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Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
Effects of Childhood Chronic Illness on Families a
Dorothy J. Feeman PhD & John W. Hagen PhD
b
a
Associate Professor, School of Social Work, Marywood College, Scranton, PA, 18411 b
Professor of Psychology and Director, Center for Human Growth and Development, University of Michigan Published online: 26 Oct 2008.
To cite this article: Dorothy J. Feeman PhD & John W. Hagen PhD (1990) Effects of Childhood Chronic Illness on Families, Social Work in Health Care, 14:3, 37-53, DOI: 10.1300/ J010v14n03_03 To link to this article: http://dx.doi.org/10.1300/J010v14n03_03
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Effects of Childhood Chronic Illness on Families
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Dorothy J. Feeman, P h D John W. Hagen, P h D
ABSTRACT. This study examined the intellectual ability, academic performance, behavior, and social perceptions of children with a seizure disorder and their nonafflicted siblings. These data suggest the children are at risk for develo mental la$ and related problems. lmpact of the illness on the famik differentiated the sibling pair on many tasks and on parents' feelings towards their children. Although parents reported providing a normal environment for their children, the children reported their perceptions of the home environment to be further from the (population norm) than their parents. These results provide evidence for the whole family being affected by the chronic illness thus supporting social work's inherent holistic view. It also underscores the need for a seconda preventive approach with all families containing a child with aXandicapping condition.
Ten to fifteen percent of American children have some form of chronic physical illness and of these about 10%have severe chronic illness (Haggerty, Roghmann, & Pless, 1975; Ireys, Moynihan, Perrin, & Shayne, 1983; Pless & Pinkerton, 1975; Starfield and Pless, 1980; Stein, 1983). Although there is little evidence of an Dorothy J. Feeman is Associate Professor, School of social work, Marywood College and John W. Hagen is Professor of Psychology and Director, Center for Human Growth and Development, University of Michigan. Address correspondence to Dorothy J. Feeman, School of Social Work, Marywood College, 2300 Adams Ave., Scranton, PA 18411. This paper was originally presented at the annual meeting of the American Public Health Association, November, 1988. Social Work in Health Care, Vol. 14(3) 1990 8 1990 by The Haworth Press, Inc. All rights reserved. 37
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SOCUL WORK IN HEALTH CARE
increase in the number of children with chronic illnesses, advances in disease-specific therapies have allowed these children to survive into adulthood. Social workers are therefore involved in providing service for these children and their families over a long period of time. The purpose of this study was to investigate the effect of chronic illness on the ill child and their family to determine their need for services provided by social workers and other professionals. One dimension of the study was to determine risks of developmental delays for the children. Risk was examined by comparing children with the chronic illness to nonafflicted siblings and unrelated healthy children on measures across several domains. A generic/holistic approach was used to conceptualize the problems involved in determining the extent of the effect of childhood chronic illness upon children. In using this approach, several aspects of the child's life were examined; looking at the 'whole child' rather than just the disease. Concepts from family systems theory (Frey, 1984; Hartup, 1978; Minuchin, Baker, Rosman, Liebman, Milman & Todd, 1975) also aided in this investigation as consideration of the effect of the illness on the family as a unit was also taken into account. Therefore, two specific areas were examined: the children with a chronic illness and their healthy siblings' performance on several measurements; intellectual ability, academic performance, behavior, and self-perceptions as well as the role played by the children's environment on their performance. Some of the many changes that take place in families with a chronically ill child are: the parents change, lifestyles change, and the atmosphere in the home changes. All of these alterations, according to the contextual and systems models, have a direct and indirect impact on all family members. Parental anxiety, preoccupation, and physical absence all increase due to the ill child's specific needs. These parental problems in turn affect the healthy siblings as less energy is available to be spent on them. Furthermore, parents of the chronically ill child often report the loss of confidence in their parenting skills and discipline patterns because they are unclear about how to raise their chronically ill child and are confused by the sick role (DeWet & Cywes, 1984; Klein & Simmons, 1979). Parents often vacillate over expectations,
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limit setting and rules which result in differential treatment of the ill child as compared to the healthy siblings. This differential treatment often leads to conflict between the siblings as overindulgence, with regards to the ill child, is often at the expense of the healthy siblings (Eiser, 1979). Siblings report, in the Iles (1979) study, a change in the quantity and quality of their relationships with parents (mainly mother) due to involvement with the ill child. While examining the family interactions and relationships of diabetic children and their siblings, Crain, Sussrnan, and Weil (1966) found mothers and their diabetic children had an intimate expressive relationship, while the healthy sibling mother relationship was not., In reviewing the literature on diabetic children, Johnson (1980) pointed out many investigators have suggested pathological family patterns play a significant role in the disease process. The most common of these include: overanxiousness, overindulgence, overcontrolling, resentment and rejection, and uninterest and neglect. Although recent research supports the use of the family systems model for understanding the effect of chronic illness, the majority of the literature on chronically ill children has focused on the topic of the mother-child dyad rather than the entire family. Not only has the father-child influence been neglected but also the sibling relationships. In fact, although the sibling relationship during the childhood years has been found to be extremely important for children experiencing themselves differently than others, for providing an opportunity for children to learn to communicate and socialize in a safe environment (providing a training ground for later socialization and communication with peers and teachers), and for sources of facilitation and support, a substantial amount of the literature completely ignores this relationship and the fact that siblings spend more time together than any other subsystem. The few studies investigating the effect of having a chronically ill sibling on the healthy child seems to indicate increased physical, social, behavioral, and academic problems (Breslau, 1982; Carandang, Folkins, Hines, & Steward, 1979; Eiser, 1979; Ferrari, 1984; Harvey & Greenway, 1982; Iles, 1979; Klein & Simmon, 1979; Lavigne & Ryan, 1979; McKeever, 1983; Maguire, 1983; Peck, 1979; Taylor, 1980; Tiller, Ekert, & Richards, 1977; Wood, Boyle, Watkins, Nogueira, Zimand, & Carroll, 1988).
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This present study was implemented to better understand the effect chronic illness has on children and their families by examining the intellectual, academic, and psychological development of children having a seizure disorder and their healthy siblings, the impact of the illness on the family, and family functioning. METHODS
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Subjects
Subjects were composed of 48 families: 24 families containing a child with a seizure disorder and at least one other sibling (24 chronically ill children [CSD] and 24 healthy siblings [SDS]); and 24 families with healthy children (24 healthy unrelated comparison children [UC]). The mean chronological ages of the children at the time of testing were 11.1 for the CSD (10 boys and 14 girls), 12.1 for the SDS (12 boys and 12 girls), and 12.2 for the UC (11 boys and 13 girls). The families were mainly caucasian of lower to middle socioeconomic origin. Occupation and education of both parents were evaluated as indicators of socioeconomic status. As expected, these measures were highly correlated. Highest educational level of either parent was therefore chosen as the index for socioeconomic status and used as a covariate in the analyses where appropriate. Children with a seizure disorder were identified through the patient registry at C.S. Mott Children's Hospital, Ann Arbor, Michigan. Between June 1985 and November 1986 the parents of these children were contacted. The nonafflicted sibling closest in age to the ill child was chosen to participate in the study. The comparison children's data were from a prior study conducted by the university research team (Hagen, Anderson, Barclay, Goldstein, Kandt, Genther, Feeman, & Bacon, 1985). Children had to be generally healthy and currently attending a regular school classroom (i.e., not a self-contained, special education class) to be eligible for participation in the project. The chronically ill children have been classified, by the pediatric neurology clinic, as having two major types of scizures [twelve generalized (including 5 absence, a subdivision of generalized), ten partial
Dorothy J. F e e m n and John W. Hagen
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(seven complex and three simple), one mixed, and one whose seizure type was unknown (according to the medical record)] and in good physical condition. Seizures are classified according to the site of abnormal neuronal discharge. Since seizures are rarely obSewed by medical personnel they are classified as a result of nonmedical observations and electroencephalograms (EEG).
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Procedures
Parents and children participated in a session lasting approximately 2-112 hours in the research laboratory of the Center for Human Growth and Development, University of Michigan. While each child was being assessed individually by two separate experimenters in two separate rooms, parents participated in a structured interview conducted by a third experimenter and completed several written questionnaires. The experimenters were part of a university interdisciplinary research team and were undergraduate psychology majors and graduate students in the areas of social work, psychology, and educational psychology. Instruments
Instruments were selected which assess the children's general intelligence, academic performance, self perceptions, and behavior to determine their develoomental level in these areas. Acceotable reliability and validly vaiues have been published for these standardized instruments. These data therefore provide information concerning the risk of developmental delays and related problems for children in these areas. In addition, to better understand the children's development via the contextual model (Bronfenbrenner, 1979; Cole, Hood, and McDermott, 1978; and Rogoff, 1982), instruments and interviews were selected to provide information on the children's school history as well as a description of their home environment.
A measure of intellectual functioning was obtained by use of five scales (block design, vocabulary, digit span, information, and comprehension) of the Wechsler Intelligence Scale for Children-Re-
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vised form (Wechsler, 1974). Academic achievement was assessed by the reading comprehension and mathematics scales of the Peabody Individual Achievement Test (Dunn & Markwardt, 1970). School grades and overall achievement in school were recorded.
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Behavior and Self-Competency The Conner's Teacher Rating Scale, Revised; (Goyette, Conners, & Ulrick, 1978) was used to measure the parents7perceptions of their children's behavior. Children's self perceptions were measured by the Harter Perceived Self-competence Scale for Children (1978). The behavior problems scale included five subscales: conduct, passivity, anxiety, hyperactivity, and symptom (overall behavioral problems). Environment Measures included parental perception of children's impact on family (Stein and Jessop, 1985), parental concerns and interests (Graham, unpublished), and family social climate (Moos Family Environment Scale, 1974). The impact on family scale included 5 indices of impact: total (negative and positive), general (negative), financial (negative and positive), social (disruption of social relation), and coping (positive). The parental concerns and interests scale included 4 indices: encouragement of independence, warmth, strictness, and aggravation. The family social climate scale included 10 dimensions of social environment of the home: cohesiveness, expressiveness, conflict, independence, achievement orientation, intellectual-cultural orientation, active-recreational orientation, moral-religious emphasis, organization and control. Limitations There are several sampling limitations to this study: small sample size, non-random assignment, and the use of only one chronic illness. These sampling problems limit the generalizability of the study, but the findings of the investigation will have important implications for intervention/prevention within these families. Other limitations are the difficulty in interpreting a one-time testing situation with regard to the long term effect (and the problems)
Dorothy J. Feeman and John W.Hagen
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of not considering the developmental level of the child and the family's stage of adaptation. These limitations are extremely important in the understanding of the effects of chronic illness and therefore, emphasize the need for future research within this population.
RESULTS
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The analyses can be divided into two general areas, those dealing with differences among the three groups of children, CSD, SDS, and UC, and those pertaining to the description of the children's environment.
Group Differences Analyses of variance and covariance, where appropriate, on the dependent variables of intellectual functioning, academic achievement, behavior, and self perceptions were carried out. IntelIectuaNCognitive Functioning
The results of the analyses on the Wechsler Intelligence Scale for Children-Revised (WISC-R) and the estimated IQ score (Sattler, 1974, p. 166-167) found differences in adjusted means for the groups (CSD, SDS, UC) to be significant at the .O1 level. The CSD scored lower than the SDS and the UC on all scales and the estimated IQ scores, while the SDS scored lower than the UC on three of the scales (digit span, information, and block design) and the estimated IQ scores (Table 1). Overall the CSDs scored in the low average range, the SDS in the average range, and the comparison children in the high average range of intelligence. The CSD and SDS groups scored significantly lower on mathematics and reading comprehension scales of the Peabody Individual Achievement Test (PIAT) than the UC, p < .01. The differences between the CSD and SDS were also significant at the .O1 level (Table 1). While more of the children with a chronic condition than the nonafflicted children were reported by their parents as having problems in school, significantly more of the healthy siblings of these
SOClAL WORK IN HEALTH CARE TABLE 1 . WISC-R, PIAT, School Questions, Behavior, and Self Perception Scores by group (children with a seizure disorder [CSD], siblings [SDS], and unrelated comparison children [UC]) and significance levels between groups. Scores are adjusted for covariance where appropriate. SCORES PER GROUP CSD SD UC
MEASURE
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WISC-R
(Scaled Score
-
SIGNIFICANCE LEVEL OF CONTRAST CSD/SDS CSD/UC
Covariate: SES)
Vocabulary Digit Span Information Comprehension Ulock Design Cst. lQ
8
11
9 87
11
13
103
117
PIAT (Percentile Rank
-
t4atlbmatl.c~ Readi ng
I4 40
8
11 10 10
7
9
13 12 12 13
Covariate: SES) 53
76
57
81
11
**
SCrlOOL QlJESTrOliS (Percentage of Yes Responses Repeated a grade Special Education This year Ever Ever missed school Grades < C Grades poor Problems with friends BEHAVIOR (Mean Score
17
17
50
13 35 9
54 33
25 54
18 21 9
38
- Covariate:
-
MLRi J
8
tt
21 13 0 25 13
-
sex)
Covariate: age)
Cognitive Social Physical Self Esteem Notes: +=Maximum Likelihood Ratio ** = p < .01: = p < .05; not significant
-
*
0
Conduct Passivity Anxiety Hyperactivity Symptom SELF PERCEPTION (Hean Score
-
*t
-
t.t
* -
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chronically ill children than the unrelated children were reported as having repeated a grade and getting grades below the C level. The SDS were also reported as requiring more special education somewhere in their school career, missing more school in the last month and not participating as much in extra curricular activities as the UC, however the differences were not significant (Table 1).
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Behavior and Self-competency The trend found on the cognitive variables was repeated on parents' report of their children's behavior (CSD the most problematic, UC reported as having the least amount of problems, and the SDS reported behavior problems falling between the others). An exception was found on the conduct problem scale, where the SDS's mean score was slightly higher than their siblings. Planned comparisons found the CSDs scored significantly higher (higher scores indicate more problems in these areas) than the UC on three of the scales, passivity, anxiety, and symptom (overall behavior problems). The SDS scored significantly higher than the UC on the conduct problem scale and significantly lower than their siblings on the passivity scale (Table 1). The trend of the UC scoring better (higher self-perceptions) than the sibling pair was maintained on all but the general self-esteem scale. On this scale the SDS's mean score was higher than the other two groups. Comparisons between groups revealed significant differences between the CSD and UC on the cognitive and social scales. In addition, significant differences were found on the social scale between the CSD and SDS. SDS scored higher than the CSD.
Environment Several researchers have suggested measurement of the effect of having a chronic illness must include its impact on the family (Fife & Lancaster, 1984; Ireys et al., 1983; Johnson, 1980; Kaplan, Grobstein, & Smith, 1976; Newell, 1974; Pless & Satterwhite, 1973; Travis, 1976). In addition studies have found families react differently to having a child with a chronic illness (Fife & Lancaster, 1984, Grey, Genel, & Tamborlane, 1980, Tiller et al., 1977; Anderson, Miller, Auslander, & Santiago, 1981). The children's
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environment was measured by several instruments (Impact on Family, Parental Concerns and Interests, and Family Environment Scale). The first to be discussed is parental reports of changes (impact) in the family with the addition of children (total [positive and negative change] and general [negative change] impact, financial support and disruption of social relations) and parental coping. Since the responses of the parents were widely varied, three groups of families, according to scores on each index were formed, those reporting low, medium, and high impact and those reporting low, medium, and high coping responses. Comparison of CSD's scores on self competence, behavior, and academic performance across parental scores of impact revealed significant differences. Their physical self-perceptionswere higher when parents reported higher total impact and financial support and lower disruption of social relations. In addition their social perceptions of self were higher when their parents reported either low or high social disruption. The differences found in the CSD's scores on behavior according to impact were: children in the high total and general impact groups were reported as being more passive and displaying higher general behavioral symptoms than the other two groups. Their reading scores were also affected according to total impact, children in the medium and low groups performed better than those in the high group. The only impact indices which differentiated the SDS's self perceptions was the total impact. Children in the medium group displayed higher self-esteems than children in the other two groups. However, SDS in the high general impact group displayed more behavioral problems than children in the low and medium impact groups. In addition the SDS in the high general impact group scored lower on mathematics and reading than the other two groups. The differences between the coping groups were not significantly different than within the groups for either the CSD or SDS on any of these dependent variables. Parental reports of their concerns and interests (independence, warmth, aggravation, and strictness) per child was also affected by their reports of impact (change) per indices. When the CSDs were placed in the three groups according to total impact the differences
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per group by parents report on independence were significant. The children in the high impact group were given less independence. This was also true for the SDS but the differences were not significant. Parents reported less warmth towards SDS in the high impact group of social dysfunction, general impact and parental coping than for those in the other two groups. SDS in the high impact group of general impact and parental coping were also reported by parents to be more aggravating than those in the other two groups. Parents who reported they were able to cope were also reporting being more strict with these children than those in the other two groups. In addition to measuring impact and coping of parents, a measure of the home environment was assessed by a standardized family environment instrument (Moos, 1974). Parents in the two groups (sibling pair and UC) responded significantly different to the questions determining their concern with expressiveness, orientation towards intellectual, recreational activity, religious emphases, and control. The UC parents reported placing more emphasis on expressiveness and intellectual and recreational activities and less ernphasis on control, while the parents of the sibling pair placed more emphasis on religion and control (Table 2). The children's responses to questions on the Family Environment Scale were more extreme (further from the standard mean of 50) than their parents, however only on one scale, achievement, were the differences significant. Whereas the parents viewed their homes as being normal, as far as an orientation towards achievement was concerned, the children viewed their homes as strongly achievement orientated (Table 2). DISCUSSION
Effect on Children The data provided empirical evidence that the children with a seizure disorder and their nonafflicted siblings are having developmental problems. Although the sibling pair scored in the average range on intellectual tasks, their scores on all the intellectual mea-
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TABLE 2. Family Environment Scale scores per group (parents' of the sibling pair [CSDP], parents' of the unrelation children [UCP],children with a seizure disorder [CSD], and siblings [SDS]) and significance levels between groups. GROUP
LEVEL Subscale Cohesion ..... Expressive Conflict Independence ~chievement ~
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IQ Activity Reliqious organization Control
-
CSDP 50 48 52 44 49 49 51 60 51 57
UCP 53
55 54 51 48 61 .
58 51 44 49
* * p < .01: = p c .05 Standardized norm is 50 for each subscale.
surements were lower than the unrelated children's scores. Since children under stress are often distracted by their stress (medical or emotional), their capacity for employing strategies or searching memory for stored information may well be affected. The sibling pair, CSD and SDS, were also found to have difficulties within the school setting. Although the performance of the children with the seizure disorders on academic tasks were lower than their siblings, both groups of siblings scored lower than the unrelated children. In addition to the sibling pairs' poorer performance, their parents reported both their children required some type of special education, repeated grades, and did not participate in extra curricular activities. Parents also reported both siblings complained of medical problems other than the chronic illness. The results of the measures of intellect and academic achievement show that performances of the sibling pair were diminished when compared to the UC. Therefore, one generalization that appears valid is that the onset of seizure disorders places the child with the chronic condition and their siblings at risk for developmental delays in these areas. The trend of the child with the chronic illness performing lower than their sibling and the sibling performing lower than the unrelated children as found on many of the measure-
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ments (although the differences between groups were not always significant) suggests the illness directly as well as indirectly affected the children with seizure disorders while it only indirectly affected the nonafflicted sibling.
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Effect on Family The risk of developmental delays for the children appears then to be related to the effect the illness has on the family. Data from the present study (showing impact to be related to the areas measured), as well as previous studies, show that families react differently to having a child with a chronic illness. For some families the onset of an illness greatly affects the family functioning, while other families are able to cope with the illness with minimal problems. When the impact of the illness produces many changes in the family it appears that the children (both the child with the illness and their sibling) have a greater chance of being affected in a negative manner placing them at risk for a variety of developmental delays. Although these problems cannot be generalized across all families, when considering the overall effect of the illness one must consider the relationship of the illness to family functioning. These data therefore, support the concept of development involving an interaction of biological predispositions and environmental experiences. When the biological functioning of the child is interrupted by a chronic illness, developmental delays occur and when the environment of the child is changed due to the onset of an illness, additional delays can occur. Since the biological functioning of the sibling is not affected, delays in development most likely occur through environmental changes.
IMPLICATIONS These findings have potential value for social service, policy decisions, and funding provided to families with a child who has a chronic illness. Although a disease-specific model is essential for biomedical treatment and research, it is not appropriate for attending to social and psychological issues involved in childhood chronic
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illness as it focuses only on the illness instead of the whole child and their family. Identification of children and families at risk, for example, an assessment of the ill child's functioning as well as an assessment of the impact on the family due to the illness and subsequent family functioning, is necessary for determining what type of services should be offered and funded to both the child and the family. Since this study also found that children's academic performance and extra curricular activities were affected, providing intervention in the context of the school and advocacy in the community environment would be beneficial. Therefore, for policy decisions regarding service planning, it is important to take into account that all families containing a child with a chronic illness should not be treated identically. Individual differences among family members as well as differences in family functioning should be considered. While there is much to learn about the multidimensional effect of chronic illness this study and others have provided information that suggest children with chronic illnesses and their nonafflicted siblings are often at risk of developmental delay. Therefore, offering social services to the family of a child with a chronic illness is an important way of ameliorating risk. While service delivery in health care should be the primary concern for the ill child, secondary preventionlintervention needs to be included via social work services for the parents, the child with the chronic illness and their nonafflicted siblings. These services also should be provided within the school and community setting. Since children with a chronic illness and their siblings may require help from professionals in many fields (e.g., medical, school, and advocacy groups) a social work treatment model which coordinates the various helping professions to explore the child and family needs would be helpful (Auerswald, 1968). It is essential for any one professional providing assistance to these childrenlfamilies to know and understand what other professionals are doing. An intersystem conference can help professionals working with the childrenlfamilies form a consensus between the helpers of what the intra-familial needs are and design an overall plan to eliminate and prevent dysfunction.
Dorothy J. Feeman and John W. Hagen
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REFERENCES Anderson, B.J., Miller, J.P. Auslander, W.F., & Santiago, J.V. (1981).Family characteristics of diabetic adolescents relationship to metabolic control. Diabetes Care 4(6), 586-594. Auerswald, E. (1968).Families, change, and the ecological perspective. Family Process, 10, 263-280. Breslau, N. (1982). Siblings of disabled children: Birth order and age-spacing effects. Journal of Abnormal Child Psychology, 10, (I),85-96. Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University Press. Carandang, M.L.A., Folkins, C.H., Hines, P.A., & Steward, M.S. (1979).The role of cognitive level and .sibling illness in children's conceptualizations of illness. American Journal of Otihopsychiatry, 49(3),474-481. Cole, M., Hood, L., & McDermott, R.P. (1978).Concepts of ecological validity: Their differing implications for comparative cognitive research. The QuaHerly Newsletter of the institute for Comparative Human Development, 2 , 34-37. Crain, A.J., Sussman, M.B., & Weil. W.B. (1966).Family interaction, diabetes, and sibling relationships. International Journal of Social Psychiatry, 12, 3543. DeWet, B., & Cywes, S. (1984). The psychosocial impact of cystic fibrosis. SA Medical Journal, 65(31), 526-530. Dunn, L.M. & Markwardt, F.C., Jr. (1970).Peabody, Individual Achievement Test. Circle Pines, Minnesota: American Guidance Service. Eiser, C. (1979). Psychological development of the child with leukemia: A review. Journal of Behavioral Medicine, 2, 141-157. Fenari, M. (1984).Chronic illness: Psychosocial effects on siblings-1. Chronically ill boys. Journal of Child Psychology and Psychiatry, 25(3), 459-476. Fife, B.L. & Lancaster, W. (1984).Understanding leukemic children's coping behavior within the family context: Two case presentations. lssues in Comprehensive Pediatric Nursing, 7 , 45-57. Frey, J. (1984).A family systems approach to illness: Maintaining behaviors in chronically ill adolescents. Family Process, 23(2), 251-260. Goyette, C.H., Conners, C.K., & Ulrich, R.F. (1978).Normative data on revised Conners parent and teacher rating scales. Journal of Abnormal Child Psycholo m -, 612). . , -221-236. Grey, M.J., Genel, M., & Tamborlane, W.V. (1980).Psychosocial adjustment of latencv-aeed diabetics: Determinants and relations hi^ to control. Pediatrics, 65(1),69-75. Hagen, I., Anderson, B., Barclay, D., Goldstein, G., Kandt, R., Genther, C., Feeman, D.J. & Bacon, F. (1985).Cognitive and school performance in diabetic children. Paper presented at the annual meeting of the Society for Research in Child Development, Toronto, Canada.
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Haggerty, R.J., Roghmann, K.J., & Pless, I.B. (1975). Child health and the community. New York: John Wiley and Sons. Harter, S. (1978).Perceived competence scale for children. Denver, CO: University of Denver. Hartup, W. (1978).Perspectives on child and family interaction: Past, present and future. In R. Lerner & G. Spanier (Eds.), Child influences on marital and family interaction. New York: Wiley, 23-45. Hawey, D.H. & Greenway, A.P. (1982).The self-concept of physically handicapped children and their nonhandicapped sibling: An empirical investigation. Jownal of Child Psychology and Psychiatry, 25(2), 273-284. Iles, J.P. (Oct. 1979). Children with cancer: Healthy siblings perceptions during the illness experiences. Cancer Nursing, 371-377. Ireys, H.T., Moynihan, L.D., Perrin, J.M., & Shaynes, M.W. (1983).Chronically ilI children in America: Background and recommendations. Center For the Study of Families and Children, Vanderbilt Institute for Public Policy Studies, 1-33. Johnson, S.B. (1980). Psychosocial factors in juvenile diabetes: A review. Journal of Behavioral Medicine, 3(1), 95-116. Kaplan, D.M.. Grobstein. R., & Smith, A. (1976).Predicting the impact of severe illness in families. Health and Social Work, 1(3), 70-82. Klein, S. & Simmons, R.G. (1979).Chronic disease & childhood development: Kidney disease and transplantation. Research in Communi@ Mental Health, I, 21-59. Lavigne, J.W.,& Ryan. M. (1979).Psychological adjustment of siblings of children with chronic illness. Pediatrics, 63(4),616-627. McKeever, P. (1983). Siblings of chronically ill children: A literature review with implications for research and practice. American Journal of Orthopsychiatry, 53(2), 209-218. Maguire, G.P. (1983).The psychological sequel of childhood leukemia. Recent Results of Cancer Research, 88, 47-56. Minuchin, S., Baker, L., Roman, B.L., Liebman, R., Milman, L., &Todd, T. (1975). A conceptual model of psychosomatic illness in children. Archives of General Psychiatry, 32, 1031-1038. Moos, R. (1974).Family environment scale andpreliminaty manual. Palo Alto, CA: Consulting Psychologists Press. Newell, P. (1974). Measurement of outcome of chronic illness in children: The view from family practice. In G.D. Grave & I.B. Pless (Eds.). Chronic childhood illness-assessment of outcome. Bethesda, Maryland: DHEW Publication No. (NIH) 76-877,83-86. Peck B. (1979). Effects of childhood cancer on long term survivors and their families. British Medical Journal, 19, 1327-1329. Pless, I.B. & Pinkerton. P. (1975).Chronic Childhood Disorder: Promoting Patterns of Adjurtment, Chicago, Ill: Yearbook Medical Publications, 9-19,6372, 87-90.94-115,141-144,147-151,154-158,& 200-210.
Downloaded by [Johns Hopkins University] at 07:52 02 January 2015
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Pless, I.B., & Sattenvhite, B. (1973). A measure of family functioning and its application. Social Science & Medicine. 1, 613-621. Ragoff, . - . B. (1982). Schooling and the development of cognitive skills. In M.E. Lamb & A.L. Brown (~d;), ~dvancesin &velopment~lpsycho~ogy (Vol. 2). Hillsdale, NJ: Lawrence Erlbaum Associates. Sattler, J.M. (1974). Assessment of children's intelligence. Philadelphia, PA: W.B. Saunders Co. Starfield, B. & Pless, I.B. (1980). Physical health. In O.G. Brim, & J. Kagen (Eds.), Constancy and change in human development. Cambridge, MA: Harvard University Press. Stein, R. (1983). Growing up with a physical difference. Children f Health Care. 12, 53-61. Stein, R.E. & Jessop, D.J. (1985). Tables documenting thepsychometricproperties of a measure of the impact of chronic illness on a family. New York: Albert Einstein College of Medicine. Taylor, S.C. (1980). The effect of chronic childhood illness upon well siblings. Maternal-Child Nursing Journal, 9(2), 109-116. Tiller, J.W.G., Ekert, K., & Richards, W.S. (1977). Family reactions in childhood acute lymphoblastic leukemia in remission. Australian Pediatric JourM I , 13, 176-181. Travis, G. (1976). Chronic illness in children. Stanford, CA: Stanford University Press. Wechsler, D. (1974). Wechsler Intelligence Scale for Children -Revised. New York: The Psychological Corporation. Wood, B., Boyle, J.T., Watkins, J.B., Nogueira, J., Zimand. E., & Carroll, L. (1988). Sibling psychological status and style as related to the disease of their chronically ill brothers and sisters: Implications for models of biopsychosocial interaction. Developmental and Behavioral Pediatrics, 9(2), 66-75.
Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
Effects of Childhood Chronic Illness on Families a
Dorothy J. Feeman PhD & John W. Hagen PhD
b
a
Associate Professor, School of Social Work, Marywood College, Scranton, PA, 18411 b
Professor of Psychology and Director, Center for Human Growth and Development, University of Michigan Published online: 26 Oct 2008.
To cite this article: Dorothy J. Feeman PhD & John W. Hagen PhD (1990) Effects of Childhood Chronic Illness on Families, Social Work in Health Care, 14:3, 37-53, DOI: 10.1300/ J010v14n03_03 To link to this article: http://dx.doi.org/10.1300/J010v14n03_03
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Effects of Childhood Chronic Illness on Families
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Dorothy J. Feeman, P h D John W. Hagen, P h D
ABSTRACT. This study examined the intellectual ability, academic performance, behavior, and social perceptions of children with a seizure disorder and their nonafflicted siblings. These data suggest the children are at risk for develo mental la$ and related problems. lmpact of the illness on the famik differentiated the sibling pair on many tasks and on parents' feelings towards their children. Although parents reported providing a normal environment for their children, the children reported their perceptions of the home environment to be further from the (population norm) than their parents. These results provide evidence for the whole family being affected by the chronic illness thus supporting social work's inherent holistic view. It also underscores the need for a seconda preventive approach with all families containing a child with aXandicapping condition.
Ten to fifteen percent of American children have some form of chronic physical illness and of these about 10%have severe chronic illness (Haggerty, Roghmann, & Pless, 1975; Ireys, Moynihan, Perrin, & Shayne, 1983; Pless & Pinkerton, 1975; Starfield and Pless, 1980; Stein, 1983). Although there is little evidence of an Dorothy J. Feeman is Associate Professor, School of social work, Marywood College and John W. Hagen is Professor of Psychology and Director, Center for Human Growth and Development, University of Michigan. Address correspondence to Dorothy J. Feeman, School of Social Work, Marywood College, 2300 Adams Ave., Scranton, PA 18411. This paper was originally presented at the annual meeting of the American Public Health Association, November, 1988. Social Work in Health Care, Vol. 14(3) 1990 8 1990 by The Haworth Press, Inc. All rights reserved. 37
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increase in the number of children with chronic illnesses, advances in disease-specific therapies have allowed these children to survive into adulthood. Social workers are therefore involved in providing service for these children and their families over a long period of time. The purpose of this study was to investigate the effect of chronic illness on the ill child and their family to determine their need for services provided by social workers and other professionals. One dimension of the study was to determine risks of developmental delays for the children. Risk was examined by comparing children with the chronic illness to nonafflicted siblings and unrelated healthy children on measures across several domains. A generic/holistic approach was used to conceptualize the problems involved in determining the extent of the effect of childhood chronic illness upon children. In using this approach, several aspects of the child's life were examined; looking at the 'whole child' rather than just the disease. Concepts from family systems theory (Frey, 1984; Hartup, 1978; Minuchin, Baker, Rosman, Liebman, Milman & Todd, 1975) also aided in this investigation as consideration of the effect of the illness on the family as a unit was also taken into account. Therefore, two specific areas were examined: the children with a chronic illness and their healthy siblings' performance on several measurements; intellectual ability, academic performance, behavior, and self-perceptions as well as the role played by the children's environment on their performance. Some of the many changes that take place in families with a chronically ill child are: the parents change, lifestyles change, and the atmosphere in the home changes. All of these alterations, according to the contextual and systems models, have a direct and indirect impact on all family members. Parental anxiety, preoccupation, and physical absence all increase due to the ill child's specific needs. These parental problems in turn affect the healthy siblings as less energy is available to be spent on them. Furthermore, parents of the chronically ill child often report the loss of confidence in their parenting skills and discipline patterns because they are unclear about how to raise their chronically ill child and are confused by the sick role (DeWet & Cywes, 1984; Klein & Simmons, 1979). Parents often vacillate over expectations,
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limit setting and rules which result in differential treatment of the ill child as compared to the healthy siblings. This differential treatment often leads to conflict between the siblings as overindulgence, with regards to the ill child, is often at the expense of the healthy siblings (Eiser, 1979). Siblings report, in the Iles (1979) study, a change in the quantity and quality of their relationships with parents (mainly mother) due to involvement with the ill child. While examining the family interactions and relationships of diabetic children and their siblings, Crain, Sussrnan, and Weil (1966) found mothers and their diabetic children had an intimate expressive relationship, while the healthy sibling mother relationship was not., In reviewing the literature on diabetic children, Johnson (1980) pointed out many investigators have suggested pathological family patterns play a significant role in the disease process. The most common of these include: overanxiousness, overindulgence, overcontrolling, resentment and rejection, and uninterest and neglect. Although recent research supports the use of the family systems model for understanding the effect of chronic illness, the majority of the literature on chronically ill children has focused on the topic of the mother-child dyad rather than the entire family. Not only has the father-child influence been neglected but also the sibling relationships. In fact, although the sibling relationship during the childhood years has been found to be extremely important for children experiencing themselves differently than others, for providing an opportunity for children to learn to communicate and socialize in a safe environment (providing a training ground for later socialization and communication with peers and teachers), and for sources of facilitation and support, a substantial amount of the literature completely ignores this relationship and the fact that siblings spend more time together than any other subsystem. The few studies investigating the effect of having a chronically ill sibling on the healthy child seems to indicate increased physical, social, behavioral, and academic problems (Breslau, 1982; Carandang, Folkins, Hines, & Steward, 1979; Eiser, 1979; Ferrari, 1984; Harvey & Greenway, 1982; Iles, 1979; Klein & Simmon, 1979; Lavigne & Ryan, 1979; McKeever, 1983; Maguire, 1983; Peck, 1979; Taylor, 1980; Tiller, Ekert, & Richards, 1977; Wood, Boyle, Watkins, Nogueira, Zimand, & Carroll, 1988).
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This present study was implemented to better understand the effect chronic illness has on children and their families by examining the intellectual, academic, and psychological development of children having a seizure disorder and their healthy siblings, the impact of the illness on the family, and family functioning. METHODS
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Subjects
Subjects were composed of 48 families: 24 families containing a child with a seizure disorder and at least one other sibling (24 chronically ill children [CSD] and 24 healthy siblings [SDS]); and 24 families with healthy children (24 healthy unrelated comparison children [UC]). The mean chronological ages of the children at the time of testing were 11.1 for the CSD (10 boys and 14 girls), 12.1 for the SDS (12 boys and 12 girls), and 12.2 for the UC (11 boys and 13 girls). The families were mainly caucasian of lower to middle socioeconomic origin. Occupation and education of both parents were evaluated as indicators of socioeconomic status. As expected, these measures were highly correlated. Highest educational level of either parent was therefore chosen as the index for socioeconomic status and used as a covariate in the analyses where appropriate. Children with a seizure disorder were identified through the patient registry at C.S. Mott Children's Hospital, Ann Arbor, Michigan. Between June 1985 and November 1986 the parents of these children were contacted. The nonafflicted sibling closest in age to the ill child was chosen to participate in the study. The comparison children's data were from a prior study conducted by the university research team (Hagen, Anderson, Barclay, Goldstein, Kandt, Genther, Feeman, & Bacon, 1985). Children had to be generally healthy and currently attending a regular school classroom (i.e., not a self-contained, special education class) to be eligible for participation in the project. The chronically ill children have been classified, by the pediatric neurology clinic, as having two major types of scizures [twelve generalized (including 5 absence, a subdivision of generalized), ten partial
Dorothy J. F e e m n and John W. Hagen
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(seven complex and three simple), one mixed, and one whose seizure type was unknown (according to the medical record)] and in good physical condition. Seizures are classified according to the site of abnormal neuronal discharge. Since seizures are rarely obSewed by medical personnel they are classified as a result of nonmedical observations and electroencephalograms (EEG).
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Procedures
Parents and children participated in a session lasting approximately 2-112 hours in the research laboratory of the Center for Human Growth and Development, University of Michigan. While each child was being assessed individually by two separate experimenters in two separate rooms, parents participated in a structured interview conducted by a third experimenter and completed several written questionnaires. The experimenters were part of a university interdisciplinary research team and were undergraduate psychology majors and graduate students in the areas of social work, psychology, and educational psychology. Instruments
Instruments were selected which assess the children's general intelligence, academic performance, self perceptions, and behavior to determine their develoomental level in these areas. Acceotable reliability and validly vaiues have been published for these standardized instruments. These data therefore provide information concerning the risk of developmental delays and related problems for children in these areas. In addition, to better understand the children's development via the contextual model (Bronfenbrenner, 1979; Cole, Hood, and McDermott, 1978; and Rogoff, 1982), instruments and interviews were selected to provide information on the children's school history as well as a description of their home environment.
A measure of intellectual functioning was obtained by use of five scales (block design, vocabulary, digit span, information, and comprehension) of the Wechsler Intelligence Scale for Children-Re-
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vised form (Wechsler, 1974). Academic achievement was assessed by the reading comprehension and mathematics scales of the Peabody Individual Achievement Test (Dunn & Markwardt, 1970). School grades and overall achievement in school were recorded.
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Behavior and Self-Competency The Conner's Teacher Rating Scale, Revised; (Goyette, Conners, & Ulrick, 1978) was used to measure the parents7perceptions of their children's behavior. Children's self perceptions were measured by the Harter Perceived Self-competence Scale for Children (1978). The behavior problems scale included five subscales: conduct, passivity, anxiety, hyperactivity, and symptom (overall behavioral problems). Environment Measures included parental perception of children's impact on family (Stein and Jessop, 1985), parental concerns and interests (Graham, unpublished), and family social climate (Moos Family Environment Scale, 1974). The impact on family scale included 5 indices of impact: total (negative and positive), general (negative), financial (negative and positive), social (disruption of social relation), and coping (positive). The parental concerns and interests scale included 4 indices: encouragement of independence, warmth, strictness, and aggravation. The family social climate scale included 10 dimensions of social environment of the home: cohesiveness, expressiveness, conflict, independence, achievement orientation, intellectual-cultural orientation, active-recreational orientation, moral-religious emphasis, organization and control. Limitations There are several sampling limitations to this study: small sample size, non-random assignment, and the use of only one chronic illness. These sampling problems limit the generalizability of the study, but the findings of the investigation will have important implications for intervention/prevention within these families. Other limitations are the difficulty in interpreting a one-time testing situation with regard to the long term effect (and the problems)
Dorothy J. Feeman and John W.Hagen
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of not considering the developmental level of the child and the family's stage of adaptation. These limitations are extremely important in the understanding of the effects of chronic illness and therefore, emphasize the need for future research within this population.
RESULTS
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The analyses can be divided into two general areas, those dealing with differences among the three groups of children, CSD, SDS, and UC, and those pertaining to the description of the children's environment.
Group Differences Analyses of variance and covariance, where appropriate, on the dependent variables of intellectual functioning, academic achievement, behavior, and self perceptions were carried out. IntelIectuaNCognitive Functioning
The results of the analyses on the Wechsler Intelligence Scale for Children-Revised (WISC-R) and the estimated IQ score (Sattler, 1974, p. 166-167) found differences in adjusted means for the groups (CSD, SDS, UC) to be significant at the .O1 level. The CSD scored lower than the SDS and the UC on all scales and the estimated IQ scores, while the SDS scored lower than the UC on three of the scales (digit span, information, and block design) and the estimated IQ scores (Table 1). Overall the CSDs scored in the low average range, the SDS in the average range, and the comparison children in the high average range of intelligence. The CSD and SDS groups scored significantly lower on mathematics and reading comprehension scales of the Peabody Individual Achievement Test (PIAT) than the UC, p < .01. The differences between the CSD and SDS were also significant at the .O1 level (Table 1). While more of the children with a chronic condition than the nonafflicted children were reported by their parents as having problems in school, significantly more of the healthy siblings of these
SOClAL WORK IN HEALTH CARE TABLE 1 . WISC-R, PIAT, School Questions, Behavior, and Self Perception Scores by group (children with a seizure disorder [CSD], siblings [SDS], and unrelated comparison children [UC]) and significance levels between groups. Scores are adjusted for covariance where appropriate. SCORES PER GROUP CSD SD UC
MEASURE
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WISC-R
(Scaled Score
-
SIGNIFICANCE LEVEL OF CONTRAST CSD/SDS CSD/UC
Covariate: SES)
Vocabulary Digit Span Information Comprehension Ulock Design Cst. lQ
8
11
9 87
11
13
103
117
PIAT (Percentile Rank
-
t4atlbmatl.c~ Readi ng
I4 40
8
11 10 10
7
9
13 12 12 13
Covariate: SES) 53
76
57
81
11
**
SCrlOOL QlJESTrOliS (Percentage of Yes Responses Repeated a grade Special Education This year Ever Ever missed school Grades < C Grades poor Problems with friends BEHAVIOR (Mean Score
17
17
50
13 35 9
54 33
25 54
18 21 9
38
- Covariate:
-
MLRi J
8
tt
21 13 0 25 13
-
sex)
Covariate: age)
Cognitive Social Physical Self Esteem Notes: +=Maximum Likelihood Ratio ** = p < .01: = p < .05; not significant
-
*
0
Conduct Passivity Anxiety Hyperactivity Symptom SELF PERCEPTION (Hean Score
-
*t
-
t.t
* -
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chronically ill children than the unrelated children were reported as having repeated a grade and getting grades below the C level. The SDS were also reported as requiring more special education somewhere in their school career, missing more school in the last month and not participating as much in extra curricular activities as the UC, however the differences were not significant (Table 1).
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Behavior and Self-competency The trend found on the cognitive variables was repeated on parents' report of their children's behavior (CSD the most problematic, UC reported as having the least amount of problems, and the SDS reported behavior problems falling between the others). An exception was found on the conduct problem scale, where the SDS's mean score was slightly higher than their siblings. Planned comparisons found the CSDs scored significantly higher (higher scores indicate more problems in these areas) than the UC on three of the scales, passivity, anxiety, and symptom (overall behavior problems). The SDS scored significantly higher than the UC on the conduct problem scale and significantly lower than their siblings on the passivity scale (Table 1). The trend of the UC scoring better (higher self-perceptions) than the sibling pair was maintained on all but the general self-esteem scale. On this scale the SDS's mean score was higher than the other two groups. Comparisons between groups revealed significant differences between the CSD and UC on the cognitive and social scales. In addition, significant differences were found on the social scale between the CSD and SDS. SDS scored higher than the CSD.
Environment Several researchers have suggested measurement of the effect of having a chronic illness must include its impact on the family (Fife & Lancaster, 1984; Ireys et al., 1983; Johnson, 1980; Kaplan, Grobstein, & Smith, 1976; Newell, 1974; Pless & Satterwhite, 1973; Travis, 1976). In addition studies have found families react differently to having a child with a chronic illness (Fife & Lancaster, 1984, Grey, Genel, & Tamborlane, 1980, Tiller et al., 1977; Anderson, Miller, Auslander, & Santiago, 1981). The children's
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environment was measured by several instruments (Impact on Family, Parental Concerns and Interests, and Family Environment Scale). The first to be discussed is parental reports of changes (impact) in the family with the addition of children (total [positive and negative change] and general [negative change] impact, financial support and disruption of social relations) and parental coping. Since the responses of the parents were widely varied, three groups of families, according to scores on each index were formed, those reporting low, medium, and high impact and those reporting low, medium, and high coping responses. Comparison of CSD's scores on self competence, behavior, and academic performance across parental scores of impact revealed significant differences. Their physical self-perceptionswere higher when parents reported higher total impact and financial support and lower disruption of social relations. In addition their social perceptions of self were higher when their parents reported either low or high social disruption. The differences found in the CSD's scores on behavior according to impact were: children in the high total and general impact groups were reported as being more passive and displaying higher general behavioral symptoms than the other two groups. Their reading scores were also affected according to total impact, children in the medium and low groups performed better than those in the high group. The only impact indices which differentiated the SDS's self perceptions was the total impact. Children in the medium group displayed higher self-esteems than children in the other two groups. However, SDS in the high general impact group displayed more behavioral problems than children in the low and medium impact groups. In addition the SDS in the high general impact group scored lower on mathematics and reading than the other two groups. The differences between the coping groups were not significantly different than within the groups for either the CSD or SDS on any of these dependent variables. Parental reports of their concerns and interests (independence, warmth, aggravation, and strictness) per child was also affected by their reports of impact (change) per indices. When the CSDs were placed in the three groups according to total impact the differences
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per group by parents report on independence were significant. The children in the high impact group were given less independence. This was also true for the SDS but the differences were not significant. Parents reported less warmth towards SDS in the high impact group of social dysfunction, general impact and parental coping than for those in the other two groups. SDS in the high impact group of general impact and parental coping were also reported by parents to be more aggravating than those in the other two groups. Parents who reported they were able to cope were also reporting being more strict with these children than those in the other two groups. In addition to measuring impact and coping of parents, a measure of the home environment was assessed by a standardized family environment instrument (Moos, 1974). Parents in the two groups (sibling pair and UC) responded significantly different to the questions determining their concern with expressiveness, orientation towards intellectual, recreational activity, religious emphases, and control. The UC parents reported placing more emphasis on expressiveness and intellectual and recreational activities and less ernphasis on control, while the parents of the sibling pair placed more emphasis on religion and control (Table 2). The children's responses to questions on the Family Environment Scale were more extreme (further from the standard mean of 50) than their parents, however only on one scale, achievement, were the differences significant. Whereas the parents viewed their homes as being normal, as far as an orientation towards achievement was concerned, the children viewed their homes as strongly achievement orientated (Table 2). DISCUSSION
Effect on Children The data provided empirical evidence that the children with a seizure disorder and their nonafflicted siblings are having developmental problems. Although the sibling pair scored in the average range on intellectual tasks, their scores on all the intellectual mea-
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TABLE 2. Family Environment Scale scores per group (parents' of the sibling pair [CSDP], parents' of the unrelation children [UCP],children with a seizure disorder [CSD], and siblings [SDS]) and significance levels between groups. GROUP
LEVEL Subscale Cohesion ..... Expressive Conflict Independence ~chievement ~
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IQ Activity Reliqious organization Control
-
CSDP 50 48 52 44 49 49 51 60 51 57
UCP 53
55 54 51 48 61 .
58 51 44 49
* * p < .01: = p c .05 Standardized norm is 50 for each subscale.
surements were lower than the unrelated children's scores. Since children under stress are often distracted by their stress (medical or emotional), their capacity for employing strategies or searching memory for stored information may well be affected. The sibling pair, CSD and SDS, were also found to have difficulties within the school setting. Although the performance of the children with the seizure disorders on academic tasks were lower than their siblings, both groups of siblings scored lower than the unrelated children. In addition to the sibling pairs' poorer performance, their parents reported both their children required some type of special education, repeated grades, and did not participate in extra curricular activities. Parents also reported both siblings complained of medical problems other than the chronic illness. The results of the measures of intellect and academic achievement show that performances of the sibling pair were diminished when compared to the UC. Therefore, one generalization that appears valid is that the onset of seizure disorders places the child with the chronic condition and their siblings at risk for developmental delays in these areas. The trend of the child with the chronic illness performing lower than their sibling and the sibling performing lower than the unrelated children as found on many of the measure-
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ments (although the differences between groups were not always significant) suggests the illness directly as well as indirectly affected the children with seizure disorders while it only indirectly affected the nonafflicted sibling.
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Effect on Family The risk of developmental delays for the children appears then to be related to the effect the illness has on the family. Data from the present study (showing impact to be related to the areas measured), as well as previous studies, show that families react differently to having a child with a chronic illness. For some families the onset of an illness greatly affects the family functioning, while other families are able to cope with the illness with minimal problems. When the impact of the illness produces many changes in the family it appears that the children (both the child with the illness and their sibling) have a greater chance of being affected in a negative manner placing them at risk for a variety of developmental delays. Although these problems cannot be generalized across all families, when considering the overall effect of the illness one must consider the relationship of the illness to family functioning. These data therefore, support the concept of development involving an interaction of biological predispositions and environmental experiences. When the biological functioning of the child is interrupted by a chronic illness, developmental delays occur and when the environment of the child is changed due to the onset of an illness, additional delays can occur. Since the biological functioning of the sibling is not affected, delays in development most likely occur through environmental changes.
IMPLICATIONS These findings have potential value for social service, policy decisions, and funding provided to families with a child who has a chronic illness. Although a disease-specific model is essential for biomedical treatment and research, it is not appropriate for attending to social and psychological issues involved in childhood chronic
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illness as it focuses only on the illness instead of the whole child and their family. Identification of children and families at risk, for example, an assessment of the ill child's functioning as well as an assessment of the impact on the family due to the illness and subsequent family functioning, is necessary for determining what type of services should be offered and funded to both the child and the family. Since this study also found that children's academic performance and extra curricular activities were affected, providing intervention in the context of the school and advocacy in the community environment would be beneficial. Therefore, for policy decisions regarding service planning, it is important to take into account that all families containing a child with a chronic illness should not be treated identically. Individual differences among family members as well as differences in family functioning should be considered. While there is much to learn about the multidimensional effect of chronic illness this study and others have provided information that suggest children with chronic illnesses and their nonafflicted siblings are often at risk of developmental delay. Therefore, offering social services to the family of a child with a chronic illness is an important way of ameliorating risk. While service delivery in health care should be the primary concern for the ill child, secondary preventionlintervention needs to be included via social work services for the parents, the child with the chronic illness and their nonafflicted siblings. These services also should be provided within the school and community setting. Since children with a chronic illness and their siblings may require help from professionals in many fields (e.g., medical, school, and advocacy groups) a social work treatment model which coordinates the various helping professions to explore the child and family needs would be helpful (Auerswald, 1968). It is essential for any one professional providing assistance to these childrenlfamilies to know and understand what other professionals are doing. An intersystem conference can help professionals working with the childrenlfamilies form a consensus between the helpers of what the intra-familial needs are and design an overall plan to eliminate and prevent dysfunction.
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REFERENCES Anderson, B.J., Miller, J.P. Auslander, W.F., & Santiago, J.V. (1981).Family characteristics of diabetic adolescents relationship to metabolic control. Diabetes Care 4(6), 586-594. Auerswald, E. (1968).Families, change, and the ecological perspective. Family Process, 10, 263-280. Breslau, N. (1982). Siblings of disabled children: Birth order and age-spacing effects. Journal of Abnormal Child Psychology, 10, (I),85-96. Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University Press. Carandang, M.L.A., Folkins, C.H., Hines, P.A., & Steward, M.S. (1979).The role of cognitive level and .sibling illness in children's conceptualizations of illness. American Journal of Otihopsychiatry, 49(3),474-481. Cole, M., Hood, L., & McDermott, R.P. (1978).Concepts of ecological validity: Their differing implications for comparative cognitive research. The QuaHerly Newsletter of the institute for Comparative Human Development, 2 , 34-37. Crain, A.J., Sussman, M.B., & Weil. W.B. (1966).Family interaction, diabetes, and sibling relationships. International Journal of Social Psychiatry, 12, 3543. DeWet, B., & Cywes, S. (1984). The psychosocial impact of cystic fibrosis. SA Medical Journal, 65(31), 526-530. Dunn, L.M. & Markwardt, F.C., Jr. (1970).Peabody, Individual Achievement Test. Circle Pines, Minnesota: American Guidance Service. Eiser, C. (1979). Psychological development of the child with leukemia: A review. Journal of Behavioral Medicine, 2, 141-157. Fenari, M. (1984).Chronic illness: Psychosocial effects on siblings-1. Chronically ill boys. Journal of Child Psychology and Psychiatry, 25(3), 459-476. Fife, B.L. & Lancaster, W. (1984).Understanding leukemic children's coping behavior within the family context: Two case presentations. lssues in Comprehensive Pediatric Nursing, 7 , 45-57. Frey, J. (1984).A family systems approach to illness: Maintaining behaviors in chronically ill adolescents. Family Process, 23(2), 251-260. Goyette, C.H., Conners, C.K., & Ulrich, R.F. (1978).Normative data on revised Conners parent and teacher rating scales. Journal of Abnormal Child Psycholo m -, 612). . , -221-236. Grey, M.J., Genel, M., & Tamborlane, W.V. (1980).Psychosocial adjustment of latencv-aeed diabetics: Determinants and relations hi^ to control. Pediatrics, 65(1),69-75. Hagen, I., Anderson, B., Barclay, D., Goldstein, G., Kandt, R., Genther, C., Feeman, D.J. & Bacon, F. (1985).Cognitive and school performance in diabetic children. Paper presented at the annual meeting of the Society for Research in Child Development, Toronto, Canada.
-
Downloaded by [Johns Hopkins University] at 07:52 02 January 2015
52
SOCL4L WORK I N HEALTH CARE
Haggerty, R.J., Roghmann, K.J., & Pless, I.B. (1975). Child health and the community. New York: John Wiley and Sons. Harter, S. (1978).Perceived competence scale for children. Denver, CO: University of Denver. Hartup, W. (1978).Perspectives on child and family interaction: Past, present and future. In R. Lerner & G. Spanier (Eds.), Child influences on marital and family interaction. New York: Wiley, 23-45. Hawey, D.H. & Greenway, A.P. (1982).The self-concept of physically handicapped children and their nonhandicapped sibling: An empirical investigation. Jownal of Child Psychology and Psychiatry, 25(2), 273-284. Iles, J.P. (Oct. 1979). Children with cancer: Healthy siblings perceptions during the illness experiences. Cancer Nursing, 371-377. Ireys, H.T., Moynihan, L.D., Perrin, J.M., & Shaynes, M.W. (1983).Chronically ilI children in America: Background and recommendations. Center For the Study of Families and Children, Vanderbilt Institute for Public Policy Studies, 1-33. Johnson, S.B. (1980). Psychosocial factors in juvenile diabetes: A review. Journal of Behavioral Medicine, 3(1), 95-116. Kaplan, D.M.. Grobstein. R., & Smith, A. (1976).Predicting the impact of severe illness in families. Health and Social Work, 1(3), 70-82. Klein, S. & Simmons, R.G. (1979).Chronic disease & childhood development: Kidney disease and transplantation. Research in Communi@ Mental Health, I, 21-59. Lavigne, J.W.,& Ryan. M. (1979).Psychological adjustment of siblings of children with chronic illness. Pediatrics, 63(4),616-627. McKeever, P. (1983). Siblings of chronically ill children: A literature review with implications for research and practice. American Journal of Orthopsychiatry, 53(2), 209-218. Maguire, G.P. (1983).The psychological sequel of childhood leukemia. Recent Results of Cancer Research, 88, 47-56. Minuchin, S., Baker, L., Roman, B.L., Liebman, R., Milman, L., &Todd, T. (1975). A conceptual model of psychosomatic illness in children. Archives of General Psychiatry, 32, 1031-1038. Moos, R. (1974).Family environment scale andpreliminaty manual. Palo Alto, CA: Consulting Psychologists Press. Newell, P. (1974). Measurement of outcome of chronic illness in children: The view from family practice. In G.D. Grave & I.B. Pless (Eds.). Chronic childhood illness-assessment of outcome. Bethesda, Maryland: DHEW Publication No. (NIH) 76-877,83-86. Peck B. (1979). Effects of childhood cancer on long term survivors and their families. British Medical Journal, 19, 1327-1329. Pless, I.B. & Pinkerton. P. (1975).Chronic Childhood Disorder: Promoting Patterns of Adjurtment, Chicago, Ill: Yearbook Medical Publications, 9-19,6372, 87-90.94-115,141-144,147-151,154-158,& 200-210.
Downloaded by [Johns Hopkins University] at 07:52 02 January 2015
Dorothy J. Feeman and John W. Hagen
53
Pless, I.B., & Sattenvhite, B. (1973). A measure of family functioning and its application. Social Science & Medicine. 1, 613-621. Ragoff, . - . B. (1982). Schooling and the development of cognitive skills. In M.E. Lamb & A.L. Brown (~d;), ~dvancesin &velopment~lpsycho~ogy (Vol. 2). Hillsdale, NJ: Lawrence Erlbaum Associates. Sattler, J.M. (1974). Assessment of children's intelligence. Philadelphia, PA: W.B. Saunders Co. Starfield, B. & Pless, I.B. (1980). Physical health. In O.G. Brim, & J. Kagen (Eds.), Constancy and change in human development. Cambridge, MA: Harvard University Press. Stein, R. (1983). Growing up with a physical difference. Children f Health Care. 12, 53-61. Stein, R.E. & Jessop, D.J. (1985). Tables documenting thepsychometricproperties of a measure of the impact of chronic illness on a family. New York: Albert Einstein College of Medicine. Taylor, S.C. (1980). The effect of chronic childhood illness upon well siblings. Maternal-Child Nursing Journal, 9(2), 109-116. Tiller, J.W.G., Ekert, K., & Richards, W.S. (1977). Family reactions in childhood acute lymphoblastic leukemia in remission. Australian Pediatric JourM I , 13, 176-181. Travis, G. (1976). Chronic illness in children. Stanford, CA: Stanford University Press. Wechsler, D. (1974). Wechsler Intelligence Scale for Children -Revised. New York: The Psychological Corporation. Wood, B., Boyle, J.T., Watkins, J.B., Nogueira, J., Zimand. E., & Carroll, L. (1988). Sibling psychological status and style as related to the disease of their chronically ill brothers and sisters: Implications for models of biopsychosocial interaction. Developmental and Behavioral Pediatrics, 9(2), 66-75.
