Clinical Psychology Review, Vd. 15, No. 5, pp. 4094?2,1995 Copyright 0 1995 Elsevier Science Ltd Printed in the USA. AU rights msetwd @n-7358/95 $9.50 + .oo
Pergamon
0272-7358(95)0002S2
PARENTAL
PHYSICAL ILLNESS AND CHILD FUNCTIONING
Lisa Armistead, Karla Klein, and Rex Forehand University
of Georgia
ABSTRACI’. Although physical illness among adults is pmvalent, fRu studies exist which examine the n&ztionship between panmtal i&ess and child jkctioning.We nuiewed the existing studies and tentatively unulud2 that an associatirm does exist. We also delineated va9iable.s that have been identified as qulajkrs of thk relationship, outlined dimenkms of physical illness which may be important in the ndationship, and discussed possible mechanisms for the association between physical iUn+?.r.r and child functioning. The need for mannsGanh and the consid eration of parental physical illness within a brvader family context is emphasized.
CHRONIC AND DEBILITATING physical illnesses are experienced by hundreds of thousands of Americans of all ages, socioeconomic levels, and races. Recent United States statistics indicate that medical conditions such as cancer, heart disease, chronic liver disease, cerebrovascular or pulmonary diseases, and diabetes are among the leading causes of death among adults (National Center for Health Statistics, 1994). Advances in medical technology have significantly affected individuals suffering from such conditions in terms of lengthened life span and increased independence from institutional medical care. Care for seriously ill patients is increasingly being provided in the home, where their medical conditions become an ‘ordinary feature of family life and development* (Cole & Reiss, 1993, p. viii). It is clear that the impact of serious illness is not only experienced by the patient, but also by those around him/her who are exposed to the various forms of psychological, economic, and social stressors which may accompany the illness. In particular, it is likely that members of a patient’s immediate family, who share the same home environment with their ill parent, child, or sibling, are influenced by such stressors. Adjusting to a serious illness may be particularly diflicult for families with children or adolescents, as these families are already faced with the continuous challenges of deveL opment and childrearing (e.g., Montemayor, 1983). Unfortunately, statisticsindicate that, within the age range of 25-44 years, a period during which a large percentage of
Correspondenceshould be addressedto Lisa Armistead,Departmentof Psychology,University of Georgia, Athens,GA 30602.
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Americans raise children, approximately 35% of deaths result from medical conditions such as those listed above (National Center for Health Statistics,1994). Furthermore, many parents in this age range experience illnesses (e.g., chronic fatigue syndrome, migraine headaches) which can be debilitating but are not typically associated with shorter life spans. Thus, a significant number of children in the U.S. must cope with stressesrelated to their parent’s physical illness as they proceed through the stages of development from early childhood to late adolescence. Unlike other personal and interpersonal factors which may influence parental functioning (e.g., depression, marital conflict), the impact of parental physical illness on children has received minimal attention in the literature. This is unfortunate as it is important to examine the extent to which parental illness is a stressor for children in order to ascertain if interventions are necessary and, if so, what should be the nature of the interventions and what behaviors should be targeted. It should also be recognized that a parent’s physical illness could potentially serve some positive functions within families, such as bringing family members closer together, helping children to learn responsibility and gain independence, or, with life threatening illnesses, prompting families to “make the most” of the potentially limited time which they have left together (Armistead & Forehand, 1995). However, it is likely that for most families, the stresses and difficulties outweigh the possible positive side effects of parental illness. The purpose of the present article is to review the recent literature on the relationship between parental physical illness and child functioning. Initially, we reviewed studies which fell into one of two categories based on the research design employed: between group and within group designs. We presented some conclusions from these two types of studies; however, the findings are tenuous as the literature is sparse and methodological problems abound. We next delineated the dimensions of physical illness (e.g., course, onset) and emphasized that variations on these dimensions may relate to child functioning. However, as again will become clear, studies have not examined the dimensions and, thus, there are little data available. Third, we turned our attention to the mechanisms that may operate to explain the effects of parental illness on child functioning. Not surprisingly, this area also has received little exploration and, therefore, we are left to propose hypothetical mechanisms and models. However, we proved that we are not shy in the absence of data as we emphasized the importance of studying parental illness within the context of parenting and other family stressors. Finally, we concluded with recommendations for future research. REVIEW
OF EXISTING
LITERATURE
Studies examining the relationship between parental physical illness and child functioning have utilized between groups and/or within groups designs. The former design, typically involving a comparison of a physically ill group and a non-ill group, allows the investigator to address the following question: Is parental physical illness associated with child functioning ? In the latter design, the relationship between selected variables (e.g., child’s age, dimensions of an illness) and child functioning is examined within a group of physically ill parents and their children. This design allows the investigator to address the following question: What are the factors which qualify the relationship between parental illness and child functioning? Obviously, the question addressed by each design is important and should be focused upon in reviewing the literature.
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Between Gmup Designs As we already have stated, only a handful of studies using between group designs have examined the relationship of parental illness to child functioning. These studies have primarily focused on the effects of a few types of physical illnesses, such as cancer, arthritis, diabetes, and chronic pain. In a study of school-age children with a mother or father suffering from terminal cancer, Siegel, Mesagno, Earus, Christ, Banks, and Moynihan (1992) found that these children had significantly higher levels of depression, anxiety, and behavior problems, and lower levels of self&teem and social competence than normal controls. This study is exceptional in that it overcomes the methodological limitations of a number of other studies which we will be discussing subsequently. Specifically, the sample size is larger than other studies, the investigators assesseda variety of areas of child timctioning, both child and parent report were obtained, and the child participants were not clinic-referred. However, a limitation of this study, as with most others in this literature, is that the participants included in the analyses were exclusively Caucasian which serves to limit generalizability. Two studies have examined functioning in children and adolescents who have a parent with chronic pain. First, M&ail and von Baeyer (1999) found that children (aged 9-17) of p arents with chronic pain received higher scores on a measure of delinquency, exhibited poorer general adjustment, and had poorer social skills than children of non-ill parents. Furthermore, the children of chronic pain patients had higher levels of somatic concerns and a greater number of headaches per month. Strengths of this study include the assessment of a variety of areas of child functioning through use of both objective and subjective measures, and the inclusion of more than one reporter per family. However, the study is limited by its relatively small sample size of 24 pain patients. Additionally, the ethnicity and socioeconomic statusof the sample were not reported, which limits the conclusions that can be drawn about the generalizability of the results. In a second study examining a chronic pain sample conducted by Rickard (1988), teachers reported that 8-12-year-old children whose parents were ill had significantly more behavior problems and exhibited more illness behaviors (e.g., somatic complaints, absenteeism, and visits to the school nurse) than children whose parents were not ill. An important advantage of this study is the use of teacher-reported data of the children’s behavior. Most studies we reviewed have utilized only reports made by the parents and/or the children. In contrast to these within-family reporters, teacher reports may offer a more objective view of the child. The Rickard (1988) study also benefits from the use of matching on several important variables, including the child’s age and gender and the family’s socioeconomic status.However, again, neither ethnicity nor SES of the sample is reported. In several between group studies, children with medically ill parents have been compared to children with psychiatrically ill parents and normal parents. Although the medically ill population is not the primary focus in these studies (it is usually included as a control group), useful comparative information can be gleaned from these studies. In one such study,Janes, Weeks, and Worland (1983) examined adolescent children of mothers or fathers diagnosed with either a mental disorder (schizophrenia) or a physical disorder (either tuberculosis or diabetes mellitus) and compared them to children whose parents had no physical or mental diagnosis. Data regarding various areas of socioemotional functioning and school behavior were collected from the
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adolescents’ high school teachers. Results revealed significant differences between adolescents in the physicallyill group and the non-ill group only in the areas of scholastic motivation and reasoning ability,with the physicallyill group performing more poorly in both areas. This study’s strengths include the use of teacher reports, as well as inclusion of nonCaucasian participants.However,only 20 adolescents with physicallyill parentswere included, which limits one’s abilityto drawsubstantialconclusions. In particular,the failure to find many signilicantdifferences between ado lescentsin the physicallyill and non-ill groups may have resultedfrom the sample size. The adolescentchiidren (aged 12-18) of parentswithdepression,rheumatoidarthritis, or no psychologicalor physicalillnesswere studied by Hirsch, Moos, and Reischl (1985) _Significantdifferencesemerged, such that adolescentsin the parent depressed group and the parent arthriticgroup reported lower self-esteemand fewer school act& ities than adolescentsin the non-ill parent group. Furthermore,resultsindicated that the functioningof adolescentsin the arthriticgroup wasnot significantlydifferentthan those in the depressed group in terms of psychologicalsymptoms, selfesteem, and school activities.This is an important finding, because adolescentsin the depressed group were functioning significantlyworse than the non-ill group in these areas. In other words,the functioningof adolescentsin the arthriticgroup appeared to be more similarto the depressedgroup than to the non-ill group. The authorsinterpretedthese resultsas suggestingthat the principalriskfactor for adolescentsmay be the “presence of parental disabiity or distress,rather than a specific parental diagnostic category” (p. 162). Again, thii studysuffersfrom a small sample size of only 12 physicallyill parents, as well as the use only of adolescentreports.A strengthof the studyis that minor% ties were representedin the sample. Two studies, utilizing a common population, have provided some support for the Hirsch et al. (1985) interpretationthat it is not a specific parental diagnostic catego ry which places children at risk. In both studies, comparisonswere made between the functioning of children whose mothers had either unipolar disorder,bipolar disorder, chronic illness (early-onsetinsulindependent diabetes or severe arthritis), or no history of psychopathology.In the first study, Hammen et al. (198’7) found that, across measures of psychologicaldiagnoses, psychologicalfunctioning, and academic functioning, significantdifferences were not observed between children (aged 8-16) of medically ill and affectivelydisordered mothers. However,differences were reported between the children of the affectivelydisordered parents and those of the non-ill parents in the areas of psychologicaldiagnoses and academic functioning. The phys ically ill group was not directlycompared to the non-ill control group. Examination of the means of each group for the different outcome variablesindicated that the children of the physicallyill parents were functioning somewhat better than those with affectivelydisordered parentsbut somewhat worse than those with non-ill parents. Anderson and Hammen (1993) recently reported a similar pattern of resultsin a longitudinal examination of the same population. They completed two sets of analyses. They firstcompared maternal illnessgroups on child functioning (behavior problems, social competence, academic functioning) over a 2-yearfollow-up period. These comparisons revealed significantmain effects which were accounted for by the dif ference between the children whose mothers had unipolar depression versus those with bipolar disorder, medical illness, or no illness. In their planned comparisons, Anderson and Hammen did not directlycompare the medicallyill group to the nonill group; however,based on the reported means, the medically ill group resembled the non-ill group. The second set of analyses examined whether the groups of offspring differed with regard to stabilityof problems (i.e., elevated scores across multi-
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IUntss
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ple years). These analyses were labeled “chronicity analyses” and were conducted “in order to examine the individual patterns of continuity of problems in psychosocial functioning” (p. 452). The results of the chronicity analyses indicated that children with medically ill mothers did not differ from children with depressed mothers in terms of behavior problems and academic performance. Again, no direct comparisons between the medically ill group and the non-ill group were reported. Nevertheless, examination of presented data indicate that the children of medically ill parents had scores on measures that fell in between those of children whose parents were affectively disordered and children whose parents were not ill. Thus, with regard to the stability of behavior problems and academic problems, children whose mothers were not ill had the lowest scores (indicating few problems), whereas children with medically ill parents had somewhat higher scores (indicating more prob lems) and children with depressed mothers had scores indicating the most problems within the sample. The results of the two studies by Hammen and colleagues (Anderson & Hammen, 1993; Hammen et al., 1987) suggest that parental physical illness may be associated with poorer child functioning when compared with children from families where neither parent is ill. Furthermore, in some instances, the extent of disruption in child functioning may resemble that which occurs in families where a parent is affectively disordered. These data provide some support for the suggestion by Hirsch et al. (1985) that the presence of parental disability, rather than the specific type of dis ability, may be responsible for placing children and adolescents at risk for poorer functioning. It is important to note that the two studies by Hammen and her colleagues are limited by their relatively small sample of medically ill women, as well as their inclusion of mostly Caucasian families who fell in the middle to upper socioeconomic brackets. In addition, no extrafamilial reporters were utilized in this study; instead, only data from mothers and children are available. In summary, only a total of six independent samples have been utilized in between group designs to investigate the impact of parental physical illness on child functioning. In only one case has the same type of illness, chronic pain, been examined with more than one sample. Furthermore, several studies combined multiple physical illnesses into one group, which introduces heterogeneity and potentially distorts conclusions. Finally, as noted, methodological limitations abound in these studies and significant difficulties exist with regard to the generalizability of their results. Considering the issuesjust delineated, it would probably be wise to forego drawing conclusions about the impact of parental illness on child functioning, however tentative they may be. However, we will forego our wisdom as one finding does appear to emerge across studies: Differences in some areas of child functioning are typically reported between the ill and non-ill groups. The areas of child functioning “affected” by parental physical illness vary substantially across and within studies. Thus, although we would tentatively conclude that parental illness appears to be associated with some difficulties in child functioning, the literature is currently too sparse and inadequate to reach conclusions about the relationships between specific types of illnesses and different areas of child functioning. Within Group Designs Although conclusions about the relationship between parental illness and child fimctioning are tentative at best, some investigators have attempted to address what may be considered a more advanced question: What factors qualify the relationship (tentative
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as it may be) between parental illness and child functioning? In a recent study, Gompas et al. (1994) examined the effects of cancer in a mother or father on children in three age groups: pre-adolescents, adolescents, and young adults. Results indicated that level of children’s stress response syndrome (akin to post traumatic stress disorder) and anxiety/depression symptoms diiered as a function of whether it was the mother or father who had cancer, as well as the child’s age and gender. A strikingly high level of distress was observed in adolescent girls whose mothers were diagnosed with cancer. It also was found that children’s symptoms of distress were related to appraisals of the seriousness and stressfulness of the cancer. However, children’s distress was generally unrelated to objective characteristics of the disease (e.g., stage of cancer, time since diagnosis). Thus, this study demonstrates the importance of several factors regarding the differential impact of parental illness, including the age of the child, gender of the child and the ill parent, and the child’s cognitive appraisals of the parent’s illness. In a related study examining adolescent functioning, Grant and Gompas (1994) found that girls whose mothers had cancer reported significantly more symptoms of anxiety and depression than girls whose fathers were ill or than boys whose mothers or fathers had cancer. The authors also discovered that girls with ill mothers reported more stressful events reflecting family responsibilities than girls with ill fathers or boys. Thus, it appears that increased levels of stressful family responsibilities experienced by girls with ill mothers may account for their increased distress. These findings provided valuable information about the direct and interactive effects of specific family characteristics such as gender of the ill parent and child. Roth of the studies (Gompas et al., 1994; Grant and Gompas, 1994) by Compas and his colleagues benefit from a relatively large sample size; however, generaliibility is uncertain as neither the ethnic make-up nor the socioeconomic status of the sample is reported. Within group research also has examined the association between dyadic relationships and child functioning in families affected by parental illness. Lewis, Woods, Hough, and Bensley (1989) collected data from the fathers of 6-12 year old children whose mothers were afnicted with either breast cancer, diabetes, or fibrocystic breast disease. Results revealed relationships among a number of variables, including the frequency of illness demands, family coping, quality of the father-child relationship, and marital adjustment. Importantly, a higher quality of father-child relationship and better marital adjustment were associated with higher levels of prosocial functioning in children. Thus, although this study is limited by its exclusive reliance on father reports and the use of a mostly Caucasian, middle to upper class sample, it reveals two important factors with regard to child functioning when a mother is ill: the quality of the father-child relationship and marital adjustment. In a recent study, Lewis, Hammond, and Woods (1993) tested a theoretical model of family functioning in families with mothers experiencing breast cancer. Data were collected from mothers and fathers of school-age children regarding constructs similar to those utilized in the Lewis et al. (1989) study. Path analyses were conducted for the reports of both parents, yielding a core set of findings similar to those of Lewis et al. (1989) study. In this case, more frequent illness demands were associated with higher levels of parentai (both mother and father) depressed mood, which was negatively related to marital adjustment. Lower levels of marital adjustment were associated with poorer family coping behavior. Higher levels of family coping behavior, as well as higher quality of the father-child relationship, were associated with better child functioning. Along with the study by Lewis et al. (1989)) thii study indicates that family coping, marital adjustment, and the non-ill parent(father)+hild relationship are
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particularly important with regard to child functioning when a parent is ill. A strength of this study is the authors’ attempt to simultaneously examine multiple variables through the use of path analysis. However, considering the type of data analysis utilized, the study is limited by a small sample size, as well as the exclusive use of a well educated, middle class sample. Conrad and Hammen (1993), utilizing the same sample (with its noted limitations) previously described in the Hammen et al. (1987) and Anderson and Hammen (1993) studies, examined protective factors for the children in each of their four groups, including the medically ill group. The authors defined protective factors as those which moderate the effect of a stressor such that individuals are better able to adapt to that stressor than they would have if the protective factor was absent. Positive selfesteem, academic success, social competence, social support, and positive perceptions of maternal parenting behaviors were all associated with reduced rates of psychological diagnoses. Interestingly, these attributes appeared to be protective factors for children in all four groups, suggesting that their infhtence is not confined to distressed families or to families experiencing a particular type of distress (i.e., depressed mother vs. medically ill mother). Lastly,Jamison and Walker (1992) conducted within group analysesof chronic pain patients’ children, finding that children’s somatic symptoms were positively correlated with factors such as their parent’s pain intensity ratings and emotional distress, as well as the presence of other family members in pain. Children who frequently reported pain were more likely to have a parent with a higher degree of disability who demonstrated more pain behavior and emotional distress. This study identifies two new variables which appear to impact child functioning (i.e., parental emotional distress and presence of obvious physical symptoms in the parent). However, the investigation utilized only mother data, and mothers often were the patient as well as the reporter. The six within group studies reviewed have identified several variables which are associated with functioning in children with a physically ill parent These variables are summarized in Table 1 under three categories: child, parent, and family characteristics. Considering the variety of parental illnesses examined across studies, and the Eactthat each variable usually has been examined and found to be associated with child t?mctioning in only one or two studies, conclusions again must be tentative. In general, it
Associated with child TABLE 1. child, Parent, and Family -ristics Functioning in Families with a Physically I11Parent DemographicVariables
PsychologicalVariables
Child characteristics
Age Gender
Appraisalof illness Selfesteem Socialsupport Perceptionsof parenting
Parent characteristics
Gender
Emotionaldistress Physicalsymptoms
General FamilyCharacteristics
Increased child responsibilities Familycoping
Relationships Parent-hild Marital
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appears that demographic, psychological, and interpersonal variables may play a role in children’s responses to the illness of a parent. More work such as that of Lewis et al. (1993) is needed in which the relationships among multiple tiables are explored. Furthermore, it is important to keep in mind the findings of Conrad and Hammen (1993), who reported that the same protective factors appear to operate in families with physical illness, affective disorders, and no illness. Thus, we may be able to draw upon work with other populations when exploring the relationship of personal and family variables to child functioning in families with a physically ill parent. DIMENSIONS
OF ILLNESS
Physical illnesses can vary on a number of dimensions, both between different types of illnesses and within the course of one illness over time. As previously stated, no studies exist which systematically compared children whose parents were experiencing different levels of a particular dimension of physical illness (e.g., the effect of parents differing on degree of incapacitation from arthritis on child adjustment). This is not surprising as there have not even been studies comparing different illnesses which may lend some insight into the issue of the influence of physical illness dimensions on children (e.g., comparing children whose parents have AIDS vs. those who have arthritis, which could result in a comparison of the outcome dimension). Thus, the next section delineates some of the critical dimensions of the physical illness. At a minimum, we hope that this will make clinicians and researchers who are interested in the role of family stress and child functioning aware of some of the aspects of a parental illness which may influence child adjustment. Our more lofty goal is to illuminate the dimensions of physical illness so that they will receive scientific study in the future. We utilize Rolland’s (1987) psychosocial typology of illness to organize the relevant dimensions which include onset, course, outcome, and degree of incapacitation caused by the illness. It is important to note that, although we describe these constructs categorically, each of these dimensions should be considered along a continuum. When the onset dimension is considered, a number of factors should be taken into account. Rolland (1987) conceptualizes onset as either acute or gradual. Diseaseswith an acute onset, such as a stroke, require the family to accomplish several adaptations in a short period of time. Families with considerable flexibility and crisis management skills cope better with acute onset illnesses than families lacking in these resources, and there is some indication that family coping is related to child functioning (e.g., Lewis et al., 1989). In contrast, gradual onset diseases allow more time for family adjustment and, thus, in some ways may be less stressful for parents and their offspring. A second important aspect of illness onset is the ages of both the parent and the child at the beginning of the disease. Given developmental differences in areas such as cognition and emotion (Forehand & Wierson, 1993), young children, for instance, are likely to react very differently to a parent becoming ill than adolescents would react. In fact, preliminary work by Compas et al. (1994) revealed age differences in terms of the child’s reaction to parental cancer. Specifically, adolescent girls displayed more symptoms of anxiety and depression than either preadolescents or young adults. Rolland (1987) suggests that, in addition to the dimension of illness onset, the course of illness should be considered when exploring the impact of parental physical illness on child functioning. He posits that the course of diseases may have one of three forms. The first is relapsing or episodic (e.g., epilepsy) and is characterized by
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exacerbations or changes over time with respect to the effects of the illness on the parent. With an episodic course, the family is strained due to frequent transitions between stable periods, with low level or no symptoms, and periods of symptom flareups. Strain also results from uncertainty about whether the parent will be symptomatic or not. Thus, it may become diicult for a parent to plan activities with her/his child and to parent consistently. The second type of course is one of constancy, in which an initial event occurs and then the disease stabilizes, at least biologically (Rolland, 1987). Spinal cord injuries are an example of this type of course. The advantage of this course for families is that the disease is fairly predictable. However, it may be particularly challenging because of its unrelenting nature in terms of the ever-present demands on lamilies to manage the illness. In contrast to the episodic challenges, constancy may not disrupt the consistency of parenting but rather disrupt parenting altogether. The last type of course is progressive, which manifests as a persistent downhill course. AIDS is an example of a disease with this course. Families faced with a member suffering from a progressive illness must be able to cope with the changing nature of the disease as the individual becomes increasingly ill. This certainly will require flexibility and, perhaps, anticipatory grieving. Depression of both the ill parent and the non-ill parent seems quite likely with this course. In light of evidence indicating that parental depression may disrupt parenting (Forehand, McCombs, & Brady, 1988)) this course may influence child functioning as well. Rolland (1987) also points to outcome or prognosis as an important dimension. Specifically, he posits that illnesses, such as some cancers which have a deteriorating course and fatal outcome, will impact a family (including children) differently than diseases which do not result in significantly impaired health and/or death. An important variable within the outcome dimension is the death threat. One might expect different child responses to parental illness when it will result in the parent’s death (e.g., AIDS) versus when no threat of death exists (e.g., chronic pain). Furthermore, shortand long-term responses may differ within either of these outcomes. Lastly, degree of incapacitation is considered to be an important dimension of physical illness. Incapacitation may occur in several different areas of functioning, including cognition, sensation, movement, energy production, disfigurement, or social stigma. Rolland (1987) suggests that the extent, kind, and timing of incapacitation has serious implications for the amount of stress imposed upon the family. Cole and Reiss (1998) point to brain involvement, or level of cognitive impairment, as a critical variable to consider when exploring the impact of parental physical illness on families. A number of diseases (e.g., AIDS) may result in declining parental cognitive functioning which, through changes in parental behavior, may affect children in any of a variety of ways. Along with cognitive impairment, the degree of parental physical impairment is a dimension which may be strongly related to child functioning. Initial exploration by Jamison and Walker (1992) indicated that higher degrees of physical disability in a parent resulted in behavior which may indicate early somatization in the child. In summary, there are a number of dimensions which are important to explore in an attempt to gain insight into the impact of parental physical illness on children. As noted, none of these dimensions has received sufficient attention in the literature. To date, no one has explored how the various dimensions may interact with one another. Furthermore, it is important to note that a parent’s position on these dimensions is likely to interact with child variables (i.e., age), resulting in different levels of child functioning.
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MECHANISMS, MODELS, AND THE BIGGER PICTURE A primary goal of psychological science is to understand human behavior. This implies that we want to progress from simply demonstrating a relationship between two variables (e.g., parental physical illness and child functioning) to discovering why the relationship exists. Furthermore, only by answering the “why questionn is it possible to devise meaningful and effective intervention programs. This “why question” is answered, at least in part, by identifying the mechanisms by which one variable (parental physical illness) influences another variable (child functioning). Unfortunately, much work, such as the research which has been called for repeatedly in earlier sections of this paper, is needed before serious attention can be given to mechanisms. For example, we have emphasized that the degree of confidence one can have in whether a relationship actually exists between parental physical illness and child functioning is tenuous at best. Thus, it is debatable whether the study of mechanisms should be started before it can be concluded, with some degree of confidence, that a relationship exists. Nevertheless, as with our previous thoughts on dimensions of illness, we believe it is appropriate to begin an exploration of the mechanisms which may account for the parental physical illness-child functioning relationship. Some mechanisms, which originate from our own thoughts and from the writings of Peters and Esses (1985), Issel, Erseck, and Lewis (1990), Anthony (19’70), and Reiss, Steinglass, and Howe (1993), are presented in Table 2. This Table includes challenges sometimes faced by families in which a parent is chronically ill that may help to explain why the parental physical illness-child functioning relationship exists. We would propose that disrupted parenting is a key mechanism for explaining the relationship between parental physical illness and child functioning. However, parenting has to be defined mther broadly for it to take on significance when considering physical illness. It certainly includes traditionally measured constructs, such as support, reinforcement, and discipline. However, other constructs, such as changes in household routines (e.g., irregular meals, bedtime and chore assignments), unintentional ignoring of the child because of the illness demands, and parental absence or unavailability because of the illness, also must be considered under the rubric of parenting. Disrupted parenting alone is probably necessary, but not sufficient, to understand why parental physical illness may lead to poor child functioning. That is, all families obviously function within a broader context than parenting. In particular, factors such
TABLE 2. Potentialhkhabms Accountiug for a Relationship Between Parental Physid Illness and Child Functionhg Disruptionof parenting Reduced parentalsupportfor the child Fewer efforts at diiipliie Neglect of child due to reorganization of family around illness Changes in family routines Parental absence Parental depression Interparental conflict Parental divorce
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as parental depression, conflict between family members, and, perhaps ultimately, divorce may partially explain disrupted child functioning in families with a physical illness. There is a large body of literature supporting the relationship between each of these family variables and child functioning (e.g., Emery, 1988; Emery & Forehand, 1994; Forehand et al., 1988). Furthermore, disrupted parenting has been seen as a leading mechanism by which each of these variables operate to influence child functioning (e.g., Emery, 1988; Emery 8cForehand, 1994; Forehand et al., 1988). We postulated that a parental physical illness may either directly disrupt parenting or may indirectly disrupt parenting through increased parental depression and/or within family relationship conflict between parents, siblings, or parents and children. At least some types of such conflict (e.g., interparental) may eventually lead to divorce, which itself disrupts parenting (Emery 8c Forehand, 1994). A schematic of this model is presented in Figure 1. Let us make two additional comments on the model in Figure 1. First, we conceptualize physical illness, depression, relationship conflict, and divorce as family stressors which have, in reality, reciprocal and transactional relationships with each other. This idea is depicted in Figure 2. Thus, although physical illness may initially “lead to” relationship conflict., relationship conflict can then lead to further deterioration in physical health (But-man & Margolin, 1992). The process of psychological science appears to function in such a manner that we study each variable alone and “build a field of research findings” around that variable. However, only when we put the parts of the family back together into a whole and examine the reciprocal relationships such as those implied in Figure 2 will we understand the child in the context of the family. Regarding parental physical illness, research must first occur on thii variable alone. This is a necessary step in forming an initial foundation for further exploration. However, we must not stop at that point, as illness must be examined in the context of other family variables which influence and are influenced by illness. Our second comment about Figure 1 pertains to the right side of the model: child functioning. This is a global term which needs to be examined in a more fine-grained fashion. For example, whereas we believe that the proposed model can account for child functioning in general, some child behaviors may be lesswell explained than others. For instance, although externalizing problems (e.g., aggression, noncompliance) may be quite well explained by the model, child somatic complaints may be better
Relationship / Conflict
Parental Physical Illness
Parental Divorce
t
Disrupted Parenting +
Child Functioning
Parental Depression FIGURE 1. Schematic Model of how Parental Physical llhuss ChildFunctioning.
lnfluenw
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Parental Physical 4 Illness
)
Relationship Conflict
A
A
1
V Parental Divorce
Parental Depression 4
)
FIGURE 4. Reciprocal Influences of Four Family Stressors.
explained by some other explanation such as modeling (i.e., a child imitates the physical complaints of her/his ill parent). Ultimately, different mechanisms (and models) may explain diierent child behaviors in the parent physical illness-child functioning relationship FUTURE DIRECTIONS Obviously, throughout this paper we have focused on the future in our examination of the parent physical illness-child functioning relationship. This has been necessary as there is little existing literature at the current time. The purpose of this section is to integrate and present our thoughts about future directions. Our approach to the discovery of “psychological knowledge” has been and will continue to be based on a quantitative methodology. However, when a field of study is in its infancy, as is certainly true with the parental physical illness-child functioning literature, case histories can provide a rich source of ideas. Excellent case descriptions of the influence of chronic physical illness on individual and family life have been provided by numerous writers. For example, two recent accounts are the Kenny (1994) account of living with chronic fatigue syndrome and the Courtenay (1994) description of family life with hemophilia and HIV. These authors provide vivid pictures of changes in lifestyle with illness onset, despair and depression, searching for diagnoses and rapid cures, frustration with physicians, and eventual acceptance of the illness and learning to cope as best as possible. What is clear in these case histories is that whole families are affected by the illness of one of its members but, equally important, families serve as a critical resource for the ill individual. There is much to be gleaned from such accounts which then can be posed as research questions and experimentally examined. Quantitative research efforts in the relationship between parent physical illness and child functioning need to address a number of questions, probably in a step wise fashion. First, is parental physical illness associated with child functioning? Unfortunately, as we have stressed throughout this paper, this question has not been definitively answered. Second, do different types of physical illnesses have similar or different influences on child functioning? This is an important question to answer in terms of ascertaining if we can develop a “science of physical illness” or whether we have to explore each illness separately. Work addressing this question will lead into the third level of research which is needed: What are the critical dimensions of illness which negatively influence child functioning? Addressing this
Parental Physical Illness
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question will, then, begin to raise questions about mechanisms which need to be addressed. Once the mechanisms which negatively influence children have been identified, we can begin making comparisons between parental physical illness and other types of parental stressors (e.g. depression, interparental conflict) which may influence child functioning. Perhaps the conclusion reached by Hirsch et al. (1985) will hold up across various parental disabilities. That is, perhaps the risk factor for children is not the particular type of parental distress experienced but, rather, that there is stress in the parents’ lives which negatively influences children in the family. Alternately, different types of parental distress may have different influences because the mechanisms operating are not the same. In any case, research in this area will eventually lead into the bigger, and perhaps most important, issue: How does parental physical illness influence children within the context of other family stressors? beyond the type and sequence of research efforts which should be developed in this area, it also is important to employ adequate experimentation. This involves having adequate sample sizes so that conclusions can be drawn with increased certainty. Thus far, there have been as many statistically “nonsignificant” as “significant” results in studies. The non-significant findings may well have resulted from inadequate power, which can be increased by larger sample sizes. Additionally, it is imperative to study the questions we have raised throughout this paper with populations that have been virtually ignored thus f& nonCaucasians. Furthermore, extrafamilial reporters, such as teachers, as well as alternatives to penand-paper measures, such as behavioral observations, should be utilized. Eventually, longitudinal designs will have to be employed in order to move beyond ‘associations” between parental physical illness and child functioning to data which are more congruent with causal interpretations (i.e., parental physical illness leads to poorer child functioning). Finally, it is important in our assessmentsto focus not only on child prob lem behavior but also on prosocial behavior. Many of us as child clinicians are only slowly beginning to move beyond our microscopic examination of problem behaviors. As one of the authors noted years ago, if elimination of problem behavior was our only goal, a hammer would be a great therapeutic device. Our goals should be to increase positive child functioning and to seek factors which promote resilience. Both of these imply the necessity to measure prosocial skills of children. Our final comment is that we feel certain types of parental illness deserve special attention at this time in our society. In particular, the AIDS epidemic is now a leading cause of death among women in the child bearing age and, in fact, many women who are HIV positive have children (Armistead & Forehand, 1995). Years of physical illness, to which their children will be exposed, will precede the death of these women. Beyond coping with their illness and parenting their children, these women face a number of issues which are unique to their HIV illness, such as the stigma of being HIV positive, whether to tell their child and others about the illness, and planning for the child’s future after their death. There has been no research examining these critical issues. While research with all physical illnesses is needed, our perception is that AIDS is a critical one at this point in time in our society.
Acknoww - The supportof the Universityof Georgia’sInstitutefor BehavioralResearch, the Centers for DiseaseControl and Prevention,and the William T. Grant Foundation is gratefully acknowledged.The opinions expressedin the articleare only those of the authors.
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