Mental retardation

Sibling relationships occupy a unique position within the study of human relationships, and are of potentially longer duration than any other human relationship (Cicirelli, 1982). Sibling relationships, especially in comparison to parent-child relationships, are highly egalitarian and the sibling role remains part of the individual's identity regardless of changes in life events. These unique attributes contribute to the emotional and reciprocal influences that have been described among siblings at all stages in life (Cicirelli, 1982; Geottings, 1986; Seltzer et al., (1991).

Less is known about non-disabled adult siblings' relationship with a brother/sister with mental retardation. With the realization that parental care will ultimately end when the parents die or become incapacitated, it is critical to gain an understanding of the potential role of these siblings. Aging parents often have expectations of their non-disabled children, hoping that they become more involved in caregiving as their siblings with mental retardation grow older. Yet, in most cases, siblings are hardly involved in their parents' planning process (Edmondson, 1985). Parents sometimes transfer their caring roles to their able children gradually, but often they expect the able sibling to cope with the new caregiving role only after their death. At this juncture, siblings are forced to change their affective and instrumental roles towards their brother or sister with mental retardation. Some commit themselves towards the new role but others may be ambivalent or frustrated with the new, added responsibilities (Heller & Factor, 1988; Seltzer, 1993).

Unfortunately, there is a paucity of research on how involved non-disabled siblings are in the lives of their brother or sister with mental retardation. Most of the studies involved US data and lacked a comparative or reference group of siblings without disabilities (Gordon, Seltzer &, 1996; Krauss, Seltzer, Gordon & Friedman, 1996).

The purpose of the research is to study how involved Israeli non-disabled siblings are in the lives of their brother or sister with mental retardation, especially after the parents reach old age or are deceased. This major question is examined by comparing the differences in non-disabled siblings' contact and role perception toward a brother/sister with and without mental retardation.

Adult Sibling

In an early study on adult siblings, Cumming and Schnieder (1961) found sibling solidarity to be second in strength only to that between parent and child. Also, Allan (1977) found that sibling interest in the activities of their brothers and sisters continued into old age, even in the absence of regular contact. His study ascertained that sisters shared a stronger affectional tie than did brothers or cross-sex pairs, a finding supported also in an earlier study (Troll, 1971).

Less evident in the literature is the nature or meaning of the sibling tie. Laverty (1962) and Liegh (1982) suggest that positive interest in siblings declines with age. However, Allen (1977) and Cicirelli (1985) contend that older persons desire more kin contact, including contact with their siblings.

A few of the earlier investigations relate sibling ties to the intergenerational and intragenerational context. Hochschild (1973) suggests intergenerational and intragenerational relations to be qualitatively different and to meet different intrapsychic and instrumental needs. For example, Stoller and Earl (1983) report that spouses and children meet more of the instrumental needs of the elderly than do siblings. This, however, does not diminish the importance of the life-validation role that brothers and sisters often play in each other's lives in old age, a role that spouses and children cannot play to the same extent as relationships with them lack the same long history.

Allan (1977) concluded that the key factor for sibling solidarity is "the sibling compatibility and liking for one another" (p. 181), and Leigh (1982) argued that affectional closeness is a crucial element in understanding sibling relationships. In the same context, Gold (1989) identified five types of sibling relationships. Each type reflects a discrete pattern of instrumental support, emotional support, and contact, as well as a different degree of closeness, envy, resentment, approval, and involvement with the sibling. The distribution of same-sex and cross-sex dyads among the types suggests gender composition in the sibling dyad is more important than the gender itself.

Siblings of Persons with Mental Retardation

Zetlin (1986) presented an early review of the studies on siblings of persons with mental retardation. She concluded that most of them dealt with the question of whether the presence of a brother/sister with disability in the family has had any psychological effects on the non-disabled siblings. Most of the researchers did not identify a definite significant psychological impact on siblings (Caldwell, & Guze, 1960; Cleveland & Miller, 1977). Those studies focused on sibling adjustment during childhood and the young adult period. The only early study that examined the commitment of adult siblings to a brother/sister with mental retardation (Cleveland & Miller, 1977) found that the majority reported that their career, marriage, and family decisions had not been affected.

Among those who reported being affected, the most striking patterns were: (a) female adult siblings who as children had assumed a major share of responsibility for their brother/sister with mental retardation continued the close relationship over time: and (b) male adult siblings who had had limited contact with their brother/sister with mental retardation during childhood had limited contact with them later in life and expressed fear about producing a mentally retarded offspring of their own.

Little is known about the role of siblings over the life span of their brother/sister with mental retardation. Caldwell and Guze (1962) examined the sense of commitment of siblings (aged 10 to 16 years) in the event that their parents could not continue to provide care. Only a few thought about their responsibility and possible roles as caregivers to their brother/sister. According to Schatz (1983), about one-fourth of the parents expected their able children to take care of their dependent brother/sister.

Other investigators described the relationship between the able sibling and his/her brother/sister with mental retardation in respect to frequency, kind and quality of contact. Zetlin (1986) reported that only one subject with mental retardation had no contact with his brother or sister, while the other 34 subjects had varying degrees of contact, ranging from daily involvement to phone calls or visits once or twice a year. The majority of the 34 viewed siblings as source of future help. Some already had begun relying on siblings as primary resources while a few considered turning to siblings in times of crisis only. As reported in previous studies, sisters played a greater role than did brothers in providing support to their brother/sister with mental retardation. Younger siblings were more likely than older siblings to assist their brother/sister with mental retardation probably due to their greater commitment to their nuclear family. Finally, in most cases the notion of reciprocity was important to the siblings with mental retardation. In return for siblings' attention and support, they offered their assistance in various ways (e.g., baby-sitting for nieces and nephews, lending money). Although not always able to arrange an equivalent exchange, the brother/sister with mental retardation believed some offer was necessary.

Three studies conducted in the 90's (Griffiths & Unger, 1994; Seltzer et al., 1991; Seltzer et al., 1997) expand the understanding of adult siblings' roles of persons with mental retardation. Griffiths & Unger (1994) studied 41 pairs of parents and their able and disabled adult concerning planning. In these studies family members with mental retardation were living with one or both parents. Although almost half of the siblings were willing to assume caregiving responsibilities in the future, parents were reluctant to have them take on caregiving at the time of the study. More cognitive demands of the brothers/sisters with mental retardation and family communication were predictive of siblings' willingness to help with future caregiving. The degree of physical incapacity of the son/daughter with mental retardation was related to parents' future plans and their reluctance to have family members assume future caregiving.

Seltzer et al. (1991) examined the relationships between adults with mental retardation and their nonhandicapped siblings and the effect of these relationships on the well-being of aging mothers. Families were found to differ in their level and pattern of sibling involvement. Mothers whose children provided support to the adult with retardation had better well-being than mothers with no other children or no involved children.

Finally, Krauss-Wyngaarden et al. (1996) examined the future roles of adult siblings of persons with mental retardation still living in their parents' home. Results showed that siblings maintained regular and personal contact, provided emotional support, and felt knowledgeable about various needs of their brother or sister with mental retardation. Of the siblings who had firm plans for the future, 36% intended to co-reside with their brother or sister with mental retardation, whereas 64% intended to live apart.

Based on the literature review above, we raised the following research questions:

(1) What are the differences in non-disabled siblings' frequency of contact and role perception (affective, instrumental giving and receiving and doing activities together) toward a sibling with or without mental retardation?

(2) What is the effect of the past nuclear family climate (nuclear family cohesion, expressiveness, and conflict) on frequency of contact and role perception in the two groups of siblings?

(3) What is the effect of the siblings' gender on frequency of contact and role perception in the two groups of siblings?

(4) What is the effect of living parents on frequency of contact and role perception in the two groups of siblings?

Methodology

Sample and Sampling

The research sample of non-disabled adult siblings of a brother/sister with mental retardation included 76 respondents compared with 69 respondents in the comparison sample--siblings to a brother/sister without mental retardation. We identified the two samples by using the Linked Sample Procedure (Kish, 1965). First, we identified a total sample of 105 adults, age 40 years and above, with moderate mental retardation who participated in AKIM (national organization for the habilitation of persons with mental retardation) recreation programs in central Israel. After receiving permission from their families, we requested their sibling brother/sister closest in age (up to five years difference) to participate in the study. Seventy-six responded positively to our request. The same group was asked to provide us with a friend close to them in respect to age and geographical location with a brother/sister close to his/her age. Sixtynine responded positively to our request and these friends served as a comparison group.

The characteristics of the siblings in the two groups are presented in Table 1.

The siblings were Jewish, typically in their late forties, slightly more female than male. Most of them were married and born in Israel and had high school education and above; about half of the respondents in the two groups identified themselves as not observing religion (secular). The majority had white-collar jobs. The two groups differed in three categories: the research group (siblings of a person with mental retardation) had more siblings per family than the comparison group of siblings of a person without mental retardation (Chi-Square=64.05; DF=1; P [is less than] .001), there were more blue collar workers in the research group than the comparison group (Chi-Square=5.54; DF=1; P [is less than] .01), and the two groups differed in respect to whether their parents were alive. The comparison group had a higher percentage of living parents than compared to the research group (Chi-Square=10.39; DF=2; P [is less than].01)

Instrumentation

Instrumentation included three components: a demographic questionnaire, the Greenboro Instrument (Adams, 1968), and the Family Environment Scale (R. Moos & B. Moos, 1981). The demographic questionnaire included sibling's gender, age, marital status, origin, years of education, religiosity, work status, type of work, number of siblings per family, and whether parents are alive. Two of these measures were included in the analysis below: sibling's gender and whether parents were alive.

The Greensboro Instrument, developed originally by Adams (1968), measures subjective and objective dimensions of the relationship between parents and their adult children and between siblings and their relatives. The subjective measures are affective relationship, consensus in values, identification, commitment, and the importance of having relationship with relatives. The objective measures include size, density and frequency of relationship, and types of contact--such as visits, social activities, togetherness, ceremonies, and types of assistance (such as giving and receiving of tangibles), and ways of communication (such as telephone conversations and letters). The scores can be summarized into two categories: objective score-frequency of contact and three subjective role perception scores: giving (instrumental and affective), receiving (instrumental and affective) and engaging in activities together. Through the scale, tested for consistency using a Hebrew version on 145 siblings, we identified the following: giving (instrumental, Cronbach alpha=.89; affective, Cronbach alpha=.94); receiving (instrumental, Cronbach alpha=.87; affective, Cronbach alpha=.92) and togetherness, Cronbach alpha=.82.

The Family Environment Scale (FES), designed and tested by R. Moos and B. Moos (1981), is a self-reporting instrument that measures family climate. In the original version, it consisted of 90 yes/no items divided into 10 dimensions. We used the shortened version that uses only three of the 10 dimensions: cohesion, expressiveness and conflict. The scale was tested for consistency for the short Hebrew version (45 items) with Cronbach alpha's of .83, .77 and .78 for the above dimensions. We used this scale in testing family climate retrospectively in regard to the nuclear and current family.

Procedure

After tracking the non-disabled siblings of adults with mental retardation we asked trained interviewers to contact them and schedule a 45-minute interview based on the above questionnaires. If the first sibling refused, the interviewers were instructed to turn to the next brother/sister closest in age (fortunately, only six siblings refused to respond). During the interview, the siblings were asked to provide two names and telephone numbers of friends who had a brother/sister without mental retardation. This method, called Linked Sample Method (Kish, 1965), enabled the interviewers to get an age-matched sibling for an interview.

Results

We tested the first research question regarding differences between frequency of contact and role perception toward a sibling with/without mental retardation. Findings are presented in Table 2.

Analysis of variance revealed that siblings of persons with mental retardation reported that they had slightly more frequent contact with him/her (monthly contact), than siblings of persons without mental retardation had with a non-disabled sibling (semiannual contact) (F(1, 143)=10.92; P [is less than] .001). Siblings of brother/sister without mental retardation reported they received more instrumental (F(1, 143)=8.57; P [is less than] .004) and affective assistance (F(1, 143)=39.93; P [is less than] .001) than siblings of a brother/sister with mental retardation. The significant differences were in the following items: advice (Chi Square=58.51; DF=l; P [is less than] .001), assistance in special events (Chi Square=14.50; DF=l; P [is less than] .001), presents (Chi Square=34.44; DF=1; P [is less than] .001), financial aid (Chi Square=9.12; DF=1; P [is less than] .002), assistance with children (Chi Square=4.67; DF=1; P [is less than] .03) and emotional support (Chi Square=14.38; DF=1; P [is less than] .001). In respect to giving, differences were related to the affective dimension only, in favor of a brother/sister without mental retardation (F(1,143) =4.94; P [is less than] .03. The two groups did not differ in instrumental giving. Overall, the two groups did not differ in respect to engaging in activities together. However, specific item analysis shows differences in favor of siblings to a brother/sister with mental retardation in going to concerts or theater together (Chi Square=12.89; DF=1; P [is less than] .001) and celebrating holidays together (Chi Square=7.16; DF=1; P [is less than] .001).

In the second research question we tested the effect of family cohesion, expressiveness and conflict on the differences between the two sibling groups by inserting them as covariates in Univariate between-subjects effects. We did not find any significant effect of the variables above on the differences between the two groups in respect to frequency of contact. However, we found that siblings of a brother/sister with mental retardation reported that they received more affective assistance compared to siblings to a brother/sister without mental retardation when they reported that their nuclear family was more cohesive, allowed more expressiveness and had less conflicts (F(1,4)=10.34; P [is less than] .001). Siblings of a brother/sister without mental retardation reported they did more activities together compared to siblings of a brother/sister with mental retardation when their nuclear family was more cohesive, allowed expressiveness and had less conflicts (F(1,4)=4.59; P [is less than] .002).

In the third research question, we examined the effect of sibling's gender and whether parents were alive on the differences between the two sibling groups by inserting them as covariates in the original analysis of variance above. The frequency of contact of non-disabled siblings to a sibling with mental retardation was significantly higher when parents were not alive compared to nondisabled sibling to a sibling without mental retardation (F(1,3) =15.34; P [is less than] .001), regardless of the non-disabled sibling's gender. We found that non-disabled siblings to a brother/sister without mental retardation gave more instrumental and affective assistance compared to a brother/sister with mental retardation when the sibling was a sister and the parents were not alive (give/instrumental-F(1,3)=3.36; P [is less than] .03; give/affective-F(1,3)=4.53; P [is less than] .005). Furthermore, we found that siblings to a brother/sister without mental retardation received more instrumental assistance compared to a brother/sister with mental retardation when the sibling was a sister and the parents were not alive (F(1,3)=7.19; P [is less than] .001). They received more affective assistance when the sibling was a sister regardless if their parents were or were not alive (F(1,3)=17.11; P [is less than] .001). No significant effects of the intervening variables were identified between the two groups with respect to doing activities together.

Discussion

The purpose of the research was to study the involvement of non-disabled siblings in the lives of their brother and sister with mental retardation by comparing them with a matched group of non-disabled siblings to siblings without mental retardation. Overall, the non-disabled sibling had more frequent contact with his/her brother/sister with mental retardation compared to the con tact non-disabled siblings had with their non-disabled sibling. However, in respect to the quality of relationship measured by role perception, siblings to non-disabled brothers/sisters reported receiving more instrumental and affective assistance and affective giving compared to non-disabled siblings of brothers/sisters with mental retardation.

The different pattern is probably reflected by the siblings' sense of commitment toward their brother/sister with mental retardation to maintain the contact regardless of changes in his/her life situation (Krauss-Wyngaarden et al., 1996). This contact increases significantly when the parents are no longer alive. Siblings of a brother or a sister with mental retardation feel they have an extra responsibility to maintain the caring or to provide him/her the family support they need (Zetlin, 1986). Conversely, the sibling ties between non-disabled siblings exist regardless of the frequency of contact they have. This is reflected primarily by the subjective perception of receiving or providing affective assistance. As Allan (1977) and Leigh (1982) concluded in their study of healthy siblings, the key factor for sibling solidarity was affectional closeness and not circumstantial reasons.

Aside from the commitment and responsibility non-disabled siblings feel toward their brother/sister with mental retardation, in many cases they are actually the only persons that exist in their social support system. In addition, parental and societal expectations are that the non-disabled sibling will be responsible for their brother/sister with special needs, regardless of their personal feeling toward them (Schatz, 1983). Conversely, non-disabled siblings of a brother or sister without mental retardation may have other responsibilities and engagements with their own spouse/husband or children, and therefore will less frequently see them, although they perceive the relationship as supportive (Allen, 1977; Cicirelli, 1985).

The findings shed light on perceptions of adult sibling ties and, in particular, the importance of receiving and giving, and the affective support on the instrumental dimension of assistance. In respect to giving or receiving, compared to siblings of a brother/sister with mental retardation, siblings of non-disabled siblings perceive the ties as egalitarian and related to getting advice and receiving emotional support when needed or support related to family ceremonies or holidays. They may or may not meet often or use assistance frequently, but nonetheless, their perception that they can receive affective support sustains the sibling ties for life (Geottings, 1986). Our findings indicate that in respect to providing instrumental assistance, the two groups did not differ significantly, primarily because they view the sibling tie as affective rather than instrumental or due to the fact that they can turn to others for concrete help.

Based on the assumption that the sibling tie is affective, egalitarian and reciprocal (Cicirelli, 1982), we were surprised to find that, overall, the two groups did not differ in perception of the activities they do together. A possible explanation is the low frequency with which they meet at this stage in their life. The only difference was in relation to family celebrations or holidays whereas non-disabled siblings could share with their non-disabled siblings an egalitarian and more meaningful relationship than non-disabled siblings of siblings with mental retardation.

Finally, the researchers expected to find that siblings who described the nuclear family as cohesive, enabling expressiveness and with less conflict would be more receptive and assisting than brothers and sisters who described their nuclear family less positively. Surprisingly, family climate was not related to the frequency of contact between the siblings or to the perception of engaging in activities together. Similair findings were reported in earlier studies regarding the increase in perception of affective giving and receiving is cases where the sibling was a woman (Campbell, 1995) and the parents were not alive (Allan, 1977; Cicirelli, 1985). It is possible that women siblings are expected to continue to keep the family together when the parents are no longer alive (Edmondson, 1985).

Implications

The research suggests that sibling ties continue into adulthood despite the fact that they do not keep frequent contact with their non-disabled or disabled sibling. This is an encouraging message to rehabilitation counselors as well as providers of family support services who are concerned about the lack of solidarity in the Israeli family and in particular to a dependent brother or sister with disability. Although their role appears to revolve more predominantly around the affectionate rather than instrumental dimension, siblings can be approached in cases of crisis or major life event when the parents are no longer alive.

The current study was devoted to the non-disabled sibling's involvement and role perception toward his/her brother or sister with mental retardation. Future research may wish to examine how this favorable role perception is associated with supportive behaviors on the part of the non-disabled sibling. Further investigation is needed to identify interaction between the non-disabled sibling and his/her sibling with mental retardation in different situations. In addition, graduate programs in rehabilitation counseling should perhaps include more coursework related to sibling support and its possible role in increased quality of life for persons with disabilities.

Reference

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Arie Rimmerman, Ph.D/DSW, Dean, Social Welfare and Health Studies, University of Haifa, Mount Carmel, Haifa, Israel 31905. Email: rimmer@research.haifa.ac.il

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