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OBJECTIVE: Although palliative care can mitigate emotional distress, distressed patients may be less likely to engage in timely palliative care. This study aims to investigate the role of emotional distress in palliative care avoidance by examining the associations of anger, anxiety, and depression with palliative care attitudes. METHODS: Patients (N = 454) with heterogeneous cancer diagnoses completed an online survey on emotional distress and palliative care attitudes. Emotional distress was measured using the Patient-Reported Outcomes Measurement Information System anger, anxiety, and depression scales. The Palliative Care Attitudes Scale was used to measure palliative care attitudes. Regression models tested the impact of a composite emotional distress score calculated from all three symptom measures, as well as individual anger, anxiety, and depression scores, on palliative care attitudes. All models controlled for relevant demographic and clinical covariates. RESULTS: Regression results revealed that patients who were more emotionally distressed had less favorable attitudes toward palliative care (p < 0.001). In particular, patients who were angrier had less favorable attitudes toward palliative care (p = 0.013) while accounting for depression, anxiety, and covariates. Across analyses, women had more favorable attitudes toward palliative care than men, especially with regard to beliefs about palliative care effectiveness. CONCLUSIONS: Anger is a key element of emotional distress and may lead patients to be more reluctant toward timely utilization of palliative care. Although psycho-oncology studies routinely assess depression or anxiety, more attention to anger is warranted. More research is needed on how best to address anger and increase timely utilization of palliative cancer care.
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Neoplasias , Angústia Psicológica , Masculino , Humanos , Feminino , Depressão/terapia , Depressão/psicologia , Emoções , Ira , Ansiedade/terapia , Ansiedade/psicologia , Atitude , Cuidados Paliativos/psicologia , Neoplasias/terapiaRESUMO
Patients 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.
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BACKGROUND: 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.
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Demência , Diabetes Mellitus , Enfisema , Neoplasias , Doença Pulmonar Obstrutiva Crônica , Sistema de Vigilância de Fator de Risco Comportamental , Cuidadores , Humanos , Qualidade de VidaRESUMO
PURPOSE: 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.
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Terapia de Aceitação e Compromisso/métodos , Sobreviventes de Câncer/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Background: 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 (ß = -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.
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Neoplasias , Cuidados Paliativos , Adulto , Idoso , Idoso de 80 Anos ou mais , Depressão/terapia , Medo , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologiaRESUMO
INTRODUCTION: 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.
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Cuidadores , Comportamentos Relacionados com a Saúde , Sistema de Vigilância de Fator de Risco Comportamental , Doença Crônica , Estudos Transversais , HumanosRESUMO
CONTEXT: 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.