Stresses as perceived by children with physical disabilities and their mothers.

Stresses as Perceived by Children with Physical Disabilities and their Mothers

One task of professionals working with children who have physical disabilities is to assist mothers in helping their children manage the physical, social, academic, and emotional stresses of everyday life. Central requirements for that task are knowledge of the kind, frequency, and degree of stresses that children with physical disabilities repprt they experience; mothers' identifications of the stresses they believe the children experience; and information as to the congruence between the children's reports and their mothers' beliefs.

Although Meyerson (1955), Wright (1983), and Kerr (1986) have made theoretical statements about the conditions under which people with physical disabilities may experience stress, we have found little systematic documentation or empirical data that identify the stresses preceived by children who have physical limitations, inquire about the beliefs of their mothers about what stresses their children, or show that the two sets of perceptions are related. The present study represents a beginning effort to address those questions.

Method

Participants

Letters inviting mothers and children to participate in this project were sent to all families (N=40) who had a child enrolled in a program for students with hearing impairments or orthopedic handicaps of two local school districts in Arizona. Of the 23 dyads who volunteerd, 3 dyads were eliminated because the interviewer could not establish rapport with 2 children, and was unable to communicate with 1 child. The remaining 20 mothers and children participated in the study. Because they volunteered so readily, we believe they were serious, conscientious respondents, likely to be observant, sensitive, and accurate reporters of their experiences and perceptions.

The children, 8 t 15 years old, all tested at average or above average levels of intelligence in their school's psychological evaluations. Eight had cerebral palsy, three had spina bifida, three had other forms of paralysis, five had moderate or profound hearing impairment, and one had both cerebral palsy and a hearing impairment. Eleven children were nonambulatory, and nine had slow or labored speech associated with cerebral plasy or hearing loss. Special pains were taken to ensure that child participants understood the task and that the interviewer understood their responses. Of the primary caregivers, seventeen were natural mothers, two were grandmothers, and one a stepmother.

Procedure

Interviews. Each mother and each child of a dyad was interviewed separately but simultaneously in different rooms of their home by two interviewers. One interviewer talked with all the mothers; another interviewer, a Ph.D. candidate in Educational Psychology, interviewed all the children. Both had previous interviewing experience; and the latter, in particular, had extensive professional experience in communicating with children who had speech impairments. They followed a planned and practiced procedure as follows:

After rapport had been established, each child was asked to name verbally "ten things that upset you, concern you, or that you fear the most." The interviewer wrote each named stress above a 7-point Likert-type scale. Children who could not think of 10 stresses were urged to name as may as they could. After describing up to 10 stresses, the child was shown the 7-point scale for each stress the child had named, and asked to tell the interviewer how much stress each item caused. Point 1 meant upsets me very little; Point 4 signified upsets me sometimes; and Point 7 indicated very, very upsetting. Each mother, after initial informal conversation, was asked to name to 1 0 things she believed were sources of upset, concern, or fear to her child. After enumerating the stresses to the interviewer who wrote each one above a 7-point scale, the mother rated how much stress she though the child experienced from each problem she listed.

Data analyses. The 340 examples of stress generated by mothers and children were coded by the two interviewers and a colleague into piles of similar responses. There were no preconceived categories. Instead, the responses were examined one by one in a qualitative analysis procedure (Erickson, 1986; Miles & Huberman, 1984), and each item was placed in a pile of items that the three coders agreed conveyed the same idea. If there was any disagreement among the three coders about whether a statement represented the same idea as other items in a pile, a new stack was later labeled "Things others do to the subject" included only those statements in which the respondent said that a particular person or group did something specific to the child, (e.g. brother shakes wheelchair). Statemetns that mentioned something others do, but not specifically to the child--such as "parents arguing" or "father's drinking"--were placed in a different pile that was later named "Things others do in general." Only after the piles of responses had been generated through this inductive process were the 12 categories that emerged given names and written descriptions. (1)

Next, as a check on consistency of sorting, these written descriptions of each category were used as guidelines by two independent raters to assign the 340 responses to the 12 categories. The independent raters were not familiar with the participants in the study, the children's disabilities, or the aims of the study; and they did not know whether a mother or child had made a particular response. Interrater reliabilities were computed. The two raters, respectively, matched the responses to the same category as the investigators 85% and 81% of the time. Scott's [pie], which was used to measure reliability between the two independent coders, was moderately high (.61).

The degree to which each mother identified the kinds of events her child reported to be stressful was asessed by computing an rg coefficient of agreement (Scott & Wertheimer, 1962) between the responses of each mother and those of her child. The resulting correlation (rg), or "dyad score," could range from -1.0 (if the mother believed the child was subject to a whole set of stresses not reported by her child, and at the same time, failed to note any of the stresses that the child did report) to + 1.0 (if a mother named only the stresses that her child reported and none that thechild did not report).

Only four mother/child dyads reported even one virtually identical stress (e.G., Mother: He's afraid of spiders. Child: I'm afraid of bugs). If we had required that both name exactly the same stress before recording an "agreement," that criterion would have made the mothers apear to have no understadning whatsoever of the things that bothered their children. Instead, we adopted a more realistic standard for scoring the dyad agreements/disagreements that were used in computing the correlations. An agreement was recorded if both mother and child mentioned a stress in the same category or if neither had a response in a particular category. For example, if mother said that the child worried about history lessons and the child said he had trouble with his homework, both statements were in the category "school work problems," and a dyad "agreement" was recorded. Disagreements were scored when one of the dyad had no responses in a category and the other did. It should be noted that this method for scoring maximized the degree of agreement between mother and child.

THe overall amount of stress a mother believed her child experienced was computed by averaging the stres ratngs (1-7) she assigned to each problem she thought the child experienced. Similarly, the child's perceived stress score was an average of the stress ratings for each item the child had named. A correlated t test was computed to determine whether mothers and children, as groups, differed in their perceptions of the child's degree of stress; and a pearson product-moment correlation was computed to determine whether mothers' and chidren's stress scores were related. Finally, to determine whether differential amounts of stress were associated with different kinds of problems, the twelve categories were collapsed into five as follows: Social (Categories 1, 3, 11, 12), Physical (Categoreis 5, 7, 8, 9, 10), School (Category 2), Uncertain/uncontrollable events (Category 4) and Miscellaneous (Category 6). AN ANOVA was used to test for differences in the amount of stress associated with the items in these five categories.

Results

Kinds and Frequency of Stresses

Table 1 shopws the number of mothers' and children's responses that fell into each of 12 categories. The first category, which characterized several undesirable ways others treat the child, included 40% of the children's and 20% of the mothers' reponses.

For both mothers and children, approximately half of the streses in Category 1 were about testing (both verbal and physical) or rejection by other children. Conflicts about help--whether or not it shold be given, or whether it is given approximately--accounted for approximately one-third of the responses in Category 1 for both mothers and children.

Overall, the categories representing social variables (1, 3, 11, 12 in Table 1) contained 53% of the children's and 45% of the mothers' responses.

Being differnt from other children, or not being able to do what other children do (Category 11), was mentioned 20 times by mothers and only one time by one child. Similary, the belief that the disability itself produced stress for the child (Category 8) was advanced 19 times by mothers but just 4 times by children.

Figure 1 shows the number of mothers and children who named at least one stress in the various categories. The data, viewed in this way, again show that Category 1, things other people do to the child, was the one most frequently used. Tjere were 14 mothers (70%) and 15 children (75%) who listed at least one stress related to ways others treat the child.

Figure 1 also shows that more than twice azs many mothers as children reported that the youngsters were stressed by things others do in general (e.g., kids taking drugs), fears caused by physical limitation (e.G., falling), the physical limitation itself (e.G. deformed feet), communication problems (e.G., others can't understand child's speech), being different from other children (e.G. just the fact of "being different" or not able to play sports like the other kids), and seeking approval (e.G., feeling like a burden, hurt by criticism, trying to please).

Degree of Agreement on Identification of Stresses

for Each Dyad

Table 2 shows that the indexes of agreement (rghs) for each mother/child dyad ranged from -.33 to .67.

The lowest correlation (-.33) was obtained for a dyad in which the child reported stresses mainly from the way other children and adults treated him (Category 1) and from concerns about school (Category 2). His mother was more prone to believe his stresses were related to the physical disabiity itself, or his malfunctioning wheelchair.

The highest correlation (.67) occurred in a dyad in which the mother reported stress in each of the categories her child mentioned, and added responses in two categories that the child had not used. More typically, (correlations ranging from .00 to .50) mothers and children reported some stresses in the same categories, and each perceived additional stresses that were not reported by the other.

Mothers' and Children's Perceptions of Amount of

Stress Experienced

A correlated t test (1, 38) = -1.55, p = .13, indicated that the mean ratings of amount of stress assigned by 20 mothers (X=4.89) and their children (X=4.42) did not differ significantly. On the average, both mothers and children reported moderate amounts of stress. Individual scores ranged from 3.57 (relatively low stress) to 6.0 (high stress) for mothers and from 2.5 to 7 for children.

The correlation (r = 0.2, p = .93) between mothers' and childrens' stress scores was low and nonsignificant. Eleven mothers estimated their children's stress levels to be within one point of what the child reported. Seven overestimated their children's levels of stress, and two believed their children to be under less stress than the youngsters reported.

On the average, no particular type of problem was considered more stressful than others in the eyes of mothers or children. The result of a one-way ANOVA performed on mothers' ratings of amounts of stress associated with social relationships, physical limitations, academic worries, fear of uncertain or uncontrollable events, and miscellaneous items was not statistically significant (F 4,187=1.432, p=.2251). A similar one-way ANOVA computed for children's reports of amounts of stress in the five collapsed categories also showed no significant differences in the degree of stress associated with different kinds of problems (F 4,143=.460, p=.7634). For both groups, ratings for the different kinds of problems ranged from 1 to 7 on the Likert-type scale. Furthermore, a single participant was apt to rate one social stress, for example, as "upsets me very little" and another social stress as "very, very upsetting." Overall, Points 6 and 7 on the scale (high stress end of the continuum) were used to described 39% of the stresses identified by mothers and 43% of those named by children.

Discussion and Implications for Research

and Practice

Kind and Frequency of Stresses

For more than 40 years field theorists in rehabilitation psychology (Barker, Wright, Meyerson & Gonick, 1955; Meyerson, 1948; 1955; Wright, 1983) have emphasized that the major problems associated with physical disability are social rather than physical. Their assertions are supported by the finding that 39 of 40 participants in this study complained about social stresses encountered by the child who has a hearing impairment, an orthopedic handicap, and/or a speech impairment; and that, despite the fact that all the children in this study had rather severe physical problems, slightly more than half of the 340 stresses named were directly related to social relationships.

Being teased and rejected by others, and issues related to giving and receiving help predominated. Research on how to decrease teasing behavior and facilitate acceptance by other children is badly needed. With respect to differences in perception of donors and recipients of help, theoretical statements have been made (Ladieu, Hannfman, & Dembo, 1947; Kerr, 1984, Kerr & Meyerson, 1987; Wright, 1983), but only a small amount systematic data has been gathered about adults with disabilities (Fehr, Dybsky, Wacker, Kerr, & Kerr, 1979; Neilsen-Lugue & Flora, 1983).

If additional studies of the stresses encountered by children with physical disabilities permit greater generalization of these findings, it would be reasonable to give high priority to research and development of educational and parent training programs that facilitate improved interpersonal relationships among children with physical disabilities and significant others.

Differences Between Mothers' and Children's

Perceptions

With the exception of one response from one child, the children did not express concern about "being different"; nor did they well on the things they couldn't do. They were stressed most often by aversive events they did experience. The children did not complain about being different from other children; they did dislike being called derogatory names. Those with impaired hearing did not report stress because they couldn't hear as well as others, but did complain when hearing aids didn't work properly. They did not report concern about their academic standing relative to other students; they did report stress when they didn't know how to do an assignment. Mothers, on the other hand, were more likely to demonstrate what field theorists have called Comparative Values. The children placed greater weight on Asset Values (Dembo, Leviton, & Wright, 1948, 1975).

The amount of agreement between mothers' and children's identification of kinds of stress is remarkably low when one considers that even remotely similar responses were scored as agreements, and that all readily volunteered to spend considerable time and effort to participate in the study. Every one of the 20 mothers missed something that her child reported to be stressful, despite the fact that they were parents who showed genuine, thoughtful, concern and interest in their children.

In the context of Tamara Dembo's (1969) insider/outsider perspective, however, this finding is not surprising. Dembo argued that even a quasi-insider (e.g. a mother who is close to her child) is unlikely to perceive an insider's experience in the same way as the insider does.

There is some evidence that professionals are not different from mothers in this respect. Yamamoto (1979) and Yamamoto & Felsenthal (1982) showed that teachers do not make accurate predictions of stresses perceived by their physical normal students. Similarly, a group of medical and mental health professionals predicted that the research presented here would be a waste of time because "everyone already knows that the disability itself is what causes the children's stress." Further, they believed that any stresses other than those arising from the physical difficulty itself would be trivial and unimportant. They speculated that the children, in particular, might fail to understand what is their "real" problem.

Some implications of Dembo's theory and the data of this study are clear. It is risky for either parents or professionals to take for granted that they understand what stresses children. If psychologists are to help mothers manage stress experienced by their children, the first step in the program should be to establish communication between the helper and the person to be helped. For example, the plan employed in this study--a request that mothers and children independently list stresses, followed by a suggestion that parent and child compare notes--could well serve as a beginning activity to facilitate better communication and define the problems to be solved.

There are professionals who would agree with Dembo, that it is the insider-- even when s/he is a child-- who should decide which problems need attention. Even therapists who hold that a client doesn't understand the "real" problem might agree that any form of therapy should begin by addressing the "presenting" problem. In either case, the many stresses identified by the children in this study were sources of considerable discomfort, and they represent problems for which psychologists and rehabilitation workers can find solutions. Ultimately, it may be hoped that stress reduction programs may be offered routinely as in integral part of the medical/educational habilitation of children with physical disabilities.

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