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1.
Palliat Med Rep ; 4(1): 292-299, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37915951

RESUMEN

Background: Idiopathic pulmonary fibrosis (IPF) is a serious illness with an unpredictable disease course and survival rates comparable with some cancers. Patients with IPF suffer considerable symptom burden, declining quality of life, and high health care resource utilization. Patients and caregivers report many unmet needs, including a desire for more education regarding diagnosis and assistance with navigating disease trajectory. Compelling evidence suggests that palliative care (PC) provides an extra layer of support for patients with serious illness. Research Question: The purpose of this survey was to gain perspectives regarding PC for patients with IPF by board-certified pulmonologists in South Carolina (SC). Study Design and Methods: A 24-item survey was adapted (with permission) from the Pulmonary Fibrosis Foundation PC Survey instrument. Data were analyzed and results are presented. Results: Pulmonologists (n = 32, 44%) completed the survey; 97% practice in urbanized settings. The majority agreed that PC and hospice do not provide the same service. There were varying views about comfort in discussing prognosis, disease trajectory, and addressing advance directives. Options for ambulatory and inpatient PC are limited and early PC referral does not occur. None reported initiating a PC referral at time of initial IPF diagnosis. Interpretation: Pulmonologists in SC who participated in this survey are aware of the principles of PC in providing comprehensive care to patients with IPF and have limited options for PC referral. PC educational materials provided early in the diagnosis can help facilitate and guide end-of-life planning and discussions. Minimal resources exist for patients in underserved communities.

2.
Int J Yoga Therap ; 33(2023)2023 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-37798804

RESUMEN

Family caregivers of adults with Alzheimer's disease and related dementias (ADRD) are the fastest growing group of informal healthcare providers in the United States. These individuals experience high levels of stress and physical and psychosocial symptoms related to their caregiving role. We provided 20 ADRD caregivers (≥ 55 years of age) with training and access to a mobile health app for at-home practice of gentle yoga and yoga breathing exercises. Here, we report secondary outcomes, including changes in caregiver physical and mental function, burden, fatigue, sleep, and biological stress markers (salivary cortisol and 1,5-anhydroglucitol [1,5-AG] assays) from Baseline (Week 1) to Study End (Week 12). Self-reported questionnaire data were collected online via the Research Electronic Data Capture system, and biomarker data were collected via saliva samples. Results supported indications for slight improvement in outcomes of caregiving burden among ADRD caregivers using the gentle yoga and yoga breathing app. Furthermore, slight improvements in mental health were observed; the greatest gains were made by those reporting higher burden and having family members with more severe dementias. Findings indicate that those experiencing the greatest improvement in caregiver burden scores spent the most time doing gentle yoga and yoga breathing exercises. Salivary stress biomarkers moved in a favorable direction (decreased cortisol; increased 1,5-AG) among caregivers practicing the exercises most often. This is among the first studies of gentle yoga and yoga breathing exercises for relieving ADRD caregiver burden and the first we are aware of to incorporate stress biomarker measurement.


Asunto(s)
Demencia , Yoga , Adulto , Humanos , Cuidadores/psicología , Hidrocortisona , Demencia/terapia , Demencia/psicología , Biomarcadores
3.
J Pediatr Hematol Oncol Nurs ; 39(4): 209-220, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35791853

RESUMEN

Background: Chronic red cell transfusion (CRCT) therapy is one of a few effective disease-modifying therapies for children with sickle cell anemia (SCA). CRCT is recommended for primary and secondary stroke prevention for at-risk children with SCA and is sometimes used for other disease-related complications. However, CRCT can be resource- and time-intensive for patients/families, providers, and organizations. This study was conducted to provide a comprehensive, multilevel examination of barriers and facilitators to transfusion therapy in children with SCA from health care provider and caregiver perspectives. Methods: A qualitative descriptive approach was used to conduct key informant interviews in a sample of 26 caregivers and 25 providers across the United States. Interviews were analyzed using directed content analysis with the Multilevel Ecological Model of Health as an initial coding framework and the constant comparison method. Results: Ten barrier themes and 10 facilitator themes emerged across all ecological levels. Themes most commonly occurred on the patient and organizational levels. Key barriers themes included Logistical Challenges, Obtaining and Maintaining Venous Access, Alloantibodies/Alloimmunization and Reactions, and Iron Overload and Adherence to Chelation Therapy. Key facilitator themes included Nursing and Non-nursing Staff Support, Positive Child/Family Experiences, Logistical Help and Social Resources, Blood Bank and Access to Blood, and Transfusion-Specific Resources. Discussion: The comprehensive understanding of multilevel barriers and facilitators to transfusion therapy, including the role of nursing, in children with SCA can inform strategies to improve CRCT for patients/families and providers and can also be applied by organizations seeking to implement transfusion services for SCA.


Asunto(s)
Anemia de Células Falciformes , Transfusión de Eritrocitos , Anemia de Células Falciformes/terapia , Cuidadores , Terapia por Quelación , Niño , Personal de Salud , Humanos , Estados Unidos
4.
JMIR Form Res ; 4(10): e20501, 2020 Oct 06.
Artículo en Inglés | MEDLINE | ID: mdl-33021484

RESUMEN

BACKGROUND: African Americans (AAs) experience greater sleep quality problems than non-Hispanic Whites (NHWs). Meditation may aid in addressing this disparity, although the dosage levels needed to achieve such benefits have not been adequately studied. Smartphone apps present a novel modality for delivering, monitoring, and measuring adherence to meditation protocols. OBJECTIVE: This 6-month dose-response feasibility trial investigated the effects of a breathing awareness meditation (BAM) app, Tension Tamer, on the secondary outcomes of self-reported and actigraphy measures of sleep quality and the modulating effects of ethnicity of AAs and NHWs. METHODS: A total of 64 prehypertensive adults (systolic blood pressure <139 mm Hg; 31 AAs and 33 NHWs) were randomized into 3 different Tension Tamer dosage conditions (5,10, or 15 min twice daily). Sleep quality was assessed at baseline and at 1, 3, and 6 months using the Pittsburgh Sleep Quality Index (PSQI) and 1-week bouts of continuous wrist actigraphy monitoring. The study was conducted between August 2014 and October 2016 (IRB #Pro00020894). RESULTS: At baseline, PSQI and actigraphy data indicated that AAs had shorter sleep duration, greater sleep disturbance, poorer efficiency, and worse quality of sleep (range P=.03 to P<.001). Longitudinal generalized linear mixed modeling revealed a dose effect modulated by ethnicity (P=.01). Multimethod assessment showed a consistent pattern of NHWs exhibiting the most favorable responses to the 5-min dose; they reported greater improvements in sleep efficiency and quality as well as the PSQI global value than with the 10-min and 15-min doses (range P=.04 to P<.001). Actigraphy findings revealed a consistent, but not statistically significant, pattern in the 5-min group, showing lower fragmentation, longer sleep duration, and higher efficiency than the other 2 dosage conditions. Among AAs, actigraphy indicated lower sleep fragmentation with the 5-min dose compared with the 10-min and 15-min doses (P=.03 and P<.001, respectively). The 10-min dose showed longer sleep duration than the 5-min and 15-min doses (P=.02 and P<.001, respectively). The 5-min dose also exhibited significantly longer average sleep than the 15-min dose (P=.03). CONCLUSIONS: These findings indicate the need for further study of the potential modulating influence of ethnicity on the impact of BAM on sleep indices and user-centered exploration to ascertain the potential merits of refining the Tension Tamer app with attention to cultural tailoring among AAs and NHWs with pre-existing sleep complaints.

5.
J Perianesth Nurs ; 34(2): 259-264, 2019 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30205934

RESUMEN

PURPOSE: The aim of this study was to evaluate the use of a lavender aromatherapy skin patch on anxiety and vital sign variability during the preoperative period in female patients scheduled for breast surgery. DESIGN: This observational pilot study used a one-group, pretest and post-test design. METHODS: Participants received an aromatherapy patch in addition to standard preoperative care. Anxiety levels were assessed with a 10-cm visual analog scale at baseline and then every 15 minutes after patch placement. Vital sign measurements were recorded at the same interval. FINDINGS: There was a statistically significant decrease (P = .03) in the anxiety visual analog scale measurements from baseline to final scores. CONCLUSIONS: Findings from this study suggest the use of aromatherapy is beneficial in reducing anxiety experienced by females undergoing breast surgery. Further research is needed to address the experience of preoperative anxiety, aromatherapy use, and the challenges of managing preoperative anxiety.


Asunto(s)
Ansiedad/terapia , Aromaterapia/métodos , Mama/cirugía , Cuidados Preoperatorios/métodos , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad/etiología , Femenino , Humanos , Lavandula , Persona de Mediana Edad , Proyectos Piloto , Adulto Joven
6.
Health Psychol ; 37(9): 850-860, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-30010353

RESUMEN

OBJECTIVE: Essential hypertension (EH) is the most common chronic disease in the United States and a major cause of morbidity and mortality. Lifestyle interventions (e.g., diet, exercise, stress management) to reduce blood pressure (BP) are often complex with varying effectiveness. Breathing awareness meditation (BAM) is a stress management strategy with encouraging effects on BP, though widespread dissemination is hampered by the lack of an easy-to-use methodology to train and monitor BAM practices. A smartphone application (Tension Tamer [TT]) that implements BAM and tracks adherence has shown promise in addressing these gaps. This 6-month dose-response feasibility trial evaluated effects of the app on BP to further optimize BAM user guidelines. METHODS: Sixty-four adults with prehypertension were randomized to complete TT-guided BAM sessions for 5-, 10-, or 15-min intervals twice daily over 6 months. Continuous heart rate readings derived from the phone's video camera via reflective photoplethysmography were used as feedback and as an index of time-stamped adherence. Outcomes (resting BP, HR) were collected at baseline, 1-, 3-, and 6-months. RESULTS: Mixed modeling results showed a significant time effect for systolic BP (SBP) with a dose-response effect at Months 3 and 6. Adherence declined over time and was lowest in the 15-min dose condition, though SBP reductions were maintained. Generally, adherence was negatively associated with dose as the study progressed. CONCLUSIONS: Smartphone-implemented BAM appears to reduce SBP and can be a low-cost method to reach large populations. (PsycINFO Database Record


Asunto(s)
Monitoreo Ambulatorio de la Presión Arterial/métodos , Presión Sanguínea/fisiología , Meditación/métodos , Prehipertensión/fisiopatología , Teléfono Inteligente/estadística & datos numéricos , Adulto , Estudios de Factibilidad , Femenino , Humanos , Masculino
7.
Mhealth ; 3: 44, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-29184896

RESUMEN

BACKGROUND: Chronic stress is an independent risk factor for essential hypertension (EH), cardiovascular disease (CVD), and is sometimes confronted by mal-adaptive coping behaviors (e.g., stress eating, excessive alcohol consumption, etc.). Pre-essential hypertension (preEH) is the leading predictor of future EH status. Breathing awareness meditation (BAM) can result in clinically beneficial blood pressure (BP) reductions, though face-to-face sessions presents barriers to reach those in need. The purpose of this study was to identify if a culturally tailored approach is needed in the design and preferences between groups of preEH African American and White adults toward using a smartphone BAM app, the Tension Tamer (TT) app. METHODS: TT includes audio delivered BAM instructions, real-time heart rate, feedback graphs and motivational reinforcement text messaging. Questionnaires and two focus groups each of African American and White adults, [n=34, mean age =43.1 years, (SD 13.8 years), 44.1% African American] were conducted to understand stress, EH knowledge, app usage along with feedback from a hands-on demonstration of TT. Grounded theory using NVivo 10 was used to develop themes and combined with the questionnaires in the analysis. RESULTS: No racial differences were found in the analysis including app use scenarios, preferences, knowledge, technology use or the attitudes and acceptance toward mobile health (mHealth) programs. Reported stress was high for African Americans [PSS-4: mean 6.87 (SD 3.3) versus mean 4.56 (SD 2.6); P=0.03]. Four main themes were found: (I) stress was pervasive; (II) coping strategies were both positive and negative; (III) BAM training was easy to incorporated; and (IV) tracking stress responses was useful. Responses suggest that additional personalization of app interfaces may drive ownership and adherence to protocols. Measures and reports of heart rate monitoring while in session were favorably viewed with low issues with confidentiality or trust issues on collected session data. CONCLUSIONS: Results suggest that a culturally tailored approach may be unnecessary in the design of BAM apps. Further investigation is warranted for other racial groups, age ranges, and disease conditions.

8.
J Altern Complement Med ; 20(4): 241-50, 2014 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-24620850

RESUMEN

OBJECTIVE: Evidence is accumulating, predominantly among clinical trials in adults, that yoga improves blood pressure (BP) control, with downregulation of the hypothalamic-pituitary-adrenal (HPA) axis and the sympathetic nervous system (SNS) projected as underlying mechanisms. This pilot study assessed whether Hatha yoga has the potential to reduce BP among youth and whether dampening of the SNS and/or HPA activity is a likely pathway of change. DESIGN: Thirty-one seventh graders were randomly assigned to a Hatha yoga program (HYP) or attention control (AC) music or art class. Baseline and 3-month evaluations included resting BP; overnight urine samples; and saliva collected at bedtime, upon awakening, and at 30 and 60 minutes after awakening for α-amylase and cortisol assays. RESULTS: Twenty-eight (14 in the HYP group and 14 in the AC group) students were assessed both before and after the intervention. BP changes from pre- to post-intervention were -3.0/-2.0 mmHg for the HYP group and -0.07/-0.79 mmHg for the AC group (p=0.30 and 0.57, respectively). Changes in systolic BP (SBP)/diastolic BP (DBP) for the prehypertensive (75th-94th percentiles for SBP) subgroup analyses were -10.75/-8.25 mmHg for the HYP group (n=4) versus 1.8/1.0 mmHg for the AC group (n=5) (p for SBP=0.02; p for DBP=0.09). Although no statistically significant group differences were observed with changes in SNS or HPA awakening curves (area under curve for α-amylase and cortisol, respectively), a small to moderate effect size was seen favoring a reduction of α-amylase activation for the HYP group (Cohen d=0.34; prehypertensive d=0.20). CONCLUSIONS: A school-based Hatha yoga program demonstrated potential to decrease resting BP, particularly among prehypertensive youth. Reduced SNS drive may be an underlying neurohormonal pathway beneficially affected by the program. A large-scale efficacy/effectiveness randomized clinical trial is warranted.


Asunto(s)
Presión Sanguínea/fisiología , Hidrocortisona/sangre , Prehipertensión/terapia , alfa-Amilasas Salivales/análisis , Yoga , Niño , Femenino , Humanos , Masculino , Prehipertensión/sangre , Prehipertensión/fisiopatología
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