewer mothers sought and used several emotional and so- (from 75% in Year One to 39.5% in Year cial-support resources and coping strategies Five) reported experiencing financial hard(see TABLE 3). Some resources, however, ships. Additionally, fewer mothers in Year were used less often than in Year One. For Five (35.8%) than in Year One (75.7%) reexample, a significant increasefrom44.4% ported that community services were unin Year One to 58.5% in Year Five was available to them. found in discussions about the specialDuring the follow-up interview, parents needs child with others, such as friends, were given a list of coping strategies and neighbors, and especially school personnel were asked to indicate those that they most (mainly teachers). Discussions within the often used in coping with pressures associfamily (from 59.2% to 68.2%) also in- ated with the special-needs child. The most creased. A significant increase was also frequently used were reported to be prayer noted in the frequency of contact with both (46.2%), talking to somebody (41.2%), and

Table 2
ADAPTIVE BEHAVIOR OF DISABLED CHILD IN THE FIRST AND FOLLOW-UP STUDIES STUDY YEAR1 MEASURE Adaptive behavior (total score) Eating Dressing Reading Writing Attention Initiative General responsibility Interaction with others Cooperation Participation in group activities M 27.58 3.98 3 84 1.85 2.00 310 2.69 2.54 3.00 2.02 2.59 SD 8.57 1.58 1.58 1.19 1.43 1.47 1.03 0.80 1.03 0.64 0.82 M 34.29 5.56 4 95 3.31 3.09 4.02 2.74 2.79 3.07 2.14 2.62 YEAR 5 SD 9.17 1.57 1.39 1.94 2.03 1.11 0.96 0.74 0.94 0.56 0 92 r -8.94 -10.26 -7.54 -7.86 -6.37 -6.38 -0.41 -2.50 -0.62 -1.64 -0.23 df p

81 0.000 81 0.000 81 0.000 81 0.000 81 0.000 81 0.000 81 0.680(NS) 81 0.014 81 0.530(NS) 81 0.100(NS) 81 0.820(NS)

YONA LEYSER Table 3

AVAILABILITY AND USE OF ADJUSTMENT AND COPING RESOURCES IN FIRST AND FOLLOW-UP STUDIES
STUDY YEAR1 MEASURE Discussions in family about disabled child Discussions with others Contact with maternal grandparents Contact with paternal grandparents Consultations with rabbi Consultations with experts Need to meet with other parents Financial hardships/constraints Limited community resources M 2.96 1.46 3.31 a 3.20a 1.77 1.73 1.37 1.81 1.88 % 59.2 44.4 41.4 30.3 78.0 74 4 36.7 75.0 75.7 SD 1.25 0.50 0.92 1.06 0.42 044 0.48 0.39 0.32 M 3.11 1.60 3.78 3.51 1.31 1.42 1.10 1.39 1.35 YEAR 5 % 68.2 58.5 59.5 41 4 31.6 42 5 11 5 39.5 35.8 SD 1.27 0.49 0.90 1.02 0.46 0 49 0 31 0 49 0.48

381

r df
-0 93 -2.01 -3 57 -2.53 7.36 4.95 4 00 6.53 7.59

75 0.355(NS) 77 0 048 56b 0.001 48" 0.015 78 0.000 79 0.000 74 0 000 78 0.000 69 0.000

"Contacts on a daily or weekly basis. "Missing data includes mainly grandparents who were deceased or lived out of the country.

keeping busy or forgetting (22.5%). Only a few reported seeking professional help (3.7%). Other responses were getting nervous and yelling or screaming (13.7%) and crying (3.7%). No antisocial coping responses such as drinking, smoking, or using drugs were identified. Later in the interview, respondents were asked about the ways in which they cope and adjust. Responses were categorized as follows: concentrating on the progress of the child (42.5%), faith in God (35%), trying to perceive the child as being normal as much as possible (22.5%), and using available services (22.5%). Only a small percentage mentioned seeking help or assistance from other people (6.3%). Parents' responses to the question regarding the child's future indicated that in Year Five about 28% of participants djd not know, did not think about it, or left it to God (the figure was 23.3% in Year One). However, significantly more respondents in Year Five (31.6%) than in Year One (8.9%) hoped the child would become independent, while fewer respondents in Year Five (2%) than in Year One (20%) expressed a wish or an expectation for their sons to become biblical scholars, as do most men or fathers in the community.
DISCUSSION

Despite the fact that the families were unique on a number of demographic char-

acteristics (i.e., strongly religious, family size, residence in a closed religious community in Israel, fathers who were biblical scholars), findings from Year One (Leyser & Dekel, 1991) had demonstrated that most experienced similar types of daily hardships and stressors and used adaptation strategies comparable to those reported by families with disabled children in other cultures and nations (Shapiro & Tittle, 1986; Turnbull & Turnbull, 1990). Such data may, therefore, be generalized not only to samples of similar backgrounds, but also to broader samples. The results of the follow-up study suggest that, with the passage of time and changes in family life-cycles, many families continued to cope and to live as normally as possible while continuing to experience several major hardships and stressors associated with caring for a disabled child. For example, although a high rate of divorce and desertion is usually reported in families with exceptional children (Turnbull & Turnbull, 1990), almost all the families in this study remained intact. This finding is not unexpected in a community where the divorce rate is very low. Still, the stresses experienced by these families did not lead to their break-up, a choice that, whatever the community pressure, is available in Jewish tradition. Several other investigations have also found that families

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FAMILIES OF DISABLED ORTHODOX JEWISH CHILDREN ily adjustment (Featherstone, 1980; Frey, Fewell, & Vadasy, 1989). On the other hand, almost 55% of the mothers in the present study still felt that the special-needs child had behavior problems. Also, about one-half still felt that they did not have as much time as they would like to take care of the child. In Year Five, parents' views regarding the child's future seemed more realistic than in Year One. For example, they wished for the child to be as adjusted or independent as possible, and many now realized that their sons would probably not become biblical scholars. Yet, a substantial number of parents (almost 30%) still expressed uncertainty or reluctance to cope with the issue. The future may be too fearful for these parents to consider, or they may have a tendency to deal with problems one at a time, as they arise. Overall, it appears that the future is a matter of concern for many. Other researchers have also reported that families with disabled children are very concerned about the future (Harris & McHale, 1989; Hymovich & Baker, 1985). Responses to questions about the availability and utilization of support resources indicated several changes over time. For example, fewer families at Year Five reported financial hardship, a positive change that can be explained by the fact that more fathers now held better-paying jobs, at least making more than the minimum wage of biblical scholars. Several mothers had also joined the work force, adding to the family income. Still, about 40% of the families reported economic problems, a figure reflective of other studies (Harris & McHale, 1989; Singer & Farkas, 1989). Many more mothers reported receiving community services and assistance or having them available, an observation supported by a recent article (Lifshitz, 1993) in a major Israeli newspaper discussing mental health problems in residents of ultraorthodox communities (including the one studied here). Lifshitz stressed that only recently have changes in attitudes toward and

of special children tend to stay together (Erin, Rudin, & Njoroge, 1991; Frey, Fewell, & Vadasy, 1989; Friedrich, Wiltwner, & Cohen, 1985; Hymovich & Baker, 1985). Data from the present study also showed that the number of children increased in most families, as dictated by their religious beliefs and as is the norm in this community. It is worth noting that findings reported in the literature, like those here, suggest that larger families with a disabled child are better adjusted than smaller ones (Featherstone, 1980; Harper, 1984; Leyser & Dekel, 1991). The majority of parents continued to keep the special-needs child at home, although a few were placed in foster care. All but one family (which moved to a similar nearby community) continued to reside within the same community. Compared to Year One findings, and based mostly on mothers' responses during the follow-up, caring for the disabled child was reported to be less stressful to family life, the feeling of being stigmatized was reported to be reduced, and more siblings were judged as showing good adjustment. Also, more mothers felt that they had enough time to care for siblings, despite the fact that the number of members had increased in most of the families (in several, however, some older siblings had already left home). The overall rating of family adjustment by the social worker in Year Five (who rated most families in Year One as well) revealed a significant improvement. Over the four years, teacher ratings of the child's adaptive behavior also showed significant improvement, primarily in adaptive skill areas representing independent functioning (e.g., eating, dressing), schoolrelated subjects (e.g., reading and writing), and attention and responsibility. It seems likely that these changes in the child's competence contributed to the feeling of the reduced burden and stress and to better adjustment. Other researchers have also found that changes in the child's competence over time were related to better fam-

YONA LEYSER acceptance of disabilities been observed and that several new family support services (e.g., sheltered workshops, mental health clinics, home-based counseling, and emergency hot lines) have been developed and tailored to the needs of community members. These agencies and programs employ professionals who are familiar with the values and life-styles of these families, as well as with the Judaic texts. On the other hand, findings have shown that most of the families still did not have or want parent-organized support groups. This response may have represented a lack of information about the role of these groups or may have reflected an uneasiness about seeking help from others with similar problems. Parallel findings were also reported in another study of mothers with mentally retarded children in Israel (Nadler, Lewinstein, & Rahav, 1991). Data show that, over time, families used several strategies to alleviate their emotional and practical difficulties. For example, compared to Year One, parents reported more discussions within the family about the child's problems in Year Five. They also reported more frequent contact with both the maternal and the paternal grandparents, much of which had become at least weekly and often daily (most of the grandparents resided in the same community). Such interaction is likely to provide parents with emotional support, as well as with concrete assistance (e.g., help with daily routines, preparation of meals, and respite care). More parents also reported contact and discussions with individuals outside the family, e.g., with friends and, in particular, with teachers and other school personnel. Increased contact with school personnel over time was also reported by Suelzle and Keenan (1981), yet they found a decline in the utilization of friends and family members. As in other studies (Erin, Rudin, & Njoroge, 1991; Hymavich & Baker, 1985), results revealed that parents had less contact over time about the child with their

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spiritual leader (the rabbi). A decline in the frequency of contact and consultations about the child with health care experts (i.e., family doctors, pediatricians, and therapists) was also noted. Results of this follow-up study suggest that the burden of care for the disabled child was still shouldered mostly by the mothers, who were more likely to stay at home and be the primary care providers. This finding is not surprising, in view of community expectations mat fathers should spend most of their waking hours rehearsing and studying the Judaic writings, serve as educational models for their families, but not be much involved in the daily care of the children. Many studies of nonorthodox families both in Israel (Leyser, Margalit, & Avraham, 1988) and in other cultures, such as the United States (Erin, Rudin, & Njoroge, 1991; Frey, Greenberg, & Fewell, 1989; Harris & McHale, 1989; Marcenko & Meyers, 1991; Shapiro, 1989), have generated similar findings. From the characteristics of the parent group studied here, religious conviction appeared to be a major coping resource. Faith in God and prayers were identified as coping techniques by many respondents; for all of them faith in and love of God were so central to their identity and so taken for granted that no challenges or questions about their religious commitment were raised throughout the interviews. As Lauffer (1988) noted, raising a child with a disability is generally viewed by ultraorthodox families as a God-given mission (no abortions are practiced). Many other family experts also found that a strong religious orientation is important to adjustment and positive adaptation in families of disabled children (Abbott & Meredith, 1986; Crnic, Friedrich, & Greenberg, 1983; Erin, Rudin, & Njoroge, 1991; Salisbury, 1987; Shapiro, 1989). Implications for Practice and Research The findings of this study highlight the need for professionals to become more re-

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FAMILIES OF DISABLED ORTHODOX JEWISH CHILDREN parents' responses had a social desirability response bias, although many seemed to discuss their hardships and problems openly. Also, although the interview instrument was adapted from several available family measures and has been used in previous studies, its psychometric qualities have not been well established. In addition, most of the data (as in many other investigations) were based on views and perceptions of mothers. Future researchers should shift focus and examine views and reactions of fathers as well. Because of the paucity of empirical data about the long-term effects of a disabled member on the family, more investigations with a longitudinal orientation are needed. Such studies could have theoretical implications for family researchers and could provide practitioners with useful information for planning support services with a life-span perspective. More family research from a cross-cultural perspective is also desirable. Such studies would provide a broader understanding of family stressors, concerns, and changing needs over time, and would help to develop fuller knowledge of the ways in which families have learned to cope successfully with an exceptional child.
REFERENCES Abbott, D.A., & Meredith, W.H. (1986). Strengths of parents with retarded children. Family Relations, 35, 371-375. Baisch, R.H. (1968). Vie parent of the handicapped child: The study of child rearing practices. Springfield, 1L: Charles C Thomas. Beckman, P.J., & Pokorni, J.L. (1988). A longitudinal study of families of preterm infants: Changes in stress and support over the first two years. Journal of Special Education, 22, 55-65 Bernheimer, L.P., Young, M.S., & Winton, P.J. (1983). Stress over time: Parents with young handicapped children. Journal of Development and Behavioral Pediatrics, 4Q), 177-181. Burden, R., & Thomas, D. (1986). A further perspective on parental reactions to handicap. The Exceptional Child, 33(2), 140-145. Crnic, K.A., Friedrich, W.N., & Greenberg, M.T. (1983). Adaptation of families with mentally retarded children: A model of stress, coping, and family ecology. American Journal of Mental Retardation, 88, 125-138. Erin, J.N., Rudin, D., & Njoroge, M. (1991). Religious beliefs of parents of children with visual im-

sponsive to diverse family characteristics, including differences in socioeconomic, cultural, and ethnic backgrounds, as well as to differences in values and life-styles. Such awareness is necessary to gain better insight into the specific needs and coping methods used by families in response to a disabling condition and to tailor intervention strategies that are consistent with family characteristics. For the present sample, it has been recommended that family problems be addressed primarily by working with mothers, that no discussions of spouses be accepted in group sessions, and that topics considered shameful by the community be avoided. In complex cases, consultations with the rabbi may be required (Lauffer, 1988). Practitioners must also realize that many families of disabled children have strengths that can be explored and used as a basis for positive action plans. Expansion and funding are also necessary of school and community efforts aimed at optimizing each child's adaptive abilities through educational and therapeutic interventions, especially in the behavioral, social, and selfhelp domains. Improvement in these areas is likely to ease the daily management demands of the child at home. Clinicians and therapists must help families anticipate changes and possible stress related to child and family development and should be available over time to assist them in coping with these experiences. The findings here also underscore the need for continued exploration of methods to alleviate some of the complex daily parenting responsibilities, especially of mothers or other chief caregivers. Such assistance may include arrangements for homemaker services and respite care, availability of volunteers as mothers' helpers, and the provision of peer support groups. Because of several limitations, results of the present investigation should be interpreted with caution. First, data were based mainly on a single data-collection instrument, an interview form. It is possible that

YONA LEYSER
pairments. Journal of Visual Impairment and Blindness, 85, 157-162. Feamerstone, M. (1980). A difference in the family: Living with a disabled child New York: Basic Books. Folkman, S., Schaffer, G, & Lazams, R.S. (1979). Cognitive processes as mediators of stress and coping. In V. Hamilton & D. Warburton (Eds.), Human stress and cognition: An information processing approach (pp. 265-298). New York: John Wiley. Frey, K.S., Fewell, R.R., & Vadasy, P.F. (1989). Parental adjustment and changes in child outcome among families of young handicapped children. Topics in Early Childhood Special Education, 8(4), 38-57. Frey, K.S., Greenberg, M.T., & Fewell, R.R. (1989). Stress and coping among parents of handicapped children: A multidimensional approach. American Journal of Mental Retardation, 94, 240-249. Friedrich, W.N., & Friedrich, W.L. (1981). Psychosocial assets of parents of handicapped and nonhandicapped children. American Journal of Mental Deficiency, 85, 551-553. Friedrich, W.N., Wilturner, L.T., & Cohen, D.S. (1985). Coping resowces and parenting mentally retarded children. American Journal ofMental Deficiency, 90, 130-139. Gallagher, J.J., Beckman, P., & Cross, A.H. (1983). Families of handicapped children: Sources of stress and its amelioration. Exceptional Children, 50, 10-19. Harper, D.C. (1984). Child behavior toward the parent: A factor analysis of mothers reports of disabled children. Journal of Autism and Developmental Disorders, 14, 165-182. Harris, V.S., & McHale, S.M (1989). Family life problems, daily care giving activities and the psychological well-being of mothers of mentally retarded children. American Journal of Mental Retardation, 94, 231-239. Hymovich, D.P. (1983). The chronicity impact and coping instrument: Parent questionnaire. Nursing Research, 32, 275-281. Hymovich, DP., & Baker, CD. (1985). The needs, concerns, and coping of parents of children with cystic fibrosis. Family Relations, 34, 91-97. Kazak, A.E., & Marvin, R.S. (1984). Differences, difficulties, and adaptation: Stress and social networks in families with a handicapped child. Family Relations, 33, 67-77. Lambert, N., & Windmilier, M. (1981). AAMD Adaptive Behavior Scale (ABS): School edition. Monterey, CA: Publishers Test Service, CTB/McGrawHill. Lauffer, G. (1988). The essence and spirit of parent guidance groups of ultra orthodox parents. In R. Berger (Ed.), Parent groups: Collected readings (pp. 166-181). Tel-Aviv: Bob Shapell School of Social Work, Division of Continuing Education and Association for the Development and Advancement of Manpower in School Services in Israel, Tel-Aviv University. Leyser, Y., & Dekel, G. (1991). Perceived stress and adjustment in religious Jewish families with a

385
child who is disabled. Journal of Psychology, 125, 427-438. Leyser, Y., Margalit, M., & Avraham, Y. (1988). Families of disabled children in the Israeli kibbutz: A community which provides for all needs. The Exceptional Child, 35, 165-177. Lifshitz, C. (1993, April 16). A religious woman gets up in the morning and commits suicide. Maariv. pp. 16-19. Marcenko, M.O., & Meyers, J.C. (1991). Mothers of children with developmental disabilities: Who shares the burden? Family Relations, 40, 186-190. McCubbin, M.A., & Tine Huang, S.T. (1989). Family strengths in the care of handicapped children: Targets for intervention. Family Relations, 38, 436-443. Ministry of Labor and Welfare, (n.d.). Adaptive Behavior Scale. Jerusalem: Author. Mullins, J.B. (1987). Authentic voices from parents of exceptional children. Family Relations, 36, 30-33. Nadler, A., Lewinstein, E., & Rahav, G. (1991). Acceptance of mental retardation and help-seeking by mothers and fathers of children with mental retardation. Mental Retardation, 29, 17-23. Noh, S., Dumas, J.E., Wolf, L.C., & Fisman, S.N. (1989). Delineating sources of stress in parents of exceptional children. Family Relations, 38, 456461. Parker, T., Hill, J.W., & Goodnow, J. (1989). The impact of special-needs children on their parents' perceptions of family structural interaction patterns. Family Therapy, 16, 259-270. Powell, T.H., & Ogle, P.A. (1985). Brothers and sistersa special part of exceptional families. Baltimore, MD: Paul H. Brookes. Salisbury, C.L. (1987). Stressors of parents with young handicapped and nonhandicapped children. Journal of the Division of Early Childhood, 11, 154-160. Shapiro, J. (1989) Stress, depression, and support group participation in mothers of developmentally delayed children. Family Relations, 38, 169-173. Shapiro, J., & Tittle, K. (1986). Psychosocial adjustment of poor Mexican mothers of disabled and nondisabled children. American Journal of Orthopsychiatry, 56, 289-302. Singer, L., & Farkas, K.J. (1989). The impact of infant disability on maternal perception of stress. Family Relations, 38, 444-449. Slater, M.A., & Wikler, L. (1986). "Normalized" family resources for families with a developmentally disabled child. Social Work, 31, 385-390. Suelzle, M., & Keenan, V. (1981). Changes in family support networks over the life cycle of mentally retarded persons. American Journal of Mental Deficiency, 86, 267-274. Tumbull, A.P., & Turnbull, H.R. III. (1990). Families, professionals, and exceptionality: A special
partnership (2nd ed.). Columbus, OH: Merrill. Wikler, L., Wasow, M., & Hatfield, E. (1983). Seeking strengths in families of developmentally disabled children. Social Work, 28, 313-315.

Forreprints:Yona Leyser, Ph.D., Department of Educational Psychology, Counsd^ and Special Education, NorthernfflinoisUniwraty, DeKalb,BL60115