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Journal of Child and Family Studies [jcfs] ph102-jcfs-368695 February 1, 2002 19:46 Style file version Nov. 19th, 1999

Journal of Child and Family Studies, Vol. 10, No. 4, December 2001 (C© 2002) pp. 405–418

Distinguishing Caregiver Strain from PsychologicalDistress: Modeling the Relationships Among Child,Family, and Caregiver Variables

Ana Maria Brannan, Ph.D.,1,3 and Craig Anne Heflinger, Ph.D.2

Although both have been used in studies of the impact of mental illness on thefamily, the constructs of caregiver strain (often referred to as “burden of care”) andpsychological distress have not been clearly distinguished. The vagueness sur-rounding these constructs, and the lack of a cohesive conceptual framework forunderstanding how they relate, leads to contradictory interpretations of results.This compromises the building of the knowledge base needed to develop and eval-uate interventions to support families as they struggle to meet the needs of theirchildren with emotional and behavioral challenges. We utilized the ABCX Modelas a framework for understanding caregiver strain and its relationship to psycho-logical distress. Structural equations modeling was used to test the hypothesizedrelationship between caregiver strain and psychological distress, as well as therole of key child and family variables. These included child symptoms, stressful lifeevents, social support, family functioning, and material resources. Our findingsindicated that caregiver strain and psychological distress, although related, havedistinct correlates and different implications in the family context.

KEY WORDS: caregiver strain; psychological distress; burden of care; family factors; stress andcoping.

It is well-established that families caring for relatives with emotional, behav-ioral, or mental disorders experience considerable strain associated with their care-giving responsibility (e.g., Hoenig & Hamilton, 1967; Marsh, 1992; McDonald,Poertner, & Pierpont, 1999). In multiple studies, families have reported increased

1Research Associate, Institute for Public Policy Studies, Center for Mental Health Policy, VanderbiltUniversity, Nashville, TN.

2Associate Professor, Department of Human and Organizational Development, Vanderbilt University,Nashville, TN.

3Correspondence should be directed to Ana Maria Brannan, 2529 Lauderdale Dr., Atlanta, Georgia30345; e-mail: [email protected].

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1062-1024/01/1200-0405/0C© 2002 Human Sciences Press, Inc.

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406 Brannan and Heflinger

financial strain, disrupted family and social life, limits on personal freedom andtime, and other negative effects as a result of caring for members with a va-riety of special needs including chronic illness, dementia, and mental illness(e.g., Braithwaite, 1992; Schene, 1990). Caring for minor children with emo-tional and behavioral disorders presents similar challenges (Baker & McCal, 1995;Brannan, Heflinger, & Bickman, 1997; Farmer, Burns, Angold, & Costello, 1997;Yatchmenoff, Koren, Friesen, Gordon, & Kinney, 1998).

Relatively little is known about what factors contribute to, or protect fami-lies, from caregiver strain. There is sufficient evidence that caregiver strain andparenting stress are associated with the patient’s symptomatology (e.g., Baker &McCal, 1995; Noh & Turner, 1987; Reinhard & Horwitz, 1995). The role of otherpotentially associated factors, in particular family variables, remains relativelyunexplored.

Caregiver strain has been primarily conceived as having two dimensions.Objective caregiver strain captures the observable negative occurrences and con-straints resulting directly from the relative’s problems (e.g., difficulties with neigh-bors and police, disrupted family relationships). Subjective caregiver strain refersto the caregiver’s feelings related to those occurrences (e.g., stigma, guilt, anger,and worry). Although related, the subjective and objective dimensions of caregiverstrain appear to be distinct in that they have separate sets of correlates and sharelittle common variance (Montgomery, Gonyea, & Hooyman, 1985; Thompson& Doll, 1982). How best to operationalize the distinction between objective andsubjective strain has been the subject of some debate. One position is that thenegative events resulting from the relative’s illness are themselves burdensome,and that the measurement of objective strain should include the recording of suchnegative events, irrespective of the caregiver’s perception of those events (Platt,Weyman, Hirsch, & Hewlett, 1980). Others hold that caregiver strain should referonly to the caregiver’s subjective perceptions and reactions related to their care-giving function and associated events (Maurin & Boyd, 1990; Stommel, Given, &Given, 1990).

The debate over the conceptualization and operationalization of caregiverstrain is further complicated by the confusion surrounding the distinction betweencaregiver strain and psychological distress. This is evidenced in many arti-cles in which the terms “burden” and “distress” were used almost interchangeably(e.g., Maurin & Boyd, 1990; Jacob, Frank, Kupfer, & Carpenter, 1987). An impor-tant subset of studies included both a measure of caregiver strain and a measureof psychological distress. In some cases, distress was seen as the outcome vari-able with caregiver strain seen as a risk factor for psychological distress, that is,caregiver strain was another stressor that contributed to distress (e.g., Anthony-Bergstone, Zarit, & Gatz, 1988; Noh, & Turner, 1987). In other studies, distresswas an explanatory variable contributing to caregiver strain; depressed caregiversinterpreted their caregiving role as onerous (e.g., Stommel et al., 1990; Vitaliano,Russo, Young, Becker, & Maiuro, 1991).

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Distinguishing Caregiver Strain from Psychological Distress 407

In addition to problems related to the conceptualization of the caregiver strainconstruct, the field also lacks the strong theoretical framework needed to guide con-tinued research and the development of interventions to support families. Observershave noted the stress and coping literature as a promising theoretical foundationupon which to build a model of caregiver strain (Schene, 1990; Maurin & Boyd,1990). For example, McDonald and colleagues (1997, 1999) used the ABCX model(McCubbin, & Patterson, 1982) to study stress among caregivers of children withsevere emotional and behavioral disorders. None of these models, however, attemp-ted to clarify the distinction between caregiver strain and psychological distress.

We offer a conceptual model of caregiver strain among families with childrenand adolescents who have emotional and behavioral disorders. The purpose of thismodel is to frame continued study of caregiver strain in an attempt to improveunderstanding of the risk factors that exacerbate it, and the family strengths thatprotect against it. This knowledge is needed to guide the development and eval-uation of interventions that address the concerns of families and caregivers andultimately improve the therapeutic context for children with emotional or behav-ioral problems. In addition, such a framework is needed to guide future familyresearch in this area.

Given the lack of consensus on the conceptualization of caregiver strain, webegin this discussion with a working definition. We acknowledge both the objec-tive and subjective consequences of caring for a child with emotional or behavioralproblems. Objective caregiver strain, as used in this paper, refers to the extent towhich caregivers perceive as problematic the observable negative events relatedto their children’s emotional or behavioral difficulties. Subjective caregiver strainrefers to the unobservable emotional impact of caregiving. This conceptualizationis based primarily on two positions. One is the belief that individuals character-ize caregiving demands differently and have different thresholds at which eventsbecome onerous (Reinhard, & Horwitz, 1995). The second is the evidence thatobjective and subjective caregiver strain, however operationalized, are related butdistinct constructs (Brannan et al., 1997; Montgomery et al., 1985; Thompson &Doll, 1982).

The model presented here (see Fig. 1) is based on McCubbin and Patterson’s(1982) Double ABCX, modified by Heflinger, Northrup, Sonnichsen, and Brannan(1998). It depicts caregiver strain and psychological distress as the crisis (X) thatresults from the family processing stressor events (A) through the resources andstrengths available to the family for dealing with those events (B), and the family’sperceptions of those events (C). Also included are changes in those elementsover time, depicted as a, b, c, and x. When the ultimate outcome is an adaptiveresponse, the parent experiences no or manageable levels of caregiver strain andpsychological distress. But when the response is maladaptive, excessively highlevels of caregiver strain and psychological distress are experienced and can resultin additional stressors (e.g., child maltreatment, out-of-home placements, difficultyfulfilling parental responsibilities, divorce, etc.).

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Fig. 1. Conceptual Model for Caregiver Strain, adapted from McCubbin and Patterson (1983)and Heflinger, Northrup, Sonnichsen, and Brannan (1998).

Because our focus is caregiver strain, Fig. 1 divides stressor events into twogeneral categories: (1) the child’s problems and related symptoms and (2) otherstressful life events that the family experiences. Both types of stressors can beexperienced simultaneously as well as over time, leading to pile-up. The resourcesand strengths (box bB) that families may bring to bear in dealing with these stres-sors may include access to professional help for the child, availability of friendsand family to rely on, and sufficient time and material resources, among others.Family perceptions of the events (cC) may include parents’ expectations aboutlife, their children, and themselves; attributions about what causes bad things tohappen and about how emotional or behavior problems develop; attitudes aboutmental health services; and perceptions of what people outside of the family willthink and how they will react. A complete model would also include the family’sactive response to the stressors (e.g., seeking services, pursuing social support,or utilizing other family resources). The use of mental health services, as an ac-tive response, has been studied elsewhere using a modified Double ABCX model(Brannan, 2000/2001). This paper focuses on the relationship between caregiverstrain and caregiver psychological distress; the family’s active response and useof coping strategies is not discussed here.

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In this study, this conceptual model served as the basis for further refine-ment of the caregiver strain construct and exploration of related family factors.Specifically, the relationship between caregiver strain and caregiver psychologicaldistress was explored in the context of other family characteristics. Based on themodel in Fig. 1 and our assertion that caregiver strain and caregiver psychologi-cal distress are separate constructs, we hypothesized that the primary predictor ofcaregiver strain would be the child’s emotional or behavioral symptoms and thatthe best predictor of caregivers’ psychological distress would be other stressful lifeevents. No direct relationship was expected between the child’s problems and thecaregivers’ psychological distress or between caregiver strain and other stressfullife events. However, child symptoms and life stressors were also expected to berelated to each other. Only a small relationship was expected between caregiverstrain and caregiver distress when the influence of the other family factors wasaccounted for. Finally, family strengths and resources, such as the family’s levelof functioning, material resources available, and social support, were expected torelate to both caregiver strain and caregiver psychological distress (i.e., the moreresources the family had, the lower caregiver strain and distress were expected tobe) but with relatively weaker associations.

METHODS

Sample

The data used in this study were collected as part of an evaluation of theFort Bragg Evaluation Project (FBEP) (Bickman et al., 1995). Secondary dataanalysis was performed on a subset of the larger FBEP sample. All families inthe sample had children who were receiving mental health services at the time ofdata collection. In this sample, 974 caregivers completed the first data collectionpoint. Because data from the first 392 cases recruited into the study had been usedpreviously to examine the validity of the Caregiver Strain Questionnaire (CGSQ:Brannan et al., 1997), those cases were excluded from the analyses reported here.Of the remaining 582 cases, those missing more than 15% of the data for a givenindicator or subscale were dropped from the study. This procedure eliminatedan additional 68 cases leaving 514 (88%) families in this study. The remainingmissing data were imputed as the mean of the rest of the items in that indicator.

The majority of the children in the sample were boys (61%), and most werebetween the ages of 12 and 15 (mean age was 13). Caregivers who served asrespondents in this study were primarily women (83%) and were between the agesof 20 and 62. The majority of caregiver respondents were white (70%), and almostall had completed high school (94%). Approximately half had family incomesbetween $20,000 and $40,000. Eighty-nine percent of the households includedtwo adult caregivers.

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Measures

The measures used in this study were collected from the child’s primarycaregiver in the form of self-administered questionnaires. Note that high distress,caregiver strain, child symptoms, and family functioning scores indicate moreproblems in those areas, while high social support and material resource scoresindicate having more of those resources.

Child and family measures were used to represent the stressors (aA) in themodel. The two broad band syndrome raw scores (i.e., internalizing problemsand externalizing problems) of the Child Behavior Checklist (CBCL: Achenbach,1991) were used to measure child symptomatology. The CBCL has been usedextensively and has demonstrated good reliability and validity. The Family Inven-tory of Life Events (FILE: Olson et al., 1982) was included in this study as anindex of life stressors experienced by families (e.g., illnesses, job loss, divorce,finances and business, life transitions). The FILE was modified to reflect eventsover the last six months. In the FBEP sample, the items of the FILE were shownto be sufficiently internally consistent when used with this sample (Cronbach’salpha= .77).

Three family variables were included in this investigation to represent fam-ily resources and strengths (bB). Family functioning was measured with four ofthe seven subscales of the Family Assessment Device (FAD: Epstein, Baldwin,& Bishop, 1983). The subscales used as indicators of family functioning in thisstudy were Problem Solving, Communication, Roles, and General Functioning.All of these subscales demonstrated adequate internal consistency with this sam-ple (Cronbach’s alpha ranging from .71 to 88). To measure the material resourcesavailable to the family, the Family Resource Scale was used (FRS: Dunst & Leet,1987). The FRS assesses the adequacy of the family’s material resources from therespondents’ point of view. Taken together, the items of the FRS were internallyconsistent (alpha= .95) in this sample. Finally, the social support available tothe family was assessed using the two sections of the Family Index of Regen-erativity and Adaption—General (FIRA-G). Items from the Relative & FriendSupport Index (McCubbin, Larsen, & Olsen, 1982) and from the Social Sup-port Index (McCubbin, Patterson, & Glynn, 1982) were reorganized to createtwo new summary scores. One was the mean of questions dealing with relianceon family and friends, and the other was a mean of the questions about thecommunity.

Two caregiver measures were included to represent the xX factor, crisis. TheBrief Symptom Inventory (BSI: Derogatis & Meliseratos, 1983) was designedto assess psychological symptoms quickly and reliably. When compared to thesamples used to norm the BSI (Derogatis, & Meliseratos, 1983), the caregiverswho participated in this study had meanT-scores above those reported for the non-patient community sample but below those of the outpatient sample. In the current

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study, items from the BSI’s Global Severity Index were divided evenly to createtwo indicators of caregiver’s psychological distress.

Finally, the Caregiver Strain Questionnaire (CGSQ) was developed to assessthe extent to which caregivers of children with emotional and behavioral disor-ders experience difficulties, strains, and other negative effects as the result of theircaregiving responsibilities. Findings from previous research with the CGSQ havesupported the existence of three related dimensions of caregiver strain (Brannanet al., 1997). The objective strain dimension captured the extent to which nega-tive events or consequences related to the child’s disorder have been a problemfor the family, such as trouble with neighbors, disrupted family relationships,routines, and social activities, and loss of personal time. The subjective external-ized strain dimension included negative feelings directed toward the child suchas anger, resentment, or embarrassment. Another dimension, subjective internal-ized strain, involves negative feelings directed inwardly such as worry, guilt, andfeeling tired.

Data Analysis

To test the hypothesized relationships among caregiver strain, psychologicaldistress, and other child and family variables, structural equations modeling wasperformed (Bentler & Wu, 1993). Structural equations modeling allows relation-ships among several variables to be explored simultaneously and helps correctfor measurement problems. Given that so many of the family variables of interestin this study were correlated (Heflinger et al., 1998), this approach permitted theexamination of the relationships among the variables of greatest interest, whileaccounting for their relationships with, and relationships among, other variablesin the model.

We used maximum likelihood estimation to test a general structural modelthat included both a measurement and latent variable model (Bollen, 1989). Wespecified a multivariate multiple regression model using latent variables with struc-tural equations modeling. The latent variables were caregiver strain, caregiverpsychological distress, child problems, life stressors, family functioning, materialresources, and social support. In this model, caregiver strain and caregiver psy-chological distress were the outcome variables, with the remainder of the latentvariables serving as explanatory variables. In order to aid model identification, thefactor loading for one indicator of each latent variable was set to one (1.0), the restof the factor loadings were left free to be estimated. The parameters estimating therelationships among the outcome and explanatory variables were not constrained,nor were the correlations among the explanatory variables. (Contact the first au-thor for information on the reliability of the indicators, the measurement modelestimates, and model identification.)

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In view of previous studies that have conceptualized psychological distressand caregiver strain as essentially the same construct, and recognizing that little isknown about the the role of other family variables, it was important to examine therelationship between caregiver strain and psychological distress in the context ofthis fuller model (e.g., Jacob, et al., Maurin & Boyd, 1990; Platt et al., 1980; Jacob,Frank, Kupfer, & Carpenter, 1987). Given that several studies have interpreted psy-chological distress as causing caregiver strain (e.g., Stommel et al., 1990; Vitalianoet al., 1991) it was also important to consider the alternative hypothesis that psy-chological distress predicted caregiver strain. Toward this end, we compared twoseparate models. The hypothesized model depicted caregiver strain as contributingto caregiver psychological distress. The reversed-effects model depicted caregiverpsychological distress as contributing to caregiver strain (not shown). In both mod-els, the explanatory variables (e.g., child symptomatology, life stressors, materialresources, family functioning, and social support) were all depicted as contributingto both outcome variables (i.e., caregiver strain and caregiver psychological dis-tress). The correlational relationships among the explanatory variables were alsoestimated.

RESULTS

The chi-square values for the two models tested in this study were identi-cal (χ2(98, N = 514)= 395.90, p < .001), a value higher than would be ideal.However, the Comparative Fit Index was .94, indicating that the data fit the modelsmoderately well.

Results for the hypothesized model are shown in Fig. 2. Comparison be-tween the hypothesized and reversed-effects models (not shown) revealed someimportant differences. The significant relationship between caregiver strain andcaregiver psychological distress in the hypothesized model (β = .18) was some-what greater than the nonsignificant relationship found in the reversed-effectsmodel (β = .13). The most dramatic shift, however, was found in the relationshipbetween child symptoms and caregiver psychological distress. Although a signifi-cant relationship was found in the reversed-effects model between child symptomsand caregiver psychological distress (γ = .15), that relationship disappeared in thehypothesized model (γ = .01). This suggests the possibility of a mediated rela-tionship in the context of the larger model, although all the criteria were not tested(Baron & Kenny, 1986). Caregiver strain may mediate the relationship betweenthe child’s symptoms and caregiver psychological distress. Finally, the inverse re-lationship between caregiver strain and material resources was somewhat higher inthe hypothesized model, reaching statistical significance. All other relationshipsamong explanatory and outcome variables were essentially the same in the hy-pothesized and reversed-effects models. In general, the model more adequatelyexplained caregiver strain than distress, as evidenced by the error terms for thelatent variables.

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Fig. 2. Caregiver Strain, Distress, and Other Family Factors: Hypothesized Direction of Effects.Numbers shown are standardized path coefficients significant atp < .05.

Limitations

Several limitations to this research warrant discussion. First, because 90% ofthe FBEP sample had a primary caretaker who was or had been involved with themilitary (Bickman et al., 1995), the question of the generalizability of the findingsfrom this sample need to be addressed. Evidence from previous studies sufficientlydispelled LaGrone’s (1978) description of a “military family syndrome” (e.g.,Jensen et al., 1995). More importantly, a comparison of CBCL and Youth Self-Report scores indicated that the FBEP sample was very similar to clinically referredchildren in the general civilian population (Bickman et al., 1995).

A second limitation is the reliance on the caregiver’s report for all the dataused in this study. While this limitation should be considered in interpreting themagnitude of the correlations among variables, it does not threaten the basic findingthat caregivers in this sample were able to distinguish between strain related to

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their caregiving responsibilities and general distress more closely associated withother factors.

DISCUSSION

The results of our study support the primary hypothesis that caregiver strainand caregiver psychological distress are related but distinct constructs with differ-ent correlates. Accordingly, studies of the impact of child emotional and behavioralproblems on families, as well as evaluation of family support services, should fa-vor measures specific to caregiver strain over the use of general psychologicalsymptom checklists. These findings also support the hypothesis that, among thesevariables, child symptoms were the best predictor of caregiver strain and that otherlife stressors were the best predictor of the caregiver psychological distress. Addi-tionally, when caregiver strain was depicted as mediating the relationship betweenchild symptoms and caregiver psychological distress, no relationship was foundbetween these two variables. Note, however, that the direction of relationshipshypothesized in this model cannot be conclusively demonstrated with the cross-sectional data used in this study. Nor would inferring causality from these resultsbe appropriate. The finding that caregiver strain was higher in families with fewermaterial resources points to a possible area for intervention. Family function-ing did not appear to influence either caregiver strain or caregiver psychologicaldistress.

Our findings were generally consistent with results from other studies onthe impact of caring for relatives with special needs. In particular, our study sup-ported findings from two similar studies that applied the ABCX Model (McDonaldet al., 1997; 1999). The relationship between caregiver strain and client symptomshas been found previously in many other studies (e.g., Baker & McCal, 1995;McDonald et al., 1997; Montgomery et al., 1985; Noh & Turner, 1987). Similarly,previous research has supported the connection between stressful life events andpsychological distress (e.g., Dohrenwend & Dohrenwend, 1974). That the strongrelationship between caregiver strain and psychological distress found in previousresearch (Brannan et al., 1997; Noh & Turner, 1987) was not found here is likelydue to the inclusion in this model of other family factors not included in previousstudies.

The direct effect of social support on caregiver psychological distress suggeststhat social support has a protective or bolstering role. This is consistent withprevious research that found that social support may boost coping strategies forfamilies of children with emotional and behavioral challenges (McDonald et al.,1997; 1999). However, that no relationship was found between social support andcaregiver strain may have been due to how social support was measured in thisstudy and to the absence of coping efforts (i.e., active response) in the model. Thesubset of social support items of the FIRA-G used in this study focused on how

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much the family relied on friends and relatives in general, and how much theyfelt that they were part of a supportive community. No items were included thatreferred explicitly to how the family employed social support as a coping strategyfor dealing with their child’s special needs. Future research is needed to understandbetter the relationship among caregiver strain, availability of social support, andcoping strategies.

The high correlation between child symptoms and other life events is inkeeping with earlier research that children’s psychological symptomatology isaffected by stressful life events in ways similar to adults (Banez, & Compas, 1990;Ge, Lorenz, Conger, Elder, & Simons, 1994). Perhaps more interesting was thatdespite the co-occurrence of both child emotional and behavioral problems andother stressful life events in these families, caregivers were able to distinguish notonly between the events, but also between the impact of those events (i.e., caregiverstrain versus caregiver psychological distress) as hypothesized.

The possibility of a mediated relationship also draws into question previousstudies that have interpreted cross-sectional correlations between psychologicaldistress and child symptoms as evidence that (a) mothers with elevated depressionchecklist scores failed in their child-rearing duties and therefore had children withbehavior problems (e.g., Kazdin, & Kolko, 1986), or (b) parental psychologicaldistress resulted in exagerated reports of their children’s problems (e.g., Sanger,McLean, & VanSlyke, 1992). That caregiver strain may mediate the relationshipbetween child symptoms and psychological distress suggests that the psychologicalsymptoms reported by caregivers may be a normative response to the stressfuldemands of caring for a child with emotional or behavioral problems. This assertionis further supported by the fact that the caregivers in this sample did not, on average,meet clinical criteria on the BSI. The vagueness surrounding these two constructshas led to contradictory interpretations of data that, at best, fail to provide theknowledge base needed to develop and evaluate interventions to support familiesand caregivers as they struggle to meet the needs of their children with specialneeds, and at worse, pathologize and blame families.

Our findings indicate that a test of a fuller conceptual model is needed tostudy families longitudinally, including examination of additional factors such asfamily perceptions of wellness and help-seeking, as well as coping strategies usedto deal specifically with the child’s problems. Such a study could inform the fieldof what resources and strengths protect families from caregiver strain. This isespecially important given the evidence that families who care for persons withspecial needs often develop effective and adaptive coping strategies (Gallimore,Weisner, Bernheimer, Guthrie, & Nihira, 1998). Likewise, studies of caregivers ofchildren with emotional and behavioral disturbance should broaden their scope toinclude positive aspects of the caregiving experience (Yatchmenoff et al., 1998).In order for the role of the family in the treatment of children with emotional orbehavioral problems to be understood, the full array of family experiences need tobe considered.

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ACKNOWLEDGMENTS

Collection of the data used in this study was funded by the U.S. Depart-ment of the Army (DA-DA10-89-C-0013, Principal Investigator: L. Bickman) andthe National Institute of Mental Health (RO1MH-46136, Principal Investigator:L. Bickman). Development of this paper was supported by the Center for SubstanceAbuse Treatment of the Substance Abuse and Mental Health Services Adminis-tration (1KD1, TI112328, Principal Investigator: C.A. Heflinger). Special thanksto Robert Newbrough and Paul Dokecki for feedback on earlier versions of thispaper, and to Ernest Valente for guidance on the statistical techniques used. Mostimportantly, the authors would like to express their gratitude to the children andfamilies who shared their lives and experiences to make this research possible.

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