Child Psychology Psychiatry - January 1990 - Eiser - Psychological Effects of Chronic Disease
Child Psychology Psychiatry - January 1990 - Eiser - Psychological Effects of Chronic Disease
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Printed in Great Britain, Pergamon Press pic
© 1990 Association for Child Psychology and Psychiatry
Introduction
Recent years have seen a tremendous growth and reconceptualization in approaches
to understanding the impact of chronic disease on children and their families. The
traditional deficit-centred model is slowly being replaced. The trend is towards models
that take account of coping resources and individual competence. The emphasis is
away from identifying psychopathology within families, and towards an understanding
of how ordinary families deal with specific crises that arise. Increasingly, our models
are being drawn from mainstream psychology, with the result that families and children
dealing with chronic disease are not seen as deviant, but as ordinary people in
exceptional circumstances. At the same time, there has been a move away from the
focus on mother-child interactions. Instead, the reciprocal relationships between all
family members is increasingly being acknowledged.
These trends are sadly not reflected in all current research. For this reason, this
review is organized firstly in terms of the psychological effects on the child, and secondly
on the family. The very complex nature of the relationship between child, parents
and siblings has hardly been unravelled yet.
85
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Christine Eiser
The premise on which much research is still based is that chronic disease exerts
a negative impact on development at a diffuse and global level. The work is daunted
by methodological difficulties. There is an emphasis placed on the child who fails
to manage effectively, with the result that we know very little about the effective coping
strategies that are clearly employed by large numbers of children. However, a slow
shift in theoretical and empirical interest is occurring. The search for global deficits
in chronically sick children continues, but increasingly researchers are also considering
how some children learn appropriate coping strategies. In turn, this approach has
considerable implication for new approaches to education and prevention.
Theoretical approaches
According to Wallander, a set of intrapersonal, interpersonal and social-ecological
factors can be identified. Intrapersonal factors include the severity of the handicap and
functional independence as well as personality factors such as temperament or coping
style. Interpersonal idiCtoT^ include temperament and coping style of the mother, since
there is evidence that child and maternal temperament are related (Chess & Thomas,
1986).
Finally, social-ecological factors include marital and family functioning, socioeconomic
status, family size and service utilization. The focus of the model is on the potentially
reciprocal nature of these relationships. Varni and WaUander (1988) go on to suggest
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Psychological effects of chronic disease 87
that the reason why families with a chronically sick child are at a greater risk for
maladjustment relates to the increased number of stressful situations to which they
are exposed. "Stress" is viewed "as the occurrence of problematic situations requiring
a solution or some decision-making process for appropriate action" (Varni &
Wallander, 1988, p. 215). A taxonomy of^problematic situations for any chronic disease
needs to be defined.
If stress is understood in terms of a series of problematic situations or stressors,
it follows that adjustment should be determined in part by individual competence
in dealing with the situations. "Competence is defined in terms of the effectiveness
of the coping responses emitted when an individual is confronted with problematic
situations" (Varni & Wallander, 1988, p. 215). Effective, active coping responses
result in a change so that the situation is no longer problematic, while at the same
time producing a maximum of additional positive consequences.
This model reflects an underlying change in professional attitudes to chronically
sick children and their families, and makes specific implications about education and
prevention. The task of professionals is to foster the acquisition of relevant coping
skills, ultimately leading to greater independence and competence in dealing with
stress. At the same time, the potential for psychosocial maladjustment and need for
continuous professional involvement is reduced.
Empirical research
Population-based work. Cadman, Boyle, Szatmari and Offord (1987) surveyed 1869
families in Ontario, Canada, including 3294 children aged between 4 and 16 years.
The incidence of chronic disease was 14%, including 3.7% of children who also
suffered from physical disability. (These data are broadly consistent with earlier
epidemiological surveys; e.g. Hobbs & Perrin, 1985.) Children with chronic disease
and physical disability were at greater than three times the risk for psychiatric disorder
and at "considerable" risk for social maladjustment compared with healthy children.
Those with chronic disease (but no physical disability) were less at risk: a two-fold
increase in psychiatric disorder, but little measurable increase in social maladjustment.
Clinical-based studies of single disease groups. Part of the difficulty in interpreting the
results of empirical work concerned with adjustmient of children with asthma can be
attributed to the way in which the disease is clinically manifested. Renne and Creer
(1985) have suggested that difficulties arise because of three characteristics of asthma:
the disease can be intermittent, variable in severity and reversible. There remain
considerable inconsistencies in the way in which objective severity of asthma is assessed
(Mrazek, 1986).
Given these difficulties, it is small wonder that empirical research has failed to clarify
the psychological implications of asthma. Recent work by Mrazek, Anderson and
Strunk (1985) compared 26 children with asthma aged between 3 and 6 years with
controls, and reported that 35% of those with asthma showed emotional disturbance
(compared with none of the controls). Those with asthma were also more likely to
be depressed. In contrast, Kashani, Koenig, Shepperd, Wilfley and Morris (1988)
reported that 56 asthma patients (aged 7-16 years) did not differ from controls on
a measure of self-concept, nor in terms of DSM-III diagnosis. Parents of those with
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Christine Eiser
asthma were more likely to report that their children showed psychiatric symptoms
(especially in terms of overanxious or phobic behaviour) than were parents of controls.
No relationship was found between the incidence of psychiatric symptoms and severity
of the child's asthma (as assessed by medication).
Perrin, MacLean and Perrin (1989) emphasize that there is no simple relationship
between adjustment and disease severity. The authors emphasize the importance of
parental perceptions of severity: adjustment was significantly worse among children
rated as "moderately" affected by parents, compared with those rated as having
"mild" or "severe" disease. Perrin et al. (1989) conclude that clinical interventions
need to be available for all children with asthma, and not only for those with objectively
measured severe disease.
The psychological adjustment of children with cancer continues to receive considerable
attention. This is disproportionate in terms of the numbers of children affected by
cancer compared with other diseases. However, significant improvements in prognosis,
as well as concerns about the potentially damaging effects of treatment, ensure that
children with cancer have a high profile in the research literature. Psychological
problems, for example in learning disabilities and academic failure (Taylor, Albo,
Phebus, Sachs & Bierl, 1987; Mulhern, Ochs & Fairclough, 1987; Wheeler, Keiper,
Janoun & Chessells, 1988), behaviour and adjustment (Wasserman, Thompson &
Wiiimas, 1987) and depression (Worchel et al., 1988), have all been reported. A meta-
analysis including 17 studies concerned with intellectual deficits by Cousens, Waters,
Said and Stevens (1988) concluded that children undergoing CNS irradiation showed
substcintial deficits in I.Q., and that this deficit was especially pronounced in those
undergoing treatment at younger ages.
Largely because of the uncertainty surrounding the question of how radiation and
chemotherapy might affect development, there have been efforts to assess psychological
functioning of long-term survivors. While Malpas (1988) reported that achievements
at school leaving age (in terms of examination passes) compared very favourably with
those of the general population, Mulhern, Wasserman, Friedman and Fairclough
(1989) identified some more subtle deficits. Long-term survivors showed a four-fold
increase in school problems and somatic complaints of unknown origin over the general
population. The presence of functional, but not cosmetic, impairment increased the
risk of both academic and adjustment problems. Children who were older on diagnosis,
were treated by cranial irradiation and lived in one-parent families were at most risk.
Peckham, Meadows, Bartel and Marrero (1988) also studied long-term survivors (8-10
years following diagnosis). Although there was enormous variability in achievement
outcome, children generally achieved less well in both reading and mathematics than
would be expected. Peckham et al. (1988) consider that the pattern of deficits indicates
specific learning disabilities rather than a global dysfunction. Again, deficits were
greater for children who were older on diagnosis (in contrast to work concerned with
more immediate follow-up, when it has consistently been shown that greater deficits
occur for children who are younger on diagnosis and treatment). Studies of survivors
of childhood cancer point to the increased vulnerability of the group, and suggest
that greater efforts should be made to provide appropriate education and intervention
throughout, and beyond, treatment.
Adjustment problems have also been reported among children with diabetes, especially
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Psychological effects of chronic disease 89
those in poorer health and from dysfunctional families Qohnson, 1988). It has often
been argued that children in "better" diabetic control show improved adjustment
scores over those in "poor" control.
Recent work challenges this view. Work by Fonagny, Moran, Lindsay, Kurtz and
Brown (1987) and by Close, Davies, Price and Goodyer (1986) suggests that the
efforts to maintain good control may be so demanding that children become more
poorly adjusted (i.e. more depressed). Parents and doctors should be careful that
children are not expected to achieve unrealistic levels of glycaemic control.
The extent to which children with juvenile rheumatoid arthritis are affected appears
dependent both on the severity of the condition and age. Billings, Moos, Miller and
Gottlieb (1987) categorized 43 children as "severely" and 52 as "mildly" affected
(based on objective indices such as disease activity and functional status), and compared
them with matched healthy children in terms of psychosocial functioning. Parents
reported more psychological and physical problems for those with severe disease.
Among those with severe disease, older children experienced restricted social activities
both with family and friends. Similar results were reported by Ungerer, Horgan,
Chaitow and Champion (1988). Increased maladjustment and socizil isolation was
found among older children and adolescents. Both studies point to the need for help,
particularly in the early adolescent period, to enable those with arthritis to maintain
and develop social relationships and activities.
A series of reports concerned with children with sickle-cell anaemia yield conflicting
results. Lemanek et al. (1986) found no differences between a group with sickle-cell
anaemia and controls, and attribute this finding to careful selection of the control
group, especially in terms of appropriate social variables. In contrast, Hurtig and
White (1986) studied 50 children aged between 8 and 16 years and found that greater
maladjustment occurred among the older children. Effects were most pronounced
in terms of social maladjustment, and for boys compared with girls. Similar problems
in social maladjustment were reported by Morgan and Jackson (1986).
Hurtig, Koepke and Park (1989) used a number of measures of adjustment and
severity, and 2dso asked children to assess the intensity of pain associated with their
disease and frequency of painful attacks. The results support earlier findings in
suggesting greater maladjustment among adolescent boys than adolescent girls and
younger groups. Although global (objective) measures of severity did not predict
adjustment, frequency of pain experiences was inversely related to school performance.
Hurtig et al. (1989) suggest that children who experience frequent pain should be
monitored especisdly carefully.
Isolated reports on other disease groups have also been reported. Among survivors
of end-stage renal disease, maladjustment (as measured by distorted body image, social
immaturity and poor self-esteem) was directly related to the presence of visible
impairments (Beck, Nethercut, Crittenden & Hewins, 1986). Children with chronic
ren2il failure showed significant psychiatric maladjustment (Garralda, Jameson,
Reynolds & Postlethwaite, 1988) compared with healthy controls. Although more
miarked difficulties were reported among those with severe disease, those who were
less severely ill showed particular difficulties in school adjustment and loneliness.
Children with birth defects (cardiac disease, cleft lip or pallette, and hearing impairment)
showed behaviour problems two or three times the normal rate (Heller, Rafman,
Zvagulis & Pless, 1985).
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Christine Eiser
Studies involving rrme thm om disease group. Very few studies have involved comparisons
of adjustment between children with different diseases. Studies of this type are based
on the assumption that maladjustment is related to the specific demands of different
conditions, which are perceived to be more critical than the general restrictions common
to any chronic condition.
A longitudinal 5-year study by Breslau and Marshall (1985) suggests dear differences
in adjustment between children with different conditions. Those with disorders
involving the brain showed persistent and severe problems over the period, especially
in the areas of mental retardation and social isolation. Children with cystic fibrosis
showed improved adjustment over the period.
In contrast, Wallander, Varni, Babani, Banis and Wilcox (1988) argue that the
emotional demands of any chronic disease are more important predictors of adjustment
than the idiosyncratic demands of any particular disease. They found few differences
between children suffering from diabetes, spina bifida, haemophilia, chronic obesity
and cerebral palsy. The children were reported by their mothers to show more
behavioural and social competence problems than would be predicted from
standardized norms (Achenbach & Edelbrook, 1983). However, these data are based
purely on parental reports of behaviour. Comparing the scores of children with chronic
disease against standardized norms may be inadequate in terms of controlling for
social class and other differences between the ill and general population.
Summary
Children wih chronic disease are somewhat more likely than healthy children to
show maladjustment. The risk appears to increase for those with disorders involving
the CNS or physical disability. Parental perceptions of severity are more predictive
of a child's adjustment than physician-rated severity or estimates based on drug use.
There are indications that age affects adjustment. Younger children seem more affected
in terms of school tasks and achievement (Allen & Zigler, 1986; Rovet, Ehriich &
Hoppe, 1987); older children in terms of social adjustment (Ungerer et al, 1988;
Hurtig & White, 1986). Levels of adjustment also vary depending on the informant.
Reports based on parental responses generally indicate more maladjustment than
those based on teacher or physician reports, or those indicated by objective measures
(Kashani et al., 1988). While maternal reports of child behaviour are a useful and
valid source of information, they are likely to yield as much about mother-child
interaction as about the child's behaviour (Lancaster, Prior & Adler, 1989).
Undoubtedly, part of the confusion lies with the inconsistent selection of outcome
measures. However, in the absence of a theoretical framework to enable predictions
to be made about the kind of deficits experienced, this confusion is inevitable. More
importantly, few researchers have considered the implications of adjustment for the
child or family, either in terms of disease-related behaviour (e.g. compliance with
treatment) or for everyday coping and achievement.
disease "cope" effectively with both the disease and demands of treatment. This should
not result in an underestimation of the number and variety of stressful situations with
which the child must cope. Research concerned with these issues should be an integral
part of intervention programmes aimed at helping children with chronic disease. Work
by Band and Weisz (1988), Brown, O'Keeffe, Sanders and Baker (1986), and Compas
and colleagues (Compas, 1987; Compas, Malcarne & Fondacaro, 1988) gives some
indication of the situations found to be stressful by healthy children and the strategies
adopted. Although the work is based on theoretical models of adult coping (cf. Lazarus
& Folkman, 1984), it is applicable to children, given certain caveats (Compas, 1987).
This approach has been applied by Spirito and colleagues (Spirito, Stark & Tyc, 1989)
to work with chronicsdly sick groups. Tentative conclusions point to differences in
coping strategies used by boys and girls, and the influence of factors such as number
of hospital admissions, or age of diagnosis in determining type of strategy employed.
Spirito, Stark, Williams, Stamonlis and Alexan (1988) reported that children with
chronic disease referred for adjustment problems used different coping strategies from
children with chronic disease and no apparent adjustment problems.
Summer camps, too, are becoming extremely popular, both in providing children
with an opportunity to separate from parents while being well cared for, and aUowing
them to share experiences with peers (Drotar & Bush, 1985). Children with cancer
who attended summer camp (which involved no formal cancer discussions) showed
an increase in play activity 2 weeks later (but not at subsequent follow-up). Increased
frequency of social activity was found immediately after camp and at follow-up. Camp
experience was also related to increased interaction between family members (Smith,
Gotlieb, Gurwich & Blotcky, 1987).
Methodological issues
In line with this shift in focus of research has been a change in the type of
methodologies employed. There is some decrease in exclusive reliance on maternal
reports of behaviour. Instead, a number of standardized assessments of family
functioning are available, suitable for general use (Moos & Moos, 1981). Other
measures, to assess communication and family relationships (Hauser et al., 1986),
and observation studies of parent-child behaviour (Dunn-Geier, McGrath, Rourke,
Latter & D'Astons, 1986), have also been reported.
Empirical research
Effects on marital adjustment. An excellent review by Sabbeth and Leventhal (1984)
has done much to dispel the myth that parents of chronically ill children are more
likely to divorce than others. Perrin and MacLean (1988) concluded that the incidence
of divorce is not higher than among the general population. However, marital strain
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Psychological effects of chronic disease 93
can result from increases in stress that are imposed on parents in bringing up a
chronically sick child. Help to alleviate these specific stresses should not be seen as
indicative of gross family pathology.
Maternal health. Mothers and fathers differ in their perceptions of the demands and
goals of treatment. Mothers are more likely than fathers to respond in a distressed
manner and show depressive symptoms. However, maternal adjustment is affected
as much by her perceptions of the severity of the child's condition as by any objective
assessment of severity, as well as by her relationship with the father (Walker, Ford
& Donald, 1986). Blotcky et al. (1985) present convincing evidence that the child's
adjustment is affected by the responses of both parents.
Family interaction. A number of studies point to the deleterious effect of a chronically
sick child on family functioning. Mothers may be described as over-protective or
restrictive, and families are reported to show greater conflict, lack ability to t2ike
decisions, or may show rigid, enmeshed behaviours (Gustafsson, KjeUman, Ludvigsson
& Cederblad, 1987). However, such a negative view of family interaction is not
inevitable (Spaulding & Morgan, 1986).
More broadly based ecological models of family interaction are called for (Dadds,
Sanders, Behrens & James, 1987). These models suggest that parenting can be affected
by a range of contextual factors which are independent of moment-to-moment
encounters between parent and child. Parenting difficulties are not uniformly
distributed throughout the day; parenting skills are more difficult to apply in some
situations than others (DaddsVi al., 1987). Models that take account of the particular
demands of chronic illness in specific situations or contexts may better predict parenting
behaviour. Interventions based on ecological approaches can focus on problem
situations, while preserving satisfactory aspects of family dynamics.
suggests that siblings may be involved in excessive amounts of child care and other
domestic responsibilities, especially girls (Powell & Ogle, 1985; Lobato, Barbour,
HaU & Miller, 1987).
The focus of much of this work has been on identifying the potentially negative
aspects of illness on healthy siblings. However, there are no accurate estimates of
the extent of the problem in non-referred samples; neither are there real indications
of factors which determine maladjustment in siblings. Findings broadly parallel those
relating to children with chronic illness themselves: namely (1) there is no one-to-
one correlation between disease and adjustment; (2) msJadjustment is selective and
varies with age, sex and outcome measure employed; and (3) in interaction with other
variables, chronic disease in the family places healthy siblings at increased risk of
maladjustment (Drotar & Crawford, 1985).
More recent work has moved away from this deficit-centred perspective. Greater
attention is being paid to the sibling relationship itself. Siblings derive a great deal
of mutual benefit from each other. In particular, siblings socialize and educate each
other, mediate parental attention and provide a peer-like context for emotion and
power negotiation. Sibling relationships are among the most important precursors
to peer and later adult relationships (Hartup, 1983; Lamb & Sutton-Smith, 1982).
From this point of view, it is unfortunate that so much research has focused rather
narrowly on atypical sibling pairs and negative aspects of sibling relationships
(aggression, hostility, teasing) while ignoring the development of altruistic and empathic
behaviours. Neither does this approach take into account the interdependence between
sibling influence and other family factors (Brody & Stoneman, 1986; Daniels, Miller,
Billings & Moos, 1986). More direct observation studies are called for.
The extent to which healthy children are influenced by, or influence, their sick
siblings remains unclear. Dunn (1988) argues that this is partly due to the fact that
the chronically sick child can have a complex effect on family functioning generally,
and this in itself may influence the healthy child.
Epilogue
There have been impressive advances made in the medical care of children with
chronic disease. Despite this, they remain vulnerable in terms of physical health, and
behavioural, social and emotional maladjustment. Research has led to a greater
understanding of the impact of disease, of disease parameters that place children at
special risk, and of coping resources that are potentially valuable. It is time that this
accumulated knowledge was put to better use to provide sick children and their families
with tangible help and guidance.
Acknowledgement—The author is funded by the E.S.R.C., Swindon, U.K.
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