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Family adaptation and coping amongsiblings of cancer patients, theirbrothers and sisters, and nonclinicalcontrolsAvi Madan-swain a , Sandra B. Sexson a , Ronald T. Brown a &Abdel Ragab aa Departments of Psychiatry and Pediatrics , Emory UniversitySchool of MedicinePublished online: 13 Jun 2007.

To cite this article: Avi Madan-swain , Sandra B. Sexson , Ronald T. Brown & Abdel Ragab(1993) Family adaptation and coping among siblings of cancer patients, their brothers andsisters, and nonclinical controls, The American Journal of Family Therapy, 21:1, 60-70, DOI:10.1080/01926189308250996

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FAMILY ADAPTATION AND COPING AMONG SIBLINGS OF CANCER PATIENTS,

THEIR BROTHERS AND SISTERS, AND NONCLINICAL CONTROLS

AVZ MADAN-SWAIN, SANDRA B . SEXSON, RONALD T . BROWN, and ABDEL RAGAB

This study examined coping and family adaptation in siblings of cancer patients, their ill brothers or sisters, and a control group consisting of nonclinical children who have healthy siblings. Assessments included children's self-report measures of coping and family adaptation. Vari- ables of individual differences, including gender and age of the sibling, and family constellation factors, including birth order and number of siblings in the family, were examined to determine effects on coping. Better adaptation was found in larger families, while decreased family involvement was found among older siblings. Recommendations for future research include elucidating the process by which children adjust to having a chronically ill sibling in their family.

Over the past several years, there has been considerable interest in the adjustment of siblings of pediatric cancer patients (McKeever, 1983; Tritt & Esses, 1988). Despite the large body of research examining the psy- chosocial difficulties evidenced in young cancer patients (Madan-Swain

This research was supported in part by U.S. Office of Education, Department of Special Education and Rehabilitative Services, Grant No. H023C80121 and by funding for the Sibling Camp (STARS) from CURE Childhood Cancer and Leukemia and the Brain Tumor Foundation for Children. The authors acknowledge the support of Lucia Hnath, Ellen Miller, and Debbie Sansone for their assistance in data collection. The authors also express their appreciation to all the siblings and the cooperative spirit of all of the families who participated in the study.

Avi Madan-Swain, Ph.D., Sandra B. Sexson, M.D., Ronald T. Brown, Ph.D., and Abdel Ragab, M.D., are at the Departments of Psychiatry and Pediatrics, Emory Univer- sity School of Medicine. All requests for reprints should be sent to Ronald T. Brown, Ph.D., Emory University School of Medicine, Department of Psychiatry, 1365 Clifton Road, N.E., Atlanta, GA, 30322.

The American Journal of Family Therapy, Vol. 21, No. 1, 1993 0 BrunnedMazel, Inc.

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Adaptation Among Siblings of Cancer Patients 61

& Brown, 1991; Van Dongen-Melman & Sanders-Woudstra, 1986) as well as their families (Kazak & Nachman, 1991; Kupst & Shulman, 1988), few studies have specifically examined the psychosocial functioning in healthy siblings of cancer patients. In fact, siblings have sometimes been referred to as “the forgotten ones” and are, by many accounts, the most left out and neglected of all the family members during the course of a chronic illness (Cheder & Barbarin, 1987; Spinetta, 1981). Published work pertaining to the experiences of siblings of cancer patients during the illness has been primarily anecdotal, with small sample sizes and a focus on interviews with the healthy siblings and observations by parents and health care professionals (McKeever, 1983).

The initial investigations of healthy siblings were retrospective, em- phasizing the siblings’ reaction to the loss of a brother or sister (Binger, 1973). Subsequently, several studies focused on the needs and concerns of siblings during the diagnosis and treatment of their sick brother or sister (Cairns et al., 1979; Kagan-Goodheart, 1977; Lindsay & McCarthy, 1974; Sourkes, 1980; Spinetta, 1981). Stressors frequently cited in the clinical literature include: loss of parental attention and a view of their mothers as overly indulgent toward the chronically ill siblings; changes in family structure, roles, and expectations; concerns about the cause of their sibling’s illness; feelings of guilt, anxiety, and shame; social isola- tion; and avoidance of affectual disclosure within the family. The identi- fication of these stressors has provided impetus for further research on how siblings cope with these stressors (Isles, 1979; Koch-Hattem, 1986; Kramer, 1981, 1984; Taylor, 1980; Walker, 1988). Coping strategies, iden- tified primarily from nonstandardized assessments, include talking to someone, expressing emotions, and social isolation.

More recently, investigators have begun to focus on coping and adap- tation in evaluating sibling adjustment. In a recent study examining sib- ling adjustment to cancer, Horwitz and Kazak (1990) compared pre- school-aged pediatric oncology patients and their preschool-aged siblings and noted differences in prosocial and adaptive behavior. Parents re- ported more similar behavioral and personality characteristics in siblings and patients than did parents of children in a control group. Horwitz and Kazak (1990) concluded that parents of oncology patients were more likely to view their children as “alike” on personality and behavioral dimensions than were parents in a comparison group, thus underscoring the need for self-report data from the siblings themselves.

The few available empirical studies are characterized by methodologic difficulties, including inadequate control groups (Cairns et al., 1979), measures that have exclusively focused on psychopathology rather than adaptation and coping (Lavigne & Ryan, 1979; Sawyer et al., 1986), and sole reliance on potentially biased parental reports (Lavigne & Ryan, 1979). Other studies have been based entirely on retrospective data; sib- lings were asked several years later to recall their understanding of the disease process and family functioning at the time of their ill sibling’s initial diagnosis (Gogan et al., 1977).

Moreover, investigators have rarely examined individual differences and family constellation variables, including siblings’ age, gender, age

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62 The American Journal of Family Therapy, Vol. 21, No. 1, Spring 1993

span between the patient and sibling, birth order, number of children in the family, and age at diagnosis, which might contribute to adjustment in siblings of children with cancer (Lobato et al., 1988). In a longitudinal investigation of individual differences in sibling adaptation, Spinetta (1981) found differential responses as a function of age. Specifically, pre- school-aged well siblings exhibited a lowered self-concept and were more sensitive to the patient than the patient was to them. Both age groups of siblings perceived greater psychological distance from their parents than did the patients. Finally, adolescent siblings rated their families as experiencing greater conflict and less cohesion than did patients. We found no studies of coping and adaptation in siblings of cancer patients as a function of the sibling’s gender or the aforementioned family constel- lation variables.

The purpose of our study was to examine coping, adaptation, and family functioning in siblings of cancer patients, the cancer patients themselves, and a control group of nonclinical children who have healthy siblings. In addition, a subgroup analysis was conducted to compare siblings whose brother or sister had leukemia with those whose brother or sister had a brain tumor or solid tumor. This enabled us to examine the possible differential response of siblings to various forms of cancer. Unlike most research studies, ours used children’s self-report measures. The study also is unique because we attempted to study the effects of individual differences and family constellation variables. Thus, we tested specific relationships between sibling variables such as age and birth order on adaptation and coping. In addition, we tested the aforemen- tioned variables with parental functioning. Finally, since patients’ age at diagnosis likely exerts a direct effect on sibling adaptation and coping, we also examined the relationship of age to these variables.

Based on the limited and somewhat conflicting data on sibling adapta- tion and coping as well as our clinical experience, we generated two a priori hypotheses. First, we expected the sibling group to differ from nonclinical controls in adaptation and coping. Second, we predicted that family constellation variables and individual differences would be related to sibling adaptation and coping.

METHOD

Subjects

A total of 32 siblings of consecutive patient referrals in a major univer- sity medical center (15 males and 17 females) were included in this study who ranged in age from 5 years, 2 months to 16 years, 7 months (mean = 11 years, 1 month, S.D. = 2 years, 11 months). There were no differ- ences for chronological age between males and females. Of the 32 sib- lings, 19 had a brother or sister diagnosed with acute lymphocytic leuke- mia (ALL), 7 had a brother or sister with a brain tumor, and 6 had a brother or sister with a solid tumor. Table 1 presents summary character- istics of the sibling participants.

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Adaptation Among Siblings of Cancer Patients 63

TABLE 1 Summary Characteristics of Sibling Participants

f Mean SD

Chronological agea Entire sibling group Males in sibling group Females in sibling group

Genderb Males Females

Birth order Younger than patient Same age as patient (twin) Older than patient

Two Three Four Five

Acute lymphocytic leukemia (ALL) Solid tumor Brain tumor

Siblings in family

Type of cancer ( n = 24)

32 133.34 35.45 15 128.53 32.52 17 142.31 34.09

15 17

7 1

24

14 8 0 2

17 3 4

aGroup age differences between sibings, patients, and nonclinical controls are n. s. Mean and S.D. are given in months. bGender differences between siblings, patients, and nonclinical controls ( x 2 = 4.9, n.s.)

The 19 cancer patients were consecutive referrals who had siblings eligible for participation in the present investigation (12 males and 7 females) and had mild-to-moderate risk acute lymphocytic leukemia (ALL). The patients ranged in age from 6 years, 1 month to 17 years (mean = 10 years, 7 months, S.D. = 3 years, 5 months). None of the children had relapsed and all patients’ prognosis was favorable (their treatment required only chemotherapy, not radiation therapy). All of the children were treated in accordance with the Pediatric Oncology Group’s (POG) ALL protocol. The ALL children had the disease for a maximum of two years. Data were collected on the ALL patients ranging from two months to 24 months after diagnosis. Additional siblings were obtained from families who had a child with solid tumor and brain tumor.

The nonclinical comparison group, from a nearby middle-class neigh- borhood, consisted of 10 children (2 males and 8 females) who ranged in age from 7 years, 3 months to 17 years, 3 months (mean = 11 years, 3 months, S.D. = 3 years, 1 month). Analyses of variance (ANOVAs) indicated that the total group of siblings (n=32) did not differ from

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64 The American Journal of Family Therapy, Vol. 21, No. 1, Spring 1993

patients or nonclinical controls for age. An analysis examining gender distribution among the three groups yielded a nonsignificant chi-square.

All data were collected by trained psychology graduate students after informed consent was obtained from parents and oral assent from the children.

Meas u y e s

The measures employed in the present study were selected to assess family adaptation and coping. Children reported their coping strategies using the Kidcope (Spirit0 et al., 1988). The following coping strategies are derived from the Kidcope: distraction, social withdrawal, cognitive restructuring, self-criticism, blaming others, problem solving, emotional regulation, wishful thinking, seeking social support, and resignation. Both frequency and efficacy scores were obtained from this measure. As a measure of adaptation, children also completed the KASTAN-Children’s Attribution Style Questionnaire (CASQ, Seligman et al., 1984), which taps the child’s attribution of causality for positive and negative events. Finally, each child rated hidher family’s functioning on the Children’s version of the Family Environment Scale (C-FES) which assesses family functioning in the areas of relationship, personal growth, and system maintenance (Pino et al., 1984).

RESULTS

Differences between groups were assessed for each of the dependent measures. Analyses of variance (ANOVA) was used for metric data. Pearson and Spearman rank-order correlation coefficients were used to examine the relationship among individual differences (e.g., age, gender) and family constellation variables (e.g., birth order, number of siblings in the family) and each of the dependent measures.

For all of these analyses, to control for type I error, the Bonferroni method was used to determine the per test significance levels (pT) corres- ponding to familywise significance levels (pFW). For example, on the CASQ, there are two scores (good and bad summary), a pFW of < .05 required a pT < .025; there were three measures of family functioning, and a nFW of < .05 required a aT of .017; there were 10 measures of coping’ strategy frequenGy on the‘ Kidcope, and a pFW of < .05 required a aT of .005.

‘The means and standard deviations for measures of coping, adaptation and family functioning for all siblings, their ill brother or sister, and nonclinical controls are presented in Table 2.

Overall there were no differences among the three groups on measures of coping, adaptation, and family functioning on self-report ratings. However, when siblings of ALL patients were compared to siblings of children with solid tumors and brain tumors, significant differences were obtained for the frequency dimension on the Kidcope. Siblings of brain tumor/solid tumor patients engaged in greater frequencies of wishful

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Adaptation Among Siblings of Cancer Patients 65

TABLE 2 Means and Standard Deviations for Measures of Coping, Adaptation,

and Family Functioning Siblings Patients Controls (n = 32) (n = 19) (n = 10)

Measures Mean SD Mean SD Mean SD

Kidcope (Frequency) Distraction Social withdrawal Cognitive restructuring Self-criticism Blaming others Problem solving Emotional regulation Wishful thinking Social support Resignation

Kidcope (Efficacy) Distraction Social withdrawal Cognitive restructuring Self-criticism Blaming others Problem solving Emotional regulation Wishful thinking Social support Resignation

Good summary Bad summary Total summary

Relationship dimension Personal growth dimension System maintenance dimension

CASQ”

C-FESb

0.88 0.96 0.68 0.24 0.60 1.16 1.20 1.20 0.68 0.52

1.67 1.79 1.56 0.83 1.88 1.76 1.77 1.45 1.75 1.80

4.34 2.41 6.38

45.68 49.90 52.21

0.78 0.84 0.63 0.52 1.04 0.80 0.91 0.82 0.69 0.71

0.84 0.92 0.81 1.17 1.81 1.18 1.23 1.06 0.77 0.79

1.97 1.57 4.69

6.72 5.71 9.17

1.00 1.38 1.25 0.63 0.75 1.13 1.25 0.88 1.13 1.25

1.38 0.75 1.57 0.33 0.50 1.83 1.63 1.13 1.86 1.83

4.16 2.05 5.26

43.12 47.33 49.05

0.76 0.92 1.04 0.74 0.71 1.13 0.89 0.83 0.99 1.28

0.92 0.71 0.78 0.52 1.22 1.17 1.30 1.24 1.07 1.60

1.64 1.22 5.51

7.17 8.07 8.68

0.25 0.50 0.25 0.50 0.50 1.25 1.00 1.25 1.25 0.25

2.00 1.50 1.00 1.00 1.50 2.33 1.75 1.25 2.67 2.00

3.00 2.00 4.56

46.54 51.89 50.88

0.50 0.58 0.50 1.00 0.58 1.26

0.50 1.26 0.50

0.84 0.71

-

-

-

0.71 0.58 0.50 0.96 1.15 -

1.22 1.66 5.05

5.86 4.84 6.64

aCASQ = Children’s Attributional Style Questionnaire bC-FES = Children’s Family Environment Scale

thinking [F(l, 23) = 8.10, p < .009] than ALL siblings. No other analyses were significant when comparing ALL and tumor patients.

To determine whether gender influenced measures of coping adapta- tion or family functioning, a series of 2(Group: patients vs. siblings) x 2(Gender) analyses of variance were performed across measures for

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66 The American Journal of Family Therapy, Vol. 21, No. 1, Spring 1993

siblings and patients. No significant main effects or interactions were obtained.

To determine whether the siblings’ age influenced adjustment and coping, a series of Pearson product moment correlations were performed to examine the relationship between siblings’ chronological age and the dependent measures. The results of these analyses indicated that age was positively related to the majority of coping strategies, including fre- quency of social withdrawal, r = -50, p < .006, blaming others, r = .57, p < .002, problem solving, r = .47 p < .009, and emotional restructuring, Y = .59, p < .001. Regarding efficacy of coping strategies, age was posi- tively related to blaming others, r = .83, p < .005, and problem solving, Y = .56, p < .004. These findings indicate that as siblings’ chronological ages increased so did their endorsement of the efficacy and frequency of these coping strategies.

Cancer patients’ age at diagnosis yielded nonsignificant correlations with sibling coping, adaptation, and family functioning.

To determine the effect of sibling birth order (younger, twin, or older) on sibling measures of adaptation and coping, a series of Spearman rank- order correlation coefficients were performed and yielded a significant negative correlation for the personal growth dimension of the C-FES, r = -.39, p < .02, indicating that with age children’s perceptions of participation in family involvement decreased. No other correlation coef- ficients were significant for birth order.

Finally, a significant correlation was obtained for number of siblings in the family and the CASQ good summary score, r = .35, p < .01, indicating that as number of siblings increased so did positive attribu- tions.

DISCUSSION

The first purpose of the present investigation was to examine coping, adaptation, and family functioning in siblings of cancer patients, their sick brother or sister, as well as children from a nonclinical control group who have a healthy sibling. The present study was unique as it incorpo- rated self-report measures of coping and adaptation as well as the chil- dren’s assessment of their family’s functioning. Despite the prognostic risk factors of a life-threatening illness, the absence of difficulties in cop- ing and adaptation in siblings and their ill brothers and sisters is encour- aging and supports other research that has suggested generally good coping and adjustment in pediatric patients with cancer and their families (Cairns et al., 1979; Lavigne & Ryan, 1979; No11 et al., 1990; Sawyer et al., 1986).

Although no differential coping styles or frequencies of coping strate- gies were found among the groups, suggesting generally good adapta- tion, a sibling subgroup analysis indicated that siblings of tumor patients engaged more frequently in wishful thinking as a means of coping. When compared to other strategies assessed by the Kidcope, the strategy of wishful thinking endorsed by siblings of tumor patients tended to tap

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Adaptation Among Siblings of Cancer Patients 67

more cognitive processing with a self-orientation rather than seeking help from others or overt expression of emotion. It might be conjectured that the differences in the shorter treatment regimen, which generally requires fewer clinic visits for the tumor patients in comparison to the ALL patients, may contribute to less involvement of the siblings with the treatment team. Therefore, siblings of tumor patients may have less opportunities to access information and to experience supportive interac- tion with the medical team. This may necessitate their engagement in more introspective coping strategies. Further research is needed to inves- tigate the validity of this hypothesis.

While no significant differences were noted, an examination of Table 2 indicates that patients endorsed greater frequencies of the majority of coping strategies on the Kidcope in comparison to siblings. However, siblings rated greater efficacy of the coping strategies than did patients. This suggests that siblings reported that the coping strategies work better than did their ill brother or sister, yet they do not use these strategies any more frequently than do the patients. It is likely that siblings did not experience the stressors of their ill brothers and sisters; thus, they did not need to engage in these strategies as frequently. However, they seemed cognizant of what was efficacious, thereby enabling them to possibly assist their sick brother or sister in coping during this stressful period.

Our second hypothesis regarding the impact of family constellation factors and variables relating to individual differences for siblings of chil- dren with cancer is supported. As would be expected, there was a ten- dency for older siblings to endorse a greater frequency and efficacy of introspective (social withdrawal), projective (blaming others), and prob- lem-solving coping strategies (problem solving and emotional restructur- ing). Moreover, older siblings reported that blaming others and problem solving were more efficacious than any of the other coping strategies.

Further association existed between sibling adjustment, position in the family, and size of the family. The more siblings in the family, the better adjustment reported by the siblings as evidenced by better adaptation with more positive attributions for good events and a less depression- ogenic attributional style. The effect of family size in this study is consis- tent with the literature regarding siblings of children with developmental disabilities. Children from larger families have been reported to have greater physical and social competencies (Dyson, 1989; Kazak & Clark, 1986). This is likely due to greater potential availability of older siblings to provide support. Finally, in our study, older siblings in the family reported less perception of family involvement. One explanation for this finding is that older siblings may have been given greater responsibility for caring for younger siblings and taking care of domestic activities at home while their brother or sister was ill. Thus, having an ill brother or sister results in increased responsibility for older siblings, decreased participation in family activities, resulting in less positive feelings regard- ing their family and the cancer experience. Although this interpretation is in accord with those findings presented by Lavigne and Ryan (1979),

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68 The American Journal of Family Therapy, Vol. 21, No. 1, Spring 1993

additional studies are needed that employ interview and qualitative data to further understand and validate these findings.

From a family systems perspective, the findings of the present study that older siblings are more withdrawn and perceive themselves as less involved in the family may suggest that they are required to assume parental roles thereby blurring parent-child boundaries. Additionally, the alliance formed between the chronically ill child and the parents, precipitated by the intensity of the medical treatment and emotional stress of coping with a life-threatening illness, further serves to isolate healthy siblings. Thus, it is not surprising that healthy siblings distance themselves and perceive less family involvement. The precipitating changes in the alliances and roles likely changes the homeostasis within the family. This may cause the family to encourage the older siblings to withdraw emotionally and make fewer demands on the family system in an attempt to maintain equilibrium within the family. In families where there is a larger sibship, different sibling subsystems may emerge. These subsystems may serve to provide support for the healthy siblings during the crisis period when the alliance between the parents and the sick child is paramount.

In conclusion, data from the present investigation suggest that cancer may not have a universally negative psychological impact on siblings or families. While there were no objective difficulties in siblings’ or patients’ adaptation to the disease, siblings’ coping strategies were found to be related to type of cancer. Our analysis did not reveal gender differences. These present findings are at some variance with those of Dyson (1989), who found gender differences between brothers and sisters of handi- capped children suggesting greater isolation and depressive symptoms in the brothers. It should be noted, however, that the present study examined primarily coping and adaptation; depression was not examined specifically. Thus, future studies are needed to examine depression in siblings of cancer patients to determine whether there is a differential gender effect in this area.

Future research efforts on sibling adaptation, adjustment, and family functioning need to focus on the process by which siblings adjust to having a brother or sister diagnosed with cancer and to identify risk factors that may predict poorer adjustment as well as vulnerable periods subsequent to the diagnosis of a sibling with cancer. This objective could be established through use of longitudinal studies rather than a cross- sectional design, which admittedly is a limitation of the present study. A goal of future research will be the identification of other factors, including parent and peer support, that occur both within and outside the family system that affect sibling adaptation and adjustment. Certainly, future investigations need to incorporate measures of adaptation and focus on how siblings cope, by means of interviews and with less dependence on self-report measures. Additionally, inclusion of teacher reports may contribute to a broader understanding of sibling adaptation. Through such research, it will be possible to identify siblings and families at risk for failures in adaptation. This may help formulate interventions that

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Adaptation Among Siblings of Cancer Patients 69

would assist families in adjusting and coping with a life-threatening illness.

While the general findings of this study suggest reasonable adaptation to the stressors of a family with cancer, this does not negate the need for careful ongoing evaluation of all family members including siblings. The family therapist needs to be cognizant of the stages of coping a family may experience when faced with a life-threatening illness. Subsystems that develop may appear pathological but, in fact, may potentially serve as adaptive means for coping. Thus, the family therapist needs to contin- ually assess roles, boundaries, and alliance within the family over the course of the chronic illness, keeping in mind adaptive strategies (e.g., role changes) that may be effective during the crisis period but may require modification during the more chronic phase of the treatment process. It has been our clinical experience that some siblings do manifest significant adjustment difficulties. When working clinically with cancer patients in assisting them with the adjustment process, it is important to involve the entire family, including the siblings. Ongoing psychosocial support and psychoeducation for the siblings should be integral compo- nents of the treatment program. Those siblings who are evidencing psy- chopathology or impairments in familial or social functioning will require more extensive clinical intervention focusing on the entire family. Given the finding that siblings cope generally well with the cancer experience, any significant difficulties that do appear should be taken seriously so that appropriate treatment may be rendered.

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