Cancer-Related Parental Beliefs: The Family Illness Beliefs Inventory (FIBI)
1 The Children’s Hospital of Philadelphia and the University of Pennsylvania, 2 The Children’s Hospital of Philadelphia, and 3 the University of Pennsylvania
All correspondence should be sent to Anne E. Kazak, The Children’s Hospital of Philadelphia, 34th St. and Civic Center Blvd., Room 1486 CHOP North, Philadelphia, Pennsylvania 19104–3299. E-mail: kazak{at}email.chop.edu.
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Abstract |
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Objective The goal of this study was to develop a reliable and valid method for assessing the cancer-related beliefs of parents with a child in treatment for cancer. Method One hundred twenty-five families (119 mothers, 56 fathers) completed a measure of cancer-related beliefs written to reflect common themes associated with the diagnosis and treatment of childhood cancer. Participants also completed self-report questionnaires used for validation of the Family Illness Beliefs Inventory (FIBI). Results Principal-components analysis was used to derive a 41-item five-factor solution from the maternal data—Factor 1: Treatment-Related Suffering; Factor 2: Death and Devastation; Factor 3: Caregiver Competence; Factor 4: Connection; and Factor 5: Finding Meaning. Correlations with validation measures supported the factor structure. Paternal data showed similar patterns. Conclusions The FIBI is a psychometrically sound method for identifying parental cancer-related beliefs. This measure may be helpful in developing and evaluating interventions to reduce parental distress related to childhood cancer and promote adaptive family functioning.
Key words: parents; families; beliefs; childhood cancer.
A child’s illness and treatment occur within and have an impact upon the broader context of the family (Kazak, Rourke, & Crump, 2003
). For example, it is common for parents to experience significant emotional distress after learning that their child has cancer (Sloper, 2000; Yeh, 2002) and for families to go through a period of severe disruption (Weihs & Reiss, 2000). This distress and disorganization is understandable, and even expected. Parents fear for their child’s life and must negotiate complex treatment decisions with multiple new health care providers, take on new roles and responsibilities to meet the demands of treatment, and comfort their child.
For most families, new adaptive patterns are achieved and distress tends to subside within a year (Dahlquist, Czyzewski, & Jones, 1996; Hoekstra-Weebers, Heuvel, Jaspers, Kamps, & Klip, 1998). However, there is a subset of mothers and fathers for whom significant distress continues, years after treatment ends (Kazak et al., 1997). Indeed, prospective studies indicate that distress during treatment is predictive of ongoing distress after treatment ends (Kupst et al., 1995). Understanding the process by which recovery (or, alternatively, continuing distress) occurs is important for designing effective interventions to promote family adjustment.
The stress and coping literature may inform an understanding of family adjustment by emphasizing the role of beliefs. Lazarus (1999) demonstrated that beliefs related to self-efficacy could facilitate adaptation to stressful circumstances, including pediatric illness. Furthermore, identifying and changing certain beliefs have been shown to decrease emotional distress in a range of situations (Ellis, 2001; D’Zurilla & Nezu, 1999). Recent qualitative studies provide insight into beliefs that foster adaptation to childhood cancer. In interviews conducted by McCubbin, Balling, Possin, Frierdich, and Byrne (2002), mothers and fathers of children with cancer reported that rapid mobilization and reorganization of the family and procuring support from their health care team and social support network aided adjustment. Coming to believe that the cancer experience was meaningful, comprehensible, and manageable was also coupled with more resilient responses. Similar themes have been uncovered in other qualitative studies of parents of children with leukemia (McGrath, 2001). Spiritual and religious beliefs may also foster adaptation by helping families find meaning in their experiences, cope with a lack of control, and establish connections with others (Spilka & Hartman, 2000).
In addition to beliefs that promote resiliency, there are beliefs among mothers and fathers of childhood cancer survivors that may foster distress. Those parents who believed that their child would die during treatment, could still die from cancer (years after treatment ended), or found the cancer experience particularly difficult had elevated posttraumatic stress symptoms (PTSS) (Kazak et al., 1998). In other populations, beliefs associated with less adaptive responses included lack of power and control (van der Kolk, McFarlane, & Weisaeth, 1996), perception of threat (Rothblum & Foa, 1996), feelings of vulnerability, and having to struggle to make sense of what was happening (Janoff-Bulman, 1992). These beliefs are consistent with those of parents of children with cancer.
Identification of beliefs is essential, given that they may be important predictors or mediators of outcome for parents of children in pediatric oncology. Yet, to our knowledge, there is no reliable and valid quantitative methodology for assessing cancer-related parental beliefs. The goal of this study was to develop a reliable and valid procedure to measure cancer-related beliefs. We anticipated that this measure would be multifaceted, with some beliefs (e.g., efficacy, support, meaning) positively associated with adaptive outcomes and some (e.g., threat) negatively associated. We also expected that these beliefs would be associated differentially with measures of important outcomes for this population identified from prior literature, including general distress, spiritual beliefs, family functioning, PTSS, and intensity of the child’s cancer treatment.
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Participants
One hundred and twenty-five families (119 mothers, 56 fathers) participated, including 5 families in which grandparents functioned as parents. The majority of participating families included two parents (n = 111; 88.8%). For 50 (45.1%) of these families, data from two parents were obtained. The majority of parents had completed some postsecondary education (nMothers = 95; 79.8%; nFathers = 48; 85.7%). Forty-one percent of families had annual household incomes between $50,000 and $99,999. Families with incomes below $50,000 comprised 39% of the sample. Religious orientations were Catholic, n = 54 (43.2%); Protestant, n = 36 (28.8%); Jewish, n = 7 (5.6%); and no affiliation, n = 2 (1.6%); with 14 (11.2%) not responding to this question. Of the childhood cancer survivors, 70 (56.0%) were male, and 108 (86.4%) were white; their ages ranged from 10 months to 20 years (M = 8.44 years, SD = 5.31). Cancer diagnoses were leukemias, n = 67 (53.6%); lymphomas, n = 11 (8.8%); solid tumors, n = 33 (26.4%); and brain tumors, n = 14 (11.2%). The length of time since diagnosis ranged from 2.50 to 44.30 months (M = 15.66, SD = 10.29).
Measures
Mothers and fathers completed the following measures.
Parental Cancer-Related Beliefs
Family Illness Beliefs Inventory.
The FIBI is a 41-item measure utilizing a card-sort procedure and developed for this study to assess parents’ beliefs about their child’s cancer and treatment. Based on clinical experience and the literature, an interdisciplinary team, including psychologists, oncologists, nurses, and social workers, generated a list of 75 beliefs that parents (both mothers and fathers) may have while their child is undergoing cancer treatment. Our intent at this stage was to develop a broad representation of items to subsequently be tested empirically. In order to structure our item generation based on the existing literature, we identified six potentially important areas—affect, finding meaning, optimism, self-efficacy, connection, and illness-specific beliefs. Each belief was reviewed by the group to ensure its apparent fit with one of these areas and also to provide a relatively even distribution of beliefs across these theoretical groupings. There was no expectation of consensus on specific beliefs. Because we were interested in beliefs that may promote or hinder adaptation, the items were worded to equally reflect beliefs that were growth promoting (There are people I can turn to for help) and growth inhibiting (I can’t handle seeing my child in pain). The group process of generating and refining the wording of the items took approximately 15 hours over 3 months.
During administration of the FIBI, parents were read the following instructions:
Everyone has thoughts, beliefs, and expectations when facing a difficult problem. All kinds of thoughts may pop into our minds when confronted with the diagnosis of cancer. For example, after Carole’s daughter was diagnosed with cancer, she, like many people, thought: "This can’t be happening." Sometimes we become convinced that an idea is real or true. These ideas are then called beliefs. For example, after John’s son was diagnosed, he thought: "No one I know has been diagnosed with cancer before." After a while he started to believe: "I am alone in this."
They were then asked to identify their current beliefs and were handed a stack of index cards on which individual beliefs were printed; they were asked to read each card and sort it into one of four piles: 1 = not at all true for me; 2 = just a little bit true for me; 3 = pretty much true for me; and 4 = very true for me. The FIBI was completed in about 15 minutes.
Three mothers and two fathers of pediatric oncology patients reviewed the list of beliefs and piloted the administration procedure. They reported that the items were relevant and appropriate. They found the measure easy to use and the directions clear. From their recommendation, one item about fear of relapse was added.
General Distress
Brief Symptom Inventory (BSI).
The BSI (Derogatis, 1993) is a 53-item measure of psychopathology that uses a 5-point scale to rate distress during the previous 7 days. Higher scores indicate greater severity of symptoms. The general severity index was used in this study. Test-retest reliability of this index falls in the .80 to .90 range over a period of 2 weeks, and construct validity has been demonstrated against the Minnesota Multiphasic Personality Inventory (Derogatis, 1993). Internal consistency reliability in this study was .97 for mothers and .96 for fathers.
State-Trait Anxiety Inventory (STAI).
The STAI (Spielberger, 1983) is a 40-item self-report questionnaire assessing anxiety. Test-retest reliability falls in the .16 to .33 range and the .76 to .86 range for state anxiety and trait anxiety, respectively, over 20 days. Construct and discriminative validity have been demonstrated for this measure across gender and ethnic groups (Novy, Nelson, Goodwin, & Rowsee, 1993). State anxiety (STAI-S) was measured in this study and showed an internal consistency of .96 for both mothers and fathers.
Beck Hopelessness Scale (BHS).
The BHS (Beck & Steer, 1993) is a 20-item self-report questionnaire consisting of true–false statements measuring perceived hopelessness about the future. The BHS has test-retest reliability of .66 over a period of 6 weeks and has been found to relate to clinician ratings of hopelessness (r = .74) (Beck & Steer, 1993). In our study, the measure had an alpha of .84 for mothers and .87 for fathers.
Posttraumatic Stress
Impact of Event Scale–Revised (IES-R).
The IES-R (Weiss & Marmar, 1997) is a 22-item questionnaire that assesses psychological symptoms associated with a specific traumatic event (e.g., cancer diagnosis or treatment). Each item presents a symptom, and participants use a weighted 4-point scale to rate the frequency with which they experienced that symptom during the past week. An overall sum score is obtained. In studies of parents of childhood cancer survivors, internal consistency for this measure has been reported in the .91 to .95 range (Kazak et al., in press). In this study, Cronbach’s alpha was .92 for both mothers and fathers.
Posttraumatic Stress Disorder Reaction Index (PTSD-RI).
The PTSD-RI (Pynoos et al., 1987) is a 20-item self-report questionnaire that assesses severity of PTSS. Each item is rated for frequency on a 5-point scale. PTSD-RI scores are associated with clinical diagnoses of PTSD (Pynoos et al., 1993). Internal consistency for this measure has been reported to be .89 for parents of childhood cancer survivors (Kazak et al., in press). In this study, alpha was .92 for mothers and .91 for fathers.
Family Measures
Family Assessment Device (FAD).
The FAD (Epstein, Baldwin, & Bishop, 1983) is a 60-item questionnaire based on the McMaster Model of Family Functioning. Each item is a statement about families. Participants rate the extent to which the statement describes their family. The FAD includes a general functioning (GF) scale, which was used in this study. Higher scores indicate poorer functioning. Research supports the factor structure of the FAD (Kabacoff, Miller, Bishop, Epstein, & Keitner, 1990). Cronbach’s alpha was .90 for mothers and .91 for fathers in this study.
Family Life Scales (FLS).
Fisher, Ransom, Terry, Lipkin, and Weiss (1992) developed the FLS for the California Family Health Project. Two scales were used in this study: life engagement (LE), a 10-item measure of the extent to which a family takes risks and enjoys change, and family coherence (FC), a 13-item assessment of efficacy. Participants rated the extent to which each item corresponded to their family on a 6-point scale, with higher scores indicating greater agreement. In previous work (Fisher & Lieberman, 1994), coefficient alphas for these scales have been reported to be .79 and .88, respectively. In our study, Cronbach’s alpha was .62 (LE) and .84 (FC) for mothers and .61 (LE) and .79 (FC) for fathers, respectively.
Spiritual Beliefs
Divine Intervention Scale (DIS).
The DIS is an eight-item scale from the Parents Diabetes Opinion Survey, version 4 (Johnson & Meltzer, 2002), adapted for pediatric cancer. The DIS measures parents’ beliefs about the role of God or a higher power in their child’s illness. Parents rate agreement with the statements on a 5-point Likert scale. Lower scores indicate stronger beliefs in divine intervention. Johnson and Meltzer (2002) report an internal consistency of .82. Our study revealed an alpha of .85 for mothers and .92 for fathers.
Spiritual Involvement and Beliefs Scale (SIBS).
The SIBS (Hatch, Burg, Naberhaus, & Hellmich, 1998) is a 24-item questionnaire that assesses spiritual beliefs and actions across religious traditions. Seventeen items present beliefs rated on a 5-point scale. For the remaining items, participants rate the frequency with which they engage in spiritual activities. The SIBS total score has test-retest reliability of .92 over 7 to 9 months and construct validity in that it has been found to correlate (r = .79) with the Spiritual Well-Being Scale (Hatch et al., 1998). Alpha in this study was .91 for mothers and .70 for fathers.
Cancer Treatment Intensity
Intensity of Treatment Rating (ITR).
A 4-point scale was used to rate the intensity of the cancer treatment protocols. An oncologist, blind to the child’s identity, rated the intensity of each child’s treatment as 1 = surgery/enucleation only or surgery plus short-term chemotherapy protocols; 2 = brain tumor surgery and low or standard risk protocols; 3 = multiple modalities of treatment and high risk protocols; or 4 = metastatic disease, stem cell transplantation. All ratings were based on treatment protocol numbers, medications, and treatment modalities. This scale is used in other studies in our laboratory (Hobbie et al., 2000; Kazak et al., 2004).
Procedure
Families of children who had been diagnosed with a pediatric malignancy and who were in active treatment at The Children’s Hospital of Philadelphia Division of Oncology were identified based on tumor registry data for this institutional review board–approved study. Exclusion criteria were a diagnosis of a brain tumor treated with surgery only, relapsed diseases, or non-English-speaking parents. Letters from key project personnel explaining the purpose and procedure of the study were sent to eligible families. Follow-up telephone calls were made to determine interest and arrange for data collection. Participating parents met a member of the research team in the oncology inpatient and/or outpatient facilities, provided written informed consent, and completed the study. Families were provided with $25 to cover expenses related to study participation.
Subsequent to exclusions of families based on tumor registry data, there were 215 presumed eligible families. Of these, 56 (26.1%) did not respond to recruitment letters and repeated phone calls. Of the 162 contacted families, 23 (14.5%) refused, and 11 (6.9%) agreed to participate but did not keep their appointment, rendering a participation rate of 78.6%.
Participant and nonparticipant families did not differ with regard to child’s age, cancer diagnosis, length of time since diagnosis, or intensity of treatment. Participant families were less ethnically diverse than nonparticipant families, 
2(1, N = 158) = 6.97, p = .01.
Statistical Analysis
The primary aim was to empirically derive a means for assessing cancer-related beliefs of parents of children with cancer. Data for mothers and fathers were analyzed separately.
For mothers, exploratory principal-components factor analysis (PCA) was used to identify the latent structure of the 75-item FIBI and develop scales of beliefs. Five items were removed prior to analysis because the wording was complex and appeared confusing to parents during administration or because the responses for the item had little variability (e.g., I am an important collaborator/team member in my child’s care, M = 3.86, SD = .14). To determine the number of factors to extract, a PCA was conducted without rotation. The resulting scree plot did not give clear indication as to the number of factors to extract, so five solutions were explored, limiting the number of factors to two through six. Varimax rotation was applied to these five solutions, and items with low factor loadings (less than .4 in absolute value) and those with substantial cross loadings on more than one factor were sequentially removed from the model until all remaining items clearly loaded on a single factor with a factor loading of .4 or higher (absolute value).
Scores for each factor were calculated by summing the item responses. Items with negative factor loadings were reverse coded. The internal consistency reliability of each summed factor score was determined using Cronbach’s alpha. In order to examine the relationship of the FIBI factors with child’s age and time since diagnosis, Spearman’s rho correlations were calculated. An analysis of variance was used to test for potential associations of the factors with child’s diagnosis. Due to apparent skew in the factor scores, Spearman’s correlations were used to validate the FIBI by examining the relationship between beliefs on the FIBI and general distress, posttraumatic stress, spiritual beliefs, and family functioning. Spearman’s correlations were also used to validate the FIBI against the measure of cancer treatment intensity. Because the correlation between cancer treatment intensity and Factor 1 was moderate, and Factor 1 was also correlated with Factors 2 and 4, partial correlations were conducted to determine whether ITR was correlated with Factors 2 and 4 when controlling for Factor 1.
The smaller sample of fathers (n = 56) was not sufficient for PCA and therefore necessitated a different (exploratory) approach. To examine whether there were gender differences in response to FIBI items, a series of two sample t-tests were conducted comparing maternal and paternal data on the two top-loading items for each of the five factors. Factor scores and coefficient alphas for the FIBI were calculated for fathers. Paralleling the mothers’ analyses, Spearman’s correlations with the validation measures were conducted.
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Factor Analysis of the FIBI
A five-factor solution retaining 41 items and accounting for 44.3% of the variance best captured the mothers’ data. Table I provides the rotated factor loadings, eigenvalues, and percent variance accounted for by each factor. Table II presents the intercorrelations between the factors. The multidisciplinary group that developed the original items also named the factors.
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Factor 1: Treatment-Related Suffering
The 11 items on this factor represented beliefs about whether the child would suffer as a result of cancer and treatment. Items included beliefs about treatment side effects (e.g., pain, nausea, complications) and beliefs related to feeling overwhelmed and worried that treatment might not work. Higher scores indicated stronger beliefs that the child would suffer from cancer and treatment. Cronbach’s alpha was .83. Factor 1 was related to Factors 2, 4, and 5.
Factor 2: Death and Devastation
The second factor consisted of eight items that captured beliefs related to the possibility that the child could die and the parents and their family would be devastated by cancer and its treatment. Items included beliefs that cancer was a death sentence, their child would die, they could not be much worse off, and their dreams for the future have been shattered. Higher scores on Factor 2 indicated stronger beliefs that the child would die and the family would be adversely affected. Cronbach’s alpha was .80. Factor 2 was related to Factors 1, 3, 4, and 5.
Factor 3: Caregiver Competence
These nine items reflected beliefs about the competence of the parents and health care team in caring for the child. The items included beliefs about the extent to which health care providers would provide good care and understand and help the family. This factor also included items about perceived parental competence, including cancer-specific events such as making treatment decisions and helping the child through the treatment process. Higher scores indicated stronger beliefs that the caregivers were competent. Cronbach’s alpha was .72. Factor 3 was related to Factors 2, 4, and 5.
Factor 4: Connection
Beliefs about connections with others, both within and external to the family, and the likelihood of sharing cancer-related experiences or feelings with others characterized this eight-item factor. Higher scores indicated stronger beliefs that the family would connect with others (e.g., be less isolated). Cronbach’s alpha was .74. Factor 4 was related to Factors 1, 2, 3, and 5.
Factor 5: Finding Meaning
The five items on this factor described beliefs about whether cancer would have meaningful positive consequences for the child or the family. The items in this scale included the idea that everything happens for a reason, that cancer would make them better people, and that their faith would be helpful. Higher scores on this scale indicated stronger beliefs that cancer would include a positive meaningful effect. Cronbach’s alpha was .74. Factor 5 was related to Factors 1, 2, 3, and 4.
Validation of the FIBI Factors
The association of maternal FIBI factors with diagnosis, child age, length of time since diagnosis, and intensity of treatment was examined, due to the prominence of these variables in the cancer literature. There were no significant correlations between the five FIBI factors and diagnosis or length of time since diagnosis. Child age was significantly correlated with Factor 1, treatment-related suffering (r = .19, p = .04), suggesting a positive low magnitude association.
Spearman’s correlation coefficients were used to examine the relationships between the five FIBI factors and general distress, PTSS, family functioning, and other beliefs (Table III). Since the factors were empirically defined from the PCA, we were not able to make specific a priori hypotheses about associations of the FIBI with the validation measures. However, the factors extracted appear consistent with the general beliefs that we anticipated would be important and that guided our selection of the validation measures.
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The pattern of correlations supports the validation of the five factors (Table III). The first two factors demonstrate significant correlations with the measures assessing more general psychological distress. Specifically, Factor 1, Treatment-Related Suffering, was significantly correlated with the three general distress measures, indicating that higher levels of anxiety (STAI-S), more symptoms of psychopathology (BSI) and greater hopelessness (BHS) were associated with stronger beliefs that the child’s treatment would be difficult and overwhelming. In addition, Factor 1 was significantly correlated with the PTSS measures, indicating that beliefs about the difficulty and suffering associated with treatment were related to PTSS such as intrusive thoughts, arousal, and avoidance. Finally, Factor 1 was significantly and positively associated with ITR (r = .39, p < .001).
The pattern of correlations for Factor 2, Death and Devastation, was similar to that of Factor 1. Beliefs that the child was likely to die and that the cancer experience would be aversive for the family were associated with reports of greater psychological distress on the STAI-S, BSI, and BHS. Scores on this factor were also significantly associated with less adaptive family functioning. In addition, stronger spiritual beliefs on the SIBS were associated with lower scores on this factor. While Factor 2 was significantly associated with ITR (r = .26, p < .01), this relationship was no longer significant after controlling for Factor 1, Treatment-Related Suffering (r = .07, p > .05), which accounts for most of the association between the FIBI beliefs and ITR.
Factors 3 and 4 represented beliefs associated with caregiver competence and connections with others. Significant correlations with the family validation measures for Factor 3 (Caregiver Competence) and Factor 4 (Connection) were seen and were consistent across the FAD and FLS. Specifically, more adaptive family functioning was associated with beliefs indicating competence in caregiving and more connection. Table II shows these correlations, which reflect the scoring of the FAD (lower scores reflect more adaptive functioning). Scores on Factor 4, indicating more connection, were also inversely correlated with hopelessness. ITR was not related to Factor 3 (r = .10, p > .05). Similar to Factor 2, zero-order correlations suggested that Factor 4 was significantly associated with ITR (r = –.27, p < .01), but this relationship became insignificant after controlling for overlap between Factors 4 and 1 (r = –.11, p > .05).
Factor 5, finding meaning, was significantly correlated with hopelessness (BHS), belief in divine intervention (DIS), and overall family functioning, indicating associations between Finding Meaning and more adaptive family functioning, less hopelessness, and greater belief in divine intervention. Factor 5 was not significantly associated with ITR (r = –.11, p > .05).
Father Data
In order to examine the extent to which there might be gender differences in response to FIBI items, responses from mothers were compared with responses from fathers on the two top-loading items from each of the five factors. For 9 of the 10 items, there were no significant differences as a function of parent gender. Responses to an item from Factor 4, Connection (People will pull away from us), were significantly different (t = 2.24, p = .03), with mothers believing this slightly more strongly than fathers (M = 1.53 and 1.30, respectively). This difference, while statistically significant, did not appear to reflect a meaningful gender difference. In light of this and with good Cronbach alphas for the factors for fathers (Factor 1 = .78, Factor 2 = .61, Factor 3 = .70, Factor 4 = .71, Factor 5 = .62), the initial factor structure was used for fathers.
Table IV presents Spearman’s correlations between the FIBI factors and the validation measures for fathers. Like the data for mothers, the FIBI factors were supported by the pattern of correlations observed. For Factors 1 and 2, the pattern of correlations was very similar. For example, Factor 1, Treatment-Related Suffering, was significantly related to anxiety (STAI-S), symptoms of psychopathology (BSI), posttraumatic stress (IES-R, PTSD-RI), family efficacy (FLS-FC), and treatment intensity. Factor 2, Death and Devastation, was related to all three measures of general distress—anxiety (STAI-S), symptoms of psychopathology (BSI), and hopelessness (BHS)—and to the family variables (FAD GF, FLS-LE, and FLS-FC). Factor 3, caregiver competence, was correlated with belief in divine intervention (DIS) and family efficacy (FLS-FC), while Factor 4, Connection, was significantly correlated with anxiety (STAI-S), posttraumatic stress (IES-R, PTSD-RI), and family efficacy (FLS-FC). Factor 5, Finding Meaning, was inversely related to hopelessness (BHS) and positively correlated with spiritual beliefs (SIBS, DIS).
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Discussion |
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The beliefs that parents hold regarding their child’s cancer diagnosis and their subsequent treatment-related experiences are undoubtedly important in understanding both short- and long-term adaptation processes. Such beliefs may also be central to interventions to reduce distress and promote adaptive functioning in the face of serious pediatric illness. Yet, the assessment of illness-specific parental beliefs has not been well described in the literature. The FIBI uses a card-sort procedure for assessing the cancer-related beliefs of mothers and fathers of newly diagnosed pediatric oncology patients, consisting of five factors, and has good psychometric qualities. Although still at an early phase of instrument development, the belief structure extracted is robust and clinically relevant.
The factors are salient clinically. For example, Factor 1, Treatment-Related Suffering, captures parents’ beliefs about the side effects of cancer treatment. These treatment effects, such as chemotherapy-induced nausea, pain, and hair loss, are central among the issues that parents confront during treatment. Factor 1 showed the strongest independent association with ITR. These beliefs appear to be well suited to interventions to reduce such effects (e.g., procedural pain, pharmacological and psychological approaches to reduce nausea, etc). The pattern of moderate-magnitude (e.g., > .30) validation correlations suggests that Factor 1 scores are associated with anxiety and symptoms of psychopathology and posttraumatic stress for both mothers and fathers. Factor 1 beliefs (e.g., I can’t handle seeing my child in pain, My child’s treatment/procedures will be terrifying) are likely to be malleable with the use of cognitive-behavioral approaches that can be used effectively during treatment.
The life threat inherent in a diagnosis of childhood cancer is very important and central to understanding cancer from a traumatic stress framework. Death and worries about it may not be addressed within families of newly diagnosed patients. Indeed, with an active emphasis on treatment and cure during the early stages of cancer, even when the overall prognosis may be uncertain or unfavorable, parental worries about the child’s death may go unrecognized. Factor 2, Death and Devastation, captures pessimism, anger, and perceptions that there is nothing worse that could have happened. Some of these beliefs may reflect more dispositional tendencies (e.g., pessimism). However, they also reflect some of the most profound anxieties of parents (e.g., My child will die, Our dreams for the future have been shattered) that may be fueling distress and contributing to increased difficulty for parents and families. Factor 2 scores were correlated with Factor 1 scores and were highly correlated with hopelessness for both mothers and fathers. In general, Factor 2 correlations with the validation measures show strong associations with the measures of general distress. Interestingly, for both mothers and fathers, Factor 2 scores were related to family functioning. The perception of generally competent family functioning was associated with lower scores on Factor 2 for mothers and fathers. Families scoring high on Factor 2 may be those at greater need for psychosocial support.
The optimism of parents is captured in Factor 3, Caregiver Competence. Reflecting self-efficacy and inclination to seek and utilize support (e.g., I can meet my child’s needs throughout treatment, The doctors and nurses will help us through this), Factor 3 would appear to reflect the competence that helps the majority of families remain hopeful and confident that they are doing their best to help their child. This factor was unrelated to Factor 1 (treatment-related suffering) but was moderately and negatively correlated with Factor 2 (Death and Devastation), further illustrating the negativity of Factor 2 and the positivity of Factor 3. Correlations between Factor 2 scores and family functioning were particularly strong for mothers (and somewhat less strong for fathers), indicating that perceived competence was associated with overall perceptions of more adaptive functioning. It may be that families who score high on Factor 3 can utilize available psychosocial resources but also effectively tap into their own psychological resources and the help of family and the health care team.
Factor 4, Connection, is in some ways similar to Factor 3 and the reverse of Factor 2. The intercorrelation of the factors bears this out. High scores on Factor 4 indicate connection (e.g., There are people I can turn to for help) and provide insight into the beliefs that may foster a sense of isolation for these parents (e.g., My family shouldn’t see me cry [reverse scored]). For both mothers and fathers, Factor 4 was associated with family functioning. An interesting pattern of correlations is seen for fathers, with significant associations between Factor 4 and the posttraumatic stress measures. The potential take-home message in terms of intervention for families who score low on Factor 4 may be to address their lack of perceived connection and their beliefs that may constrain effective connection with others. For fathers, this may be associated with their encoding of the cancer experience as traumatic.
The notion of finding meaning in adversity is an appealing one, central to nearly all schools of psychotherapy and change-oriented philosophies. In some respects, capturing such beliefs creates particular challenges, as they are difficult to describe, given their overlap with general optimism and with religious and spiritual beliefs. In this study, Factor 5, Finding Meaning, comprised items reflecting both optimism and spirituality (e.g., Life gives you only what you can handle, Our faith will get us through this). As might be expected, Factor 5 scores were positively associated with Factors 3 and 4 and inversely associated with Factors 1 and 2. Factor 5 scores were also inversely associated with hopelessness, strongly related to measures of spiritual beliefs, and, for mothers, associated with family functioning as well. The fact that finding meaning was the weakest of the factors reinforces the complexity of assessing these more existential beliefs and finding consistent relationships with other relevant variables.
The FIBI is at an early stage of instrument development. The factor structure must be replicated in other samples in order to confirm the factor structure. The father data, while based on a reasonable size for a pediatric psychology sample, was not of a size that could support a parallel statistical analysis to the mothers’ data. Although the FIBI items were developed to be gender neutral and were piloted with fathers as well as mothers, the fathers’ results must be interpreted cautiously, as independent analysis of a larger sample of fathers could result in a different factor structure. The FIBI is based on a family (parent) model of beliefs. As such, relatively little emphasis was placed on characteristics of the child that may affect parents’ beliefs. The FIBI was not developed with the intent of identifying beliefs that might characterize families at different developmental stages. However, the weak association between patient age and FIBI factors suggests that it is valid for families of patients of different ages.
In summary, identifying parents’ beliefs about their child’s illness and treatment is an important step in formulating family interventions to reduce distress and enhance well-being. Most effective psychological interventions in pediatric oncology focus on specific aspects of the child’s treatment (e.g., procedural distress, parent response to diagnosis, preparation for bone marrow transplantation, long-term psychological sequelae). A reliable and valid instrument for assessing beliefs can help in the design of protocols that address potentially malleable beliefs.
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Acknowledgements |
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This work was supported by a grant from the National Cancer Institute (CA88828). The authors wish to thank the following members of the Division of Oncology at The Children’s Hospital of Philadelphia for their contributions to the development of the FIBI: M. Catherine Cant, PhD; Susan Ditaranto, RN; Mary McSherry, LSW; Lisa Meltzer, PhD; Jennifer McClain; Anne Reilly, MD; and Ellen Tracy, RN.
Received September 3, 2003; revision received November 17, 2003; accepted January 5, 2004
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References |
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