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Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20
Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences a
b
Benjamin A. Tallman PhD , Jessica Lohnberg PhD , Torricia H. c
d
Yamada PhD , Thorvardur R. Halfdanarson MD & Elizabeth M. e
Altmaier PhD a
Department of Physical Medicine and Rehabilitation, St. Luke's Hospital, Cedar Rapids, IA, USA b
Psychology Service, Behavioral Medicine Program, VA Palo Alto Health Care System, Palo Alto, CA, USA c
Minneapolis VA Health Care System, Minneapolis, MN, USA
d
Department of Medicine, Mayo Clinic, Scottsdale, AZ, USA
e
Department of Psychological and Quantitative Foundations, University of Iowa, Iowa City, IA, USA Accepted author version posted online: 10 Mar 2014.Published online: 21 May 2014.
To cite this article: Benjamin A. Tallman PhD, Jessica Lohnberg PhD, Torricia H. Yamada PhD, Thorvardur R. Halfdanarson MD & Elizabeth M. Altmaier PhD (2014) Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences, Journal of Psychosocial Oncology, 32:3, 342-358, DOI: 10.1080/07347332.2014.897291 To link to this article: http://dx.doi.org/10.1080/07347332.2014.897291
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Journal of Psychosocial Oncology, 32:342–358, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2014.897291
Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences
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BENJAMIN A. TALLMAN, PhD Department of Physical Medicine and Rehabilitation, St. Luke’s Hospital, Cedar Rapids, IA, USA
JESSICA LOHNBERG, PhD Psychology Service, Behavioral Medicine Program, VA Palo Alto Health Care System, Palo Alto, CA, USA
TORRICIA H. YAMADA, PhD Minneapolis VA Health Care System, Minneapolis, MN, USA
THORVARDUR R. HALFDANARSON, MD Department of Medicine, Mayo Clinic, Scottsdale, AZ, USA
ELIZABETH M. ALTMAIER, PhD Department of Psychological and Quantitative Foundations, University of Iowa, Iowa City, IA, USA
Posttraumatic growth has been demonstrated to occur following the diagnosis and treatment of cancer. Still unknown is whether patients expect such growth, how growth is perceived at early points in time that follow the cancer experience, and whether patient reports of growth are corroborated by others. Participants were 87 patients and 55 collaterals who reported their anticipation of growth pretreatment and their perceived growth at a 9-month follow-up. Patients’ expectations for their own growth were significantly higher than collaterals’ expectations for theirs. When anticipated growth was compared to later reported growth, patients overanticipated growth across all domains and collaterals underanticipated growth. KEYWORDS collateral
posttraumatic growth, cancer, coping, oncology,
Address correspondence to Benjamin A. Tallman, PhD, Department of Physical Medicine and Rehabilitation, UnityPoint Health-St. Luke’s Hospital, 1026 A Avenue NE, Cedar Rapids, IA 52402. E-mail: [email protected] 342
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Patients’ posttreatment experience clearly affects families and close friends, and research documents that patients’ significant others experience hardship and distress during a loved one’s cancer experience (Hodges, Humphris, & Macfarlane, 2005). For example, Pitceathly and Maguire (2003) documented that 10% to 30% of family members met criteria for a variety of mental health disorders. Risk factors for significant distress include a history of psychiatric disorders, persons who take a negative view of the patient’s illness, and relationship difficulties. Zwahlen, Hagenbuch, Jenewein, Carley, and Buchi (2011) examined distress among a sample of patients with mixed cancers and their partners. Patients and partners showed similar levels of distress, with female partners experiencing the highest distress levels. Furthermore, in approximately 50% of the couples in the sample, one or both individuals reported having clinically high elevations in distress levels. This finding is important, because Kim et al. (2008) demonstrated that partner emotionality has a deleterious effect on a patient’s physical health. Posttraumatic growth (PTG; Tedeschi & Calhoun, 2004) has been defined as enduring positive personal growth following traumatic life events. This growth occurs in a variety of domains that range from improved interpersonal relationships to changes in spiritual and religious perspectives. Many studies have explored PTG in individuals who had been diagnosed with cancer (see Stanton, Bower, & Low, 2006, for a review). For example, it has been demonstrated that individuals who had been treated for cancer report having enhanced interpersonal relationships and an increased appreciation of life (Bellizzi, Miller, Arora, & Rowland, 2007; Tallman, Altmaier, & Garcia, 2007). Research also documents that reports of personal growth among survivors of trauma generally and patients with cancer specifically are corroborated by significant others. Park, Cohen, and Murch (1996) obtained views from informants (friends and family members) of college students’ reports of PTG. Informants corroborated students’ descriptions, more so if the relationship was described as extremely close. Parallel findings were noted by Shakespeare-Finch and Enders (2008) who studied undergraduate students who experienced trauma and reports by significant others (partners, close friends, family members). Weiss (2002) similarly reported that women after diagnosis of and treatment for breast cancer reported PTG; their husbands confirmed those reports. Park et al. (1996) noted that the two factors that influence agreement are the degree of closeness between survivor and corroborator and the degree to which the growth involved observable behaviors. Of note, corroboration studies have been cross-sectional in nature and thus limit the understanding of significant others’ perceptions of partner growth across time. Similar to the patients with cancer, the patients’ significant others have also reported experiencing personal growth in the aftermath of the diagnosis and treatment of the loved one. In a cross-sectional study of adolescent
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patients with cancer and their parents (Barakat, Alderfer, & Kazak, 2006), 90% of mothers and 80% of fathers reported significant personal growth and change—most notably in altered life perspectives. Kim, Schultz, and Carver (2007) studied benefit finding among family members of adult patients with cancer. Describing benefits in the areas of acceptance of life and increased empathy for others was related to reduced depression among family members. Whether individuals who are faced with cancer anticipate experiencing personal growth and how this anticipated growth is related to perceived growth has not been investigated to date. In a similar line of research (Winterling, Glimelius, & Nordin, 2008), a mixed cancer population reported recovery-related expectations before treatment; these expectations were correlated to patients’ later quality of life. In general, patients had high expectations regarding their later physical and psychological health. Two expectations were similar to the concept of PTG: that my “view of myself” would be better (45% agreed) and that “what is important in life” would be better (52% agreed). However, the categorical nature of the item responses (bettersame-worse) and the use of only two items make it difficult to conclude that this study supports the presence of anticipations that are related to positive personal change. This study examined whether persons about to undergo treatment and their collaterals anticipate personal growth from the cancer experience. Measuring anticipated growth provides a future-oriented perspective compared to retrospective accounts of growth, the primary methodology used in published research to date. More specifically, the study had the following aims: to determine the relationship of anticipated posttraumatic growth (APTG) to demographic, medical, and psychological well-being variables; to determine differences between APTG and PTG for patients and collaterals; as well as the accuracy with which study participants were able to anticipate PTG 9 months posttreatment; and to determine whether collaterals were able to predict accurately reports of growth for cancer patients at the follow-up.
METHOD Participants Patients were recruited as part of a longitudinal study of PTG among persons treated for cancer. Inclusion criteria were age between age 18 and 80 years; diagnosis of gastrointestinal (GI) cancer, acute myelogenous leukemia, or a condition that required an autologous or allogeneic bone marrow transplant (BMT; e.g., lymphoma, myeloma); and English speaking. Exclusion criteria were age younger than 18 years or older than 80 and life expectancy that had been determined by physicians to be fewer than 2 months. Baseline interviews were completed by 87 patients. At the 9-month follow-up, 49
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patients (56.3%) completed interviews. Study attrition was related to inability to contact patients (18.4%), death (12.6%), patients’ reporting that they were too ill to participate (6.9%), and patients’ refusing to participate (5.7%). Following enrollment, each patient identified a “collateral,” that is, an individual who knows the patient well and to whom the patient feels close; this individual could be a spouse, family member, friend, or other community member. Collaterals were required to be at least age 18 years. Of the 55 collaterals who completed baseline interviews, the majority was in the spouse or significant other category (67.3%); the rest were siblings or parents (23.6%) or friends (9.1%). At the 9-month follow-up, 31 collaterals (56.4%) completed interviews. Attrition was due to inability to contact participants (21.8%) and participation refusal (5.5%). Also, when patients were identified as too ill to participate (16.4%), collaterals were not contacted for follow-up interviews. The sample of patients and collaterals contained more females (58.5%) than males (41.5%). Mean age was 50.37 years old (SD = 13.66). For demographic data, see Table 1. The majority of patients were diagnosed with lymphoma, leukemia, multiple myeloma, or GI cancers (see Table 2). Because the cancer sample was heterogeneous, a universal disease status for stage variable was not appropriate. Therefore, disease status variables for patients with BMT and GI were calculated separately. For the patients with BMT, four disease status categories were calculated: chemosensitive disease under good control, chemosensitive but clinically persistent disease, persistent disease showing some chemoresistance, and sensitivity to chemotherapy cannot be determined. For GI cancers, groups based on intent to treat were created: adjuvant treatment group with possibility of cure and advanced cancer group with no cure (e.g., palliative care). To further differentiate the various stages, a second-stage variable for patients with GI was created: metastatic, locally advanced, or localized but not advanced.
Procedure Study participants were identified as potential candidates for enrollment by a research nurse coordinator or physician. Signed informed consent for enrollment in the study was obtained from eligible patients by research team members prior to treatment. Collaterals consented in person when they accompanied patients to the hospital; if not physically present, collaterals consented by telephone. Participants completed initial questionnaires either in person or by telephone. Measures to assess APTG/PTG, depression, and well-being were used. Approximately 9 months from the baseline interview, patients and collaterals were contacted to complete the follow-up interview.
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TABLE 1 Demographic Characteristics in Percent
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Characteristic Gender Female Male Ethnicity Caucasian Hispanic African American Marital status Married/cohabitating Single Separated/divorced/widowed Other Education High school Community college/some college College degree Graduate/professional degree Below high school Employment Part-time Retired Disabled/not employed Full time/self-employed Student Religious affiliation Protestant Catholic No affiliation Christian Other Spiritual
Patients (n = 87)
Collaterals (n = 55)
Total
42.5 57.5
83.6 16.4
58.5 41.5
96.6 2.3 1.1
96.4 1.8 1.8
96.5 2.1 1.4
72.4 14.9 10.3 2.3
81.8 5.5 10.9 1.87
76.1 11.3 10.6 2.1
32.2 28.7 28.7 8.0 2.3
32.7 32.7 21.8 10.9 1.8
32.4 30.3 26.1 9.2 2.1
37.9 24.1 24.1 13.8
65.5 12.7 5.5 12.7 1.8
48.6 19.7 16.9 13.4 0.7
39.1 24.1 17.2 10.3 5.7 3.4
43.6 20.0 18.2 5.5 5.5 5.5
40.8 22.5 17.6 8.5 5.6 4.2
Note. For employment and religious affiliation, one collateral did not respond. Mean age = 50.37, SD = 13.66.
Collaterals and patients completed a modified version of the Posttraumatic Growth Inventory (PTGI; Tedeschi & Calhoun, 1996) to assess APTG at baseline and then completed the PTGI at the 9-month follow-up. The PTGI was developed to assess positive outcomes among individuals who have experienced traumatic events. Growth is assessed on five scales (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life) with 21 items that refer to a variety of positive changes. For baseline interviews, modified directions for patients were “please indicate for each of the statements below the degree to which you believe this will happen to you as a result of your cancer experience.” Collaterals also completed a modified PTGI to reflect their perceptions of APTG for the patients: “Thinking ahead to [name’s] treatment for cancer, to what degree do you believe any of the following will happen to him/her as a result of his/her cancer experience.”
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TABLE 2 Disease/Medical Characteristics Variable
n
%
No previous diagnosis Diagnosis Lymphomia Leukemia Multiple myeloma Gastrointestinal cancera Other Primary treatmentb Bone marrow transplantation Autologous Allogeneic Chemotherapy Radiation Surgery Status Bone marrow transplantation Chemosensitive under good control Chemosensitive but clinically persistent Persistent with some chemoresistance Sensitivity to chemotherapy cannot be determined Gastrointestinal Adjuvant/definitive therapy Metastatic/incurable Metastatic Locally advanced Localized but not advanced
61
70.1
28 25 17 15 2
32.2 28.7 19.5 17.2 2.3
36 21 21 7 2
41.4 24.1 24.1 8.0 2.3
26 25 7 1
29.9 28.7 8.0 1.1
14
16.1
8 8 6
9.2 9.2 6.9
Note: Time since diagnoses was 325 days (SD = 564 days). a. Includes gallbladder, rectal, pancreas, liver, prostate, and colon cancer. b. For those participants who received multiple treatments, primary treatment is listed.
The standard version of the PTGI was given at 9 months for patients and for collaterals. Reliability and validity evidence have been demonstrated for the PTGI (Tedeschi & Calhoun, 1996). In this study, internal consistency reliabilities (e.g., Cronbach’s alpha) for the APTG/PTGI scales ranged from .73 to .97. Depression was measured using the Center for Epidemiologic Studies–Depression scale (CES-D; Radloff, 1977). The CES-D consists of 20 self-report items; for example, “I had crying spells.” Respondents indicate how often during the past week that they experienced each item on a scale that ranges from 1 (less than one day) to 4 (five to seven days). Higher scores on the scale indicate higher levels of depression. Research has supported the utility of the CES-D in cancer populations (Beeber, Shea, & McCorkle, 1998). Cronbach’s alpha in this study was .88. Depression was measured at baseline and at the 9-month follow-up. Patient well-being was assessed using the Functional Assessment of Cancer Therapies—General (FACT-G; Cella, 1997). The FACT-G is a
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28-item questionnaire with physical, social/family, emotional, and functional well-being subscales. Each subscale has five to seven items and consists of questions such as “I have a lack of energy” and “I am enjoying the things I usually do for fun.” Participants are asked to consider only the past 7 days and to respond to each item on a scale from 0 (not at all) to 4 (very much); higher scores denote better well-being. Widely used in cancer studies that examine quality of life, the FACT-G has an internal consistency of .89 (Cella, 1997). For this study, the FACT-G total score was used as a measure of overall well-being, and demonstrated good internal consistency (Cronbach’s alpha = .89). Well-being was measured at baseline and the 9-month follow-up.
RESULTS All data were analyzed using SPSS version 19. Box plots, scatter plots, and frequency distributions were used to examine normality assumptions and outliers for primary study variables. When bivariate scatter plots were reviewed, variables appeared to be linearly related. Outlier cases were identified and retained, because they appeared to be from the same population. Skewness and kurtosis ratios revealed that some variables exceeded the ± 2 (z-score) cut-point. The fact that Kolmogorov-Smirnov tests for APTG scales were significant (all ps < 0.001) suggests the presence of non-normal distributions. For APTG variables, negative skew was present. Because of non-normal distributions, some variables were transformed by Winsorizing. Winsorizing is an approach that is used to transform the extreme scores from the tails of the distribution: A score is recoded to a less extreme score (Staudte & Sheather, 1990; Wilcox & Keselman, 2003). Because differences in statistical results between Winsorized and nontransformed data were minimal, only nontransformed data are presented.
Demographic Variables The effect of patient demographic variables on APTG and PTG was examined by t tests and ANOVA. A significant effect emerged for patient religious affiliation on APTG spiritual change at baseline, F(5, 81) = 6.56, p < 0.001. Tukey’s post-hoc test revealed that participants with no spiritual affiliation had lower levels of expected spiritual change compared to participants who were Protestant, Catholic, or Christian. Age was not related to APTG or PTG variables. There was also no effect of marital status, educational level, or employment status on patient APTG or PTG variables. For collaterals, there was a significant effect for education on anticipated new possibilities, F(3, 50) = 3.28, p < 0.05, and personal strength, F(3, 50) = 3.05, p < 0.05. Collaterals with high school or some college had higher scores
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(i.e., expected more growth) than did collaterals with college or graduate degrees, although post-hoc tests were nonsignificant (ps > 0.05). There was also an effect for education on collateral PTG total, F(3, 27) = 3.56, p < 0.05, and for PTG relationship with others, F(3, 17) = 4.68, p < 0.01. Post-hoc tests showed higher levels of growth for participants with high school than for participants with a graduate/professional degree or some college (ps < 0.05). Collaterals who were spouses/significant others reported higher levels of expected growth in relationships than collaterals who were friends/family members, t(53) = 2.07, p < 0.05. For collaterals, there was no effect of age, gender, marital status, employment status (employed versus not employed), or religious affiliation on study variables.
Medical/Disease Variables, Depression, and Well-Being The effect of medical/disease variables on study variables was examined by t tests and ANOVAs. A significant effect of GI group status was present for APTG spiritual change, t(20) =−2.94, p < 0.01, with the adjuvant treatment/curable group reporting lower levels of expected spiritual change than the metastatic/incurable group did. There was no effect for diagnoses and type of treatment on study variables (all ps > 0.05). Previous diagnosis of cancer was examined by independent samples t tests. There was a significant mean difference for collateral APTG total for patient’s, t(53) = 2.62, p < 0.01, with collaterals reporting higher levels of APTG for patients with no previous diagnosis of cancer compared to collaterals of patients with a previous diagnosis. There was no effect of previous diagnosis of cancer for participant and collateral APTG and PTG for themselves (all ps > 0.05).There was also no effect for BMT disease status or GI disease stage on study variables and no mean differences for patients who received or did not receive a BMT (all ps > 0.05). Pearson product–moment correlations were used to examine the relationship between APTG, depression, and well-being across time. The APTG scale of new possibilities was related to depression (r = .25, p < 0.05) and total well-being (r = −.22, p < 0.05) that were measured at baseline. Anticipated PTG scales were not related to well-being or depression at nine months (all ps > 0.05).
Analysis of Mean Differences Between Patients and Collaterals Mean differences between study variables were examined by paired-sample t tests and effect sizes were calculated to examine the magnitude of the differences. Additionally, relationships between APTG and PTG scales were examined by Pearson product–moment correlations. There were higher
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TABLE 3 Means, Standard Deviation, and Correlations: Baseline Anticipated Posttraumatic Growth (APTG) and Nine-Month Posttraumatic Growth (PTG) for Patients and Collaterals APTG
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APTG Patients Total scale New possibilities Relationships Personal strength Appreciation of life Spiritual change Collaterals Total scale New possibilities Relationships Personal strength Appreciation of life Spiritual change
PTG
M
SD
M
SD
R
d
74.42 16.10 26.06 13.93 11.59 6.75
22.05 5.68 7.77 4.44 3.57 3.04
63.88 11.29 24.02 12.76 10.49 5.33
21.67 5.37 8.00 4.63 3.72 3.22
.41∗∗ .55∗∗∗ .29∗ .33∗ .48∗∗∗ .42∗∗
.36∗ .68∗∗∗ .21 .16 .21 .32∗
64.67 13.50 22.67 12.23 10.49 5.77
23.84 5.47 8.85 5.00 3.61 3.00
67.38 11.29 24.68 13.73 11.45 6.23
18.42 5.25 6.41 4.48 3.15 3.26
.69∗∗∗ .60∗∗∗ .66∗∗∗ .49∗∗ .38∗ .73∗∗∗
.10 .46∗∗ .22 .33 .28 .08
Note: For patients, n = 87 at baseline (APTG) and n = 49 at nine months (PTG); for collaterals, n = 55 at baseline and n = 31 at 9 months. Mean differences were examined by paired-samples t test. ∗ p < 0.05, ∗∗ p < 0.01, ∗∗∗ p < 0.001.
levels of expected growth for patients than for collaterals on several scales: total score, t (54) = 3.06, p = .003, d = .53; new possibilities, t(54) = 2.79, p = .007, d = .47; relationships with others, t(54) = 3.18, p = .002, d = .55; personal strength, t(54) = 2.60, p = .012, d = .41; and appreciation of life, t(54) = 2.67, p = .01, d = .44. Collateral APTG personal strength was related to patient APTG personal strength (r = .33, p < 0.05). Anticipated versus reported growth. Two criteria were used to determine patient and collateral “accuracy” in anticipating later growth. First, accuracy would be demonstrated if mean differences were nonsignificant between APTG and PTG scores, thus yielding small effect sizes. Additionally, accuracy could further be demonstrated by examining the amount of shared variance between APTG and PTG scores (see Table 3). Results suggest that patients overanticipated in all areas of growth. Results of paired-sample t tests for patients revealed that levels of anticipated growth—compared to reported growth—were significantly higher for total scale, new possibilities, and spiritual change. All anticipated growth scales were significantly correlated with their respective PTG scale at nine months: Shared variance between study variables ranged from .08 to .30. Except for the growth scale of new possibilities, collaterals underanticipated the level of growth that they believed that they would experience. Results for paired-sample t tests for collaterals revealed higher levels for APTG new possibilities compared to PTG new possibilities. All anticipated growth scales were significantly correlated with their respected PTG scale at 9 months with variance between variables that ranged from .14 to .53: total,
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TABLE 4 Means, Standard Deviations, and Correlations: Collateral Anticipated Posttraumatic Growth (APTG) and Patient Posttraumatic Growth (PTG) Collateral APTG Patient APTG
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Total scale New possibilities Relationships Personal strength Appreciation of life Spiritual change
Patient PTG
M
SD
M
SD
r
d
63.84 13.11 22.39 12.64 10.35 5.33
20.42 5.36 7.11 4.31 3.35 3.00
63.87 11.29 24.02 12.76 10.49 5.33
21.67 5.37 8.00 4.63 3.72 3.22
.26 .29 .17 .38∗ .03 .49∗∗
.07 .42∗ .13 .11 .02 .07
Note: For collaterals, n = 55 at baseline (APTG); for patients, n = 49 at 9 months (PTG). Mean differences were examined by paired-samples t-test. ∗ p < 0.05, ∗∗ p < 0.01.
new possibilities, relationships with others, personal strength, appreciation of life, and spiritual change. Corroboration of growth. With the exception of new possibilities, collaterals accurately predicted the level of PTG that patients would report. Paired-sample t tests revealed that APTG new possibilities was higher than Patient PTG new possibilities. All other mean differences were nonsignificant (p > 0.05) with effect sizes ranging from .02 to .11. Collaterals were most accurate in their predictions of patient PTG in the areas of personal strength and spiritual change, with shared variance being .14 and .24, respectively (see Table 4).
DISCUSSION This study addressed several questions concerning positive growth from the experience of diagnosis and treatment for cancer among patients and collaterals. The first question examined the relationships between demographic variables, medical variables, psychological well-being, and anticipated growth. There were few differences in anticipated growth due to these variables. Those differences that were there (more anticipated spiritual growth for patients with a curable disease and for patients with no previous diagnosis) might suggest that the first experience of cancer diagnosis and treatment poses the greatest shock to perceived well-being, and may promote higher expectations of growth. However, the longitudinal data revealed that anticipated growth at baseline was unrelated to well-being at nine months posttreatment. There may well be other influences that were not explored in this study between anticipation of growth and its experience. The second aim of the study was to consider differences between anticipation of personal growth and perceived growth by patients and their close family members or friends. Expectations of growth were similar to
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or higher than perceived growth that is typically reported following cancer treatments. Patients’ level of anticipated growth was higher than growth that was reported by several samples, including mixed cancer patients receiving hematopoietic stem cell transplantation (HSCT) and BMT treatments (Andrykowski et al., 2005; Widows, Jacobsen, Booth-Jones, & Fields, 2005) and patients with prostate cancer (Thornton & Perez, 2006). Similarly, collaterals also anticipated high levels of growth compared to reports of perceived growth by husbands of patients with breast cancer (Weiss, 2004), caregivers of children who are chronically ill (Moskowitz & Epel, 2006), and caregivers of patients with HIV/AIDS (Cadell, 2003). Results of this study were compared to studies which examined PTG from patient and partner perspectives (Manne et al., 2004; Moore et al., 2011; Thornton & Perez, 2006; Weiss, 2002). These studies have similar conclusions: When compared to partners, patients with cancer experience either more or similar levels of growth. In studies of patients with breast cancer and their partners (Manne et al., 2004; Weiss, 2002), patients with breast cancer reported higher levels of growth than partners. For example, Manne et al. (2004) examined PTG among patients with breast cancer and their partners at three different points in time: baseline (postsurgery), 9 months, and 18 months. When partner reports of patients were compared to patient selfreports, patients experienced higher levels of growth. A finding that is more consistent with that obtained in this study was derived from a sample of patients with prostate cancer and their partners. Survivors of prostate cancer and their partners reported similar levels of growth, and reports of growth were modestly related (Thornton, & Perez, 2006). The perceived threat of the event may assist in understanding anticipated growth for patients. Posttraumatic growth theory suggests that for growth to occur an event must be “seismic” to shatter one’s assumptions about life (Janoff-Bulman, 1992; Tedeschi & Calhoun, 1996, 2004). Event severity—or the perceived threat of the event—has been linked to increased levels of PTG among cancer populations (Stanton et al., 2006). Much research has documented negative sequelae that are associated with the cancer experience, for example, the negative impact on quality of life (Andrykowski et al., 2005). Patients were directly threatened by the cancer experience, whereas collaterals might have anticipated growth to a lesser degree due to their indirect experience. A family systems perspective can provide a theoretical framework for understanding collateral anticipated growth. Berger and Weiss (2009) identified a number of PTG components generalizable to a family system, including stressor event characteristics, challenges, and family rumination. The cancer experience affects the family system by disrupting the family, which may subsequently impact the manner in which family members interact, perform tasks, make decisions, and engage in problem solving. Traumatic events also impose a diverse set of challenges on the family and the family’s way of life
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may substantially shift from previous levels of functioning. These challenges can affect family roles/beliefs/traditions, family narrative/story, and communication between family members. Last, families may engage in rumination or cognitive processing, thought to be a key component in how growth develops (Tedeschi & Calhoun, 2004). For this study, anticipating expectations for the future can be viewed as a type of ruination that may have led to later growth. Another set of findings in this study was that collaterals were more accurate than patients had been in anticipating growth for themselves. Effect sizes for APTG and PTG scales were larger for patient differences compared to collateral differences, indicating a larger discrepancy between growth anticipated and growth perceived. The relationship between APTG and PTG scales was also stronger for collaterals: percent variance for collateral growth ranged from 14% to 53% whereas patient growth ranged from 8% to 30%. Why were patients less accurate—essentially overanticipating the growth that they would experience? As we have noted elsewhere (Tallman, 2013), PTG might well be an illusory rather than an actual phenomenon (Sumalla, Ochoa, & Blanco, 2009; Tennen & Affleck, 2009). A series of papers (Miller, Sherman, & Christensen, 2010) has critically considered analyses of PTG among medical patients that focus on measurement issues in assessment of growth and lack of behavioral corroboration of growth. Posttraumatic growth can be a biased means of self-preservation: Patients may perceive PTG as a mechanism of coping with the negative sequelae that are associated with trauma. Thus patients tend to overestimate the impact that a future event will have on their quality of life. This phenomenon has been referred to as “impact bias” (Gilbert, Pinel, Wilson, Blumberg, & Wheatley, 1998). Why were collaterals better able to anticipate growth for themselves and growth for patients? One possibility may be that collaterals’ mortality was called into question to a lesser degree than patients. Collaterals were likely affected by the cancer experience (Pitceathly & Maguire, 2003), but they may not have had to worry about immediate survival. The threat of cancer was greater for patients than for collaterals: Perceived threat of traumatic events has been linked to increased levels of PTG (Stanton et al., 2006). Collaterals might have been more accurate than patients in their anticipation of PTG, because cancer had not directly affected collaterals from a medical or health standpoint (e.g., diagnosis and treatment). Another possible explanation for collaterals’ having more accurate expectations for themselves stems from research on discounting theory. According to Cheng, Fung, & Chan, 2009, “discounting” is the process by which individuals manage the threat of future stressors by engaging in anticipated goal disengagement; that is, it may not be advantageous for older adults to hold unrealistic positive expectations of the future as opposed to holding a
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“not-so-bright” view of the future (Cheng, Fung, & Chan, 2009, p. 630). In a sample of 200 adults who were age 60 years or older, participants who had a more negative expectation of the future had higher levels of well-being than those who held an overly positive view of the future. The authors point to the fact that with more realistic or negative views of the future, older adults were better able to manage the normative losses and declines that took place. Collaterals in this study may have engaged in a similar discounting process, by taking into account the positive and negative impact the cancer experience would have on them and patients. Although this study did not assess participants’ anticipation of negative outcomes (e.g., losses or declines), results suggest greater accuracy for collaterals to anticipate future growth for themselves. The final aim of the study addressed the corroboration of growth. Results of this study can be compared to previous research which used similar methodologies to corroborate reports of growth (Moore et al., 2011; Park et al., 1996; Shakespeare-Finch & Enders, 2008; Weiss, 2002). Several differences and similarities were present between the current findings and findings of previous corroboration research. First, the degree to which growth variables were related to one another for significant others/caregivers and patient growth were higher for other studies compared to this study. This suggests a larger degree of corroboration in cross-sectional research. Collaterals in this study were anticipating future growth. Also, the extent of relationship closeness was not examined in this study. Previous research suggests a higher degree of corroboration for collaterals that are partners. For example, Moore et al. (2011) noted that the large degree of correlations between caregiver and patient PTG in their study may be related to relationship intimacy: most relationships were more than 30 years, and caregivers were intimately invested in patient care. Less intimate relationships between patients and collaterals may have decreased the accuracy of collateral reports of growth for patient, resulting in a lower degree of corroboration. Collaterals were most accurate in anticipating patients’ growth in the area of spiritual change. Changes in spirituality and religiosity are common among individuals who experience traumatic events (O’Rourke, Tallman, & Altmaier, 2008). Further, religious or spiritual coping has been linked to increased levels of PTG (Pargament, Koenig, & Perez, 2000). It may have been easier for collaterals to anticipate levels of spiritual growth because, compared to some of the other areas of growth (e.g., new possibilities), collaterals may have had a better understanding of patients’ baseline spiritual/religious levels. The accuracy in collaterals’ predictions of patient growth for spiritual changes may be attributed to the possible observable nature of spiritual and religious practices in the face of adversity. Reading religious materials and attending religious services are observable behaviors, thus, possibly providing collaterals with additional information to make future predictions.
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The results of this study should be interpreted in light of the limitations. This sample was predominately White, well educated, and from the Midwest. Participant attrition would affect outcomes, because patients with the poorest cancer outcomes likely did not participate at 9 months. Assessment of APTG was achieved with a modified version of the PTGI (Tedeschi & Calhoun, 1996), and small changes in scales could have affected validity. As was reported by Tallman, Shaw, Schultz, and Altmaier (2010) in a study of longterm survivors of HSCT, growth that had been assessed by the PTGI differed from growth that had been reported with open-ended assessments. Also, some participants may have already experienced PTG (e.g., ceiling effect). An important future consideration will be to examine growth from a family-systems perspective and to continue to address PTG from a cultural standpoint. The most commonly used PTG instrument—PTGI (Tedeschi & Calhoun, 1996)—assesses growth from an individualistic perspective. Future research should target specific aspects of family growth to include areas such as family identity/legacy, intimate interpersonal relationships, family priorities, and changes in family values/belief systems (Berger & Weiss, 2009). Also, additional research examining cultural considerations related to PTG is needed. Specifically, an examination of differences of family members/partners from Western and non-Western countries will help flesh out PTG as a cross-cultural construct (Splevins, Cohen, Bowley, & Joseph, 2010).
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Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20
Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences a
b
Benjamin A. Tallman PhD , Jessica Lohnberg PhD , Torricia H. c
d
Yamada PhD , Thorvardur R. Halfdanarson MD & Elizabeth M. e
Altmaier PhD a
Department of Physical Medicine and Rehabilitation, St. Luke's Hospital, Cedar Rapids, IA, USA b
Psychology Service, Behavioral Medicine Program, VA Palo Alto Health Care System, Palo Alto, CA, USA c
Minneapolis VA Health Care System, Minneapolis, MN, USA
d
Department of Medicine, Mayo Clinic, Scottsdale, AZ, USA
e
Department of Psychological and Quantitative Foundations, University of Iowa, Iowa City, IA, USA Accepted author version posted online: 10 Mar 2014.Published online: 21 May 2014.
To cite this article: Benjamin A. Tallman PhD, Jessica Lohnberg PhD, Torricia H. Yamada PhD, Thorvardur R. Halfdanarson MD & Elizabeth M. Altmaier PhD (2014) Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences, Journal of Psychosocial Oncology, 32:3, 342-358, DOI: 10.1080/07347332.2014.897291 To link to this article: http://dx.doi.org/10.1080/07347332.2014.897291
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Journal of Psychosocial Oncology, 32:342–358, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2014.897291
Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences
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BENJAMIN A. TALLMAN, PhD Department of Physical Medicine and Rehabilitation, St. Luke’s Hospital, Cedar Rapids, IA, USA
JESSICA LOHNBERG, PhD Psychology Service, Behavioral Medicine Program, VA Palo Alto Health Care System, Palo Alto, CA, USA
TORRICIA H. YAMADA, PhD Minneapolis VA Health Care System, Minneapolis, MN, USA
THORVARDUR R. HALFDANARSON, MD Department of Medicine, Mayo Clinic, Scottsdale, AZ, USA
ELIZABETH M. ALTMAIER, PhD Department of Psychological and Quantitative Foundations, University of Iowa, Iowa City, IA, USA
Posttraumatic growth has been demonstrated to occur following the diagnosis and treatment of cancer. Still unknown is whether patients expect such growth, how growth is perceived at early points in time that follow the cancer experience, and whether patient reports of growth are corroborated by others. Participants were 87 patients and 55 collaterals who reported their anticipation of growth pretreatment and their perceived growth at a 9-month follow-up. Patients’ expectations for their own growth were significantly higher than collaterals’ expectations for theirs. When anticipated growth was compared to later reported growth, patients overanticipated growth across all domains and collaterals underanticipated growth. KEYWORDS collateral
posttraumatic growth, cancer, coping, oncology,
Address correspondence to Benjamin A. Tallman, PhD, Department of Physical Medicine and Rehabilitation, UnityPoint Health-St. Luke’s Hospital, 1026 A Avenue NE, Cedar Rapids, IA 52402. E-mail: [email protected] 342
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Patients’ posttreatment experience clearly affects families and close friends, and research documents that patients’ significant others experience hardship and distress during a loved one’s cancer experience (Hodges, Humphris, & Macfarlane, 2005). For example, Pitceathly and Maguire (2003) documented that 10% to 30% of family members met criteria for a variety of mental health disorders. Risk factors for significant distress include a history of psychiatric disorders, persons who take a negative view of the patient’s illness, and relationship difficulties. Zwahlen, Hagenbuch, Jenewein, Carley, and Buchi (2011) examined distress among a sample of patients with mixed cancers and their partners. Patients and partners showed similar levels of distress, with female partners experiencing the highest distress levels. Furthermore, in approximately 50% of the couples in the sample, one or both individuals reported having clinically high elevations in distress levels. This finding is important, because Kim et al. (2008) demonstrated that partner emotionality has a deleterious effect on a patient’s physical health. Posttraumatic growth (PTG; Tedeschi & Calhoun, 2004) has been defined as enduring positive personal growth following traumatic life events. This growth occurs in a variety of domains that range from improved interpersonal relationships to changes in spiritual and religious perspectives. Many studies have explored PTG in individuals who had been diagnosed with cancer (see Stanton, Bower, & Low, 2006, for a review). For example, it has been demonstrated that individuals who had been treated for cancer report having enhanced interpersonal relationships and an increased appreciation of life (Bellizzi, Miller, Arora, & Rowland, 2007; Tallman, Altmaier, & Garcia, 2007). Research also documents that reports of personal growth among survivors of trauma generally and patients with cancer specifically are corroborated by significant others. Park, Cohen, and Murch (1996) obtained views from informants (friends and family members) of college students’ reports of PTG. Informants corroborated students’ descriptions, more so if the relationship was described as extremely close. Parallel findings were noted by Shakespeare-Finch and Enders (2008) who studied undergraduate students who experienced trauma and reports by significant others (partners, close friends, family members). Weiss (2002) similarly reported that women after diagnosis of and treatment for breast cancer reported PTG; their husbands confirmed those reports. Park et al. (1996) noted that the two factors that influence agreement are the degree of closeness between survivor and corroborator and the degree to which the growth involved observable behaviors. Of note, corroboration studies have been cross-sectional in nature and thus limit the understanding of significant others’ perceptions of partner growth across time. Similar to the patients with cancer, the patients’ significant others have also reported experiencing personal growth in the aftermath of the diagnosis and treatment of the loved one. In a cross-sectional study of adolescent
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patients with cancer and their parents (Barakat, Alderfer, & Kazak, 2006), 90% of mothers and 80% of fathers reported significant personal growth and change—most notably in altered life perspectives. Kim, Schultz, and Carver (2007) studied benefit finding among family members of adult patients with cancer. Describing benefits in the areas of acceptance of life and increased empathy for others was related to reduced depression among family members. Whether individuals who are faced with cancer anticipate experiencing personal growth and how this anticipated growth is related to perceived growth has not been investigated to date. In a similar line of research (Winterling, Glimelius, & Nordin, 2008), a mixed cancer population reported recovery-related expectations before treatment; these expectations were correlated to patients’ later quality of life. In general, patients had high expectations regarding their later physical and psychological health. Two expectations were similar to the concept of PTG: that my “view of myself” would be better (45% agreed) and that “what is important in life” would be better (52% agreed). However, the categorical nature of the item responses (bettersame-worse) and the use of only two items make it difficult to conclude that this study supports the presence of anticipations that are related to positive personal change. This study examined whether persons about to undergo treatment and their collaterals anticipate personal growth from the cancer experience. Measuring anticipated growth provides a future-oriented perspective compared to retrospective accounts of growth, the primary methodology used in published research to date. More specifically, the study had the following aims: to determine the relationship of anticipated posttraumatic growth (APTG) to demographic, medical, and psychological well-being variables; to determine differences between APTG and PTG for patients and collaterals; as well as the accuracy with which study participants were able to anticipate PTG 9 months posttreatment; and to determine whether collaterals were able to predict accurately reports of growth for cancer patients at the follow-up.
METHOD Participants Patients were recruited as part of a longitudinal study of PTG among persons treated for cancer. Inclusion criteria were age between age 18 and 80 years; diagnosis of gastrointestinal (GI) cancer, acute myelogenous leukemia, or a condition that required an autologous or allogeneic bone marrow transplant (BMT; e.g., lymphoma, myeloma); and English speaking. Exclusion criteria were age younger than 18 years or older than 80 and life expectancy that had been determined by physicians to be fewer than 2 months. Baseline interviews were completed by 87 patients. At the 9-month follow-up, 49
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patients (56.3%) completed interviews. Study attrition was related to inability to contact patients (18.4%), death (12.6%), patients’ reporting that they were too ill to participate (6.9%), and patients’ refusing to participate (5.7%). Following enrollment, each patient identified a “collateral,” that is, an individual who knows the patient well and to whom the patient feels close; this individual could be a spouse, family member, friend, or other community member. Collaterals were required to be at least age 18 years. Of the 55 collaterals who completed baseline interviews, the majority was in the spouse or significant other category (67.3%); the rest were siblings or parents (23.6%) or friends (9.1%). At the 9-month follow-up, 31 collaterals (56.4%) completed interviews. Attrition was due to inability to contact participants (21.8%) and participation refusal (5.5%). Also, when patients were identified as too ill to participate (16.4%), collaterals were not contacted for follow-up interviews. The sample of patients and collaterals contained more females (58.5%) than males (41.5%). Mean age was 50.37 years old (SD = 13.66). For demographic data, see Table 1. The majority of patients were diagnosed with lymphoma, leukemia, multiple myeloma, or GI cancers (see Table 2). Because the cancer sample was heterogeneous, a universal disease status for stage variable was not appropriate. Therefore, disease status variables for patients with BMT and GI were calculated separately. For the patients with BMT, four disease status categories were calculated: chemosensitive disease under good control, chemosensitive but clinically persistent disease, persistent disease showing some chemoresistance, and sensitivity to chemotherapy cannot be determined. For GI cancers, groups based on intent to treat were created: adjuvant treatment group with possibility of cure and advanced cancer group with no cure (e.g., palliative care). To further differentiate the various stages, a second-stage variable for patients with GI was created: metastatic, locally advanced, or localized but not advanced.
Procedure Study participants were identified as potential candidates for enrollment by a research nurse coordinator or physician. Signed informed consent for enrollment in the study was obtained from eligible patients by research team members prior to treatment. Collaterals consented in person when they accompanied patients to the hospital; if not physically present, collaterals consented by telephone. Participants completed initial questionnaires either in person or by telephone. Measures to assess APTG/PTG, depression, and well-being were used. Approximately 9 months from the baseline interview, patients and collaterals were contacted to complete the follow-up interview.
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TABLE 1 Demographic Characteristics in Percent
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Characteristic Gender Female Male Ethnicity Caucasian Hispanic African American Marital status Married/cohabitating Single Separated/divorced/widowed Other Education High school Community college/some college College degree Graduate/professional degree Below high school Employment Part-time Retired Disabled/not employed Full time/self-employed Student Religious affiliation Protestant Catholic No affiliation Christian Other Spiritual
Patients (n = 87)
Collaterals (n = 55)
Total
42.5 57.5
83.6 16.4
58.5 41.5
96.6 2.3 1.1
96.4 1.8 1.8
96.5 2.1 1.4
72.4 14.9 10.3 2.3
81.8 5.5 10.9 1.87
76.1 11.3 10.6 2.1
32.2 28.7 28.7 8.0 2.3
32.7 32.7 21.8 10.9 1.8
32.4 30.3 26.1 9.2 2.1
37.9 24.1 24.1 13.8
65.5 12.7 5.5 12.7 1.8
48.6 19.7 16.9 13.4 0.7
39.1 24.1 17.2 10.3 5.7 3.4
43.6 20.0 18.2 5.5 5.5 5.5
40.8 22.5 17.6 8.5 5.6 4.2
Note. For employment and religious affiliation, one collateral did not respond. Mean age = 50.37, SD = 13.66.
Collaterals and patients completed a modified version of the Posttraumatic Growth Inventory (PTGI; Tedeschi & Calhoun, 1996) to assess APTG at baseline and then completed the PTGI at the 9-month follow-up. The PTGI was developed to assess positive outcomes among individuals who have experienced traumatic events. Growth is assessed on five scales (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life) with 21 items that refer to a variety of positive changes. For baseline interviews, modified directions for patients were “please indicate for each of the statements below the degree to which you believe this will happen to you as a result of your cancer experience.” Collaterals also completed a modified PTGI to reflect their perceptions of APTG for the patients: “Thinking ahead to [name’s] treatment for cancer, to what degree do you believe any of the following will happen to him/her as a result of his/her cancer experience.”
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TABLE 2 Disease/Medical Characteristics Variable
n
%
No previous diagnosis Diagnosis Lymphomia Leukemia Multiple myeloma Gastrointestinal cancera Other Primary treatmentb Bone marrow transplantation Autologous Allogeneic Chemotherapy Radiation Surgery Status Bone marrow transplantation Chemosensitive under good control Chemosensitive but clinically persistent Persistent with some chemoresistance Sensitivity to chemotherapy cannot be determined Gastrointestinal Adjuvant/definitive therapy Metastatic/incurable Metastatic Locally advanced Localized but not advanced
61
70.1
28 25 17 15 2
32.2 28.7 19.5 17.2 2.3
36 21 21 7 2
41.4 24.1 24.1 8.0 2.3
26 25 7 1
29.9 28.7 8.0 1.1
14
16.1
8 8 6
9.2 9.2 6.9
Note: Time since diagnoses was 325 days (SD = 564 days). a. Includes gallbladder, rectal, pancreas, liver, prostate, and colon cancer. b. For those participants who received multiple treatments, primary treatment is listed.
The standard version of the PTGI was given at 9 months for patients and for collaterals. Reliability and validity evidence have been demonstrated for the PTGI (Tedeschi & Calhoun, 1996). In this study, internal consistency reliabilities (e.g., Cronbach’s alpha) for the APTG/PTGI scales ranged from .73 to .97. Depression was measured using the Center for Epidemiologic Studies–Depression scale (CES-D; Radloff, 1977). The CES-D consists of 20 self-report items; for example, “I had crying spells.” Respondents indicate how often during the past week that they experienced each item on a scale that ranges from 1 (less than one day) to 4 (five to seven days). Higher scores on the scale indicate higher levels of depression. Research has supported the utility of the CES-D in cancer populations (Beeber, Shea, & McCorkle, 1998). Cronbach’s alpha in this study was .88. Depression was measured at baseline and at the 9-month follow-up. Patient well-being was assessed using the Functional Assessment of Cancer Therapies—General (FACT-G; Cella, 1997). The FACT-G is a
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28-item questionnaire with physical, social/family, emotional, and functional well-being subscales. Each subscale has five to seven items and consists of questions such as “I have a lack of energy” and “I am enjoying the things I usually do for fun.” Participants are asked to consider only the past 7 days and to respond to each item on a scale from 0 (not at all) to 4 (very much); higher scores denote better well-being. Widely used in cancer studies that examine quality of life, the FACT-G has an internal consistency of .89 (Cella, 1997). For this study, the FACT-G total score was used as a measure of overall well-being, and demonstrated good internal consistency (Cronbach’s alpha = .89). Well-being was measured at baseline and the 9-month follow-up.
RESULTS All data were analyzed using SPSS version 19. Box plots, scatter plots, and frequency distributions were used to examine normality assumptions and outliers for primary study variables. When bivariate scatter plots were reviewed, variables appeared to be linearly related. Outlier cases were identified and retained, because they appeared to be from the same population. Skewness and kurtosis ratios revealed that some variables exceeded the ± 2 (z-score) cut-point. The fact that Kolmogorov-Smirnov tests for APTG scales were significant (all ps < 0.001) suggests the presence of non-normal distributions. For APTG variables, negative skew was present. Because of non-normal distributions, some variables were transformed by Winsorizing. Winsorizing is an approach that is used to transform the extreme scores from the tails of the distribution: A score is recoded to a less extreme score (Staudte & Sheather, 1990; Wilcox & Keselman, 2003). Because differences in statistical results between Winsorized and nontransformed data were minimal, only nontransformed data are presented.
Demographic Variables The effect of patient demographic variables on APTG and PTG was examined by t tests and ANOVA. A significant effect emerged for patient religious affiliation on APTG spiritual change at baseline, F(5, 81) = 6.56, p < 0.001. Tukey’s post-hoc test revealed that participants with no spiritual affiliation had lower levels of expected spiritual change compared to participants who were Protestant, Catholic, or Christian. Age was not related to APTG or PTG variables. There was also no effect of marital status, educational level, or employment status on patient APTG or PTG variables. For collaterals, there was a significant effect for education on anticipated new possibilities, F(3, 50) = 3.28, p < 0.05, and personal strength, F(3, 50) = 3.05, p < 0.05. Collaterals with high school or some college had higher scores
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(i.e., expected more growth) than did collaterals with college or graduate degrees, although post-hoc tests were nonsignificant (ps > 0.05). There was also an effect for education on collateral PTG total, F(3, 27) = 3.56, p < 0.05, and for PTG relationship with others, F(3, 17) = 4.68, p < 0.01. Post-hoc tests showed higher levels of growth for participants with high school than for participants with a graduate/professional degree or some college (ps < 0.05). Collaterals who were spouses/significant others reported higher levels of expected growth in relationships than collaterals who were friends/family members, t(53) = 2.07, p < 0.05. For collaterals, there was no effect of age, gender, marital status, employment status (employed versus not employed), or religious affiliation on study variables.
Medical/Disease Variables, Depression, and Well-Being The effect of medical/disease variables on study variables was examined by t tests and ANOVAs. A significant effect of GI group status was present for APTG spiritual change, t(20) =−2.94, p < 0.01, with the adjuvant treatment/curable group reporting lower levels of expected spiritual change than the metastatic/incurable group did. There was no effect for diagnoses and type of treatment on study variables (all ps > 0.05). Previous diagnosis of cancer was examined by independent samples t tests. There was a significant mean difference for collateral APTG total for patient’s, t(53) = 2.62, p < 0.01, with collaterals reporting higher levels of APTG for patients with no previous diagnosis of cancer compared to collaterals of patients with a previous diagnosis. There was no effect of previous diagnosis of cancer for participant and collateral APTG and PTG for themselves (all ps > 0.05).There was also no effect for BMT disease status or GI disease stage on study variables and no mean differences for patients who received or did not receive a BMT (all ps > 0.05). Pearson product–moment correlations were used to examine the relationship between APTG, depression, and well-being across time. The APTG scale of new possibilities was related to depression (r = .25, p < 0.05) and total well-being (r = −.22, p < 0.05) that were measured at baseline. Anticipated PTG scales were not related to well-being or depression at nine months (all ps > 0.05).
Analysis of Mean Differences Between Patients and Collaterals Mean differences between study variables were examined by paired-sample t tests and effect sizes were calculated to examine the magnitude of the differences. Additionally, relationships between APTG and PTG scales were examined by Pearson product–moment correlations. There were higher
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TABLE 3 Means, Standard Deviation, and Correlations: Baseline Anticipated Posttraumatic Growth (APTG) and Nine-Month Posttraumatic Growth (PTG) for Patients and Collaterals APTG
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APTG Patients Total scale New possibilities Relationships Personal strength Appreciation of life Spiritual change Collaterals Total scale New possibilities Relationships Personal strength Appreciation of life Spiritual change
PTG
M
SD
M
SD
R
d
74.42 16.10 26.06 13.93 11.59 6.75
22.05 5.68 7.77 4.44 3.57 3.04
63.88 11.29 24.02 12.76 10.49 5.33
21.67 5.37 8.00 4.63 3.72 3.22
.41∗∗ .55∗∗∗ .29∗ .33∗ .48∗∗∗ .42∗∗
.36∗ .68∗∗∗ .21 .16 .21 .32∗
64.67 13.50 22.67 12.23 10.49 5.77
23.84 5.47 8.85 5.00 3.61 3.00
67.38 11.29 24.68 13.73 11.45 6.23
18.42 5.25 6.41 4.48 3.15 3.26
.69∗∗∗ .60∗∗∗ .66∗∗∗ .49∗∗ .38∗ .73∗∗∗
.10 .46∗∗ .22 .33 .28 .08
Note: For patients, n = 87 at baseline (APTG) and n = 49 at nine months (PTG); for collaterals, n = 55 at baseline and n = 31 at 9 months. Mean differences were examined by paired-samples t test. ∗ p < 0.05, ∗∗ p < 0.01, ∗∗∗ p < 0.001.
levels of expected growth for patients than for collaterals on several scales: total score, t (54) = 3.06, p = .003, d = .53; new possibilities, t(54) = 2.79, p = .007, d = .47; relationships with others, t(54) = 3.18, p = .002, d = .55; personal strength, t(54) = 2.60, p = .012, d = .41; and appreciation of life, t(54) = 2.67, p = .01, d = .44. Collateral APTG personal strength was related to patient APTG personal strength (r = .33, p < 0.05). Anticipated versus reported growth. Two criteria were used to determine patient and collateral “accuracy” in anticipating later growth. First, accuracy would be demonstrated if mean differences were nonsignificant between APTG and PTG scores, thus yielding small effect sizes. Additionally, accuracy could further be demonstrated by examining the amount of shared variance between APTG and PTG scores (see Table 3). Results suggest that patients overanticipated in all areas of growth. Results of paired-sample t tests for patients revealed that levels of anticipated growth—compared to reported growth—were significantly higher for total scale, new possibilities, and spiritual change. All anticipated growth scales were significantly correlated with their respective PTG scale at nine months: Shared variance between study variables ranged from .08 to .30. Except for the growth scale of new possibilities, collaterals underanticipated the level of growth that they believed that they would experience. Results for paired-sample t tests for collaterals revealed higher levels for APTG new possibilities compared to PTG new possibilities. All anticipated growth scales were significantly correlated with their respected PTG scale at 9 months with variance between variables that ranged from .14 to .53: total,
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TABLE 4 Means, Standard Deviations, and Correlations: Collateral Anticipated Posttraumatic Growth (APTG) and Patient Posttraumatic Growth (PTG) Collateral APTG Patient APTG
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Total scale New possibilities Relationships Personal strength Appreciation of life Spiritual change
Patient PTG
M
SD
M
SD
r
d
63.84 13.11 22.39 12.64 10.35 5.33
20.42 5.36 7.11 4.31 3.35 3.00
63.87 11.29 24.02 12.76 10.49 5.33
21.67 5.37 8.00 4.63 3.72 3.22
.26 .29 .17 .38∗ .03 .49∗∗
.07 .42∗ .13 .11 .02 .07
Note: For collaterals, n = 55 at baseline (APTG); for patients, n = 49 at 9 months (PTG). Mean differences were examined by paired-samples t-test. ∗ p < 0.05, ∗∗ p < 0.01.
new possibilities, relationships with others, personal strength, appreciation of life, and spiritual change. Corroboration of growth. With the exception of new possibilities, collaterals accurately predicted the level of PTG that patients would report. Paired-sample t tests revealed that APTG new possibilities was higher than Patient PTG new possibilities. All other mean differences were nonsignificant (p > 0.05) with effect sizes ranging from .02 to .11. Collaterals were most accurate in their predictions of patient PTG in the areas of personal strength and spiritual change, with shared variance being .14 and .24, respectively (see Table 4).
DISCUSSION This study addressed several questions concerning positive growth from the experience of diagnosis and treatment for cancer among patients and collaterals. The first question examined the relationships between demographic variables, medical variables, psychological well-being, and anticipated growth. There were few differences in anticipated growth due to these variables. Those differences that were there (more anticipated spiritual growth for patients with a curable disease and for patients with no previous diagnosis) might suggest that the first experience of cancer diagnosis and treatment poses the greatest shock to perceived well-being, and may promote higher expectations of growth. However, the longitudinal data revealed that anticipated growth at baseline was unrelated to well-being at nine months posttreatment. There may well be other influences that were not explored in this study between anticipation of growth and its experience. The second aim of the study was to consider differences between anticipation of personal growth and perceived growth by patients and their close family members or friends. Expectations of growth were similar to
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or higher than perceived growth that is typically reported following cancer treatments. Patients’ level of anticipated growth was higher than growth that was reported by several samples, including mixed cancer patients receiving hematopoietic stem cell transplantation (HSCT) and BMT treatments (Andrykowski et al., 2005; Widows, Jacobsen, Booth-Jones, & Fields, 2005) and patients with prostate cancer (Thornton & Perez, 2006). Similarly, collaterals also anticipated high levels of growth compared to reports of perceived growth by husbands of patients with breast cancer (Weiss, 2004), caregivers of children who are chronically ill (Moskowitz & Epel, 2006), and caregivers of patients with HIV/AIDS (Cadell, 2003). Results of this study were compared to studies which examined PTG from patient and partner perspectives (Manne et al., 2004; Moore et al., 2011; Thornton & Perez, 2006; Weiss, 2002). These studies have similar conclusions: When compared to partners, patients with cancer experience either more or similar levels of growth. In studies of patients with breast cancer and their partners (Manne et al., 2004; Weiss, 2002), patients with breast cancer reported higher levels of growth than partners. For example, Manne et al. (2004) examined PTG among patients with breast cancer and their partners at three different points in time: baseline (postsurgery), 9 months, and 18 months. When partner reports of patients were compared to patient selfreports, patients experienced higher levels of growth. A finding that is more consistent with that obtained in this study was derived from a sample of patients with prostate cancer and their partners. Survivors of prostate cancer and their partners reported similar levels of growth, and reports of growth were modestly related (Thornton, & Perez, 2006). The perceived threat of the event may assist in understanding anticipated growth for patients. Posttraumatic growth theory suggests that for growth to occur an event must be “seismic” to shatter one’s assumptions about life (Janoff-Bulman, 1992; Tedeschi & Calhoun, 1996, 2004). Event severity—or the perceived threat of the event—has been linked to increased levels of PTG among cancer populations (Stanton et al., 2006). Much research has documented negative sequelae that are associated with the cancer experience, for example, the negative impact on quality of life (Andrykowski et al., 2005). Patients were directly threatened by the cancer experience, whereas collaterals might have anticipated growth to a lesser degree due to their indirect experience. A family systems perspective can provide a theoretical framework for understanding collateral anticipated growth. Berger and Weiss (2009) identified a number of PTG components generalizable to a family system, including stressor event characteristics, challenges, and family rumination. The cancer experience affects the family system by disrupting the family, which may subsequently impact the manner in which family members interact, perform tasks, make decisions, and engage in problem solving. Traumatic events also impose a diverse set of challenges on the family and the family’s way of life
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may substantially shift from previous levels of functioning. These challenges can affect family roles/beliefs/traditions, family narrative/story, and communication between family members. Last, families may engage in rumination or cognitive processing, thought to be a key component in how growth develops (Tedeschi & Calhoun, 2004). For this study, anticipating expectations for the future can be viewed as a type of ruination that may have led to later growth. Another set of findings in this study was that collaterals were more accurate than patients had been in anticipating growth for themselves. Effect sizes for APTG and PTG scales were larger for patient differences compared to collateral differences, indicating a larger discrepancy between growth anticipated and growth perceived. The relationship between APTG and PTG scales was also stronger for collaterals: percent variance for collateral growth ranged from 14% to 53% whereas patient growth ranged from 8% to 30%. Why were patients less accurate—essentially overanticipating the growth that they would experience? As we have noted elsewhere (Tallman, 2013), PTG might well be an illusory rather than an actual phenomenon (Sumalla, Ochoa, & Blanco, 2009; Tennen & Affleck, 2009). A series of papers (Miller, Sherman, & Christensen, 2010) has critically considered analyses of PTG among medical patients that focus on measurement issues in assessment of growth and lack of behavioral corroboration of growth. Posttraumatic growth can be a biased means of self-preservation: Patients may perceive PTG as a mechanism of coping with the negative sequelae that are associated with trauma. Thus patients tend to overestimate the impact that a future event will have on their quality of life. This phenomenon has been referred to as “impact bias” (Gilbert, Pinel, Wilson, Blumberg, & Wheatley, 1998). Why were collaterals better able to anticipate growth for themselves and growth for patients? One possibility may be that collaterals’ mortality was called into question to a lesser degree than patients. Collaterals were likely affected by the cancer experience (Pitceathly & Maguire, 2003), but they may not have had to worry about immediate survival. The threat of cancer was greater for patients than for collaterals: Perceived threat of traumatic events has been linked to increased levels of PTG (Stanton et al., 2006). Collaterals might have been more accurate than patients in their anticipation of PTG, because cancer had not directly affected collaterals from a medical or health standpoint (e.g., diagnosis and treatment). Another possible explanation for collaterals’ having more accurate expectations for themselves stems from research on discounting theory. According to Cheng, Fung, & Chan, 2009, “discounting” is the process by which individuals manage the threat of future stressors by engaging in anticipated goal disengagement; that is, it may not be advantageous for older adults to hold unrealistic positive expectations of the future as opposed to holding a
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“not-so-bright” view of the future (Cheng, Fung, & Chan, 2009, p. 630). In a sample of 200 adults who were age 60 years or older, participants who had a more negative expectation of the future had higher levels of well-being than those who held an overly positive view of the future. The authors point to the fact that with more realistic or negative views of the future, older adults were better able to manage the normative losses and declines that took place. Collaterals in this study may have engaged in a similar discounting process, by taking into account the positive and negative impact the cancer experience would have on them and patients. Although this study did not assess participants’ anticipation of negative outcomes (e.g., losses or declines), results suggest greater accuracy for collaterals to anticipate future growth for themselves. The final aim of the study addressed the corroboration of growth. Results of this study can be compared to previous research which used similar methodologies to corroborate reports of growth (Moore et al., 2011; Park et al., 1996; Shakespeare-Finch & Enders, 2008; Weiss, 2002). Several differences and similarities were present between the current findings and findings of previous corroboration research. First, the degree to which growth variables were related to one another for significant others/caregivers and patient growth were higher for other studies compared to this study. This suggests a larger degree of corroboration in cross-sectional research. Collaterals in this study were anticipating future growth. Also, the extent of relationship closeness was not examined in this study. Previous research suggests a higher degree of corroboration for collaterals that are partners. For example, Moore et al. (2011) noted that the large degree of correlations between caregiver and patient PTG in their study may be related to relationship intimacy: most relationships were more than 30 years, and caregivers were intimately invested in patient care. Less intimate relationships between patients and collaterals may have decreased the accuracy of collateral reports of growth for patient, resulting in a lower degree of corroboration. Collaterals were most accurate in anticipating patients’ growth in the area of spiritual change. Changes in spirituality and religiosity are common among individuals who experience traumatic events (O’Rourke, Tallman, & Altmaier, 2008). Further, religious or spiritual coping has been linked to increased levels of PTG (Pargament, Koenig, & Perez, 2000). It may have been easier for collaterals to anticipate levels of spiritual growth because, compared to some of the other areas of growth (e.g., new possibilities), collaterals may have had a better understanding of patients’ baseline spiritual/religious levels. The accuracy in collaterals’ predictions of patient growth for spiritual changes may be attributed to the possible observable nature of spiritual and religious practices in the face of adversity. Reading religious materials and attending religious services are observable behaviors, thus, possibly providing collaterals with additional information to make future predictions.
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The results of this study should be interpreted in light of the limitations. This sample was predominately White, well educated, and from the Midwest. Participant attrition would affect outcomes, because patients with the poorest cancer outcomes likely did not participate at 9 months. Assessment of APTG was achieved with a modified version of the PTGI (Tedeschi & Calhoun, 1996), and small changes in scales could have affected validity. As was reported by Tallman, Shaw, Schultz, and Altmaier (2010) in a study of longterm survivors of HSCT, growth that had been assessed by the PTGI differed from growth that had been reported with open-ended assessments. Also, some participants may have already experienced PTG (e.g., ceiling effect). An important future consideration will be to examine growth from a family-systems perspective and to continue to address PTG from a cultural standpoint. The most commonly used PTG instrument—PTGI (Tedeschi & Calhoun, 1996)—assesses growth from an individualistic perspective. Future research should target specific aspects of family growth to include areas such as family identity/legacy, intimate interpersonal relationships, family priorities, and changes in family values/belief systems (Berger & Weiss, 2009). Also, additional research examining cultural considerations related to PTG is needed. Specifically, an examination of differences of family members/partners from Western and non-Western countries will help flesh out PTG as a cross-cultural construct (Splevins, Cohen, Bowley, & Joseph, 2010).
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