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Fam Proc 31:383-397, 1992

Lives in a Balance: Perceived Family Functioning and the Psychosocial Adjustment of Adolescent Cancer Survivors DOUGLAS S. RAIT, Ph.D.a JAMIE S. OSTROFF, Ph.D.b KAROLYN SMITH, Ph.D.b DAVID F. CELLA, Ph. D.c CHARLOTTE TAN, M.D.b LYNNA M. LESKO, M.D., Ph.D.b aDirector, Family Therapy Program, Palo Alto Veterans Administration Medical Center/Stanford University School of Medicine, Palo Alto CA; formerly Director, Family Studies Program, Department of Psychiatry, Beth Israel Medical Center, and Assistant Professor of Psychiatry, Mount Sinai School of Medicine, New York NY. bThe following authors are affiliated with the Memorial Sloan-Kettering Cancer Center, New York NY: Dr. Ostroff, Assistant

Attending Psychologist, Psychiatry Service, Department of Neurology, and Fellow, Leukemia Society of America; Dr. Smith, Postdoctoral Fellow, Psychiatry Service, Department of Neurology; Dr. Tan, Associate Chair, Developmental Therapeutics, and Attending Pediatrician; Dr. Lesko, Coordinator of Research Training, Associate Attending Psychiatrist, Psychiatry Service, Department of Neurology, and Research Scholar, Leukemia Society of America. cAssociate Professor of Psychology and Director, Division of Psychosocial Services, Rush Cancer Center, Rush-Presbyterian-St. Luke's Medical Center, Chicago IL.

Childhood cancer patients have a greater likelihood of long-term survival than ever before. This study examined both the perceived family functioning of adolescents who had successfully completed treatment for pediatric cancer and the relationship between family functioning and post-treatment adjustment. Eighty-eight adolescent survivors of hematologic malignancies were assessed regarding their family functioning, mental health, self-esteem, global competence, and problem behaviors. Contrary to expectations about the influence of cancer on these families, adolescent cancer survivors reported lower levels of family cohesion than the normative sample of healthy adolescents and their families. While current age, gender, age at diagnosis, and time since treatment completion were generally not associated with adolescents' adjustment, perceived family cohesion and adaptability were strongly related to post-treatment psychological adjustment. Fam Proc 31:383-397, 1992 Due to recent advances in multimodal cancer treatments, most childhood malignancies are no longer viewed as terminal illnesses. With over 6,000 new diagnoses reported annually (Young, Pres, Silverberg, et al., 1986), 5-year survival rates have reached 57% for all forms of pediatric cancer combined. For some types of cancer, such as Hodgkin's disease, the long-term survival rate is 91% (American Cancer Society, 1989). While these figures dramatize one of the success stories in modern pediatric medicine, they do not reflect the challenges faced by young people and their families after treatment is completed (Chesler & Barbarin, 1986; Koocher & O'Malley, 1981). Hammond (1986) has noted that, despite the spectacular successes in developing treatments capable of enabling complete recovery from illness as well as long-term survival, achieving the "restoration of health, including physical, developmental, functional, and psychological" often fails (p. 412). Facilitating optimal adaptation to the completion of cancer treatment is particularly complex during adolescence. In addition to the demands of coping with cancer, adolescents experience numerous cognitive, social, emotional, and physical changes characteristic of this developmental stage (Blumberg, Lewis, & Susman, 1984; Rowland, 1989). The following case description introduces some of the issues faced by adolescents and their families following the completion of treatment: Jane's junior-year health class had been discussing marriage, pregnancy, and childrearing. While her classmates dreamed about their future husbands and children, Jane would insist that she was going to focus on a medical career instead. Her friends would remark on her maturity and dedication. What they did not know was that Jane had been successfully treated for Hodgkin's disease 4 years earlier and that she was unsure whether, due to treatment side effects, she would be able to have children at all. More than that, just imagining a boyfriend's reaction to her telling him she had cancer was enough to make her nervous about dating. Although her closest old friends knew, talking 1

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about her past medical history with new acquaintances was something she avoided because she was afraid of their reactions. Of course, she talked sometimes with her parents about it, but usually only around her yearly checkups and, then, only when her mother brought it up. Ever since this new topic in health class began, thoughts about her past illness kept popping into her mind. She often wondered whether her cancer would return. Jane wanted to tell her mother, but knew that her mother would become worried, maybe even going so far as to ask her teacher to excuse her from health class. And besides, she didn't want to bother anybody with her silly concerns. After all, she had been cured of cancershe should be happy. This vignette illustrates how, even years after the completion of acute cancer care, young patients and their families contend with unremitting medical and psychological worries (Cella, Tan, Sullivan, et al., 1987; Koocher & O'Malley, 1981). Not surprisingly, a major concern is the possibility of cancer recurrence (Blumberg et al., 1984), that the same type of malignancy will return. In addition, the modern treatment of cancer (for example, chemotherapy, radiation, and surgery) can adversely affect virtually every major organ system (Byrd, 1985; Jaffe, 1987; Meadows & Silber, 1985; Robison, 1986). Some side effects are temporary, while others represent unavoidable, permanent consequences of aggressive cancer treatment. These side effects can include infertility, short stature, learning disabilities, persistent fatigue, and cardiopulmonary problems. As a result of the toxicity of their treatment, long-term survivors of pediatric cancer also face a 20 times greater than expected probability of being diagnosed with a new cancer (Byrd, 1985). Given the continuing uncertainty that accompanies remission and the potential for serious treatment side effects (Byrd, 1985; Jaffe, 1987; Meadows & Silber, 1985; Robison, 1986), most pediatric cancer survivors can expect continuous medical followup throughout their lives. These followup appointments involve several painful diagnostic procedures (for example, bone marrow aspiration and lumbar puncture) and are approached by patients and their families with anxiety and guarded optimism. Viewed from this perspective, childhood cancer is a chronic medical condition associated with long-term physical, psychological, and social consequences.

The Damocles Syndrome As the likelihood of pediatric cancer survival has increased, greater attention has focused on helping patients and their families cope with the chronic stress following completion of cancer treatment. Koocher and O'Malley (1981) first described the psychosocial sequelae of pediatric cancer survival and found that problems with self-esteem, depression, anxiety, peer relationships, and school and work difficulties were experienced by well over half of their young adult survivors of childhood cancer. They labeled the anxiety and related symptoms experienced by cancer survivors as the "Damocles syndrome" (p. xvii), in reference to an anecdote told by Cicero about a sycophantic courtier invited by the tyrant, Dionysius I, to enjoy a luxurious and bountiful feast while sitting beneath a sword suspended by a single horsehair. This characterization of uncertainty has been applied to cancer survivors of all ages, from school-aged children to adults. Only recently have researchers systematically addressed the impact of surviving cancer on the normal development and psychological adjustment of specific age groups, such as adolescents. Fritz and Williams (1988) found that 61% of adolescents studied reported good or excellent global adjustment while concurrently reporting persistent illness-related concerns such as negative body-image, disruption in dating, and somatic preoccupation. In examining the psychological adjustment of cancer survivors between 8 to 16 years of age, Greenberg, Kazak, and Meadows (1989) found that cancer survivors reported significantly poorer self-concept and more external locus of control than a matched sample of healthy children. However, their responses were within the normative range and there were no differences in reported depression. In contrast, Mulhern and colleagues (1989) documented significant deficits in social competence and increased behavior problems in their sample of adolescent survivors. Finally, in looking at the psychological adjustment of the same sample of adolescent cancer survivors described in our article, Ostroff, Smith, and Lesko (1989) found that adolescent cancer survivors reported significantly greater levels of emotional distress yet no differences in school achievement, social competence, and problem behaviors as compared to healthy peers.

A Contextual-Developmental View Given the variability in adolescent cancer survivors' psychosocial functioning, researchers have begun to examine factors that may account for the range of post-treatment adaptation. While individual factors such as type of illness, age at diagnosis, and time since completion of treatment have been shown to be partial predictors of survivors' psychological status (Cella et al., 1987; Koocher & O'Malley, 1981; Spinetta & Deasy-Spin-etta, 1981), characteristics of the family environment have been proposed as important components associated with adolescent survivors' adjustment (Kazak, 1989). In two studies that have addressed family environment and the adaptation of adolescent survivors, perceptions of family adaptability (Kazak & Meadows, 1989) and family coping (Kupst & Schulman, 1988) were positively linked to adolescents' psychological adjustment. Our contextual-developmental model proposes that adolescent adaptation to a chronic illness is influenced by both

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family context and two synergistic developmental trajectoriesadolescent development and phase of illness. This conceptual model illustrates how the co-occurrence of cancer survival and adolescence may pose a particularly difficult challenge for patients and their families. On the one hand, the specific tasks of adolescence should optimally coincide with the family's passage through a centrifugal stage characterized by a loosening of parent-adolescent bonds and an orientation toward interests outside of the family (Combrinck-Graham, 1988; Waterman, 1981; Youniss & Smollar, 1985, 1989). During adolescence, most families reorganize their boundaries to accommodate the adolescent's flexible movement into and out of the family system (Carter & McGoldrick, 1980; Grotevant & Cooper, 1986; Minuchin, Rosman, & Baker, 1978). In contrast, a life-threatening illness frequently draws family members together and focuses their attention on the patient and the illness process (Masters, Cerreto, & Mendlowitz, 1983; Rait & Lederberg, 1989). A response of increased cohesion has been observed in families coping with diseases such as cancer, diabetes, asthma, and end-stage renal disease (Frey, 1984; Gonzalez, Steinglass, & Reiss, 1989; Minuchin & Minuchin, 1987; Penn, 1983; Rosman, 1988; Walker, 1983; Wood, Watkins, Boyle, et al., 1989). However, this family reaction to illness does not appear to be universal. Chronic illness can also have a splintering effect on families, leaving members feeling disconnected and unsupported (Bluebond-Langer, 1978; Rosman,1988). While family closeness and support may be essential to coping with the acute stage of the illness, continuing levels of high cohesion may thwart normal adolescent development as well as families' successful accommodation to adolescence. In the context of adolescent cancer survival, Blumberg et al. (1984) observed that surviving cancer can actually strengthen family ties, potentially jeopardizing the normal process of parent-adolescent separation. The adolescent survivor of pediatric cancer can therefore be viewed as being pulled in opposite directions: drawn to the periphery of their family as expected during adolescence and engaged in a heightened level of closeness that often emerges during the acute illness experience. The resolution of these contradictory pulls on the adolescent-family relationship is viewed as central to the adolescent cancer patient's overall psychological and social adjustment.

Research Questions The aim of this study is to understand better the post-treatment adaptation of adolescents and families who have successfully completed treatment for two common pediatric cancers: leukemia and lymphoma. Given the literature on chronic illness and family functioning, we hypothesized that the experience of pediatric cancer on the family would result in a family environment marked by heightened family closeness and reduced adaptability. We predicted that adolescents who had been successfully treated for these hematological malignancies would perceive their families to be more rigid and cohesive than a normative sample of adolescents. Adolescents who perceive their families as rigidly cohesive may be describing a barrier for both post-treatment reorganization as well as normal life-cycle change. In the second hypothesis, we expected that the degree of family cohesion and adaptability would be associated with adolescent cancer survivors' psychosocial adjustment. By controlling for previously documented predictors of adjustment to cancer survival, such as age at diagnosis and time since completion of treatment (Cella et al., 1987; Koocher & O'Malley, 1981; Spinetta & Deasy-Spin-etta, 1981), we attempted to clarify the unique relationship between perceived family functioning and the adolescents' psychosocial adjustment.

METHOD Subjects Patients scheduled for routine followup appointments from January, 1987 to December, 1990 were recruited consecutively in the outpatient, Pediatric Day Hospital of Memorial Sloan-Kettering Cancer Center. Patients meeting all of the following inclusion criteria were eligible for study participation: (1) between the ages of 12-19 years at the time of the assessment; (2) diagnosed and previously treated for a hematological malignancy (acute leukemia, Hodgkin's disease, non-Hodgkin's lymphoma); (3) underwent some portion of their active cancer treatment beyond 5 years of age; (4) currently in remission and off-treatment for a minimum of 3 months; (5) living with parents; and (6) English-speaking with at least a fifth-grade reading level. Hematologic malignancies were selected because (a) they are approximately equivalent in terms of treatment burden; (b) they have shown a significantly increased survival rate over the past two decades; (c) they occur with high frequency during middle childhood and adolescence; and (d), unlike other common pediatric cancers whose treatment can be disfiguring, they are associated with relatively few visible signs of medical treatment. Patients who had completed their cancer treatment at least 3 months ago were selected to minimize the effect of acute treatment side effects on adolescent psychosocial adjustment. Former patients who had not been in active treatment after 5 years of age were excluded from the study in order to insure that all former patients and their families had adequate memories of their illness experience. Table 1 shows the background characteristics of the 88 adolescents that comprised the final study sample. The average current age of the participants was 15.6 years, and most had been diagnosed with cancer during middle childhood. 3

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Consistent with the epidemiology of these illnesses (Young et al., 1986), there were more males than females in the sample. In terms of family constellation, 70 were two-parent and 18 were single-parent families. Based on family income and educational status, most families could be characterized as middle to upper-middle class in socioeconomic status. Examining the breakdown by hematologic malignancy subtypes, 29 of the patients were treated for Hodgkin's disease, 25 non-Hodgkin's lymphoma, and 34 acute leukemia. The duration of active treatment averaged 23 months, and the mean time since treatment completion was 37 months. Table 1 Patient Characteristics N

%

Male

58

66

Female

30

34

12-15

38

43

16-19

50

57

Two-parent

70

80

Single-parent

18

20

Gender

Current age (mean = 15.6 ± 1.8 yrs)

Family constellation

Family income 0-19,999

14

18

20,000-39999

30

39

40,000-69,000

23

30

Over 70,000

10

13

White

65

74

Black

3

3

Hispanic

5

6

Race

Asian

4

4

Other

11

13

Age at diagnosis (mean = 10.6 ± 3.6 yrs) 4-9

31

35

10-13

35

40

14-17

22

25

Diagnosis Hodgkin's disease

29

33

Non-Hodgkin's lymphoma

25

28

Leukemia

34

39

Less than 1 year

21

24

1-5 years

45

51

Over 5 years

22

25

Time since treatment completion (mean = 37.4 ± 29.7 mos.)

Procedure Eligible patients were initially approached by our research team and their pediatric oncologists, who supported the study throughout its course. The rate of participation was high, with fewer than 10% of those families approached refusing to participate. The most common reason for the few refusals was parents' desire to protect their children from distressing

4

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feelings that might result from participating in the study. Informed consent was obtained from adolescents and parents, and data were collected through structured interviews with patients and parents, and through standardized self-report measures that were returned by mail following completion. In total, the data collection procedure required approximately 2 hours of participants' time. A subset of the data collected from only the adolescents is reported in this article.

Instruments The Family Adaptability and Cohesion Scales-III (Olson, Portner, & Lavee, 1985) is a 20-item instrument that assesses family adaptability and cohesion and has been used in other studies (Friedman, Baer, Nelson, et al., 1988; Kazak & Meadows, 1989) of cancer patients and their families. The scale has been shown to have adequate internal consistency (Cronbach's alpha = .77 for the Cohesion sub-scale and .62 for the Adaptability sub-scale), and is well-validated as a global measure of family functioning (Edman, Cole, & Howard, 1990; Olson, 1988). In addition, normative values are available from a community sample of 1,315 healthy adolescents and their parents (Olson et al., 1985). Preliminary analyses confirmed the comparability of the large normative sample and our sample on all available sociodemographic characteristics. There were no significant group differences on socioeconomic status, family constellation, and ethnicity. The Rand Mental Health Inventory (Veit & Ware, 1983) is a 38-item measure of mental health that yields two independent dimensionspsychological distress and positive well-beingas well as a global mental health score. The scale has excellent internal consistency reliability, and the validity of the scale is well-established via a large-scale, community standardization study. Secondary analyses have demonstrated the appropriateness of this measure for adolescents (Ostroff, Smith, Berry, et al., 1992) by examining the subsample of 904 adolescents who participated in the original validation study. The Rosenberg Self-Esteem Scale (Rosenberg, 1965) was used to assess self-esteem. The measure was developed on a sample of over 5,000 healthy adolescents and has been shown to have adequate reliability (Guttman scale reproducability coefficient = .92) and construct validity. The Youth Self-Report (Achenbach, 1986), an adolescent self-report version of the Achenbach Child Behavior Checklist (Achenbach & Edelbrock, 1983), assesses social competence, school achievement, and problem behaviors. Summary scores reflecting global competence (school achievement and social competence) and problem behaviors (internalizing and externalizing) were used in subsequent analyses. Test-retest reliability is adequate over 6 months (.69), and adolescent norms for this 112-item scale have been developed.

RESULTS Preliminary Analyses The frequency distributions and histograms of each variable were inspected for outliers and assumptions of normality. As a result of these preliminary analyses, three subjects who were diagnosed during infancy were excluded from the analyses because of their wide departure from the remainder of the sample on age at diagnosis. Subsequent analyses were therefore conducted on 88 adolescent patients. While this sample was selected for its similarity in terms of diagnosis and treatment characteristics, there was variability in several temporal variablesage at diagnosis, time since treatment completion, and current age. Due to their potential importance as correlates of post-treatment adolescent and family adjustment, they were treated as covariates in the reported multivariate analyses. Preliminary analyses also examined within-sample group differences in family adaptability and cohesion due to either gender, socioeconomic status, family constellation, race, or religion. No significant differences were found. Therefore, these sociodemographic variables were not treated as grouping variables.

Adolescent Survivors' Views of Family Functioning It was hypothesized that off-treatment adolescents would report greater levels of family cohesion and lower levels of family adaptability than would respondents from the normative sample. To test our prediction, we conducted student t-tests comparing our sample and the normative sample on mean levels of adaptability and cohesion. In comparing the mean adaptability scores from the normative sample and our own (mean = 24.1, SD = 6.1), we found no significant difference between the groups. In contrast, significant differences were found along the cohesion dimension (t[1401] = 5.04, p < .001). However, contrary to our expectations, the level of family cohesion described by the study sample (mean = 33.7, SD = 6.9) was significantly lower than those reported by the normative sample. In fact, as shown in Figure 1, nearly 40% of the adolescent cancer survivors viewed their families as disengaged according to Olson et al.'s (1985) cutoff scores.

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Figure 1. Comparative distribution of family cohesion.

Perceived Family Functioning and Psychosocial Adjustment Having determined that adolescent survivors perceive their families as less cohesive than their healthy peers, we then assessed the extent to which adolescent survivors' perceptions of family cohesion and adaptability are associated with their psychosocial adjustment. A series of four hierarchical regression equations were conducted with the following adolescent adjustment indicators used as criterion variables: overall mental health, self-esteem, global competence, and total problem behaviors. In all four equations, salient sociodemographic variables (gender and current age) as well as medical variables (age at diagnosis and duration of time since treatment completion) were entered prior to the family functioning variables. This approach was selected in order to control for the presumed effects of these variables on adolescents' post-treatment adjustment. Tables 2, 3, 4, 5 show the standardized regression coefficients upon entry, and R2 change for each of the regression equations. Neither gender, current age, age at diagnosis, nor duration of time since treatment completion were significant predictors of any indicator of adolescents' post-treatment adjustment. In the aggregate, demographic and medical variables accounted for no more than 10% of the variance in adolescents' post-treatment adjustment. Family functioning, as represented by adaptability and cohesion, was a strong and consistent predictor of all the adjustment indicators except problem behaviors. This negative finding may be attributable to the limited variability in the number of problem behaviors reported. Approximately 20% of the variance in adolescent adjustment was accounted for by the adolescents' perceptions of family adaptability and cohesion. The weighting of the beta coefficients demonstrates the relative importance of cohesion in the prediction of post-treatment adjustment. This pattern of results provides confirmation for the hypothesis linking adolescents' post-treatment psychosocial adjustment with their experiences of family functioning. Table 2

6

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Prediction of Adolescent Cancer Survivors' Overall Mental Health by Demographic, Medical, and Family Characterisctics Predictor

Beta

R2

F

df

p

.04

1.76

2,84

ns

.01

1.01

4,82

ns

.20

4.34

6,80

.001

Block 1: Demographic Sex

-.19

Age

-.04

Block 2: Medical Age at diagnosis

.20

Time post-treatment

.20

Block 3: Family Cohesion

.42***

Adaptability

-.27°

Note: Analyses based on the total summary score of the Rand Mental Health Inventory. p < .05; **p < .01; ***p < .001; °trend

Table 3 Prediction of Adolescent Cancer Survivors' Post-Treatment Self-Esteem by Demographic, Medical, and Family Characteristics Predictor

Beta

R2

F

df

p

.006

.22

2,63

ns

.01

.35

4,61

ns

.19

2.47

6,59

.05

Block 1: Demographic Sex

-.08

Age

.00

Block 2: Medical Age at diagnosis

-.36

Time post-treatment

-.30

Block 3: Family Cohesion

.34*

Adaptability

-.31*

Note: Analyses based on the Rosenberg self-Esteem score. *p < .05; **p < .01; ***p < .001; °trend

Table 4 Prediction of Adolescent Cancer Survivors' Post-Treatment Behavior Problems by Demographic, Medical, and Family Characteristics Predictor

Beta

R2

F

df

p

.02

1.01

2,80

ns

.00

.52

4,78

ns

.06

1.12

6,76

ns

Block 1: Demographic Sex

-.16

Age

-.02

Block 2: Medical Age at diagnosis

.12

Time post-treatment

.10

Block 3: Family Cohesion Adaptability

-.23° .11

Note: Analyses based on the Problem Behavior Subscale of the Youth Self-Report. *p < .05; **p < .01; ***p < .001; °trend

Table 5 Prediction of Adolescent Cancer Survivors' Post-Treatment Global Competence by Demographic, Medical, and Family

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Characteristics Predictor

Beta

R2

F

df

p

.03

1.09

2,76

ns

.07

2.86

4,74

.06

.10

4.58

6,72

.01

Block 1: Demographic Sex

.16

Age

.00

Block 2: Medical Age at diagnosis

-.71*

Time post-treatment

-.75*

Block 3: Family Cohesion

.26°

Adaptability

.15

Note: Analyses based on the Problem Behavior Subscale of the Youth Self-Report. *p < .05; **p < .01; ***p < .001; °trend

In order to explore further possible changes in the association between perceived family environment and adolescent cancer survivors' adjustment over time, the total sample was divided into three subgroups on the basis of duration of time since cessation of treatment. Based on conceptually meaningful illness milestones, we punctuated the sample as follows: (1) "recent" survivors who had completed their treatment less than or equal to one year at the time of study recruitment (n =21); (2) "intermediate" survivors who had completed treatment greater than one year and less than 5 years (n = 45); and (3) "long-term" survivors who had completed their treatment more than 5 years ago (n = 22). For each subgroup, separate post hoc regression analyses of the four indicators of adolescent adjustment were conducted using family cohesion and adaptability variables as predictor variables. While these analyses are considered tentative due to the small subsample sizes and the cross-sectional nature of the data, an interesting nonlinear pattern emerged. In the subsample of"recent" (time since treatment completion) survivors, the association between perceived family cohesion and adaptability and adolescent adjustment (except for problem behaviors) was strong, with approximately 50% of the variance in adjustment accounted for by family environment. In the second subsample of "intermediate" cancer survivors, the strength of the association between family environment and adolescent adjustment decreased dramatically. Within this sub-sample, less than 10% of the variance in adolescent adjustment was accounted for by family cohesion and adaptability. In the final subsample of"long-term" cancer survivors, there was again a significant association between family environment and adolescent adjustment, with approximately 34% of the variance accounted for by family cohesion and adaptability. Given the somewhat surprising finding of a fluctuating association between family environment and adjustment for cancer survivors, further exploration of how duration of time since treatment completion influences post-treatment adjustment is warranted. Possible explanatory factors to be considered in the context of a longitudinal design include variation due to current age of the cancer survivor and age at the time of diagnosis.

DISCUSSION The present study examined the post-treatment adaptation of the growing population of adolescent cancer survivors and their families. An important aspect of this study was to narrow the focus of previous studies by carefully defining our study sample. In looking at post-treatment psychosocial adaptation, we identified a specific developmental cohort of patients: adolescents between the ages of 12-19. We further restricted our sample with respect to the type of illness (leukemia and lymphoma) and the stage of illness (chronic stage). At the same time, by broadening the scope of assessment to include the adolescent's perception of family functioning, we have examined a critical, yet understudied, component of post-treatment adjustment. It was predicted that adolescents who had successfully completed treatment for leukemia and lymphoma would be more likely to characterize their families as more cohesive and less adaptable than would the normative sample of adolescents. Although there was no difference in perceived family adaptability between the two samples, the adolescents who had completed cancer treatment viewed their families to be significantly less cohesive than did the normative sample. Regression analyses showed that family cohesion was positively associated with mental health, self-esteem, and global competence. In post hoc analyses, the strength of association between family functioning and adolescent adjustment varied with duration of time since treatment completion. These findings raise some important reconsiderations about both the potential impact of childhood cancer on family functioning as well as the critical role families play in adolescents' long-term adaptation to cancer survivorship. The attentuated family cohesion described by this sample of off-treatment adolescents was unexpected. Several related

8

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explanations could account for this finding. First, cancer survivorship itself may promote a centrifugal reorientation (Rolland, 1990) on the part of patients and their families. It was assumed that the illness experience might continue to subordinate other family functions. However, it is also plausible that family members may be viewed by the adolescent survivor as attending to extrafamilial or other internal family demands rather than providing the closeness to which adolescent patients have become accustomed. This explanation is consistent with Rolland's (1987) description of the shift from centripetal to centrifugal functioning during the extended, chronic phase of illness. To our knowledge, the notion of centrifugal movement has not been specifically applied to the transition from active cancer treatment to extended cancer survivorship. Following their treatment, adolescent cancer survivors are generally advised by their physicians and nurses to resume normal developmental activities. Many families also encourage adolescents to be more independent and socially active after the restrictive and dependency-producing nature of cancer treatment. This well-intentioned guidance, however, may have the unintended effect of amplifying the centrifugal transition from childhood to adolescence. As a result of what might be viewed as a doubly fueled centrifugal response, some adolescent cancer survivors may adopt a hyper-independent and prematurely self-sufficient posture. Underscoring the potential detriment of premature parent-adolescent separation, recent developmental studies have challenged the assumption that adolescent detachment is normal (Gilligan, Lyons, & Hanmer, 1990; Hauser, Powers, Noam, et al., 1984; Ryan & Lynch, 1989). Another reason that adolescent cancer survivors may perceive diminished levels of family closeness could be related to family members' motivation to protect each other from additional emotional distress associated with their cancer experiences (Bluebond-Langer, 1978). Many families cannot wait to put their exhausting and traumatic experiences behind them at the completion of treatment, and adolescents have reported that discussions about cancer often become taboo during the subsequent post-treatment period (Ostroff, Smith, & Lesko, 1989). It might follow that an absence of sanctioned discussions of important cancer-related concerns could contribute to adolescent survivors' perceived disengagement from their families and, indirectly, to their attendant psychological distress. Finally, given that families in our study had dealt with the acute and chronic demands of cancer for an average of 7 years, parents and other family members may have withdrawn some of the support and special consideration provided during the acute phase of illness. Parents may also underestimate their children's more subtle psychological needs because the outward appearance of adolescent survivors (for example, school achievement, social competence) is frequently indistinguishable from that of healthy peers (Ostroff et al., 1989; Siegel, 1987). This hypothesis of "family retreat" is indirectly supported by research on caregivers, which indicates that even professional staff who typically undergo a process of self-selection in choosing to care for cancer patients experience burn-out, emotional detachment, and withdrawal over time (Caldwell & Weiner, 1981; Hall, Gardner, Perly et al., 1979; Holland & Holland, 1985; Reiss, Gonzalez, & Kramer, 1986; Weisman, 1981). The other major finding of this study focused on the relationship between adolescents' perceptions of their family and their psychological and social functioning. Similar to previous research in this area (Kazak & Meadows, 1989; Kupst & Schulman, 1988), we found strong support for the association between family environment and post-treatment psychological adjustment. After controlling for the effects of gender, current age, age at diagnosis, and time since treatment completion, we found that perceived family functioning, particularly cohesion, was a significant predictor of adolescents' post-treatment adjustment. In keeping with the need for a greater focus on the impact of family structure on adolescents' health (Capelli, McGrath, Heick, et al., 1989; Hauser, Jacobson, Noam, & Powers, 1983; Millstein, 1989), this research underscores the relevance of family context to the adjustment of adolescent cancer survivors. While the findings of this study extend our knowledge, several methodological limitations should be considered in interpreting the results. First, there is an inherent weakness in attempting to measure a developmental process via a cross-sectional design. Although post hoc analyses explored changes in the association between family environment and adolescent adjustment by stratifying the sample into three sub-groups corresponding to meaningful phases in the post-treatment period, this study reinforces the need for longitudinal research that considers the developmental trajectories of the family, adolescent, and course of illness. Second, our choice of a global measurement strategy of family functioning does not enable precise specification of family process. Third, we reported only on the adolescents' perceptions of family functioning, which may or may not be corroborated by other members' views. Finally, the observed pattern linking family cohesion and adolescent adjustment may or may not be specific to this special population. Because determining the clinical significance of attenuated levels of family cohesion is hampered by the lack of normative data on families with a medically ill member, replication of these findings with healthy teenagers and teenagers with other chronic illnesses is warranted. In the next phase of our research on the family context of post-treatment adjustment, careful attention will be paid both to individual constructions of the family as well as to methods of aggregating data from multiple respondents (Fisher, 1982). We are now obtaining longitudinal, observational ratings, and self-report data from other family members. To the credit of modern pediatrics, the population of childhood cancer survivors continues to grow. In fact, according to Meadows and Silber (1985), one out of every 1,000 20-year-olds are cancer survivors who have faced the challenge of integrating their cancer-related concerns with the normal tasks of adolescent development. If a central goal of adolescents' 9

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post-treatment adaptation is balancing their continuing need for family connectedness with growing needs for autonomy, the family's role in facilitating this transition deserves continued attention. Expanding the focus of research on cancer survivorship to include family context will enable clinical researchers to develop preventive interventions that promote the optimal psychosocial adjustment of both adolescent cancer survivors and their families.

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Manuscript received May 29, 1990; Revisions submitted March 25, 1992; Accepted June 1, 1992.

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