adapting families disabled child

8/3/2019 Adapting Families Disabled Child

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Amer. J. Onhopsychiat 64(3), My 1994

S T R E S S A N D A D A P T A TIO N IN O R T H O D O X J E W IS HF A M IL IE S W IT H A D IS A B L E D C H I LD

Yona Leyser, Ph.D.

A four-year follow-up study of 82 religious families of children w ith d isabilitiesrevealed decreases in the negative impact of the child and increases in siblingand overall family adjustment. Parents reported various coping techniques andcited religion as a source of strength. Lack of time, behavior problems, and limit-ed availability o r use of professional assistance were continuing difficulties.

T he impact of a disabled or chronicallyill child on family life has been w idelyresearched and d ocumented. Anecdotal ob-servations and numerous empirical studieshave concluded that the birth and continuedcare needs of a disabled child expose thefamily to increased levels of stress, frustra-tion, strain, and chronic sorrow and also re-quire readjustment in family roles , relation-ships, 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 anddifficulties take are reported in the litera-ture. Among the problems mo st often docu-mented are physical and time demands,prolonged burden of care, feeling of stig-ma, long-term uncertainty, reduction of ca-reer opportunities, emotional and psycho-logical difficulties of family mem bers, lackof information and resources, strained rela-tionships with professionals, and financialburden (Friedrich & Friedrich, 1981; Gal-lagher, Beckma n, & Cross, 19 83; Harris &McHale, 1989; Marcenko & M eyers, 1991;

Slater & Wilder, 1986). It is important tonote, however, that these experiences arenot all universal and that families differ intheir reactions to a disability as well as intheir coping resources (Bernheimer, Young,& Winton, 1983; Burden & Thomas, 1986;Crnic, Friedrich, & Greenberg, 1983;Powell & Ogle, 1985). In fact, researchershave found that some families experienceno apparent negative effects and that manyparents are capable of satisfactory adjust-ments (A bbott & M eredith, 1986; Parker,Hill, & Goodnow, 1989; Salisbury, 1987).Family experts have also noted a numb er ofpositive outcomes in families with a dis-abled member, including increased familycohesion, enriched and more meaningfullives, and increased understanding andcompassion (Featherstone, 1980; Hymovich& Baker, 1985; Singer & Farkas, 1989;Turnbull & Turnbull, 1990; Wikler, Wa-sow, & Hatfield, 1983).

The extent to which families successfullycope and adjust is determined by the avail-ability and utilization of several psycho-logical and environmental resources. Folk-man , Schaffer, and Lazarus (1979) outlinedfive broad catego ries of coping reso urces to

A revised version of a paper subm itted to the Journal in June 1993. Author is at the Department of EducationalPsychology, Counseling and Special E ducation, Northern Illinois University, DeKalb.376 1994 American Ortnopsychiatric Association, Inc.


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YONA LEYSER 377med iate stress. These include 1) individualhealth, energy, and moral resources (e.g.,initial state of mind, depression, physicaldisabilities); 2) problem-solving skills; 3)general and specific beliefs (e.g., aboutself-efficacy or in exis tentia l belief sys-tems); 4) social networks; and 5) utilitarianresources (e.g., socioeconomic status, mon-ey, community social agencies). Numerousempirical studies have found that these re-sources are related to family adjustmentand reduced parenting stress (Frey, Green-berg, & Fewell, 1989; Friedrich & Fried-rich, 1981; Friedrich, Wilturner, & Cohen,1985).Although many investigations of familystress and coping have been conducted,few have explored changes in family stressand adaptation over time. For example, afollow-up study of families with retardedchildren ranging in age from preschool toyoung adulthood (Suelzle & Keenan, 1981)found increased utilization of several typesof health care professionals (e.g., doctors)over time, yet also noted a decline in theutilization of personal support networks(family members, friends). In a ten-monthfollow-up study of mothers of retardedchildren, Friedrich, Wilturner, and Cohen(1985) reported significant increases inmaternal depression and in parent and fam-ily problems. In contrast, a two-year fol-low-up of families of preterm infants (Beck-man & Pokorni, 1988) found no significantchanges in parent and family problems, nochanges in the amount of social supportparents received, and a significant decreasein the num ber of child-related problem s.

The present study is a four-year follow-up of religious families with a disabled childinvestigated in Israel during the 19861987 school year by Leyser and Dekel(1991). Data from the previous studyshowed that, although the families experi-enced such hardships as financial difficul-ties, lack of community support, feeling ofstigma, behavior problem s, and shortage oftime, many were coping and adjusting ad-equately. The present follow-up investiga-

tion, carried out during the 1990-1991 schoolyear, was designed to measure changesover time in 1) types and levels of stressexperienced, 2) utilization of psychologicaland environmental coping resources, and3) overall adjustment. It was hypothesizedthat families would continue to encountermajor life stressors yet would demonstrateoverall adequate adjustment and wouldlead normal lives within their community.METHODSubjectsEighty-two families of children with mod-erate to severe developmental disabilitiesparticipated. They resided in a section ofJerusalem that is inhabited by ultra-ortho-dox religious Jews who share a deep com-mitment to a life-long religious life-style.They follow strictly the edicts and obliga-tions specified in Judaic sources, i.e., theBible, Talmud, and the Halachic writings,which are highly specific about the conductof life for Jews. Families that are intact andfunctioning harmoniously are highly val-ued, and extensive measures are taken toprevent them from breaking up . Acco rdingto Lauffer (1988), these families have threemajor characteristics. 1) Fathers, thoughheads of the households, are not necessar-ily the breadwinne rs. They serve as b iblicalscholars and, as such, have a unique stand-ing in the family h ierarchy. M others expectthe fathers to study and to provide educa-tional guidance and leadership, while theythemselves are expected to raise and edu-cate the children according to the Judaicsources. 2) To have many children is bothan obligation and an ideal. 3) The rabbi isthe educator and the spiritual leader of ev-ery person, family, and the community.Contact with persons or institutions outsidetheir religious circle, including health-careand human-services agencies, is very lim-ited for mem bers of the com munity.

The children's primary handicapping con-ditions included mental retardation (# =3 3) ,learning disabilities (N=2S), and organicdisabilities (i.e., CNS impairment) (#=13).


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378 FAMILIES OF DISABLED ORTHODOX JEWISH CHILDRENA few of the remaining eight children wereidentified as emotionally maladjusted (au-tistic), and others with physical and sen-sory disabilities. Most disabilities wereidentified early (40% at or shortly afterbirth, and 90% before children enteredschool). About 60% of the children withdisabilities were firstborn, and at the timeof the follow-up their mean age was 11.63years (range=6-17 years; SD=2.30). Thegroup consisted of 55% girls and 45%boys. The mean age of fathers was 41.51(range=29-68 years; SZ>=7.91); the meanage of mothers was 39.06 (range=28-57years; SD=6.64).ProcedureBoth parent interviews and a child com-petence m easure were utilized to provide alongitudinal follow-up of all families stud-ied in 1 986-1 987 (Year One study).

Home interviews. A semi-structured in-depth interview with parents was con-ducted by an experienced female socialworker who worked at the school andhelped families in the community. Most in-terviews took place in the families' ho mes,but in a few cases parents were invited totheir child's school. Due to the relativelylarge number of families and schedulingdifficulties, data were collected over sev-eral months. Interviews ranged from 60 to150 minutes per family. A slightly modi-fied version of the interview questionnairefrom the first investigation of the families(Leyser & Dekel, 1991) was used; a similarinstrument has been utilized in a study offamilies living in rural communal settle-ments (kibbutzim) in Israel (Leyser, Mar-galit, & A vraham, 1988). The original ver-sion was formulated using several instru-ments reported in the literature measuringstress and coping (Borsch, 1968; Friedrich& Friedrich, 1981; Hymovich, 1983).

The first section of the questionnaireelicited basic demographic information(ages of parents and children, number ofchildren, and parental occupation). Thesecond section focused on the impact of the

disabled child on family life and on sib-lings, areas of daily hardship and stresses,parental use of personal psychologicaladaptation techniques, and the availabilityof informal (family, friends, neighbors)and formal (professional) support systems;several items focused on future plans andconcerns. In the final section the inter-viewer was asked to jud ge the overall levelof family adjustment, functioning, andstability on five-point Likert-type scales.The questionnaire d id not include items ex-ploring views about spouses' roles and be-havior because such questions have beendiscouraged in that religious community(Lauffer, 1988). Responses, recorded bythe social worker on the interview forms,included yes or no answers, ratings on five-point Likert-type scales, and answers toseveral open-ended questions. Of the inter-views, 90% were with mothers, 8% withfathers, 1% with both parents, and 1% withother family members. Because of theirpreponderance am ong the caregivers inter-viewed, respondents are generally referredto as mo thers in this article.

Measures of child competence. Severaldomains taken from the revised AmericanAssociation on Mental Retardation Adap-tive Behavior ScaleSchool edition (ABS)(Lambert & Windmiller, 1981) were usedto assess the adaptive behavior of the dis-abled child. Using the Hebrew version de-veloped by Riess and colleagues (Ministryof Labor and Welfare, n.d.), teachers ratedthe students during the first and the follow-up studies on ten items selected from fourdomains, as follows: Eating and Dressing(Domain 1, Independent Functioning);Writing and Reading (Domain 4, Langu ageDevelopment); Initiative and Attention(Domain 7, Self-Direction); and GeneralResponsibility, Cooperation, Interactionwith Others, and Participation in GroupActivities (Domain 8, Responsibility). Ex-tensive information is available on the de-velopment of the ABS that has establishedits validity (predictive, construct) and reli-ability (internal consistency).


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YONA LEYSER 37 9RESULTSFam ily Ch aracteristics

Several changes in family backgroundcharacteristics were noted over the four-year span. At the time of the Year One study,only two (2.4%) of the families were di-vorced; at follow-up, three families weredivorced and one father was deceased.During the first investigation, eight (9.8%)of the 82 children studied were not in homeplacem ent: six were in foster families in thesame community or from similar religiouscommunities in Israel or the United States,and two had been placed in institutions. Atthe 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' oc-cupation. As reported earlier, most fathersin the community were biblical scholars,studying or teaching, who received mini-mal monthly financial assistance from sev-eral religious charitable organizations. Dur-ing the first study, 7 3% of the fathers wereso occupied, while others were employedmostly as unskilled laborers or clerks. Atthe time of the follow-up study, 60% of thefathers w ere biblical scholars; the rest wereowners of small businesses, merchants,clerks, or unskilled laborers. One father wasdeceased and another was unemployed.Shifts were also noted for mothers. Theproportion of full-time homemakers haddropped from 8 6% in the first study to 82%

in the follow-up. Most of the rest were em-ployed as teachers, secretaries, or domesticworkers. Several who had p reviously beenhomemakers now had paying jobs , while afew had left paying jo bs to becom e full-time homemakers. One noticeable changeover the four-year period (see TABLE 1) wasa significant increase in the number of chil-dren per family.Family and Child A djustment

TABLE 1 depicts changes on selectedmeasures of family adjustment betweenYear One and Year Five. Fewer mothers inYear Five (24.7%) than in Year One (37.4%)reported that the special-needs child had anegative impact on family life. However,about one-fourth of the mothers felt thatthe child did have a negative influence onthe family. Fewer mothers in Year Five(45%) than in Year One (60%) felt that theywere stigmatized for having a disabled child.In Year Five more respondents felt m at sib-lings were better adjusted and that they hadmore time for siblings as compared to ear-lier responses (in Year One, 52.7% reportedlack of time for siblings compared to 17.3%in Year Five). Only slight differences,however, were noted in perceptions of thetime needed to care for the disabled child(at both times about 50% of respondentsreported not having eno ugh time) or in per-ceptions of the child's behavior problems(54% at Year One and 5 3% at Year Five).

T a b l e 1FAMILY ADJUSTM ENT IN FIRST AND FOLLOW-UP STU DIES

M E A S U R EN egative impact of disabledchild on family lifeFamily feeling of stigmaFamily adjustment (rating by social worker)S ibling adjustmentN umber of childrenL ack of time for disabled childB ehavior problems of disabledchildLack of time for siblingsM uch or very much.Good or very good.

M2.83 a1.843.31"1.785.741.531.531.52

Y E A R 1%

37.460.046.277.250.054.052.7

S T U D Y

SD1.590.770.980.412.820.500.500.50

M2.321.524.101.897.261.501.531.17

YE A R 5%

24.745.068.382.948.153.117.3

SD1.500.621.030.313.010.500.500.38

t2.553.30-5.082.54

-8.520.490.004.98

df7774787381757573

P0.0130.0020.0000.0590.0000.62S(NS)1.000(NS)0.000


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380 FAMILIES OF DISABLED ORTHODOX JEWISH CHILDRENThe overall rating by the social workerof family adjustment on the five-point Li-kert scale indicated a significant improve-ment over the five-year period, with 68%of families showing goo d or very good ad-justm ent at Year Five, as compared to 46 %at Year One.

Child FunctioningTABLE 2 depicts ratings by teachers ofchildren's functioning (adaptive behavior)during Year One and Year Five. Significantimprovement was noted for the total scalescore over the five-year span. Significant

improvement was also evident in six ad ap-tive skill areas: eating, dressing, reading,writing, attention, and general responsibility.A vailability and Use of ResourcesResponses in the follow-up study sug-gest that, over time, parents have activelysought and used several emotional and so-cial-support resources and coping strategies(see TABLE 3). Some resources, however,were used less often than in Year One. Forexample, a significant increasefrom44.4%in Year One to 58.5% in Year Five wasfound in discussions about the special-needs child with others, such as friends,neighbors, and especially school personnel(mainly teachers). Discussions within thefamily (from 59.2% to 68.2%) also in-creased. A significant increase was alsonoted in the frequency of contact with both

the maternal and the paternal grandparents;almost 60% reported weekly or even dailycontact with the maternal grandparents andover 4 1 % with the paternal grandparents,as compared to 4 1 % and 30% respectivelyin Year One. However, a significant de-cline was noted (from 74.4% in Year Oneto 42.5% in Year Five) in consultations an dcontacts regarding the child with healthcare experts, i.e., family doctors, pediatri-cians, neurologists, and therapists, as wellas a substantial decline (from 78% in YearOne to 32% in Year Five) in consultationswith the rabbi about the child. Data alsoshowed that fewer parents (from 37% inYear One to 12% in Year Five) expresseda need to comm unicate with o ther familiesof special-needs children.

Important changes were noted in the ar-eas of financial resources and of commu-nity supports and services. Fewer mothers(from 75% in Year One to 39.5% in YearFive) reported experiencing financial hard-ships. Additionally, fewer mothers in YearFive (35.8%) than in Year One (75.7%) re-ported that community services were un-available to them.

During the follow-up interview, parentswere given a list of coping strategies andwere asked to indicate those that they mostoften used in coping with pressures associ-ated with the special-needs child. The mostfrequently used were reported to be prayer(46.2%), talking to somebody (41.2% ), and

ADAPTIVE BEHAVIOR

M E A S U R EA daptive behavior (total score)EatingD ressingR eadingW ritingA ttentionInitiativeGeneral responsibilityInteraction with othersC ooperationP articipation in group activities

T a b l e 2OF DISABLED CHILD IN THE FIRST AND FOLLOW-UP STUDIES

M27.58

3.983 841.852.003 1 02.692.543.002.022.59

Y E A R 1SD

8.571.581.581.191.431.471.030.801.030.640.82

S T U D YY E A R 5

M34.29

5.564 953.313.094.022.742.793.072.142.62

SD9.171.571.391.942.031.110.960.740.940.560 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 p81 0.00081 0.00081 0.00081 0.00081 0.00081 0.00081 0.680(NS )81 0.01481 0.530(NS )81 0.100(NS)81 0.820(NS)


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YONA LEYSER 381Table 3

A VA IL A B IL IT Y A N D US E O F A D J U S T M E N T A N D C O P I N G R E S O U R C E S IN F IR S T A N DF O L L O W - U P S T U D I E S

M E A S U R ED iscussions in family about disabled childD iscussions with othersC ontact with maternal grandparentsC ontact with paternal grandparentsC onsultations with rabbiC onsultations w ith expertsN eed to meet with other parentsF inancial hardships/constraintsLimited community resources"Contacts on a daily or weekly basis.

M2.961.463.31 a3.20a1.771.731.371.811.88

Y E A R 1%

59.244.441.430.378.074 436.775.075.7

S T U D Y

SD1.250.500.921.060.420 4 40.480.390.32

M3.111.603.783.511.311.421.101.391.35

YE A R 5%

68.258.559.541 431.642 511 539.535.8

SD1.270.490.901.020.460 490 310 490.48

"M issing data includes mainly grandparents who were deceased or lived out of the country.

r-0 93-2.01-3 57-2.537.364.954 006.537.59

df p75 0.355(NS )77 0 04 856b 0.00148" 0.01578 0.00079 0.00074 0 00 078 0.00069 0.000

keeping busy or forgetting (22 .5% ). Only afew reported seeking professional help(3.7%). Other responses were getting ner-vous and yelling or screaming (13.7%) andcrying (3.7%). No antisocial coping responsessuch as drinking, smoking, or using drugswere identified. Later in the interview, re-spondents were asked about the ways inwhich they cope and adjust. Responseswere categorized as follows: concentratingon the progress of the child (42.5%), faith inGod (35%), trying to perceive the child asbeing normal as much as possible (22.5%),and using available services (22.5% ). Onlya sm all percentage mentioned seeking helpor assistance from other people (6.3% ).

Parents' responses to the question re-garding the child's future indicated that inYear Five about 28% of participants djdnot know , did not think about it, or left it toGod (the figure was 23.3% in Year One).However, significantly more respondentsin Year Five (31.6%) than in Year One(8.9%) hoped the child would becomeindependent, while fewer respondents inYear Five (2%) than in Year One (20%)expressed a wish or an expectation for theirsons to become biblical scholars, as domost men or fathers in the com munity.DISCUSSIONDespite the fact that the families wereunique on a number of demographic char-

acteristics (i.e., strongly religious, familysize, residence in a closed religious com-munity in Israel, fathers who were biblicalscholars), findings from Year One (Leyser& Dekel, 1991) had demonstrated thatmost experienced similar types of dailyhardships and stressors and used adaptationstrategies comparable to those reported byfamilies with disabled children in othercultures and nations (Shapiro & Tittle,1986; Turnbull & Turnbull, 1990). Suchdata may, therefore, be generalized notonly to samples of similar backgrounds,but also to broader samples.

The results of the follow-up study sug-gest that, with the passage of time andchanges in family life-cycles, many fami-lies continued to cope and to live as nor-mally as possible while continuing to expe-rience several major hardships and stres-sors associated with caring for a disabledchild. For example, although a high rate ofdivorce and desertion is usually reported infamilies with exceptional children (Turn-bull & Turnbull, 1990), almost all the fam i-lies in this study remained intact. This find-ing is not unexpected in a communitywhere the divorce rate is very low . Still, thestresses experienced by these families didnot lead to their break-up, a choice that,whatever the community pressure, is avail-able in Jewish tradition. Several other in-vestigations have also found that families


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382 FAMILIES OF DISABLED ORTHODOX JEWISH CHILDRENof special children tend to stay together(Erin, Rudin, & Njoroge, 1991; Frey, Fe-well, & Vadasy , 1989; Friedrich, Wiltwner,& Cohen, 1985; Hymovich &Baker, 1985).

Data from the present study also showedthat the number of children increased inmost families, as dictated by their religiousbeliefs and as is the norm in this commu-nity. It is worth noting that findings re-ported in the literature, like those here, sug-gest that larger families with a disabledchild are better adjusted than smaller ones(Featherstone, 1980; Harper, 1984; Leyser& Dekel, 1991).

The majority of parents continued tokeep the special-needs child at home, al-though a few w ere placed in foster care . Allbut one family (which moved to a similarnearby community) continued to residewithin the same community. Compared toYear One findings, and based mostly onmothers' responses during the follow-up,caring for the disabled child was reportedto be less stressful to family life, the feelingof being stigmatized wa s reported to be re-duced, and more siblings were judged asshowing good adjustment. Also, moremothers felt that they had enough time tocare for siblings, despite the fact that thenumber of members had increased in mostof the families (in several, however, someolder siblings had already left home). Theoverall rating of family adjustment by thesocial worker in Year Five (who rated mostfamilies in Year One as well) revealed asignificant improvement.

Over the four years, teacher ratings ofthe child's adaptive behavior also showedsignificant improvement, primarily in adap-tive skill areas representing independentfunctioning (e.g., eating, dressing), school-related subjects (e.g., reading and writing),and attention and responsibility. It seemslikely that these changes in the child'scompetence contributed to the feeling ofthe reduced burden and stress and to betteradjustment. Other researchers have alsofound that changes in the child's compe-tence over time were related to better fam-

ily adjustment (Featherstone, 1980; Frey,Fewell, & Vadasy, 1989). On the otherhand, almost 55% of the mothers in thepresent study still felt that the special-needschild had behavior problems. Also, aboutone-half still felt that they did not have asmuch time as they would like to take careof the child.

In Year Five, parents' views regardingthe child's future seemed more realisticthan in Year One. For example, they wishedfor the child to be as adjusted or indepen-dent as possible, and many now realizedthat their sons would probably not becomebiblical scholars. Yet, a substantial numberof parents (almost 30%) still expressed un-certainty or reluctance to cope w ith the is-sue. The future m ay be too fearful for theseparents to consider, or they may have atendency to deal with problems one at atime, as they arise. Overall, it appears thatthe future is a matter of concern for many.Other researchers have also reported thatfamilies with disabled children are veryconcerned about the future (Harris &McH ale, 1989; Hymovich & Baker, 1985).

Responses to questions about the avail-ability and utilization of support resourcesindicated several changes over time. Forexample, fewer families at Year Five re-ported financial hardship, a positive changethat can be explained by the fact that morefathers now held better-paying job s, at leastmaking more than the minimum wage ofbiblical scholars. Several mothers had alsojoined the work force, adding to the familyincome. Still, about 40 % of the families r e-ported econom ic problems, a figure reflec-tive of other studies (Harris & McHale,1989; Singer & F arkas, 1989).Many more mothers reported receivingcommunity services and assistance or hav-ing them available, an observation sup-

ported b y a recent article (Lifshitz, 1993) ina major Israeli newspaper discussing men-tal health problems in residents of ultra-orthodox communities (including the onestudied here). Lifshitz stressed that only re -cently hav e changes in attitudes toward and


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YONA LEYSER 383acceptance of disabilities been observedand that several new family support ser-vices (e.g., sheltered workshops, mentalhealth clinics, hom e-based counseling, andemergency hot lines) have been developedand tailored to the needs of communitymembers. These agencies and programsemploy professionals who are familiar withthe values and life-styles of these families,as well as with the Judaic texts. On theother hand, findings have shown that mostof the families still did not have or wantparent-organized support groups. This re-sponse may have represented a lack of in-formation about the role of these groups ormay have reflected an uneasiness aboutseeking help from othe rs with similar pro b-lems. Parallel findings were also reportedin another study of mothers with mentallyretarded children in Israel (Nadler, Lewin-stein, & Rahav, 1991).

Data show that, over time, families usedseveral strategies to alleviate their emo-tional and practical difficulties. For exam-ple, compared to Year One, parents re-ported more discussions within the familyabout the child's problems in Year Five.They also reported more frequent contactwith both the maternal and the paternalgrandparents, much of which had becomeat least weekly and often daily (most of thegrandparents resided in the same commu-nity). Such interaction is likely to provideparents with emotional support, as well aswith concrete assistance (e.g., help withdaily routines, preparation of meals, andrespite care).

More parents also reported contact anddiscussions with individuals outside thefamily, e.g., with friends and, in particular,with teachers and other school personnel.Increased contact with school personnelover time w as also reported by Suelzle andKeenan (1981), yet they found a decline inthe utilization of friends and family mem-bers. As in other studies (Erin, Rudin, &Njoroge, 1991; Hymavich & Baker, 1985),results revealed that parents had less con-tact over time about the child with their

spiritual leader (the rabb i). A decline in thefrequency of contact and consultationsabout the child with health care experts(i.e., family doctors, pediatricians, and ther-apists) was also noted.Results of this follow-up study suggestthat the burden of care for the disabledchild was still shouldered mostly by themothers, who were more likely to stay athome and be the primary care providers.This finding is not surprising, in view ofcommunity expectations mat fathers shouldspend most of their waking hours rehears-ing and studying the Judaic writings, serve

as educational models for their families,but not be much involved in the daily careof the children. Many studies of nono rtho-dox families both in Israel (Leyser, Mar-galit, & A vraham, 1988) and in other cul-tures, such as the United States (Erin,Rudin, & Njoroge, 1991; Frey, G reenberg,& Fewell, 1989; Harris & McHale, 1989;Marcenko & M eyers, 1991; Shapiro, 1989),have generated similar findings.From the characteristics of the parentgroup studied here, religious convictionappeared to be a major coping resource.Faith in God and prayers were identified ascoping techniques by many respondents;for all of them faith in and love of Godwere so central to their identity and sotaken for granted that no challenges orquestions about their religious commitmentwere raised throughout the interviews. AsLauffer (1988) noted, raising a child with adisability is generally viewed by ultra-orthodox families as a God-given mission(no abortions are practiced). Many otherfamily experts also found th at a strong reli-gious orientation is important to adjust-ment and positive adaptation in families ofdisabled children (A bbott & 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 theneed for professionals to become more re-


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384 FAMILIES OF DISABLED ORTHODOX JEWISH CHILDRENsponsive to diverse family characteristics,including differences in socioeconomic,cultural, and ethnic backgrounds, as well asto differences in values and life-styles.Such awareness is necessary to gain betterinsight into the specific needs and copingmethods used by families in response to adisabling condition and to tailor interven-tion strategies that are consistent with fam-ily characteristics. For the present sample,it has been recomm ended that family prob -lems be addressed primarily by workingwith m others, that no discussions of spous-es be accepted in group sessions, and thattopics considered shameful by the commu-nity be avoided. In complex cases, consul-tations with the rabbi may be required(Lauffer, 1988).

Practitioners must also realize that manyfamilies o f disabled children have strengthsthat can be exp lored and used as a basis forpositive action plans. Expansion and fund-ing are also necessary of school and com-munity efforts aimed at optimizing eachchild's adaptive abilities through educa-tional and therapeutic interventions, espe-cially in the behavioral, social, and self-help domains. Improvement in these areasis likely to ease the daily management de-mands of the child at hom e.

Clinicians and therapists must help fami-lies anticipate changes and possible stressrelated to child and family developmentand should be available over time to assistthem in coping with these experiences. Thefindings here also underscore the need forcontinued exploration of method s to allevi-ate some of the com plex daily parenting re -sponsibilities, especially of mothers or oth-er chief caregivers. Such assistance may in-clude arrangements for homemaker ser-vices and respite care, availability of vol-unteers as mo thers' helpers, and the provi-sion of peer support groups.

Because o f several limitations, results ofthe present investigation should be inter-preted with caution. First, data were basedmainly on a single data-collection instru-ment, an interview form. It is possible that

parents' responses had a social desirabilityresponse bias, although many seemed todiscuss their hardships and problemsopenly. Also, although the interview in-strument was adapted from several avail-able family measures and has been used inprevious studies, its psychometric qualitieshave not been well established. In addition,most of the data (as in many other investi-gations) were based on views and percep-tions of mothers. Future researchers shouldshift focus and examine views and reac-tions of fathers as well.

Because of the paucity of empirical dataabout the long-term effects of a disabledmember on the family, more investigationswith a longitudinal orientation are needed.Such studies could have theoretical impli-cations for family researchers and couldprovide practitioners with useful informa-tion for planning support services with alife-span perspective. More family researchfrom a cross-cultural perspective is also de-sirable. Such studies would provide a broaderunderstanding of family stressors, con-cerns, and changing needs over time, andwould help to develop fuller knowledge ofthe ways in which families have learned tocope successfully with an exceptional child.R E F E R E N C E SAbbott, D.A., & Meredith, W.H. (1986). Strengths ofparents with retarded children. Family Relations,35 , 371-375 .Baisch, R.H. (1968). Vie parent of the handicappedchild: The study of child rearing practices. Spring-field, 1L: Charles C Thomas.Beckman, P.J., & Pokorni, J.L. (1988). A longitudi-nal study of families of preterm infants: Changesin stress and support over the first two y ears. Jour-nal of Special Education, 22, 55-65Bernheimer, L.P., Young, M.S., & Winton, P.J.(1983). Stress over time: Parents with you ng h and-icapped children. Journal of Development and Be-havioral Pediatrics, 4Q), 177-181.Burden, R., & Thom as, D. (1986). A further p erspec-tive on parental reactions to handicap. The Excep-

tional Child, 33(2), 140-145.Crnic, K.A., Friedrich, W.N., & Greenberg, M.T.(1983). Adaptation of families with mentally re-tarded children: A model of stress, coping, andfamily ecology. A merican Journal of Mental Re-tardation, 88, 125-138.Erin, J.N., Rudin, D., & Njoroge, M. (1991). Reli-gious beliefs of parents of children with visual im-


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YONA LEYSER 385pairments. Journal of Visual Impairment andBlindness, 85, 157-162.Feamerstone, M. (1980). A difference in the family: Liv-ing with a disabled child New York: Basic Books.Folkman, S., Schaffer, G, & Lazams, R.S. (1979). Cog-nitive processes as mediators of stress and coping.In V. Hamilton & D. Warburton (Eds.), Humanstress and cognition: An information processingapproach (pp. 265 -29 8). New York: John Wiley.

Frey, K.S., Fewell, R.R., & Vadasy, P.F. (1989). Par-ental adjustment and changes in child outcome amongfamilies of young handicapped children. Topics inEarly Childhood Special Education, 8(4), 38-57.Frey, K.S., Greenberg, M.T., & Fewell, R.R. (1989).Stress and coping among parents of handicappedchildren: A multidimensional approach. AmericanJournal of Mental Retardation, 94, 240-249.Friedrich, W.N., & Friedrich, W.L. (1981). Psychoso-cial a ssets of parents of handicapped and nonhand-icapped children. American Journal of Mental De-ficiency, 85, 551-553.Friedrich, W.N., Wilturner, L.T., & Cohen, D.S.(1985). Coping resowces and parenting mentallyretarded children. American Journal of Mental De-ficiency, 90, 130-139.Gallagher, J.J., Beckman, P., & Cross, A.H. (1983).Families of handicapped children: Sources of stressand its amelioration. Exceptional Children, 50, 10-19.Harper, D.C. (1984). Child behavior toward the par-ent: A factor analysis of mothers reports of dis-abled children. Journal of Autism and Develop-mental Disorders, 14, 165-182.Harris, V.S., & McHale, S.M (1989). Family lifeproblems, daily care giving activities and the psy-chological well-being of mothers of mentally re-tarded children. American Journal of Mental Re-tardation, 94, 231-239.Hymovich, D.P. (1983). The chronicity impact andcoping instrument: Parent questionnaire. NursingResearch, 32, 275-281.Hymovich, DP., & Baker, CD. (1985). The needs,concerns, and coping of parents of children withcystic fibrosis. Family Relations, 34, 91-97.

Kazak, A.E., & Marvin, R.S. (1984). Differences,difficulties, and adaptation: Stress and social net-works in families with a handicapped child. Fam-ily Relations, 33, 67-77.Lambert, N., & W indmilier, M. (1 981). AAMD Adap-tive Behavior Scale (ABS): School edition. Mon-terey, CA: Publishers Test Service, CTB/McGraw-Hill.Lauffer, G. (1988). The essence and spirit of parentguidance groups of ultra orthodox parents. In R.Berger (Ed.), Parent groups: Collected readings(pp. 166-181). Tel-Aviv: Bob Shapell School ofSocial Work, Division of Continuing Educationand Association for the Development and Ad-vancement o f M anpower in School Services in Is-rael, Tel-Av iv University.

Leyser, Y., & D ekel, G. (1 991 ). Perceived stress andadjustment in religious Jewish families with a

child who is disabled. Journal of Psychology, 125,427-438.Leyser, Y., Margalit, M., & Avraham, Y. (1988).Families o f disabled children in the Israeli kibbutz:A community which provides for all needs. TheExceptional Child, 35 , 165-177.Lifshitz, C. (19 93, April 16). A religious woman getsup in the morning and commits suicide. Maariv.pp. 16-19.Marcenko, M.O., & M eyers, J.C. (199 1). M others o fchildren with developmental disabilities: Whoshares the burden? Family Relations, 40, 186-190.McCubbin, M.A., & Tine Huang, S.T. (1989). Familystrengths in the care of handicapped children: Tar-gets for intervention. Family Relations, 38, 436-443.Ministry of Labor and Welfare, (n.d.). Adaptive Be-havior Scale. Jerusalem: Author.Mullins, J.B. (1987). Authentic voices from parents ofexceptional children. Family Relations, 36, 30-33.Nadler, A., Lewinstein, E ., & Rahav, G. (1 991). Ac -ceptance of mental retardation and help-seekingby mothers and fathers of children with mental re-tardation. Mental Retardation, 29, 17-23.Noh, S., Dumas, J.E., Wolf, L.C., & Fisman, S.N.(1989). Delineating sources of stress in parents ofexceptional children. Family Relations, 38, 4 5 6 -461.Parker, T., Hill, J.W., & Goodnow, J. (1989). The im-pact of special-needs children on their parents'perceptions of family structural interaction pat-terns. Family Therapy, 16 , 259-270.Powell, T.H., & Ogle, P.A. (1985). Brothers and sis-ters a special part of exceptional families. Balti-more, MD : Paul H. Brookes.Salisbury, C.L. (1987). Stressors of parents withyoung handicapped and nonhandicapped children.Journal of the Division of Early Childhood, 11 ,154-160.Shapiro, J. (1989 ) Stress, depression, and supportgroup participation in mothers of developmentallydelayed children. Fam ily Relations, 38, 169-173.Shapiro, J., & Tittle, K. (1986). Psychosocial adjust-ment of poor Mexican mothers of disabled and

nondisabled children. American Journal of Or-thopsychiatry, 56, 289-302.Singer, L., & Farkas, K.J. (1989). The impact of in-fant disability on maternal perception of stress.Family Relations, 38, 444-449.Slater, M.A., & Wikler, L. (1986). "Normalized"family resources for families with a developmen-tally disabled child. Social Work, 31 , 385-390.Suelzle, M., & Keenan, V. (1981 ). Changes in familysupport networks over the life cycle of mentallyretarded persons. American Journal of Mental De-ficiency, 86, 267-274.Tumbull, A.P., & Turnbull, H.R. III. (1990). Fami-lies, professionals, and exceptionality: A special

partnership (2nd ed.) . Columbus, OH: Merri l l .Wikler, L. , Wasow, M., & Hatfield, E. (1983). Seek-

ing strengths in famil ies of developmental ly dis-abled chi ldren. Social Work, 28 , 3 1 3 - 3 1 5 .

Forreprints:Yona Leyser, Ph.D., Department of Educational Psychology, C o u n s d ^ and Special Education, NorthernfflinoisUniwraty,DeKalb,BL60115

adapting families disabled child

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