Journal of Early Intervention

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Journal of Early Intervention http://jei.sagepub.com/

Clinical Child Assessment in a Family Context: A Four-Group Typology of Family Experiences with Young Children with Developmental Delays LUCINDA P. BERNHEIMER, RONALD GALLIMORE and SANDRA Z. KAUFMAN Journal of Early Intervention 1993 17: 253 DOI: 10.1177/105381519301700304 The online version of this article can be found at: http://jei.sagepub.com/content/17/3/253 Published by: http://www.sagepublications.com

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Division for Early Childhood of the Council for Exceptional Children

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Journal of Early Intervention, 1993 Vol. 17, No. 3, 253-269 Copyright 1993 by the Council for Exceptional Children

Clinical Child Assessment in a Family Context: A Four-Group Typology of Family Experiences with Young Children with Developmental Delays LUCINDA P. BERNHEIMER RONALD GALLIMORE SANDRA Z. KAUFMAN University of California Part H of The Individuals with Disabilities Education Act of 1991 (IDEA), formerly the Education for the Handicapped Act, urges professionals to involve families as true collaborators in the assessment process. The challenge contains implications for child as well as family assessment In this study, semi-structured interviews were conducted with 102 families of preschool-age children with developmental delays to supplement traditional child assessment data. Four types, or subgroups emerged, reflecting variations in parents' views of the impact of their child on the family's daily routine. These subgroups, in turn, were related to different domains of family adaptation or accommodation. Child impact was not related to developmental test scores, and there was no relationship between total family income or socioeconomic status and accommodation. Utility of the typology for early interventionists is discussed. With passage of Public Law 99-457 (P.L. 99457) and the development of guidelines for the Individualized Family Service Plan (IFSP), a new subspecialty has arisen in the field of developmental disabilities: family assessment. Over the past 5 years, much has been written about the inadequacy of existing models for family assessment (Bailey, Isbell, O'Donnell, & Helm, 1986; Bailey & Simeonsson, 1988; Bernheimer, Gallimore, & Weisner, 1990; Burden & Thomas, 1986; Deal, Dunst, &Trivette, 1989; Fewell, 1986; Karnes & Teska, 1980; Turnbull & Winton, 1984). Clinicians and researchers alike have struggled to define the boundaries of family assessment, in order that early intervention services will be accountable to families without being intrusive (Bernheimer et al., 1990;

Dunst, 1988; McGonigel & Garland, 1988). For example, Bailey (1991) defined family assessment as the "ongoing and interactive process by which professionals gather information in order to determine family priorities for goals and services . . . The primary goal is for professionals to understand what families want for themselves and their children and what they need from professionals in order to achieve those aspirations" (p. 27). Identification of family priorities for goals and services is an unfamiliar activity for many professionals in early intervention. Wachs (1988) has identified typical interviews as focusing on the types of experiences provided by parents to their child; on the socio-cognitive contexts in which these experiences occur (typically

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parent-child interactions); and on parent attitudes towards the child. Implicit in this schema is the notion that there are positive and negative experiences, interactions, and attitudes in terms of child development. Parents may also be used as informants about their child, although here there is often a nagging professional concern with the reliability and veracity of the reports, and considerable time and effort has been spent training parents to be more accurate observers (Schafer, Bell, & Spalding, 1987; Sheehan, 1988). Although accurate parent observations clearly are important to professionals conducting many traditional child assessments, there is increasing interest in alternative modes of assessment of young children with disabilities (Ciccheti & Wagner, 1990; Fewell, 1991; McCune, Kalmanson, Fleck, Glazewski, & Sillari, 1990). Bailey et al. (1986) have cautioned that in addition to standardized testing of cognitive and social development, clinicians would do well to consider child characteristics that directly influence family functioning. Exam: pies of such characteristics include the following: temperament, behavior, and readability (Huntington, 1988); caretaking demands (Bailey et al., 1986; Beckman, 1983); feeding and sleeping behaviors (Beckman-Bell, 1981); and self-help skills and hassle level (Gallimore, Weisner, Bernheimer, Guthrie, & Nihira, in press; Bernheimer et al., 1990). Within this context, the goal becomes less the accuracy of parent reports, essentially a reliability issue, and more that which is real to the family (Seligman & Darling, 1989). Said differently, professionals must attend to the validity issue: the way in which families experience children with developmental delays. Families' Experience of Children with Developmental Delays Asking families to detail their experiences has been the focus of our ongoing study of families' adapting to young children with develop-

mental delays (Bernheimer & Keogh, 1982; Bernheimer et al., 1990; Gallimore et al., in press; Gallimore, Weisner, Kaufman, & Bernheimer, 1989; Weisner, Beizer, & Stolze, 1991). We have listened for many hours to parents' accounts of what matters or what is real for them regarding the child. Over the past 10 years, a prevailing story has emerged: all parents face the task of creating and sustaining a daily routine that serves the collective and individual needs and aspirations of family members. What is most real about a child with developmental delays, is the impact of those delays on sustaining the daily routine. The idea that the daily routine is a powerful influence on children's development is a longstanding one in the social sciences (Bronfenbrenner, 1979). In this sense, families' emphasis on the daily routine parallels the focus of many theorists and researchers on the proximal home environment. Both researchers and families recognize that the activities of the everyday routine create opportunities for development-sensitive interactions. Except for extremely dysfunctional cases, daily routines of most families provide some opportunities to learn and develop through modeling, joint production, apprenticeship, and other forms of mediated social learning that are embedded in goal-directed interactions (Rogoff, 1990; Tharp& Gallimore, 1988; Weisner, 1984; Whiting, 1980; Whiting & Edwards, 1988). Through participation in everyday activities that require cognitive and communicative functions, children are drawn into the use of these functions in ways that assist their development (Rogoff, 1990; Tharp & Gallimore, 1988; Weisner, 1984; Wertsch, 1991). As an adaptational problem, the daily routine gets approached in different ways in our study families. Approaches are conditional on the diverse factors that families must accommodate, including social and economic constraints (some are headed by single mothers, some are poor, others prosperous two-career

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households) (Gallimore et al., in press). Approaches are also related to family goals and values, which define what kind of routine is desired (career orientation; strong familistic values; acceleration of child's development). However, no matter their circumstances or values, all families have in common the problem of creating a daily routine that balances what they want against what they must sustain. As we listened to our informants, it became clear that the creation and sustaining of the daily routine is the context in which a child with delays is experienced by the family, none of our informants disaggregated their accounts into discrete units; for them the child's difficulties and their impact are a whole thing, which together define and describe the child. The way a family experiences a child with delays is not simply a linear combination of the child's limitations, diagnoses, and prognoses, and measures of the daily routine. The family's experience of the child is a composite of the nature of the child's delays, and their impact on the daily routine. In this paper, we report the use of a qualitative approach to distill the case files and interview transcripts into a typology that could be reliably coded, which reflected the families' experiences of the child (Levine, Gallimore, Weisner, & Turner, 1980), and which could offer a family-based adjunct to conventional child assessments. The results of this qualitative analysis had two major aims: (a) to describe a typology of family experiences that is a concatenation of child problems and daily routine impact, and (b) to examine the relationship of the typology to quantitative data including developmental test scores.

METHOD Subjects Each of the families in our cohort has a child who has been described as developmentally

delayed. The term is of relatively recent vintage and is lacking definitional specificity; it is essentially a nonspecific clinical term with less ominous overtones for the future than mental retardation. While developmental delay is sometimes used interchangeably with developmental disabilities, delay implies the possibility of a catchup, which to parents is a key hope, if not expectation. Bemheimer and Keogh (1986) have suggested that nonspecific delays should be viewed as another subset of the broader category developmental disabilities, which includes recognized subsets such as cerebral palsy, autism. A recent policy statement from the Division for Early Childhood, Council for Exceptional Children (McLean, Smith, McCormick, Schakel, & McEvoy, 1991) supports this recommendation. Little is known about children with nonspecific delays beyond the fact that they may have specific problems in cognition, language, motor or affective areas, or may exhibit generalized delay across two or more areas. They are of interest because so little is known about their development and prognosis, despite the fact that they comprise a significant proportion of children with special needs. Since they maintain a lower profile prior to school entry than children with cerebral palsy or Down syndrome, for example, there are many practical reasons to enlarge knowledge of their early development (Bemheimer & Keogh, 1986). Although some children with early delays do catch up, the majority continue to lag behind age norms on standardized tests of development and cognition (Bemheimer & Keogh, 1988). One hundred and three children in 102 Anglo families were recruited into our cohort. In all cases, etiology and prognosis of the delay were unknown or uncertain. Children were excluded from the sample if they were known to have chromosomal abnormalities and/or genetic conditions associated with mental retardation, or if the delay was associated with either

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known prenatal drug or alcohol abuse, or with postnatal neglect or abuse. At entry, the mean CA was 41.8 months (SD = 6.2; range = 32 to 55). The mean Gesell DQ was 72.32 (SD = 15.97; range 38 to 117). All but 18 of the children had DQs below 90, and all 103 had significant delays in one or more areas (motor, language, behavior, or cognition), in spite of some relatively high DQs. Boys comprised 58.3% of the children in the sample. The 102 families were predominantly married couples in their thirties, in middle-class circumstances; however, there was a wide range of variation within the group. Families' total incomes reflected the wide range of socioeconomic status represented in the sample; 10.2% of families had incomes under $10,000; another 8.2% had incomes between $10,000 and $20,000; 19.4% were between $20,000 and $30,000; 34.6% were between $30,000 and $50,000; 16.3% between $50,000 and $75,000; and 11.2% over $75,000 a year in total family income. Case Study Procedure All 102 families were visited by an experienced interviewer who conducted a two-to threehour semi-structured interview with principal caretakers (with few exceptions, mothers), the interview provided an opportunity for each family to tell its story (Bruner, 1989). Interviewers were provided specific questions and topics to be covered and were trained to use probes to insure that equivalent material was obtained for all families. In addition to the interview materials, narrative fieldnotes were compiled for all family contacts. Further details on the interview procedure are presented elsewhere (Gallimore et al., in press; Gallimore et al., 1989). Formation of a Child-Impact Typology Development of a typology that reflected what is real to parents about their child evolved over the first 3 years of our longitudinal study. The typology began as an informal shorthand

used by the fieldworkers who had intimate knowledge of the families. After the potential of the emergent typology became apparent, a fieldworker (Sandra Z. Kaufman) was asked to systematically lead development of a more formal typology. Combining interview materials with fieldworker observation and inference, several tentative typologies were constructed and extensively discussed. An important part of the process involved extended discussion of case materials by the fieldworkers who had multiple, continuing contact with the families. As a result of these discussions, a twodimensional typology emerged. One dimension divided the families in terms of their perception of the nature or status of child problem. A second dimension described the parents' perception of the impact of the child on the family's daily routine. Two types of child status were identified, which had the most impact: high medical, (meaning either medical fragility or physical impairment) and high behavior (meaning a significant amount of troublesome behavior). By contrast, the term easy, high functioning was used to describe children who were mildly delayed, and who made relatively little impact on the daily routine. Formalizing this shorthand, each fieldworker sorted the children into 3 impact categories: high medical, high behavior, and easy, high functioning. A fourth group of children remained: children who were moderately to severely delayed, who displayed at most, minor medical or behavior problems, and who appeared to have little impact on their family's daily routine. The result was a typology of 4 groups, which were renamed 1. 2. 3. 4.

High Medical Impact High Behavior Impact Mild Delay—Low Impact Delayed—Low Impact

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For convenience, hereafter these groups are referred to as Medical, Behavior, Mild Delay, and Delayed, respectively. Reliability After the typology was constructed and definitions of each type were written, we determined reliability of coding by comparing fieldworker and independent, blind coder assignments on 20 cases. The Kappa coefficient obtained for reliability was .86, suggesting it is possible to classify the families correctly into one of the four categories without direct contact with the case, and using only case file information. We made no attempt to determine whether or not independent, blind case analysis would have produced the same 4-group typology from the same case materials. This was not appropriate, given the extensive case knowledge of the fieldworkers, which would have been impossible to duplicate by independent raters. It would be difficult to compare categories constructed by independent raters with the fieldworker-constructed 4-group typology given differential case knowledge. Measures of Child Status and Family Socioeconomic Status Child status measures consisted of the following: 1. Qesell Developmental Schedules and the Communication and Daily Living Subscales of the Vineland Adaptive Behavior Scales; 2. Child's health and developmental history: (a) age at which parent first noticed delay, (b) age of first diagnosis, and (c) age of child's entry into first intervention program; and 3. Problems parents identified in response to a card listing the following areas: physical, retardation, medical, learning, behavior, and speech.

Two measures of family socioeconomic status (SES) were also obtained: total family income, and the Hollingshead Four Factor Index of Social Status (Hollingshead, 1975). Measures of Accommodation Accommodation, or the activities that parents engaged in to maintain their daily routine, was coded from transcripts of the semi-structured interviews conducted with the families. In earlier work, we proposed the domains of accommodation that are salient for EuroAmerican families with a developmental^ delayed child (Gallimore et al., in press; Gallimore et al., 1989). Brief definitions and examples of accommodations in each of 10 domains may be found in Table 1. For each domain in Table 1, we coded each of the 102 families for amount of accommodation activity related to the child with delays. A coding scale of zero to eight was used, as follows: (low accommodation) 0,1,2 = little or no evidence of accommodation activity related to the child with delays; (moderate accommodation) 3, 4, 5 = some evidence of accommodation related to the child with delays; not a dominant theme; (high accommodation) 6, 7, 8 = dominant theme of accommodation related to the child with delays To be coded as an accommodation activity, there had to be evidence that the activity was at least partially related to the child with delays. For example, if the father changed jobs, this act received an accommodation coding under Subsistence only if there was direct evidence that this was at least partly related to the child's problems (e.g., father would earn more money to help with costs of therapy, or had a shorter commute to be more available for domestic chores). Coders were also

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TABLE 1

Ten Accommodation Variables and Examples of Accommodations Made by Euro-American Families to Children with Developmental Delays 1. Family Subsistence and Financial Base a. Mo. stayed home because child "needed" her; later went back to work to afford speech therapy b. Fa. turned down contract for third year working abroad in part to get child services in Los Angeles 2. Accessibility of Health and Educational Services a. Mo. drives child to intervention program, waits at grandmother's house b. Parents each take time from work to make trips to doctor; it takes split second timing to transfer child 3. Home and Neighborhood Safety and Convenience a. Plan to move to larger house to accommodate wheelchair; father built special chairs & table b. Home is childproofed: nothing breakable in child's room 4. Domestic Task and Chore Workload for Family a. Mo. puts less priority on house and housework and higher priority on helping child b. Mo. gets up at 4 a. m. to do laundry, housework, has no paid help 5. Childcare Tasks a. Child's older sisters voluntarily assist—mo. does not mobilize help outside family circle b. Complex job assignments for child care given to fa., mo., grandmother, etc. 6. Child Playgroups and Peers a. Child is allowed to play only inside with sibling's friend, not outside with neighbor children b. Mo. started playgroup for child in neighborhood 7. Marital Role Relationships a. Fa. left family partially because he could not accept delayed child b. Joint parent decisions made (e.g., parents sleep separately for 6 months due to child's sleeping problems) 8. Social Support a. Extensive support networks: relatives, parents, church, boy scouts b. Mo. lives rent free with grandparents; Grandfather helps teach child 9. Father's Role a. Fa. takes over on weekends, as he commutes long distance and has long working hours during week b. Fa. gave up drinking, goes to church, is helping rather than adding to mother's workload 10. Sources of Parental Information and Goals a. Fa's former girlfriend is speech therapist; she led family to transfer child to that clinic b. Mo. gets advice from grandmother (RN), grandfather (special educator) and her own former special education teacher

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instructed to code accordingly any "changes, or steps not taken" due to the child's delays. If the father remained in a less desirable job in order to retain highly desirable medical insurance for the child with delays, this would also be coded as an accommodation under the Subsistence domain. Accommodation activity, as we measured it, was neither positive nor negative in its presumed effects on the family or child. For example, the fact that a father stayed with a job in order to retain medical insurance, even though he would have left the job had it not been for the child's problems, was not scored as positive or negative. Accommodation was scored for the amount and intensity of activity that the family reported as a response to the child with delays. It may or may not have been a positive action for the family; that had to be determined from independent evidence. Reliability was established by independent, blind rating of 12.5% of the cases (n = 13). Five cases were randomly selected for reliability assessment at the beginning of the coding process; another eight were selected later in the process to check for maintenance of reliable coding. Each case was coded by at least two raters, who were blind to the research questions, and had no knowledge of the specific purposes of their task. Reliability of ratings for the 10 accommodation activity variables ranged from 71 to 91%. The overall total was 82% simple rater agreement, within one adjacent scale point.

RESULTS Description of the Four Impact Groups Children within each of the four groups shared a number of common characteristics. In the Medical group (n = 22) all infants exhibited serious signs of physical impairment or medical problems from birth, or within a few months of birth. During the first three years, the child was under regular medical care or

receiving physical therapy. The parents' primary focus was on these medical or physical conditions. Included among them were hydrocephaly, for which the infants received shunts; cerebral palsy; and perinatal conditions which required months of life-sustaining hospital care. By entry, some of the children were doing remarkably well; others were still struggling. The children in the Behavior group (n = 34) appeared to be normal at birth. During the first three years, medical problems may have appeared but were relatively minor. It was the developmental delay that concerned the parents and resulted in the children being entered in intervention programs. By the time the child reached age 3, the parents were more concerned about the child's behavior than about the delay. Parents reported, and often our fieldworkers observed, behaviors such as rejection of affection, screaming, tantrumming, running away, and consumption of nonedible material. In those few cases in which the offensive behavior was not observed but about which the parents were clearly upset, we accepted the parents' social construction that the child was difficult. Children in the Mild Delay group (n = 25) were either bom at risk, which usually meant two or more months prematurely, or were mildly delayed in development, sometimes only in speech. Medical problems, when encountered, were minor, and none of the children developed serious behavior problems. The parents focused on the delay, seeking diagnoses and professional help in overcoming it. The children in the Delayed group (n = 22) are defined more by what they were not than what they were. They were not medically fragile nor physically impaired, nor behaviorally difficult. Therefore, their impact on the family daily routine was low, but they were not high functioning children. For the most part they were far more cognitively delayed than the children in the other three groups.

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Quantitative Differences Among Impact Groups Figure 1 compares the families of the 4 groups in terms of parent-reported child problems. As expected, significantly fewer parents of children in the Mild Delay group reported problems, compared to the other 3 groups, in the following areas: Mental retardation, \ 2 (3) = 19.3, p