RESUMEN
Maternal mood and eating habits are associated with food parenting practices, including non-responsive feeding practices, which in turn impact children's eating habits. The COVID-19 pandemic may have negatively impacted maternal mood due to the overall stress and challenges, contributing to changes in eating behaviors and food parenting practices. The present study examined how maternal mood, body image, and eating concerns were related to perceived changes in feeding practices during the pandemic. A total of 137 mothers participated in an online study. Participants retrospectively reported their mood, eating habits, body dissatisfaction, and non-responsive feeding practices, before and during the pandemic, and responded to open-ended questions regarding changes in eating and feeding patterns during the pandemic. Results suggested differences in non-responsive feeding practices, including higher use of food as a reward for behavior and lower use of standard meal settings during the pandemic. In addition, significant relationships were found between higher maternal stress and higher body dissatisfaction (r = 0.37; p < .01), restrained eating (r = 31; p < .01), emotional eating (r = 0.44; p < .01), and higher use of overt and covert restriction retrospectively and during the pandemic. Results revealed trends in the same direction for depression and anxiety. Finally, qualitative findings were consistent with the quantitative findings, suggesting relationships between maternal mood, eating habits, and feeding practices. These results provide support for previous findings suggesting that the pandemic negatively impacted maternal well-being, increasing the use of some non-responsive feeding practices. Further work exploring the impacts of the pandemic on well-being, child feeding, and eating patterns is warranted.
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COVID-19 , Pandemias , Niño , Femenino , Humanos , Peso Corporal , Imagen Corporal , Estudios Retrospectivos , Relaciones Madre-Hijo/psicología , Responsabilidad Parental/psicología , COVID-19/epidemiología , Conducta Alimentaria/psicología , Madres/psicología , Conducta Infantil/psicología , Encuestas y Cuestionarios , Índice de Masa CorporalRESUMEN
Background: Individuals caring for patients with malignant gliomas experience high rates of anxiety; however, an in-depth understanding of their distress and evidence-based interventions to target their needs are lacking. Objective: We conducted semistructured interviews with caregivers with elevated anxiety to characterize their drivers of anxiety, identify modifiable intervention targets, and capture their preferences for a psychosocial intervention. Design: From 9/2017 to 3/2019, we conducted semistructured interviews with 21 caregivers of patients with malignant gliomas, at time points following the patient's diagnosis or within one to three months after the patient's death. Setting/Subjects: Eligible caregivers in the United States had clinically significant anxiety as measured by a Hospital Anxiety and Depression Scale-Anxiety score >7. Measurements: Three independent coders employed thematic content analysis to analyze the qualitative data with NVivo 12, achieving high intercoder agreement (Kappa = 0.98). Results: On average, caregivers were 54.81 years old (SD = 10.85) with elevated anxiety (M = 10.90, SD = 3.25). We identified six themes in which caregivers described (1) coping through reassurance seeking or avoidance, (2) changes in their relationship with the patient, (3) challenges with social support, (4) vacillation between certainty and uncertainty regarding the future, (5) devaluation of self-care for the patients' needs, and (6) challenges communicating with the health care team. Caregivers were interested in an intervention soon after the patient's diagnosis, yet expressed concern about finding the time to participate. Conclusions: Emergent themes characterized the distress experienced by caregivers of patients with malignant gliomas and provided insight into their psychosocial intervention preferences. We identified evidence-based intervention components based on the modifiable factors arising from these themes.
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Cuidadores , Glioma , Humanos , Persona de Mediana Edad , Cuidadores/psicología , Adaptación Psicológica , Ansiedad , PacientesRESUMEN
Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.
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Neoplasias , Adaptación Psicológica , Humanos , Neoplasias/psicología , Pronóstico , Psicometría , Encuestas y CuestionariosRESUMEN
BACKGROUND: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients' perceptions of their treatment goals versus how they perceive their oncologist's goals, and the association of these views with their psychological distress. METHODS: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients' reports of their treatment goal and their oncologist's treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients' psychological symptoms. RESULTS: We found that 61.7% of patients reported that both their treatment goal and their oncologist's treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist's goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist's goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist's goal was curative. Patients who reported both their goal and their oncologist's goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist's goal was curative. Patients with discordant perceptions of their goal and their oncologist's goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist's goal were curative. CONCLUSIONS: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist's goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
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Objetivos , Neoplasias , Distrés Psicológico , Ansiedad , Estudios Transversales , Depresión , Humanos , Neoplasias/psicología , Neoplasias/terapia , PercepciónRESUMEN
Introduction: Early palliative care (PC) integrated with oncology care improves quality of life (QOL), depression symptoms, illness understanding, and end-of-life (EOL) care for patients with advanced lung cancer. The aims of this trial are to compare the effect of delivering early integrated PC through telehealth versus in-person on patient and caregiver outcomes. We hypothesize that both modalities for delivering early PC would be equivalent for improving patient QOL, communication about EOL care preferences with their oncologist, and length of stay in hospice. Methods: For this comparative effectiveness trial, we will enroll and randomize 1250 adult patients with advanced nonsmall cell lung cancer (NSCLC), who are not being treated with curative intent, to receive either early integrated telehealth or in-person PC at 20 cancer centers throughout the United States. Patients may also invite a family caregiver to participate in the study. Patients and their caregivers in both study groups meet at least every four weeks with a PC clinician from within 12 weeks of patient diagnosis of advanced NSCLC until death. Participants complete measures of QOL, mood, and quality of communication with oncologists at baseline before randomization and at 12, 24, 36, and 48 weeks. Information on health care utilization, including length of stay in hospice, will be collected from patients' health records. To test equivalence in outcomes between study groups, we will compute analysis of covariance and mixed linear models, controlling for baseline scores and study site. Study Implementation and Stakeholder Engagement: To ensure that this comparative effectiveness trial and findings are as patient centered and meaningful as possible, we have incorporated a robust patient and stakeholder engagement plan. Our stakeholder partners include (1) patients/families, (2) PC clinicians, (3) telehealth experts and clinician users, (4) representatives from health care systems and medical insurance providers, and (5) health care policy makers and advocates. These stakeholders will inform and provide feedback about every phase of study implementation.
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Carcinoma de Pulmón de Células no Pequeñas/terapia , Neoplasias Pulmonares/terapia , Enfermería Oncológica/organización & administración , Cuidados Paliativos/organización & administración , Cuidados Paliativos/estadística & datos numéricos , Telemedicina/organización & administración , Telemedicina/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Diagnóstico Precoz , Femenino , Humanos , Masculino , Persona de Mediana Edad , Enfermería Oncológica/estadística & datos numéricos , Prevención Secundaria/estadística & datos numéricos , Estados UnidosRESUMEN
Chronic graft-versus-host disease (GVHD) is one of most common complications following allogeneic hematopoietic cell transplantation (HCT) and the most significant contributor to morbidity and nonrelapse mortality. The physical burdens and psychosocial difficulties of these patients have not been described systematically. An exploration into the rates and correlates of mood and quality of life (QOL) in patients with chronic GVHD is necessary to develop a clinically relevant, evidence-based intervention to promote well-being. From July 2015 to July 2017, adult allogeneic HCT survivors with established moderate to severe chronic GVHD (Nâ¯=â¯52) enrolled in a prospective, longitudinal study at a tertiary academic center. We examined the rates and correlates of depression and anxiety symptoms (Hospital Anxiety and Depression Scale) and explored whether constructs including coping strategies (Coping Inventory for Stressful Situations), symptom burden (Lee Symptom Assessment Scale), physical functioning (Human Activity Profile), and perceived social support (Medical Outcomes Study Social Support Survey) predicted QOL trajectory over time (Functional Assessment of Cancer Therapy-Bone Marrow Transplant) at the baseline, 3-month, and 6-month follow-up. Analyses adjusted for age, sex, chronic GVHD severity, and time since chronic GVHD diagnosis. At the baseline, 3-month, and 6-month follow-up, 32.7%, 31.1%, and 37.8% of patients reported clinically significant depression symptoms, and 30.8%, 20.0%, and 36.4% reported clinically elevated anxiety symptoms, respectively. Adjusting for covariates, greater use of negative emotion-oriented coping (ßâ¯=â¯0.20, Pâ¯=â¯.002), less use of task-oriented coping (ßâ¯=â¯-0.10, Pâ¯=â¯.021), worse physical functioning (ßâ¯=â¯-0.07, Pâ¯=â¯.004), and higher symptom burden (ßâ¯=â¯0.07, Pâ¯=â¯.002) were independently associated with depression symptoms at baseline. Greater use of negative emotion-oriented coping (ßâ¯=â¯0.28, P < .001) and worse physical functioning (ßâ¯=â¯-0.05, Pâ¯=â¯.034) were independently associated with anxiety at baseline. Patients who used more negative emotion-oriented coping (ßâ¯=â¯-0.58, Pâ¯=â¯.035), had less task-oriented (ßâ¯=â¯0.40, Pâ¯=â¯.028) and social diversion-oriented coping (ßâ¯=â¯0.35, Pâ¯=â¯.039), and had higher symptom burden (ßâ¯=â¯-0.30, Pâ¯=â¯.001), worse physical functioning (ßâ¯=â¯0.32, P < .001), and lower perceived social support (ßâ¯=â¯6.47, Pâ¯=â¯.003) at baseline reported poorer QOL over time. The unmet physical and psychosocial needs of patients with chronic GVHD are substantial and warrant investigation into evidence-based interventions that may improve QOL and mood by targeting modifiable psychosocial constructs identified in this study.