Family Functioning and Coping Styles in Families of Children With Cancer and HIV Disease

Abstract

Disease-specific characteristics of pediatric illnesses may influence the functioning of families and the coping responses they enact. This study compared family functioning and coping styles within and between 2 different medical groups: families of children with cancer (n = 44) and HIV disease (n = 65). Most caregivers reported healthy family functioning, and no between-group differences in functioning emerged. However, with regard to coping, more reliance on social support was indicated among the cancer group. Also, the HIV group largely sought support from family, whereas both family and nonfamily support were sought among the cancer group. Better functioning was related to reframing, an active coping style, within the cancer group and passive coping within the HIV group. Thus, coping strategies and their implications for family functioning vary by condition. Researchers should avoid combining various illness groups indiscriminately. Likewise, clinicians should be sensitive to disease-specific factors when helping families learn to cope with illness-related stressors.

Introduction

Pediatric illness can profoundly affect the functioning of affected families and the coping styles they enact. Children with serious medical conditions and their families may encounter multiple lifestyle constraints, financial obligations, and social stressors in the accommodation of illness and associated treatments.^1,2 The nature and severity of these difficulties vary according to illness and may differentially affect the well-being of family members and the utility of various coping strategies. Previous research has often ignored potentially important disease-specific differences by lumping multiple illness groups into one sample. Thus, the nuanced experiences of families of children with various conditions, such as cancer and HIV disease, are poorly understood at present.

To date, research on functioning among families faced with pediatric cancer has yielded mixed results. Whereas some studies have suggested that behavioral and/or emotional functioning among family members is not significantly impaired long term,^3,4 others have reported negative effects on parents^5,6 and siblings of children with cancer.^7,8 Research on HIV-positive children and their caregivers has found that notable proportions meet criteria for psychiatric disorders⁹ or clinically significant dysfunction based on standardized measures.¹⁰

In response to illness-related stressors, families of children with cancer or HIV disease may implement various coping strategies that influence functioning. These strategies can be characterized as active or passive depending on whether control is claimed or relinquished in managing the problem.¹¹ Active coping styles, such as implementing goal-oriented actions or problem-solving techniques, have been linked to positive psychological outcomes among families living with pediatric cancer⁵ and adults with HIV disease.¹² Conversely, passive coping techniques, such as denial or disengagement, have been associated with poorer psychological functioning among parents of children with cancer¹³ and adolescents with HIV disease.¹⁴ Despite these trends, the utilization and effectiveness of specific coping strategies may be contingent on the medical condition for which they are employed. For example, because of the stigma surrounding HIV disease,¹⁵ actively reaching out to others for social support may be more challenging and less beneficial for families facing pediatric HIV disease compared with families dealing with other pediatric illnesses.

In sum, illness-specific differences in family functioning and the effectiveness of various coping styles remain unclear. Further, more research is needed that focuses on functioning and coping of the family as a unit, rather than at the level of its individual members. We sought to address these issues by selecting 2 pediatric illness groups, cancer and HIV disease, that have unique symptoms and stressors and exploring family functioning and coping across and within these groups. We hypothesized that families in the 2 groups would display different levels of functioning and use certain coping strategies to different extents based on the unique stressors conferred by their disease. Specifically, we expected that HIV-affected families would rely less on social support than families of children with cancer because of HIV-related stigma. In an exploratory fashion, we sought to determine whether families of HIV-infected children would seek support from family members more than nonmembers. We also hypothesized that, within both groups, families with better global functioning would use more active coping strategies and less passive coping.

Methods

Participants

All eligible caregivers of 44 pediatric patients with cancer and 65 pediatric patients with vertically acquired HIV disease participated in the current study. Patients were required to be between the ages of 0 and 18 years and at least 6 months postdiagnosis.

Measures

The Family Assessment Device (FAD) contains a 12-item Global Functioning Scale (GFS) designed to assess overall health/pathology in the family.¹⁶ Caregivers rate the degree to which each statement describes their family, with responses on a 4-point Likert-type scale ranging from “strongly agree” to “strongly disagree.” Lower scores reflect better functioning, and a score of ≤2.0 distinguishes families with healthy versus unhealthy functioning.¹⁷ The GFS subscale has demonstrated favorable reliability (Cronbach’s coefficient α = .92) and validity.^18,19 The internal consistency of the GFS subscale in the current study was .86 in the cancer group and .89 in the HIV group.

The Family Crisis Oriented Personal Evaluation Scales (F-COPES) is a 29-item measure designed to assess coping strategies used by families in response to difficult situations.²⁰ Caregivers rate the extent to which their family engages in various coping techniques on a 5-point Likert-type scale ranging from “strongly agree” to “strongly disagree.” Responses yield scores on 5 subscales: Acquiring Social Support (actively seeking support from others; 9 items), Reframing (redefining stressful events to improve their manageability; 8 items), Seeking Spiritual Support (using involvement in an organized religion; 4 items), Mobilizing Family Support (ascertaining community resources and assistance from others; 4 items), and Passive Appraisal (minimizing reactivity to stressors; 4 items). The scale authors reported internal consistencies ranging from .63 (Passive Appraisal) to .83 (Acquiring Social Support). Reliability and validity are well established.^21,22 Because F-COPES subscales differ in the number of items and range of possible raw scores, subscale means are presented, with higher scores representing more use of the coping technique.

In the present study, 2 of the 8 items from the Reframing subscale with low item—total correlations were removed. In the cancer group, the internal consistency of F-COPES subscales ranged from .62 (Mobilizing Family Support) to .87 (Seeking Spiritual Support). In the HIV group, αs ranged from .62 (Passive Appraisal) to .86 (Acquiring Social Support). The low α coefficient for the Passive Appraisal subscale in the HIV group is similar to that reported by the authors of the scale in its initial validation (.63).

Sociodemographic data, including race, caregiver education, family composition, and child—caregiver relationship, were assessed via a background questionnaire completed by caregivers. Medical data, including HIV viral load and time since diagnosis, were obtained through chart review.

Procedures

This study was conducted at the National Cancer Institute (NCI) as part of several larger medical protocols involving cancer and HIV treatment. The NCI’s institutional review board approved all protocols involving the current study. Patients were referred to the institute from across the country, usually by their local medical providers. Patients aged 18 years and caregivers of patients younger than 18 years provided informed consent. Data were collected during routine outpatient clinic appointments. Usually only one caregiver accompanied the child to the clinic. If more than one caregiver was present, the one who typically spent more time with the child was asked to complete the questionnaires. Data from the cancer group were from the child’s most recent evaluation in which family measures were completed. To minimize group differences in time since diagnosis, the HIV group’s data were from the first evaluation in which family measures were completed that did not coincide with a treatment change.

Statistical Analyses

Independent samples t tests, χ² tests of independence, or Fisher’s exact test were conducted to determine relationships between demographic factors and illness group. Computations of Cronbach’s coefficient α (as described above) were considered exploratory, particularly with regards to the F-COPES, since this instrument has rarely been used with the disease populations examined here. Analyses of variance were used to assess the relationship of illness group to family functioning and coping. T tests were computed to examine the difference between F-COPES social support items referring to family versus nonfamily members. Pearson correlations assessed relationships between family functioning and coping strategies within each illness group. To reduce family-wise error, α was set at .01.

Results

Demographic and Medical Variables

Patients in the cancer group ranged in age from 2 to 18 years (M = 10.9, SD = 4.1), with a mean time since diagnosis of 3.5 years (SD = 3.5). Thus, all these patients were considered to be in a “chronic” phase of their illness, with no signs of recurrence. Diagnoses included central nervous system tumors (80%) and leukemia (20%). In all, 61% had undergone radiation therapy (median dose = 5580 cGy), 59% had taken standard chemotherapy regimens, and 59% had undergone surgical resection. The mean caregiver education level was 14.6 years (SD = 2.6, range = 6–19 years). Most caregivers who completed the questionnaires were mothers (82%).

Patients in the HIV group ranged in age from 3 to 18 years (M = 11.2, SD = 3.3), with a mean time since diagnosis of 9.8 years (SD = 3.3) Most children (86%) were on highly active antiretroviral therapy (HAART; mean time on HAART = 4.1 years, SD = 2.3). The mean caregiver education level was 13.7 years (SD = 2.1, range = 8–19 years), and 35% of primary caregivers were HIV-positive. Most (75%) respondents were mothers. Patients were relatively healthy (mean CD4% = 26, median viral load = 906.5). Additional demographic data for patients in both illness groups and caregivers are shown in Table 1.

Table 1.

Demographic Data for Children With Cancer (n = 44) and HIV Disease (n = 65)

	Cancer		HIV Disease
Characteristic	n	Percentage	n	Percentage	P
Gender					.76
Male	25	57	35	54
Female	19	43	30	46
Race					.02
White	28	64	27	42
Black	10	23	28	43
Hispanic	3	7	7	11
Native American	0	0	2	3
Asian/Pacific Islander	2	4	0	0
Multiracial	1	2	1	2
Family composition					.08
Single-parent	10	23	25	38
Two-parent	34	77	40	62
Child–caregiver relationship					<.001
Biological	42	96	28	43
Other	2	4	37	57

A greater proportion of children in the cancer versus HIV group were living with a biological caregiver (P < .001). Time since diagnosis was significantly less in the cancer versus HIV group (t = 9.5, P < .001). Although there was no significant age difference across the 2 groups, in the HIV group, older age was associated with higher scores (indicating worse functioning) on the GFS (r = .40, P < .01). No other demographic or family background variables were significantly related to GFS or F-COPES scores for either group (Ps > .01).

Functioning and Coping Across Illness Groups

Nine (20%) families in the cancer group and 13 (20%) families in the HIV group scored in the unhealthy range of global functioning (≥2.0). Mean GFS scores were 1.64 ± 0.47 for the cancer group and 1.61 ± 0.50 for the HIV group, and these scores were not significantly different from each other (F = 0.12, P > .01).

Table 2 presents standardized F-COPES subscale scores for both groups. A comparison of coping between the 2 groups revealed that families of children with cancer scored significantly higher on the Acquiring Social Support subscale than families of HIV-positive children (F = 7.03, P < .01). When items from this subscale were grouped according to whether the associated sources of support were family members versus nonmembers, follow-up analyses indicated that families of HIV-infected children endorsed obtaining support from members more than nonmembers (t = 4.90, P < .001). The difference between support obtained from members versus nonmembers within the cancer group was not significant (t = −0.11, P > .01). No other F-COPES subscales were significantly different between groups (Ps > .01).

Table 2.

Standardized Scores on the F-COPES Subscales^a Among Families of Children With Cancer (n = 44) and HIV Disease (n = 65)

	Cancer		HIV Disease
Subscale	Mean	SD	Mean	SD
Acquiring Social Supportb	3.6	0.66	3.1	0.88
Reframing	4.0	0.70	4.1	0.45
Seeking Spiritual Support	3.8	0.93	3.8	0.97
Mobilizing Family Support	3.6	0.72	3.7	0.83
Passive Appraisal	4.0	0.79	4.0	0.76

Abbreviations: F-COPES, Family Crisis Oriented Personal Evaluation Scales; SD, standard deviation.

^aHigher scores represent more frequent use of the coping strategy. Possible scores range from 1 to 5.

^bP < .01, indicating significant difference between families of children with cancer versus HIV disease.

Functioning and Coping Within Illness Groups

Among the families of children with cancer, lower scores on the GFS (indicating better family functioning) were correlated with higher scores (indicating more frequent use) on the F-COPES Reframing subscale (r = −.43, P < .01). Among families of children with HIV disease, lower GFS scores were correlated with higher F-COPES Passive Appraisal scores (r = −.34, P < .01). GFS scores were not related to any other F-COPES subscales in either group.

Discussion

Global Family Functioning

In this comparison of families of children with cancer and HIV disease, most children from both groups were physically healthy at the time of the assessment. The majority of caregivers reported positive family functioning, and no significant difference in overall functioning was found between the groups. In comparison, one study was identified that used the GFS among adolescent cancer survivors, including those with leukemia, solid tumors, lymphoma, and “various other cancer diagnoses.”²³ Results indicated a mean GFS score of 1.87, which is slightly below the clinical cut-off and similar to the mean GFS score in our study. However, a substantially higher proportion of participants’ scores fell in the unhealthy range (35%). This discrepancy may reflect systematic differences across samples in terms of cancer type, age, and other variables. Thus, although our results are encouraging, follow-up studies are needed to understand the impact of disease characteristics and sociodemographic factors on family functioning among families of children with cancer.

Similarly, further research on functioning among families of children with HIV is warranted, since our results provide a more encouraging view of the functioning of these families than what has been suggested by prior research.^9,10 No previous studies were identified that assessed family functioning with the GFS scale in the pediatric HIV population. However, the GFS offers a quick, easy way to identify families at risk for negative psychological outcomes in this and other disease groups. Importantly, families with unhealthy functioning should be targeted for interventions to prevent deleterious consequences to the child. Interventions should be tailored to address the unique needs associated with the child’s disease.

Family Coping

As hypothesized, families of HIV-infected children used social support less than families of children with cancer, and sought support from within versus outside the family, presumably due to stigmatization fears. Despite educational efforts to foster HIV awareness within the community, perceptions of stigma remain among HIV-positive individuals^15,24 and are stronger than perceived stigma among cancer patients.²⁵ Clinicians should be sensitive to this stigma and other disease-specific factors that may interfere with the development of a healthy support system and should be prepared to provide referrals to community or online support groups. Further research is needed to understand disease-specific barriers to the acquisition of social support among families coping with pediatric illness and to develop sensitive interventions to overcome such barriers.

Family Functioning in Relation to Coping

Our hypothesis that better global functioning would relate to more active and less passive coping in both disease groups was partially supported. Consistent with previous findings linking active coping to improved psychological well-being,⁵ cognitive reframing was associated with better family functioning among our families of children with cancer. F-COPES Reframing items focus on redefining stressful events to make them more manageable. Teaching families dealing with pediatric cancer to use reframing as a coping strategy would be worthwhile. Accordingly, past research has demonstrated the utility of cognitive behavioral interventions (which commonly employ this technique) in enhancing coping skills among medical patients and their families.²⁶

In contrast, better family functioning related to more passive coping among families of HIV-infected children. Perhaps these families, compared to families in the cancer group, faced fewer or more foreseeable illness-related challenges (eg, because the disease was under control with successful drug therapy) that required immediate, active responses. In accordance with this idea, Fleishman et al²⁷ found that HIV-positive adults with a passive coping style had fewer physical symptoms and better emotional functioning than groups using other coping styles (eg, active approach, blame-withdrawal). In that study, passive coping was defined as the lack of engagement in coping behaviors. Fleishman et al²⁷ speculated that the patients who did not engage in coping behaviors were not faced with many illness-related stressors that necessitated active responses. Notably, the coping measure employed in that study was specific to HIV-related stressors, whereas the F-COPES used in the current study assessed coping with nonspecific difficulties, suggesting the utility of passive coping may extend to other life domains.

Study Limitations and Future Directions

Several methodological limitations and places for future development are worthy of mention. First, it would have been ideal to have multiple family members complete family questionnaires to assess the level of consistency in their perspectives. However, one caregiver completed the measures in our study because often only one caregiver accompanied the child to the clinic, and many children in the HIV group lived in single-parent households. Although this approach was not optimal, other studies have reported reliable findings based on one caregiver on both the FAD and F-COPES.^28,29

Second, the difference in racial composition of our cancer-affected families (23% African American) versus our HIV-affected families (43% African American), although not statistically significant, raises the question of whether cultural background partially accounts for the between-group differences we observed. For example, race could indirectly affect the likelihood of seeking support from various sources as a function of systematic differences in the nature and magnitude of perceived barriers. Previous research has documented varied experiences of stigma based on ethnic/racial background³⁰ as well as greater HIV-related discrimination perceived by African Americans versus other ethnic groups.³¹ Thus, further research is needed to clarify the relevance of race and other background characteristics to family coping techniques, including social support seeking.

Third, future longitudinal studies should assess global functioning and coping throughout different phases of illness (ie, newly diagnosed to posttreatment). This approach would help to determine the immediate and long-term utility of coping strategies used at different points during illness, as well as to delineate more specifically the relationship between disease characteristics, family functioning, and coping. As outlined in the Resiliency Model of Family Adjustment and Adaptation,³² the relationship is probably circular, with families functioning at a certain level prior to diagnosis and/or the emergence of disease-related stressors. When stressors occur during the child’s illness, both disease characteristics and baseline functioning may predict the family’s appraisal of the stressors and the coping techniques they engage. The use of a longitudinal design in subsequent research would help clarify this dynamic.

Conclusions

Global family functioning was relatively healthy in families of children with cancer and HIV disease who participated in this study. However, clinicians should be aware that the coping styles used by families and their effectiveness vary according to disease-specific characteristics, with healthier functioning being related to active reframing among families of children with cancer and to passive coping among families of HIV-infected children with a relatively stable disease course. In addition to highlighting the importance of clinician sensitivity to disease-specific characteristics, such differences emphasize that researchers should use caution in combining multiple illness populations into one sample.