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Item Application of Terror Management Theory to End-Of-Life Care Decision-Making: A Narrative Literature Review(Sage, 2022-06) Perry, Laura M.; Mossman, Brenna; Lewson, Ashley B.; Gerhart, James I.; Freestone, Lily; Hoerger, Michael; Psychology, School of SciencePatients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received.Item Behavioral Measurement of Mindfulness: Preliminary Examination of its Validity and Change Following a Mindfulness-Based Intervention for Adults with Advanced Cancer and their Family Caregivers(2022-05) Lewson, Ashley B.; Mosher, Catherine E.; Johns, Shelley; Zapolski, TamikaMindfulness-based interventions (MBIs) have demonstrated efficacy in reducing symptoms in survivors of early-stage cancer and have shown promise in adults with advanced cancer and their family caregivers. These interventions may be especially helpful for coping with advanced cancer because acceptance and a greater focus on present-moment experiences are central to the adjustment process. Mindfulness may be a potential mechanism underlying MBI’s health effects, yet suboptimal assessment of mindfulness hinders examination of this hypothesis. Widely used self-report measures of mindfulness require participants to have high self-awareness and comprehend a complex skill and show limited responsiveness to MBIs. Behavioral assessment of mindfulness may address the limitations of self-report measures. The goal of the current study was to obtain preliminary evidence of the validity of a behavioral measure of mindfulness, Levinson and colleagues’ breath counting task, and its responsiveness to MBI among patients and caregivers coping with advanced cancer. Fifty-five patient-caregiver dyads were recruited from a university hospital and community clinics in Indiana. Dyads were randomized to either a 6-week MBI or a usual care control condition. Measures were administered at baseline prior to intervention (week 0), at the end of the 6-week intervention period (week 6), and 1-month post-intervention (week 10). Measures included the breath counting task, self-reported mindfulness, avoidant coping, and distress. Linear mixed modeling was used to determine whether the MEANING intervention led to increased behavioral and self-reported mindfulness compared to the usual care group. Caregivers in the MEANING condition showed improved behavioral mindfulness relative to caregivers in usual care, whereas patients in both the MEANING and usual care conditions showed relatively stable behavioral mindfulness over time. Additionally, there was no evidence that the MEANING intervention impacted behavioral mindfulness to a greater extent than self-reported mindfulness. To further examine the behavioral mindfulness measure’s validity, its relations with self-reported mindfulness, avoidant coping, and distress were examined at all time points. For both patients and caregivers, correlations between behavioral and self-reported mindfulness were small or nearly zero and were not uniformly positive. In the MEANING condition, correlations showed mostly small changes over time, and in the control condition, correlations generally showed little change over time. In addition, for patients and caregivers, most correlations between behavioral mindfulness and distress and avoidant coping were approaching zero or small. Results support the feasibility of the breath counting task in adults with advanced cancer and their caregivers, but provide limited support for its validity. The task warrants further evaluation in populations coping with chronic illness.Item Examining Health Behaviors of Chronic Disease Caregivers in the U.S.(Elsevier, 2022-03) Secinti, Ekin; Wu, Wei; Kent, Erin E.; Demark-Wahnefried, Wendy; Lewson, Ashley B.; Mosher, Catherine E.; Psychology, School of ScienceINTRODUCTION: Many informal caregivers experience a significant caregiving burden, which may interfere with their health behaviors. Caregiver health behaviors may vary by disease context, but this has rarely been studied. This study compares the health behaviors of prevalent groups of chronic illness caregivers (i.e., dementia, cancer, chronic obstructive pulmonary disease/emphysema, diabetes) with those of noncaregivers and examines whether caregiving intensity is associated with these behaviors. METHODS: In 2021, using pooled cross-sectional 2015-2019 Behavioral Risk Factor Surveillance System data, health behaviors (i.e., physical activity, diet, alcohol use, smoking, sleep, and influenza immunization) of caregivers of patients with dementia (n=5,525), cancer (n=4,246), chronic obstructive pulmonary disease/emphysema (n=1,959), and diabetes (n=2,853) and noncaregivers (n=203,848) were compared. Relationships between caregiving intensity (e.g., hours, type of tasks) and caregiver health behaviors were examined. Regression analyses were used to compare groups. RESULTS: Compared with noncaregivers, caregiver groups were more likely to report engaging in both risky (i.e., smoking, shorter sleep duration) and health-promoting (i.e., physical activity, vegetable consumption, abstaining from heavy drinking) behaviors, whereas nonsignificant differences were observed for influenza immunization. Longer caregiving hours and providing help with personal care were associated with poorer health behaviors (e.g., shorter sleep duration). Few differences in health behaviors were observed between caregivers of patients with dementia and other caregiver groups. CONCLUSIONS: Results suggest that caregivers are more likely to engage in both risky and health-promoting behaviors than noncaregivers. Furthermore, findings suggest that greater caregiving responsibilities are associated with certain risky health behaviors. Findings support the development and implementation of strategies to improve caregivers' health behaviors across disease contexts.Item Fear of Palliative Care: Roles of Age and Depression Severity(Mary Ann Liebert, 2022) Alonzi, Sarah; Perry, Laura M.; Lewson, Ashley B.; Mossman, Brenna; Silverstein, Madison W.; Hoerger, Michael; Psychology, School of ScienceBackground: Palliative care is underutilized due in part to fear and misunderstanding, and depression might explain variation in fear of palliative care. Objective: Informed by the socioemotional selectivity theory, we hypothesized that older adults with cancer would be less depressed than younger adults, and subsequently less fearful of utilizing palliative care. Setting/Subjects: Patients predominately located in the United States with heterogeneous cancer diagnoses (n = 1095) completed the Patient-Reported Outcomes Information System (PROMIS) Depression scale and rated their fear of palliative care using the Palliative Care Attitudes Scale (PCAS). We examined the hypothesized intercorrelations, followed by a bootstrapped analysis of indirect effects in the PROCESS macro for SPSS. Results: Participants ranged from 26 to 93 years old (mean [M] = 60.40, standard deviation = 11.45). The most common diagnoses were prostate (34.1%), breast (23.3%), colorectal (17.5%), skin (15.3%), and lung (13.5%) cancer. As hypothesized, older participants had lower depression severity (r = −0.20, p < 0.001) and were less fearful of palliative care (r = −0.11, p < 0.001). Participants who were more depressed were more fearful of palliative care (r = 0.21, p < 0.001). An indirect effect (β = −0.04, standard error = .01, 95% confidence interval: −0.06 to −0.02) suggested that depression severity may account for up to 40% of age-associated differences in fear of palliative care. Conclusions: Findings indicate that older adults with cancer are more likely to favor palliative care, with depression symptom severity accounting for age-related differences. Targeted interventions among younger patients with depressive symptoms may be helpful to reduce fear and misunderstanding and increase utilization of palliative care.Item Health-Related Quality of Life: A Comparative Analysis of Caregivers of People With Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015–2018 BRFSS(Oxford, 2021-11) Secinti, Ekin; Lewson, Ashley B.; Wu, Wei; Kent, Erin E.; Mosher, Catherine E.; Psychology, School of ScienceBackground Many informal caregivers experience significant caregiving burden and report worsening health-related quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has rarely been studied. Purpose Informed by the Model of Carer Stress and Burden, we compared HRQoL outcomes of prevalent groups of caregivers of people with chronic illness (i.e., dementia, cancer, chronic obstructive pulmonary disease [COPD]/emphysema, and diabetes) and noncaregivers and examined whether caregiving intensity (e.g., duration and hours) was associated with caregiver HRQoL. Methods Using 2015–2018 Behavioral Risk Factor Surveillance System data, we identified caregivers of people with dementia (n = 4,513), cancer (n = 3,701), COPD/emphysema (n = 1,718), and diabetes (n = 2,504) and noncaregivers (n = 176,749). Regression analyses were used to compare groups. Results Caregiver groups showed small, nonsignificant differences in HRQoL outcomes. Consistent with theory, all caregiver groups reported more mentally unhealthy days than noncaregivers (RRs = 1.29–1.61, ps < .001). Caregivers of people with cancer and COPD/emphysema reported more physically unhealthy days than noncaregivers (RRs = 1.17–1.24, ps < .01), and caregivers of people with diabetes reported a similar pattern (RR = 1.24, p = .01). However, general health and days of interference of poor health did not differ between caregivers and noncaregivers. Across caregiver groups, most caregiving intensity variables were unrelated to HRQoL outcomes; only greater caregiving hours were associated with more mentally unhealthy days (RR = 1.13, p < .001). Conclusions Results suggest that HRQoL decrements associated with caregiving do not vary substantially across chronic illness contexts and are largely unrelated to the perceived intensity of the caregiving. Findings support the development and implementation of strategies to optimize caregiver health across illness contexts.Item Increasing Readiness for Early Integrated Palliative Oncology Care: Development and Initial Evaluation of the EMPOWER 2 Intervention(Elsevier, 2021) Perry, Laura M.; Sartor, Oliver; Malhotra, Sonia; Alonzi, Sarah; Kim, Seowoo; Voss, Hallie M.; Rogers, James L.; Robinson, William; Harris, Kendra; Shank, Jessica; Morrison, David G.; Lewson, Ashley B.; Fuloria, Jyotsna; Miele, Lucio; Lewis, Brian; Mossman, Brenna; Hoerger, Michael; Psychology, School of ScienceContext: Early integrated palliative care improves quality of life, but palliative care programs are underutilized. Psychoeducational interventions explaining palliative care may increase patients' readiness for palliative care. Objectives: To 1) collaborate with stakeholders to develop the EMPOWER 2 intervention explaining palliative care, 2) examine acceptability, 3) evaluate feasibility and preliminary efficacy. Methods: The research was conducted at a North American cancer center and involved 21 stakeholders and 10 patient-participants. Investigators and stakeholders iteratively developed the intervention. Stakeholders rated acceptability of the final intervention. Investigators implemented a pre-post trial to examine the feasibility of recruiting 10 patients with metastatic cancer within one month and with a ≥50% consent rate. Preliminary efficacy outcomes were changes in palliative care knowledge and attitudes. Results: Using feedback from four stakeholder meetings, we developed a multimedia intervention tailored to three levels of health-literacy. The intervention provides knowledge and reassurance about the purpose and nature of palliative care, addressing cognitive and emotional barriers to utilization. Stakeholders rated the intervention and design process highly acceptable (3.78/4.00). The pilot met a priori feasibility criteria (10 patients enrolled in 14 days; 83.3% consent rate). The intervention increased palliative care knowledge by 83.1% and improved attitudes by 18.9 points on a 0 to 51 scale (Ps < 0.00001). Conclusions: This formative research outlines the development of a psychoeducational intervention about palliative care. The intervention is acceptable, feasible, and demonstrated promising pilot test results. This study will guide clinical teams in improving patients' readiness for palliative care and inform the forthcoming EMPOWER 3 randomized clinical trial.Item Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers(Springer Nature, 2024-09-28) Mosher, Catherine E.; Beck-Coon, Kathleen A.; Wu, Wei; Lewson, Ashley B.; Stutz, Patrick V.; Brown, Linda F.; Tang, Qing; Helft, Paul R.; Levoy, Kristin; Hickman, Susan E.; Johns, Shelley A.; Psychology, School of ScienceBackground: Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes. Methods: In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy. Results: Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning. Conclusions: A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.Item Symptom experiences in post-treatment cancer survivors: associations with acceptance and commitment therapy constructs(Springer, 2021) Lewson, Ashley B.; Johns, Shelley A.; Krueger, Ellen; Chinh, Kelly; Kidwell, Kelley M.; Mosher, Catherine E.; Psychology, School of SciencePurpose: Acceptance and Commitment Therapy (ACT) has improved symptom and quality-of-life outcomes in pilot research with post-treatment cancer survivors. To further test the ACT model, the present study examined relationships between ACT constructs and subgroups of post-treatment survivors based on the severity of common symptoms. Methods: Survivors who had completed primary treatment for stage I or II cancer (N = 203) participated in this one-time survey. Latent class analysis (LCA) was used to identify subgroups of survivors based on the severity of fatigue, sleep disturbance, pain, anxiety, and depressive symptoms. Multinomial logistic regressions employing Vermunt's 3-step approach were used to examine ACT constructs (e.g., mindfulness, acceptance, values progress) as correlates of survivor subgroups based on symptoms. Results: The LCA showed three survivor classes: (1) mild-to-moderate levels of all symptoms except for normal pain intensity; (2) mild anxiety, moderate fatigue, and normal levels of all other symptoms; and (3) normal levels of all symptoms. Lower mindfulness, acceptance, and values progress and higher cognitive fusion, psychological inflexibility, and values obstruction were associated with a greater likelihood of being in class 1 or 2 than in class 3. Conclusion: Findings are consistent with the ACT model. Survivors with greater symptom burden reported greater withdrawal from personally meaningful activities and less acceptance of their cancer diagnosis and internal experiences (e.g., thoughts, feelings, symptoms). Findings provide strong justification for further testing of ACT to reduce symptom-related suffering in cancer survivors.Item Symptom experiences in post-treatment cancer survivors: Associations with acceptance and commitment therapy constructs(SpringerLink, 2020-11-02) Lewson, Ashley B.; Johns, Shelley A.; Krueger, Ellen; Chinh, Kelly; Kidwell, Kelley M.; Mosher, Catherine E.; Psychology, School of SciencePurpose: Acceptance and commitment therapy (ACT) has improved symptom and quality-of-life outcomes in pilot research with post-treatment cancer survivors. To further test the ACT model, the present study examined relationships between ACT constructs and subgroups of post-treatment survivors based on the severity of common symptoms. Methods: Survivors who had completed primary treatment for stage I or II cancer (N=203) participated in this one-time survey. Latent class analysis (LCA) was used to identify subgroups of survivors based on the severity of fatigue, sleep disturbance, pain, anxiety, and depressive symptoms. Multinomial logistic regressions employing Vermunt’s 3-step approach were used to examine ACT constructs (e.g., mindfulness, acceptance, values progress) as correlates of survivor subgroups based on symptoms. Results: LCA showed three survivor classes: (1) mild to moderate levels of all symptoms except for normal pain intensity, (2) mild anxiety, moderate fatigue, and normal levels of all other symptoms, and (3) normal levels of all symptoms. Lower mindfulness, acceptance, and values progress and higher cognitive fusion, psychological inflexibility, and values obstruction were associated with a greater likelihood of being in class 1 or 2 than class 3. Conclusion: Findings are consistent with the ACT model. Survivors with greater symptom burden reported greater withdrawal from personally meaningful activities and less acceptance of their cancer diagnosis and internal experiences (e.g., thoughts, feelings, symptoms). Findings provide strong justification for further testing of ACT to reduce symptom-related suffering in cancer survivors.