Stability of measures of the home environment for families of children with severe disabilities

Research in Developmental Disabilities 23 (2002) 17±35

Stability of measures of the home environment for families of children with severe disabilities$ Ann Maria Rousey, Margaret Wild, Jan Blacher* UCR Families Project, School of Education, University of California, Riverside, CA 92521, USA Received 26 September 2000; received in revised form 3 May 2001; accepted 25 June 2001

Abstract The stability of home environment in families of children with severe disabilities was investigated. Sixty-four families were assessed at three time points regarding aspects of their home environment. Family environment scale, home quality rating scale (HQRS) and home observation for measurement of the environment scores were collected at 7 and 9 years after the initial assessment. A remarkable degree of stability was observed, particularly for the FES. The median change score was zero for most subscales; no correlations differed signi®cantly between the 7- and 9-year retests. A repeated measures MANOVA found a signi®cant change in scores over time for only one subscale of the HQRS but none of the 10 FES subscales. Results suggest that, for the FES, administration of these measures every 2 years, perhaps less often, would be suf®cient in longitudinal studies of this population. Internal consistency reliability of the FES was lower for these families than in the standardization samples, emphasizing the need to validate measures used with special populations. # 2002 Elsevier Science Ltd. All rights reserved. Keywords: family environment scale; home quality rating scale; home observation for measurement

$ The authors gratefully acknowledge the families involved in this longitudinal study, and the support provided by NICHD Grant no. RO1 HD21324, J. Blacher, P.I., and NICHD Supplement to A. Rousey, Investigator. We also would like to thank an anonymous Reviewer for unusually constructive comments that we feel greatly improved the manuscript. Requests for reprints and all correspondence should be addressed to J. Blacher. * Corresponding author. Tel.: ‡1-909-787-3875; fax: ‡1-909-787-3942. E-mail address: [email protected] (A.M. Rousey).

0891-4222/02/$ ± see front matter # 2002 Elsevier Science Ltd. All rights reserved. PII: S 0 8 9 1 - 4 2 2 2 ( 0 1 ) 0 0 0 8 9 - 0

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1. Introduction Children with mental retardation do not grow up in a vacuum. Yet, despite productive empirical efforts to measure environmental dimensions and their effects, we know little about the stability of factors in the home environment that may affect, or be affected by, a child with severe retardation. The stability of home environment in families of children with severe disabilities is of theoretical interest, especially given the recent focus on adaptation throughout the family life cycle (Marshak, Seligman, & Prezant, 1999). Family life cycle theorists (e.g., Framo, 1994) have proposed that families go through stages determined by developmental milestones: marriage, childbirth, school entry, adolescence, launching a young adult, and so on. Families move out of the `early childhood stage', for example, when their children no longer require constant supervision and have developed self-care skills. Adolescence, in the normal course, is marked by at least minimal con¯ict between parent and child in preparation for separation of the child from the parents and development of an adult identity. Various stages of the family life cycle have been proposed by a number of people since the late 1940s (Framo, 1994; Carter & McGoldrick, 1989), though usually in reference to two-parent families having ``typical'' or non-disabled children. In the 1950s, Farber elucidated some of the ways that having a child with mental retardation might disrupt passage through these typical life cycle stages (Farber, 1959, 1975; Farber & Ryckman, 1965). Indeed, he referred to ``arrests'' in the life cycle, whereby parental roles may have to be rede®ned in order to provide continuity of care for such children. In general, parents of children with severe disabilities simply do not experience life cycle transitions at the same rate, or derive the same meaning from them, as their counterparts who have ``typical'' offspring (Blacher, 2001; Hanline, 1991). For example, their child will require extensive supervision for a much longer period than the typically developing child, even into adolescence and young adulthood. Transitions from one school program to another, or out of public schooling altogether at the end of high school, may produce additional anxiety or concerns for these parents. This type of transition is referred to as launching in the normative life cycle literature (McCullough & Rutenberg, 1989; Turnbull & Turnbull, 1990). More recently, Seltzer and Ryff (1994) carefully delineated the differences between ``normative and non-normative parenting, particularly with reference to aging parents of adult children with mental retardation or developmental disabilities. Speci®cally, aging parents face the dual-challenge of looking after their own possibly ailing health concerns as well as the continual education, service, and/or social needs of their adult offspring. Thus, having a child with mental retardation might in¯uence assessments of family environment, particularly during the years that the child lives at home (prelaunching stage) and still requires a high level of care. Researchers have suggested that changes in family environment tend to occur in response to several factors: changes, often developmental, in individuals within the family; shifts in the external environment such as occur during an economic depression (Elder, 1974),

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and changes in life-cycle related variables or crisis points (Rolland, 1989, 1993). We might expect that, given the relatively slow development of individuals with severe mental retardation, and the delays or shifts in transition already noted, the environment in these families might have substantial constancy. The central purpose of this study was to examine the extent to which there is stability in the family environment in the presence of a child with severe retardation. Family environment involves the aggregate of the social and psychological contexts of the family, the directions of personal growth within individual family members, and the dynamics of the interpersonal relationships among family members (Moos & Moos, 1976, 1986, 1994). The family environment is presumed to be a relatively stable component of family life; however, it is susceptible to change during family life cycle transitions. Findings from other recent studies have documented the importance of the family environment for school adjustment (Ketsetzis Ryan, & Adams, 1998), and in the general adaptation of children and youth (Timko & Moos, 1996). Indeed, adolescents' perceptions of their own family environment have been shown to relate to their self-esteem and adjustment (Harvey & Byrd, 1998). These studies include both typical or ``normal'' subject populations, as well as special populations such as young adults with spina bi®da (Loomis, Javornisky, Monahan, & Burke, 1997), schizophrenia (Phillips, West, Shen, & Zheng, 1998), or learning disabilities (Margarlit & Ankonina, 1991). Indeed, the study of family environments in the presence of an adolescent with severe disabilities would be particularly complex, in part because of parents' dif®culties in recognizing such traditional concerns as appearance, identi®cation, and independence (Preto, 1989). What is known about family environment in families of children with disabilities is rooted predominantly in correlational studies or one-time assessments (Bradley, Rock, Caldwell, & Brisby, 1989; Ghatak, 1983; Mink, Nihira, & Meyers, 1983; Margalit & Raviv, 1983). There are also studies documenting the changes in the family environment immediately preceding or following divorce (Furstenberg, 1982; Hetherington, Cox, & Cox, 1982; Wallerstein & Kelly, 1980) or other stressful life events such as economic stress (Elder, 1974). The most common family environment questionnaire used in marital and family research over the past two decades has been the family environment scale (FES) (Moos & Moos, 1994). The FES operationalizes a tri-dimensional concept of the family environment (Moos, 1990). These dimensions are: quality of interpersonal relationships (e.g., expressiveness), promotion of personal growth (e.g., independence or achievement orientation) and system maintenance (e.g., family organization). From 1982 to 1997, the FES was used in over 400 published articles, book chapters and dissertations (Piotrowski, 1999). The FES has been applied in research with an extraordinarily diverse array of groups, including families of alcoholics (Moos & Moos, 1984), of children with cystic ®brosis (ThatcherBenza, 1999), native-born and immigrant Asian-Americans (Handal, LeSteibel, Dicarlo, & Gutzwiller, 1999), African-Americans, Latinos, and Anglos (Moos & Moos, 1986). Enos and Handal (1985) compared the old (1974) and new (1981)

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A.M. Rousey et al. / Research in Developmental Disabilities 23 (2002) 17±35

standard scores in a sample of 966 adolescents and found a very similar pattern of results by age and gender. Given its widespread use, it is not surprising that the family environment scale has also been employed in research on families of children with disabilities. In a sample of 479 families of children with developmental disabilities, Boyce, Behl, Mortensen, and Akers (1991) found low but signi®cant correlations between scores on the FES and stressful life events. The FES cohesion subscale has been a signi®cant predictor of stress and depression for both Latina (Blacher, Shapiro, Lopez, Diaz, & Fusco, 1997) and African-American mothers (Rousey & RogersDulan, 2000) of children with mental retardation. Caldwell and Bradley's (1979) home observation for measurement of the environment (HOME), provides another avenue for assessing family environment. Unlike the FES, it does not rely on self-report. The HOME is designed to measure the developmental or academic stimulation offered by parents in the home, and is a commonly used instrument in studies of environmental impact on cognitive development. While several items on the HOME ask about books, educational toys and other materials available, parent±child interaction is assessed as well. The home quality rating scale (Meyers, Mink, & Nihira, 1981, 1990) is a second observational measure of the environment, one which was designed speci®cally for families of children with mental retardation. While recognizing the utility of both FES and the HOME, Meyers et al. (1981/1990) developed the HQRS to provide a fuller picture of intra-family dynamics that includes acceptance of the child, family participation in care, and promotion of growth. Two factors of the HQRS, harmony and quality of parenting, and concordance in support of child care, have been found to relate to measures of psychosocial adjustment in samples of children with mild and moderate mental retardation (Nihira, Mink, & Meyers, 1984). The family environment measures, HOME and FES, show moderate stability over time (Bradley & Caldwell, 1982; Moos, 1990; Moos & Moos, 1986, 1994). Test±retest correlations for the HQRS have not been reported in the research literature. These instruments help to de®ne and operationalize the separate domains of the family environment and have been widely used in families where there is a child who has mental retardation. The salient role of environmental in¯uences for families with children who have severe mental retardation has long been recognized (Blacher, 1984; Berkson & Landesman-Dwyer, 1977; Mink, Blacher, & Nihira, 1988). Research in this area has revealed that ``individuals with mental retardation, regardless of the severity of their mental and physical impairments, and those who live and work with them are affected signi®cantly by their social and physical milieus (Landesman, 1987, p. x)''. Retrospective and longitudinal analyses of families of children with disabilities have typically surrounded major life events, such as birth (Bogdan, Brown, & Foster, 1992), diagnosis of a severe disability, or out of home placement (Blacher, 1984). The most comprehensive work to date on family environments where there is a child with mental retardation has been done by Mink and her colleagues

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21

(Mink, 1986; Mink, Meyers, & Nihira, 1984). In general, these studies show that there is a reciprocal effect of a child with retardation on the home environment, whereby some aspects of the home are growth-promoting (e.g., amount of learning opportunities provided by parents, which might be re¯ected in FES subscales such as achievement orientation or independence), some are not (e.g., con¯ict between parents), and both are in¯uenced by the child's level of functioning, caregiving demands, and perhaps behavior problems. Other researchers have also begun to recognize the importance of personal beliefs on family adaptation (Rogers-Dulan & Blacher, 1995; Mink, 1993). Based upon this research, it is hypothesized that aspects of the family, such as religiosity, will also emerge as extremely stable regardless of the chronic demands of parenting, even parenting of a child with severe mental retardation. A limitation of data collection at only one time, or over very short periods of time, is that it can provide only a brief snapshot of the family environment, whereas longitudinal data allow examination both within and across discrete time periods. In the current study, there was one main question of interest: to what extent is there stability in the family environment when there is a child with severe retardation? This question was examined by analyzing mean changes in family environment measures, as well as individual family changes, at three timepoints across a 9-year period. Given less individual change to which it is called upon to adapt, we anticipated that the emotional aspects of the home environment, conceptualized here by domains such as con¯ict, cohesion, harmony in parenting, would remain consistent over a 9-year period. 2. Method 2.1. Subjects Subjects were, initially, 100 mothers of a children with severe mental retardation living predominantly in the southern California area. The original inclusion criteria were that the child was between the ages of 3 and 8 years at initial contact, was diagnosed with severe or profound retardation, and was living at home with at least one parent. Also, parents were required to speak English, because at that time we did not have Spanish versions of our interview protocol. Retardation classi®cations were primarily made by regional centers, California state agencies that served over 100,000 individuals with developmental disabilities. By the time 3 interview, 67 of the original 100 families had maintained their child at home; 23 had placed their child into an alternative care facility; and 10 were lost due to attrition (3 died, 3 moved out of the United States, 4 elected not to continue involvement). Complete data were available for 64 of these 67 families, and subsequent analyses involve the dataset from these 64. A multivariate analysis of variance was performed to test for differences in demographics and child characteristics between subjects retained over the 9-year period (N ˆ 64) and those who were not retained (N ˆ 36). No signi®cant

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A.M. Rousey et al. / Research in Developmental Disabilities 23 (2002) 17±35

differences were found on the variables of maternal education, maternal age, marital status, maternal employment, number of children in the home, or on any child characteristics (age, adaptive behavior score, maladaptive behavior score, gender). A second multivariate analysis of variance was conducted to test for possible differences at time 1 between retained and non-retained families on the family measures which formed the focus of this study (i.e., the 10 FES subscales and 4 HQRS subscales and total HOME score). Five differences were found. Families retained for this study scored higher at time 1 than non-retained families on the FES organization (F ˆ 8:5, P < 0:01) and moral religious subscales (F ˆ 6:1, P < 0:05), the HQRS scales of concordance in care (F ˆ 8:6, P < 0:01) and quality of the residential environment (F ˆ 6:6, P < 0:05) and total HOME score (F ˆ 4:1, P < 0:05). In general, then, families with whom we were able to maintain consistent contact were those with more organized, consistent home environments. A third MANOVA was performed comparing the families who had placed their children with the 64 families on whom we had complete data. The placed/non-placed results were nearly identical with the analyses with the retained/non-retained comparison already reported, with families who maintained their children at home scoring signi®cantly higher on organization, moral religious orientation and concordance in child care. This consistency is not surprising since the families who placed their children comprised almost twothirds of the group with missing data. Initially, 92% of the 64 families were married; and 84% were still married at time 3. Ethnicity of the families was reported as: 72% Anglo-American, 9% African-American, 8% Latino, 14% other (mainly, Asian). Education levels of the mothers were high, with 63% of mothers and 73% of fathers having had at least some college, indicating that this was at least a middle class sample. At the ®rst interview, families had a mean of 2.3 children living at home, with a range from 1 to 5; in 17% of the families, the child with a disability was the only child at home. The adaptive behavior scale (Nihira, Foster, Shellhaas, & Leland, 1974) was used at time 1 to assess adaptive and maladaptive behavior. Using the N of 64, the mean adaptive behavior score was 41.5 (SD ˆ 18:5) further indicating that this was a low functioning sample of children. The children required considerable caretaking; 37% were non-ambulatory, 61% were not toilet trained and 63% were non-verbal. Sixty-four percent were boys, with almost half (46%) ®rst born. Their mean age at the ®rst interview was 5.6 years (SD ˆ 1:7). By time 3, 36% were nonambulatory, 47% were not toilet trained and 63% had absolutely no self-feeding. Also, at time 3, 56% of the children were still non-verbal. Clearly, even by time 3, signi®cant numbers of these children were lacking in even the most basic self-care skills, and very little change occurred on this dimension over a 9-year period. 2.2. Instruments The FES (Moos & Moos, 1986, 1994) was used to assess the family or social environment; it was not developed speci®cally for families who had a child with

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mental retardation. The FES is a parent self-report, true±false instrument. The measure contains 9 subscales, of 10 items each. Subscales have been conceptually rather than empirically derived; together, these nine scales assess three main dimensions of the family environment: relationship (cohesion, expressiveness, con¯ict); personal growth (achievement orientation, intellectual±cultural orientation, active±recreational orientation, moral religious emphasis); and system maintenance (organization, control). Seven FES subscales have reported internal consistency reliabilities above 0.70, with the remaining three with reliabilities from 0.64 to 0.69 (Moos, 1990). The concurrent and predictive validity of the FES have been empirically validated (Moos & Moos, 1986). In this study, we analyzed the FES subscales separately, not as dimensions or by family types. Subscale scores were standardized to a mean of 50 and standard deviation of 10, using the data from the authors' preliminary normative sample of 285 families (Moos & Moos, 1976). The HQRS (Meyers et al., 1981/1990) was used to measure the quality of parenting and parental attitudes toward the child with mental retardation. The measure was developed speci®cally for assessing families who had a child with retardation; it is a Likert-type instrument completed by interviewers shortly after a home visit. Four of the ®ve subscales of this measure were utilized in this study. For readers with limited familiarity with the HQRS, the following summary of the subscales is provided. Harmony of the home and quality of parenting consists of seven items which assess acceptance of the child, growth promotion in child rearing and adjustment/ harmony in the home. Concordance in support of child care is a four-item scale measuring the relationship between parents and sharing of child care responsibilities. Openness and awareness of respondent is measured by three items assessing respondents' awareness of disability and reliable (versus socially appropriate) responses. Quality of the residential environment is a four-item scale measuring the safety, cleanliness and interior quality of the child's residence. Cronbach's alphas for the four subscales in the standardization sample were 0.83, 0.78, 0.76 and 0.71 (Nihira et al., 1984). The ®fth subscale (quality of the residential neighborhood) was not used, because the reliability was lower. The home observation for measurement of the environment (Caldwell & Bradley, 1979) was used to measure factors of social, cognitive, and emotional support available to young children within their home environments. The measure is a true±false protocol and, like the HQRS, it is completed by interviewers shortly after a visit to a family. While the original version of this instrument was traditionally used for families of children without disabilities, it has been used widely with families who have young children with retardation (Bradley et al., 1989; Mink, 1986; Mink et al., 1988, 1984, 1983). There are infant-toddler, early childhood, middle childhood and adolescent versions of the HOME. Versions for older children or adolescents with disabilities now available were not accesible at the time of data collection, and hence, the standard versions were used with selection based on a combination of the chronological and developmental age of the child as noted by Bradley and colleagues (Bradley et al., 1992, 1989). Since

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A.M. Rousey et al. / Research in Developmental Disabilities 23 (2002) 17±35

we examined home environment across a 9-year period in this study, we utilized different versions of the HOME. Thus, we used only total HOME scores in analyses, because the subscales change slightly with each version of the instrument. 2.3. Procedures All data reported here were obtained during lengthy in-home interviews, often lasting from 2 to 4 hours. Whenever possible, both parents were present. Interviewers were graduate students who had some prior training in developmental disabilities; all staff received additional training in the administration of measures, their scoring, interviewing techniques, and so forth. Two interviewers were present for nearly all interviews; mothers served as primary respondents on the family environment measure. Parents completed the family environment scale during the home interview. However, the other two measures (the home quality rating scale and the home observation for measurement of the environment) were jointly completed by interviewers immediately following each home interview, before the FES was scored. In addition, interviewers compiled anecdotal ®eld notes (with use of a ``script'' to guide observations). These notes are not included in analyses per se, but they have been helpful in interpreting some quantitative ®ndings. Data analyzed here represent three different timepoints, or waves, across a 9-year period. We will refer to these data collection periods as time 1±3, though the time interval between points was very different. The interval between time 1 (1982±1983) and time 2 (1988±1989) was 6±7 years; the interval between time 2 and 3 was 2±3 years; the interval from time 1 to 3 was 8±9 years. This allowed us the opportunity to assess temporal stability over periods of varying length. Families were visited and were actively involved in the study during the long interval from time 1 to 2; however, they were not administered all the home environment measures of interest during that time period. Thus, we have utilized data from instruments in common across three data collection points that span a 9-year period of interest. 2.4. Analysis Descriptive statistics (means, frequencies and standard deviations) were generated for each of the three waves of data collection. As one measure of stability, test±retest correlation matrices were generated across all three waves of data collection. As a second measure of stability, repeated measures MANOVA's, were performed to assess the signi®cance of differences in the means across time, with time as the independent variable and the subscale scores as the dependent variables. A MANOVA was not performed for the HOME as the instrument administered for different ages is not identical. It is possible that similar group means could mask considerable variation among individuals across time. Consequently, individual change scores were also computed and means and frequencies calculated for changes from time 1 to 2, and

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from time 1 to 3. Because variance in scores may be either a function of temporal instability or measurement error, internal consistency reliability coef®cients (Cronbach's alpha) were computed for each score using the initial sample of 100 families. As the focus of this analysis was on the reliability for the population of families of children with severe disabilities, the largest sample size available was used, i.e., all 100 families from whom data were collected at time 1. Stability over time represents temporal consistency, whereas reliability coef®cients measure the second aspect of consistency, i.e., consistency within the measures themselves. Although the FES and HOME are both extremely commonly used measures, neither were normed or standardized for families of children with severe disabilities, so their internal consistency for this population could not be assumed. To test the signi®cance of differences in strength of correlations obtained at the 7- and 9-year retest, a Z-test was used for the single sample test of r12 ˆ r13 (Kleinbaum, Kupper, & Muller, 1988, pp. 92±93). For signi®cance, a more stringent (for our hypothesis of no difference) one-tailed test was used. This is based on the well-established fact that correlations tend to decline with the length of time between test administrations (e.g., Nunnally & Bernstein, 1994, p. 255). A Bonferroni correction was applied for the number of tests (N ˆ 14 with 10 FES subscales and four HQRS subscales). With the correction applied, the Zvalue for a single sided test is 2.58. Without the Bonferroni correction there is a 51% probability of a signi®cant result by chance alone in 14 tests (Kleinbaum et al., 1988; Uitenbroek, 1997). 3. Results In order to explore the question, ``Is family environment stable?'' We ®rst examined the stability of group means, followed by an examination of the stability of family scores in relation to one another. Means at times 1 through 3 and test± retest correlations are shown in Table 1 for the family environment scale subscales. While the focus of our inquiry has been on stability of families of children with disabilities, and not on comparisons with other families, it is evident from Table 1 that there were some differences from the normative group (which had a mean of 50 and SD of 10). In particular, families in this longitudinal study were low in con¯ict. In addition, very little difference in mean scores occurred over time. As would be expected, correlations for points closer in time are generally higher than for correlations for assessments taken over a greater timespan. However, no subscale correlations differed signi®cantly between the 7- and 9-year retest periods. Means and test±retest correlations are shown in Table 2 for the home quality rating scale subscales. Again, it can be seen that the mean scores changed very little over time, with the greatest change, not quite one point, occurring on the concordance in care subscale. Again, no subscale correlations differed signi®cantly between the 7- and 9-year retest periods.

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Table 1 Family environment mean scores and Pearson's correlations across three timepoints (N ˆ 64) Subscale

Means

Pearson's r

Time 1

Time 2

Time 3

Times 1±2

Times 1±3

Times 2±3

Relationship dimension cohesion con¯ict expressiveness

56.2 40.7 52.8

53.8 41.6 52.7

53.4 39.3 53.3

0.35** 0.32** 0.21*

0.40** 0.42*** 0.30*

0.57**** 0.60**** 0.50****

Personal growth dimension achievement orientation active±recreational independence intellectual±cultural moral±religious

46.5 39.4 46.0 46.9 57.2

48.1 42.2 46.2 49.3 56.3

50.1 42.6 49.6 49.3 56.4

0.43*** 0.43*** 0.21 0.49**** 0.72****

0.40*** 0.35*** 0.28* 0.60**** 0.70****

0.58**** 0.64**** 0.38** 0.71**** 0.79****

System maintenance dimension control 49.4 organization 56.1

53.5 54.9

51.9 56.3

0.31* 0.45****

0.37** 0.36**

0.48**** 0.60****

*

P < 0:05. P < 0:01. *** P < 0:001. **** P < 0:0001. **

Results of the repeated measures multivariate analysis of variance are shown in Table 3 for the family environment scales subscales. Although the means of the subscales differ overall, there is no main effect of time; that is, the subscale scores did not change signi®cantly from one time to the next. There is, however, a signi®cant interaction effect of subscale  time, that is, although there is no main effect of time, some subscales did change more than others, and in different directions, as can be seen from Table 1. Results of the repeated measures multivariate analysis of variance for the home quality rating scale are shown in Table 3. There was a statistically signi®cant effect of subscales and of time. Speci®cally, the subscale ``concordance in child care'' was signi®cantly lower at time 3 than at time 1. Given that some of the Table 2 HQRS mean scores at three timepoints and Pearson's correlations across timepoints (N ˆ 59) Subscale

Means Time 1

Harmony and quality Concordance in care Awareness of disability Quality of residence **

P < 0:01. P < 0:0001.

****

27.0 12.6 12.2 14.3

Pearson's r Time 2 24.9 11.4 11.6 14.1

Time 3 26.3 11.7 11.9 14.1

Times 1±2 0.20 0.55**** 0.12 0.56****

Times 1±3 ****

0.42 0.36** 0.53**** 0.53****

Times 2±3 0.50**** 0.66**** 0.34** 0.76****

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Table 3 Repeated measures MANOVA Source

d.f.

MS

Family environment scale subscales subscale 9 time 1 subscale  time 9

4720.6 410.8 157.1

Home quality rating scale subscales subscale 3 time 1 subscale  time 3

6298.5 35.5 4.0

F 31.24 3.47 2.57 940.4 6.4 1.0

P 0.0001 0.0666 0.0065 0.0001 0.0137 0.4140

mothers were divorced by the 9-year follow-up, and a few had married or remarried, some change in this subscale would be expected. Although change in this subscale was signi®cant, it was relatively small, less than 1 point on an 11point scale. Its statistical signi®cance was probably due to the relatively low variation in this sample, rather than to a large absolute difference. Because the appropriate version of the HOME is dependent on the child's level of development, it was necessary to use different versions of this instrument across the three timepoints; hence, direct comparison of means was not an option. In order to obtain some insight into the stability of the cognitive and emotional support of the home (as assessed by the HOME instrument), standard scores were generated within each timepoint using PROC STANDARD (SAS Institute, 1986). The mean of the absolute value of change scores for each family was calculated. During the 9-year period, families changed an average of 0.95 standard deviations from their initial standard scores at time 1. These change scores were substantially positively skewed, with a median change score of 0.78, but a few families had scores of three or higher. What emerges is a picture of overall stability, punctuated by occasional, dramatic changes in home environment. In reviewing the distribution of scores, we focused on the 11% of families who showed the greatest changes on HOME scores (>2 standard deviations). We obtained the descriptive ®eld notes made by our interviewers (as part of each interview record) and found that anecdotal records validated the HOME changes. It appeared that these seven families had experienced signi®cant life changes. These included three stressful divorces, a child (other than the target child) developing a serious drug habit which resulted in arrest and costly rehabilitation, and two cases where the family had decided to place the child out of the home. In one case, the change may have been due to dramatic increases in adaptive behavior. The highest functioning individual in our sample had, in the 9-year period, become signi®cantly more capable of self-care, and, in general, had matured from an adolescent to an adult. In further examination of the family environment scale, we computed internal consistency reliability coef®cients based on time 1 for each subscale; these are shown in second column of Table 4. All of the relationship dimension and system maintenance dimension subscales are close to, albeit lower than, the reliabilities

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Table 4 FES and HQRS internal consistency reliabilities and 1982±1990 mean change scores in subcale scores FES subscales

rxx

Relationship dimension cohesion con¯ict expressiveness

0.72 0.68 0.68

2.8 1.4 0.5

Personal growth dimension achievement orientation active±recreational independence intellectual±cultural moral±religious

0.46 0.70 0.38 0.54 0.75

3.6 3.2 3.6 2.4 0.8

System maintenance dimension control organization

0.59 0.67

2.5 0.2

HQRS subscales harmony and quality concordance in care awareness of disability quality of residential environment

0.82 0.66 0.70 0.78

0.74 0.80 0.28 0.11

Mean change score

reported by Moos and Moos (1986, 1994) for their standardization sample. In contrast, several of the personal growth dimension subscales show reliabilities dramatically lower than the standardization samples and clearly in the unacceptable range. Mean differences in standard scores for the FES over the 9 years are shown in the third column of Table 4. It can be seen that the magnitude of mean change in FES standard scores over 9 years ranged from 0.2 for organization to 3.6 for independence and achievement orientation. In standard deviation units, the mean change represented approximately one-third or less of a standard deviation over a 9-year period, indicating a moderate degree of stability. For eight of the nine FES scores, the median change was zero. For all four HQRS scores, with substantially greater variance and range, the median change score was zero or one point. For both change scores and correlations, those measures with the lowest reliability, i.e., independence, intellectual±cultural orientation and achievement orientation, tended to show the most instability. Test±retest results over the 2-year period from 1988 to 1990 showed a virtually identical pattern of results as the 9-year retest shown in Table 4, and are thus not reproduced here. Over the 2-year period, as would be expected, stability was even greater, with the magnitude of mean change in scores ranging from 0.07 (for independence) to 3.4 (con¯ict) on a 50-point scale. We addressed the question of relative magnitude of this change. Fig. 1 shows the mean change in standard deviation units over a 2- and 9-year period. Two

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Fig. 1. Absolute values of mean changes in subscales over 9- and 2-year periods in standard deviation units. 29

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points are evident from this ®gure. First, relative to variability within the population, individual change over a 9-year period was small, generally less than one-®fth of one standard deviation. The greatest changes were seen in independence ( 0.34), achievement orientation ( 0.31), active±recreational ( 0.32) and cohesion (0.28). Second, while one might expect more change over a 9-year period than over a 2-year time span, the absolute magnitude of change is not great. Even over 9 years, there were only six families that showed substantial (two or more standard deviation) changes on more than 2 of the 10 subscales. Examining the demographics for these six families showed changes in marital and/or employment status for three of the six. One married during the period, and obtained employment, two others went from being full-time homemakers to fulltime employees. 4. Discussion Overall, these results showed moderately little change in families of children with retardation, particularly over a 2-year time period. Even over an extended, 9-year period, there were no signi®cant changes in the family environment scale means. Only one of the four home quality rating scale means changed. Changes were examined in standard scores, raw scores and standard deviation units. Stability in the family environment can re¯ect either an inability to adapt to changing circumstances or little change to which adaptation is required. Analyses of these data make clear that, as these families progressed through the family life cycle, from parents of young children to parents of early adolescents, they remained remarkably similar. It is possible that developmental level is as important as chronological age in determining family adjustment and response to disability. This is a hypothesis that begs further investigation. One might ask, what explains the relative lack of change here: the children, the parents, or the family environment? Change in families may constitute a functional family response if it represents accommodation to demands of daily life with a child with disabilities (Keogh, Bernheimer, Gallimore, & Weisner, 1998; Gallimore, Coots, Weisner, Garnier, & Guthrie, 1996). While representing an important conceptualization of family environment, their previous work did not pertain to families with very low-functioning individuals examined over time, into early adolescence, as reported here. In other words, lack of change (as found in this sample with these instruments) may still be a functional family response. In addition, as noted by Roosa and Beals (1990), there may be a complex interaction between the environment (which, includes the child with severe retardation), measurement sensitivity, and the level of variables being measured. For example, the wording and response choices available for FES and HOME items (e.g., true/ false) do not allow much room to record change. While these families as a group did not change dramatically, individual families did. This may have been brought about by changes in the families' external

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circumstances (employment, marital status changes, legal dif®culties) rather than any change within the child. Stability in these families, then, seems more likely a matter of slow developmental changes in the child with severe retardation rather than due to an inherent rigidity. When families were faced with major changes in their lives, as recorded in ®eld notes, they took action and their environments (as recorded in the measures we used) did change in response, for better or worse. From a practical standpoint, the question of whether we gained from assessing these families at three times, rather than two, is probably, ``No''. There was some improvement in reliability of the 2-year retest over the 9-year retest, but it was not signi®cant, either in the statistical or the practical sense. One might ask how often it may be necessary to administer family environment measures. We found a fair degree of stability, given the size of this sample, followed three times over a 9-year period. The gathering of longitudinal data is expensive and timeconsuming. These data suggest that the administration of some environmental measures every year or at each time point may be unnecessary in the absence of major changes in marital or employment status (changes which could be screened for in annual mail or telephone contacts). Two issues emerged from these data which, while not central to our basic research question, warrant further consideration. First, although the focus of our research has not been on the psychometric properties of family measures, the differential reliability within this sample of the most commonly used family environment scale begs further exploration. Measures which showed a greater degree of ¯uctuation tended to be either subscales that had relatively low internal reliability (and thus included a large degree of measurement error) or those that were designed speci®cally to measure families of individuals with disabilities. We may actually have found as much stability as is statistically possible in this study, given the low reliability of some of the subscales. For example, correcting for attenuation due to imperfect reliability would have increased the correlation on the con¯ict subscale at times 2 and 3 from 0.60 to 0.88 (see Nunnally & Bernstein, 1994, pp. 240±241 for a discussion of correction for attenuation). It should also be noted that data on the reliability of the family environment scale has been mixed in samples comprised of families of children without disabilities (see Anderson, 1984). Roosa and Beals (1990) reported reliability coef®cients for ®ve subscales (cohesion, con¯ict, control, expression and organization) ranging from 0.46 to 0.71. Moos and Moos (1994) reported average internal consistency reliabilities for the same ®ve scales ranging from 0.67 to 0.78. For all 10 subscales, Moos and Moos (1994) reported test±retest reliabilities over a 9-year period for families of children without disabilities, ranging from 0.38 (independence) to 0.77 (moral±religious). Both the test±retest reliabilities and internal consistency reliability coef®cients obtained are higher than those found here for families of children with disabilities. Moos (1990) also noted that the independence subscale was sometimes found to have low reliability, a ®nding replicated in the current study. Second, it is possible that an additional explanation of the lack of change observed in this sample lies in the insensitivity of instrumentation available to the

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®eld. Even though these children are low functioning, most do advance developmentally, albeit slowly. Data on the reciprocal effects of parents and children are widespread and suggestive, indicating that parents will be affected by their child's growth (or lack of it), and that parents will likewise in¯uence their child's growth (Greenbaum & Auerbach, 1998; Sameroff & Chandler, 1975). Thus, it appears that changes in the family environment itself may be more dif®cult to document. In addition, the measures used in this study were not originally intended to measure the numerous, small changes that most families go through, even over a period of a year or two. While the ®eld would bene®t from the development of more sensitive measures of such family change, that was not the focus of this study. The inability to fully examine the HOME subscales over time was a second limitation of this study. Although we found no difference on the Z-scores of the total HOME score, the similarities in total scores may have failed to detect changes in speci®c aspects of the environment, as captured by some of the subscales. New measures designed speci®cally for families of disability have been developed by Bradley et al. (1992) and Wallander and Marullo (1997). These are promising developments. As Roosa and Beals (1990) have noted, ``science progresses as the quality of its measures improve''. Comparative studies with these new measures may strengthen and re®ne our knowledge of families of children with disabilities. The voluntary nature of the sample is also a limitation of this study, albeit one that is inherent in nearly all published research on families. It is likely, particularly given the MANOVA results, that those families who elected to maintain involvement in the study over 9 years were more stable than those who dropped out or never responded to our requests for involvement in the ®rst place. Indeed, the relatively low level of con¯ict reported on the FES is not surprisingÐfamilies with a high degree of con¯ictual interactions would be less likely to volunteer for repeated home observations. Finally, measures such as the FES were not designed to take cultural context into account, despite their use with Latino (Blacher et al., 1997) and Asian families (Nihira, Tomiyasu, & Oshio, 1987; Phillips et al., 1998). Although our sample is comprised predominantly of white, middle class families, it seems plausible that lower reliabilities may be found with culturally diverse families who have a member with a disability. Research on these families is de®nitely warranted to extend (or limit) the generalizability of the results reported here. References Anderson, S. A. (1984). The family environment scales (FES): A review and critique. American Journal of Family Therapy, 12, 59±62. Berkson, G., & Landesman-Dwyer, S. (1977). Behavioral research on severe and profound mental retardation. American Journal of Mental De®ciency, 81, 428±454. Blacher, J. (1984). Severely handicapped young children and their families: Research in review. Orlando: Academic Press.

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