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1.
Ann Surg ; 279(1): 65-70, 2024 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-37389893

RESUMEN

OBJECTIVES: To evaluate the relationship between distressing symptoms and changes in disability after major surgery and to determine whether this relationship differs according to the timing of surgery (nonelective vs elective), sex, multimorbidity, and socioeconomic disadvantage. BACKGROUND: Major surgery is a common and serious health event that has pronounced deleterious effects on both distressing symptoms and functional outcomes in older persons. METHODS: From a cohort of 754 community-living persons, aged 70 or older, 392 admissions for major surgery were identified from 283 participants who were discharged from the hospital. The occurrence of 15 distressing symptoms and disability in 13 activities were assessed monthly for up to 6 months after major surgery. RESULTS: Over the 6-month follow-up period, each unit increase in the number of distressing symptoms was associated with a 6.4% increase in the number of disabilities [adjusted rate ratio (RR): 1.064; 95% CI: 1.053, 1.074]. The corresponding increases were 4.0% (adjusted RR: 1.040; 95% CI: 1.030, 1.050) and 8.3% (adjusted RR: 1.083; 95% CI: 1.066, 1.101) for nonelective and elective surgeries. Based on exposure to multiple (ie, 2 or more) distressing symptoms, the adjusted RRs (95% CI) were 1.43 (1.35, 1.50), 1.24 (1.17, 1.31), and 1.61 (1.48, 1.75) for all, nonelective, and elective surgeries. Statistically significant associations were observed for each of the other subgroups with the exception of individual-level socioeconomic disadvantage for the number of distressing symptoms. CONCLUSIONS: Distressing symptoms are independently associated with worsening disability, providing a potential target for improving functional outcomes after major surgery.


Asunto(s)
Personas con Discapacidad , Hospitalización , Humanos , Anciano , Anciano de 80 o más Años , Estudios Prospectivos , Procedimientos Quirúrgicos Electivos/efectos adversos , Alta del Paciente , Actividades Cotidianas
2.
Crit Care Med ; 2024 Sep 18.
Artículo en Inglés | MEDLINE | ID: mdl-39298623

RESUMEN

OBJECTIVES: Older adults who survive critical illness are at risk for increased disability, limiting their independence and quality of life. We sought to evaluate whether the occurrence of symptoms that restrict activity, that is, restricting symptoms, is associated with increased disability following an ICU hospitalization. DESIGN: Prospective longitudinal study of community-living adults 70 years old or older who were interviewed monthly between 1998 and 2018. SETTING: South Central Connecticut, United States. PATIENTS: Two hundred fifty-one ICU admissions from 202 participants who were discharged alive from the hospital. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Occurrence of 15 restricting symptoms (operationalized as number of symptoms and presence of ≥ 2 symptoms) and disability in activities of daily living, instrumental activities of daily living, and mobility was ascertained during monthly interviews throughout the study period. We constructed multivariable Poisson regression models to evaluate the association between post-ICU restricting symptoms and subsequent disability over the 6 months following ICU hospitalization, adjusting for known risk factors for post-ICU disability including pre-ICU disability, frailty, cognitive impairment, mechanical ventilation, and ICU length of stay. The mean age of participants was 83.5 years (sd, 5.6 yr); 57% were female. Over the 6 months following ICU hospitalization, each unit increase in the number of restricting symptoms was associated with a 5% increase in the number of disabilities (adjusted rate ratio, 1.05; 95% CI, 1.04-1.06). The presence of greater than or equal to 2 restricting symptoms was associated with a 29% greater number of disabilities over the 6 months following ICU hospitalization as compared with less than 2 symptoms (adjusted rate ratio, 1.29; 95% CI, 1.22-1.36). CONCLUSIONS: In this longitudinal cohort of community-living older adults, symptoms restricting activity were independently associated with increased disability after ICU hospitalization. These findings suggest that management of restricting symptoms may enhance functional recovery among older ICU survivors.

3.
Am J Respir Crit Care Med ; 208(11): 1206-1215, 2023 12 01.
Artículo en Inglés | MEDLINE | ID: mdl-37769149

RESUMEN

Rationale: Survivors of critical illness have multiple symptoms, but how restricting symptoms change after critical illness and whether these changes differ among vulnerable subgroups is unknown. Objectives: To evaluate changes in restricting symptoms over the six months after critical illness among older adults and to determine whether these changes differ by sex, multimorbidity, and individual- and neighborhood-level socioeconomic disadvantage. Methods: From a prospective longitudinal study of 754 community-living adults ⩾70 years old interviewed monthly (1998-2018), we identified 233 admissions from 193 participants to the ICU. The occurrence of 15 restricting symptoms, defined as those leading to restricted activity, were ascertained during interviews in the month before ICU admission (baseline) and each of the six months after hospital discharge. Measurements and Main Results: The occurrence and number of restricting symptoms increased more than threefold in the six months after a critical illness hospitalization (adjusted rate ratio [95% confidence interval], 3.1 [2.1-4.6] and 3.3 [2.1-5.3], respectively), relative to baseline. These increases were largest in the first month after hospitalization (adjusted rate ratio [95% confidence interval], 5.3 [3.8-7.3] and 5.4 [3.9-7.5], respectively] before declining and becoming nonsignificant in the third month. Increases in restricting symptoms did not differ significantly by sex, multimorbidity, or individual- or neighborhood-level socioeconomic disadvantage. Conclusions: Restricting symptoms increase substantially after a critical illness before returning to baseline three months after hospital discharge. Our findings highlight the need to incorporate symptom management into post-ICU care and for further investigation into whether addressing restricting symptoms can improve quality of life and functional recovery among older ICU survivors.


Asunto(s)
Unidades de Cuidados Intensivos , Calidad de Vida , Humanos , Anciano , Estudios Longitudinales , Enfermedad Crítica/epidemiología , Estudios Prospectivos
4.
Nurs Res ; 73(2): 109-117, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-37967228

RESUMEN

BACKGROUND: People with heart failure (HF) often report insomnia with daytime consequences, including fatigue and decreased functional performance. Cognitive behavioral therapy for insomnia is an efficacious treatment, but few have access because of a shortage of trained sleep specialists. Access may be improved by offering it where people with HF receive care. OBJECTIVES: The purpose of this study was to explore the perceptions of nurses who specialize in HF regarding the value of cognitive behavioral therapy for insomnia to their patients, the feasibility of offering it in HF clinical settings, its delivery by nurses, and preferences for modes of delivery. METHODS: We used a descriptive qualitative study design. We recruited focus group participants via e-mail to American Association of Heart Failure Nurses members and through requests for nurse collaborators to distribute within their networks. We conducted focus groups via Zoom. After describing cognitive behavioral therapy for insomnia and its efficacy for people with HF, we elicited perceptions about its value if provided in the HF outpatient clinical setting, facilitators and barriers to implementation, and other ways to increase access. We audio-recorded and transcribed the discussions. Two researchers coded the data and performed thematic analysis. RESULTS: Four focus groups included 23 registered nurses and advanced practice nurses employed in outpatient HF clinics. We identified five themes: "Insomnia Overlooked," "Cognitive Behavioral Therapy for Insomnia Works," "Nurses' Role," "Barriers and Supports," and "Modes of Delivery." Nurses endorsed the importance of insomnia to people with HF and the value of providing cognitive behavioral therapy. They expressed interest in evaluating and addressing sleep, the need for increased resources to address it, and multiple modes of delivery. All nurses believed they had a role in promoting sleep health but differed in their views about providing cognitive behavioral therapy for insomnia. DISCUSSION: Nurses specializing in HF support the implementation of cognitive behavioral therapy for insomnia. Implementation studies are needed to identify effective methods to increase access to this efficacious treatment in outpatient HF clinical settings, including support and training for nurses who are interested and able to deliver it.


Asunto(s)
Terapia Cognitivo-Conductual , Insuficiencia Cardíaca , Enfermeras y Enfermeros , Trastornos del Inicio y del Mantenimiento del Sueño , Humanos , Grupos Focales , Trastornos del Inicio y del Mantenimiento del Sueño/terapia , Estudios de Factibilidad , Terapia Cognitivo-Conductual/métodos , Insuficiencia Cardíaca/complicaciones , Insuficiencia Cardíaca/terapia
5.
J Card Fail ; 29(1): 112-115, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-35842103

RESUMEN

BACKGROUND: Multiple guidelines recommend specialty palliative care (PC) for patients with heart failure (HF), including patients with left ventricular assist devices (LVADs). However, the degree of integration and clinicians' perceptions of PC in HF care remain incompletely characterized. METHODS AND RESULTS: A 36-item survey was sent to 2109 members of the Heart Failure Society of America. Eighty respondents (53% physicians), including 51 respondents from at least 42 medical centers, completed the survey, with the majority practicing in urban (76%) academic medical centers (62%) that implanted LVADs (81%). Among the 42 unique medical centers identified, respondents reported both independent (40%) and integrated (40%) outpatient PC clinic models, whereas 12% reported not having outpatient PC at their institutions. A minority (12%) reported that their institution used triggered PC referrals based on objective clinical data. Of respondents from LVAD sites, the majority reported that a clinician from the PC team was required to see all patients prior to implantation, but there was variability in practices. Among all respondents, the most common reasons for PC referral in HF were poor prognosis, consideration of advanced cardiac therapies or other high-risk procedures and advance-care planning or goals-of-care discussions. The most frequent perceived barriers to PC consultation included lack of PC clinicians, unpredictable HF clinical trajectories and limited understanding of how PC can complement traditional HF care. CONCLUSION: PC integration and clinician perceptions of services vary in HF care. More research and guidance regarding evidence-based models of PC delivery in HF are needed.


Asunto(s)
Insuficiencia Cardíaca , Médicos , Humanos , Cuidados Paliativos , Insuficiencia Cardíaca/terapia , Encuestas y Cuestionarios , Derivación y Consulta
6.
Nurs Outlook ; 71(3): 101985, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37156190

RESUMEN

BACKGROUND: The Self- and Family Management Framework was created in 2006 to help structure self- and family management science. Based on a series of reviews and syntheses of emerging research and critical evaluation, we developed the Framework into a robust nursing theory. PURPOSE: In this article, we reintroduce the Self- and Family Management Framework as the Middle Range Theory of Self- and Family Management of Chronic Illness. METHODS: We review steps in the development and updating of the Framework, share rationale for advancement to a middle range theory, explicate components of the newly designed model, and propose future directions. DISCUSSION AND CONCLUSION: It is our hope that this middle range theory will guide researchers and clinicians more comprehensively in supporting patients and families managing chronic illness, which will in turn inform continued theory development.


Asunto(s)
Familia , Teoría de Enfermería , Humanos , Enfermedad Crónica
7.
Nurs Outlook ; 71(1): 101890, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36404158

RESUMEN

BACKGROUND: The Self- and Family Management Framework (SFMF) identifies factors and outcomes of patient and family management of chronic illness. In a previous citation analysis, we reported the frequency and nature of use of the SFMF. PURPOSE: We conducted a sub-analysis of quantitative articles in the citation analysis to examine testing of relationships depicted in the SFMF. METHODS: We analyzed study purposes, independent and dependent variables, study implications, and text that referred to the SFMF in 40 articles. FINDINGS: The SFMF has been used largely to explore factors affecting SFM behaviors, focusing on patient versus family self-management. Independent variables included all categories of facilitators/barriers specified in the SFMF. Dependent variables included all SFMF components (Facilitators/Barriers, Processes, Proximal and Distal Outcomes). Racial/ethnic diversity was limited among study participants. Study implications pertained mostly to psychosocial outcomes. Most studies referred to the SFMF generally. DISCUSSION: Findings will contribute to revision of the SFMF.


Asunto(s)
Automanejo , Humanos , Enfermedad Crónica , Autocuidado
8.
Nurs Outlook ; 71(4): 102024, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37487421

RESUMEN

BACKGROUND: The National Clinician Scholars Program (NCSP) is an interprofessional postdoctoral fellowship for physicians and nurses with a PhD. or DNP focused on health services research, policy, and leadership. PURPOSE: To evaluate 5-year outcomes of nurse postdoctoral scholars in the NCSP. METHODS: We describe the 5-year outcomes of nurse fellows and graduates from six NCSP sites (positions, number of peer-reviewed publications, citations, and h-index). CONCLUSION: There were 53 nurses in the sample (34 alumni, 19 fellows). Approximately half (47%, n = 16) of alumni had tenure-track faculty positions and had bibliometric performance indicators (such as h-indices) 2 to 4 times greater than those previously reported for assistant professors in nursing schools nationally. NCSP nurse scholars and alumni also had an impact on community partnerships, health equity, and health policy DISCUSSION: This study highlights the potential of interprofessional postdoctoral fellowships such as the NCSP to prepare nurse scientists for health care leadership roles.


Asunto(s)
Médicos , Formación Posdoctoral , Humanos , Personal de Salud , Atención a la Salud , Servicios de Salud , Becas
9.
Nurs Outlook ; 69(6): 991-1020, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34183187

RESUMEN

BACKGROUND: The Self- and Family Management Framework (SFMF) was created in 2006 and revised in 2015 to guide research on self- and family management of chronic conditions. There has been no review of use of the SFMF. PURPOSE: We reviewed articles citing the SFMF to identify the frequency and nature of use. METHOD: We conducted a citation analysis, searching Web of Science, Scopus, and Google Scholar databases and extracted key data from identified articles. FINDINGS: Of 126 articles, 84(66%) cited the 2006 SFMF, 37(29%) cited the 2015 SFMF, and 6(5%) cited both. The SFMF was used most to inform study design. Users noted strengths (e.g., considers family context) and limitations (e.g., non-specification of patient- family caregiver synergies) of the framework. DISCUSSION: The SFMF has been used broadly to guide research on self- and family management of chronic conditions. Findings will inform development of a third version of the SFMF.


Asunto(s)
Bibliometría , Enfermedad Crónica/psicología , Familia/psicología , Proyectos de Investigación , Automanejo , Bases de Datos Factuales , Humanos
10.
J Fam Nurs ; 27(1): 55-72, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33334232

RESUMEN

Family caregivers play an integral role in supporting patient self-management, yet how they perform this role is unclear. We conducted a qualitative metasynthesis of family caregivers' processes to support patient self-management of chronic, life-limiting illness and factors affecting their support. Methods included a systematic literature search, quality appraisal of articles, data abstraction, and data synthesis to produce novel themes. Thirty articles met inclusion criteria, representing 935 international family caregivers aged 18 to 89 years caring for patients with various health conditions. Three themes characterized family caregivers' processes to support patient self-management: "Focusing on the Patient's Illness Needs," "Activating Resources to Support Oneself as the Family Caregiver," and "Supporting a Patient Living with a Chronic, Life-Limiting Illness." Factors affecting family caregivers' support included Personal Characteristics, Health Status, Resources, Environmental Characteristics, and the Health Care System. The family caregiver role in supporting patient self-management is multidimensional, encompassing three processes of care and influenced by multiple factors.


Asunto(s)
Cuidadores , Automanejo , Enfermedad Crónica , Atención a la Salud , Humanos
11.
J Cardiovasc Nurs ; 34(5): 390-398, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31365442

RESUMEN

BACKGROUND: Pain and sleep disturbance are common among patients with heart failure (HF) and are associated with symptom burden, disability, and poor quality of life. Little is known about the associations between specific sleep characteristics and pain in people with HF. OBJECTIVE: The aim of this study was to describe the relationships between nocturnal sleep characteristics, use of sleep medication, and daytime sleep characteristics and pain among people with HF. METHODS: We conducted a cross-sectional study of stable participants with HF. We administered the SF36 Bodily Pain Scale, Pittsburgh Sleep Quality Index, and Sleep Habits Questionnaire and obtained 3 days of wrist actigraphy and 1 night of home unattended polysomnography. We conducted bivariate analyses and generalized linear models. RESULTS: The sample included 173 participants (mean [SD] age, 60 [16.1] years; 65.3% [n = 113] male). Insomnia symptoms (P = .0010), sleep duration (P = .0010), poor sleep quality (P = .0153), use of sleep medications (P = .0170), napping (P = .0029), and daytime sleepiness (P = .0094) were associated with increased pain. Patients with the longest sleep duration, who also had insomnia, had more pain (P = .0004), fatigue (P = .0028), daytime sleepiness (P = .0136), and poorer sleep quality (P < .0001) and took more sleep medications (P = .0029) than did those without insomnia. CONCLUSIONS: Pain is associated with self-reported poor sleep quality, napping, daytime sleepiness, and use of sleep medication. The relationship between pain and sleep characteristics differs based on the presence of insomnia and sleep duration. Studies are needed to evaluate the causal relationships between sleep and pain and test interventions for these cooccurring symptoms.


Asunto(s)
Insuficiencia Cardíaca/complicaciones , Dolor/complicaciones , Trastornos del Inicio y del Mantenimiento del Sueño/complicaciones , Actigrafía , Estudios Transversales , Fatiga/complicaciones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Dimensión del Dolor , Polisomnografía , Estudios Retrospectivos , Fármacos Inductores del Sueño/uso terapéutico , Trastornos del Inicio y del Mantenimiento del Sueño/tratamiento farmacológico
12.
J Stroke Cerebrovasc Dis ; 28(6): 1759-1766, 2019 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-30879712

RESUMEN

GOAL: Interhospital transfer (IHT) facilitates access to specialized neurocritical care but may also introduce unique risk. Our goal was to describe providers' perceptions of safety threats during IHT for patients with nontraumatic intracranial hemorrhage. MATERIALS AND METHODS: We employed qualitative, semi-structured interviews at an academic medical center receiving critically-ill neurologic transfers, and 5 referring hospitals. Interviewees included physicians, nurses, and allied health professionals with experience caring for patients transferred between hospitals for nontraumatic intracranial hemorrhage. Interviews continued until data saturation was reached. Coding occurred concurrently with interviews. Analysis was inductive, using the constant comparative method. FINDINGS: The predominant impediments to safe, high-quality neurocritical care transitions between hospitals are insufficient communication, gaps in clinical practice, and lack of IHT structure. Insufficient communication highlights the unique communication challenges specific to IHT, which overlay and compound known intrahospital communication barriers. Gaps in clinical practice revolve primarily around the provision of neurocritical care for this patient population, often subject to resource availability, by receiving hospital emergency medicine providers. Lack of structure outlines providers' questions that emerge when institutions fail to identify process channels, expectations, and accountability during complex neurocritical care transitions. CONCLUSIONS: The predominant impediments to safe, high-quality neurocritical care transitions between hospitals are insufficient communication, gaps in clinical practice, and lack of IHT structure. These themes serve as fundamental targets for quality improvement initiatives. To our knowledge, this is the first description of challenges to quality and safety in high-risk neurocritical care transitions through clinicians' voices.


Asunto(s)
Prestación Integrada de Atención de Salud/organización & administración , Hemorragias Intracraneales/terapia , Seguridad del Paciente , Transferencia de Pacientes/organización & administración , Actitud del Personal de Salud , Conducta Cooperativa , Conocimientos, Actitudes y Práctica en Salud , Humanos , Comunicación Interdisciplinaria , Entrevistas como Asunto , Hemorragias Intracraneales/diagnóstico , Grupo de Atención al Paciente/organización & administración , Brechas de la Práctica Profesional , Pronóstico , Investigación Cualitativa , Medición de Riesgo , Factores de Riesgo , Factores de Tiempo
13.
Nurs Educ Perspect ; 40(2): 113-115, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30394989

RESUMEN

A key element in the comprehensive physical exam is the patient interview in which the nurse practitioner (NP) elicits information from the patient to help guide in the discovery of a health issue. Technologies that allow the NP student to view patient interviews from the patient's perspective may enhance interviewing techniques and promote therapeutic interview behaviors. We report the results of a pilot program for NP students enrolled in an advanced health assessment course. Student volunteers conducted interviews with patient actors. Actors wore Google Glass®, an optical head-mounted device with video-recording capabilities.


Asunto(s)
Educación de Postgrado en Enfermería , Enfermeras Practicantes , Estudiantes de Enfermería , Humanos , Aprendizaje , Proyectos Piloto
14.
Int J Palliat Nurs ; 24(2): 56-63, 2018 Feb 02.
Artículo en Inglés | MEDLINE | ID: mdl-29469647

RESUMEN

BACKGROUND: In Israel, palliative care (PC) services are limited. This study assessed Israeli nurses' perceived competencies and educational needs in providing PC. DESIGN: Online administration of the End-of-Life Professional Caregiver Survey (EPCS). SETTING/SUBJECTS: Oncology and PC nurses were identified through the Israel Ministry of Health and Oncology Nurses' Society. MEASUREMENTS: Demographic and practice data were analysed using analysis of variance tests to determine differences between nurse characteristics by EPCS domains. RESULTS: The sample (n=105) was 94% female, had a mean age of 48 years (SD=10.5) and 83% were Jewish Israeli. Thirty-nine percent reported PC training in nursing school and 42% felt their workplace provided little to no PC education and resources to nurses. Those with advanced degrees and those who received post-graduate PC training had higher mean scores across EPCS domains (p<0.05 for all). CONCLUSIONS: Nursing education and workplace support in PC for Israeli nurses are limited. It is hoped that these findings may inform future PC nursing education and policy in Israel.


Asunto(s)
Competencia Clínica , Personal de Enfermería/psicología , Cuidados Paliativos , Autoimagen , Adulto , Femenino , Humanos , Israel , Masculino , Persona de Mediana Edad , Personal de Enfermería/normas , Encuestas y Cuestionarios
15.
Am J Hosp Palliat Care ; 41(5): 545-557, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-37309610

RESUMEN

Background: Prognostic communication between clinicians and parents in pediatric oncology is complex. However, no review has exclusively examined research on prognostic communication in pediatric oncology. In this review, we synthesize the evidence on prognostic communication in pediatric oncology and provide recommendations for future research. Methods: We conducted an integrative review searching six databases for studies on prognostic communication in pediatric oncology as of August 2022. We applied descriptive and narrative approaches to data analysis. Results: Fourteen quantitative and five qualitative studies were included. All studies were conducted in Western developed countries. In total, 804 parents of 770 children with cancer were included. Across studies, parents were predominately female, Non-Hispanic White, and had high school or higher levels of education. Most parents reported that prognostic communication was initiated in the first year after their children's diagnosis. High-quality prognostic communication was positively associated with trust and hope and negatively associated with parental distress and decisional regret. In qualitative studies, parents suggested that prognostic communication should be open, ongoing, and delivered with sensitivity. Most studies were of moderate quality. The main gaps included inconsistent definitions of prognostic communication, and a lack of comprehensive and validated measurements, high-quality longitudinal studies, and diverse settings and participants. Conclusions: Clinicians should initiate high-quality prognostic communication early on in clinical practice. Future research should consider conducting high-quality longitudinal studies, developing prognostic communication definitions and measurements, and conducting studies across settings with diverse populations.


Asunto(s)
Neoplasias , Padres , Niño , Humanos , Femenino , Pronóstico , Comunicación , Oncología Médica
16.
J Pain Symptom Manage ; 68(5): 516-524.e1, 2024 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-39142495

RESUMEN

CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. OBJECTIVES: To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. METHODS: We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. RESULTS: Across N = 124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F = 9.26, P = 0.003). Preparation for EOL fully mediated this association. CONCLUSION: Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement.


Asunto(s)
Comunicación , Pesar , Neoplasias , Padres , Cuidado Terminal , Humanos , Femenino , Masculino , Padres/psicología , Neoplasias/psicología , Estudios Transversales , Persona de Mediana Edad , Niño , Cuidado Terminal/psicología , Adulto , Relaciones Profesional-Familia , Preescolar , Adolescente
17.
J Am Geriatr Soc ; 72(1): 59-68, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-37947240

RESUMEN

BACKGROUND: While the Veterans Health Administration (VA) has long provided hospice care within VA community living centers (CLCs, i.e., VA nursing homes), an increasing number of Veterans are receiving hospice in VA-contracted community nursing homes (CNHs). However, little data exist about the quality of end-of-life (EOL) care provided in CNHs. The aim of this study was to compare family ratings of the quality of EOL care provided to Veterans receiving hospice in VA CLCs and VA-contracted CNHs. METHODS: We conducted a retrospective analysis of national data from VA's electronic medical record and Bereaved Family Survey (BFS) for Veterans who received hospice in VA CLCs or VA-contracted CNHs between October 2021 and March 2022. The final sample included 1238 Veterans who died in either a CLC (n = 1012) or a CNH (n = 226) and whose next-of-kin completed the BFS. Our primary outcome was the BFS global rating of care received in the last 30 days of life. Secondary outcomes included BFS items related to symptom management, communication, emotional and spiritual support, and information about burial and survivor benefits. We compared unadjusted and adjusted proportions for all BFS outcomes between those who received hospice in CLCs and CNHs. RESULTS: The adjusted proportion of family members who gave the best possible rating (a score of 9 or 10 out of a possible 10) for the overall care received near EOL was more than 13 percentage points higher for Veterans who received hospice in VA CLCs compared to VA-contracted CNHs. Our findings also revealed quality gaps of even greater magnitude in specific EOL care-focused domains. CONCLUSIONS: Our findings document inadequacies in the quality of multiple aspects of EOL care provided to Veterans in CNH-based hospice and illuminate the urgent need for policy and practice interventions to improve this care.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Cuidado Terminal , Veteranos , Humanos , Estados Unidos , Estudios Retrospectivos , Cuidado Terminal/psicología , Casas de Salud , Encuestas y Cuestionarios , United States Department of Veterans Affairs
18.
J Pain Symptom Manage ; 68(1): 22-31.e1, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38561132

RESUMEN

CONTEXT: Clinical practice guidelines recommend palliative care for people with advanced heart failure (aHF), yet it remains underutilized. OBJECTIVES: We examined medical center variation in specialist palliative care (SPC) and identified factors associated with variation among people with aHF. METHODS: We conducted a retrospective cohort study of 21,654 people with aHF who received healthcare in 83 Veterans Affairs Medical Centers (VAMCs) from 2018-2020. We defined aHF with ICD-9/10 codes and hospitalizations. We used random intercept multilevel logistic regression to derive SPC reach (i.e., predicted probability) for each VAMC adjusting for demographic and clinical characteristics. We then examined VAMC-level SPC delivery characteristics associated with predicted SPC reach including the availability of outpatient SPC (proportion of outpatient consultations), cardiology involvement (number of outpatient cardiology-initiated referrals), and earlier SPC (days from aHF identification to consultation). RESULTS: Of the sample the mean age = 72.9+/-10.9 years, 97.9% were male, 61.6% were White, and 32.2% were Black. The predicted SPC reach varied substantially across VAMCs from 9% to 57% (mean: 28% [95% Confidence Interval: 25%-30%]). Only the availability of outpatient SPC was independently associated with higher SPC reach. VAMCs, in which outpatient delivery made up the greatest share of SPC consultations (9% or higher) had 11% higher rates of SPC reach relative to VAMCs with a lower proportion of outpatient SPC. CONCLUSION: SPC reach varies widely across VAMCs for people with aHF. Outpatient palliative is common among high-reach VAMCs but its role in reach warrants further investigation. Strategies used by high-reach VAMCs may be potential targets to test for implementation and dissemination.


Asunto(s)
Insuficiencia Cardíaca , Cuidados Paliativos , United States Department of Veterans Affairs , Humanos , Insuficiencia Cardíaca/terapia , Masculino , Femenino , Anciano , Estados Unidos , Estudios Retrospectivos , Persona de Mediana Edad , Derivación y Consulta , Anciano de 80 o más Años , Veteranos , Hospitalización , Hospitales de Veteranos , Especialización
19.
J Pain Symptom Manage ; 68(4): 329-339, 2024 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-38810950

RESUMEN

CONTEXT: Little is known about Veterans who die during a short terminal admission, which renders them ineligible for the Department of Veterans Affairs (VA) Bereaved Family Survey. OBJECTIVES: We sought to describe this population and identify opportunities to improve end-of-life (EOL) care quality. METHODS: Retrospective, cohort analysis of Veteran decedents who died in a VA inpatient setting between October 2018-September 2019. Veterans were dichotomized by short (<24 hours) and long (≥24 hours) terminal admissions; sociodemographics, clinical characteristics, VA and non-VA healthcare use, and EOL care quality indicators were compared. RESULTS: Among 17,033 inpatient decedents, 723 (4%) had short terminal admissions. Patients with short compared to long terminal admissions were less likely to have a VA hospitalization (38% vs. 54%) in the last 90 days of life and were more likely to die in an intensive care (49% vs 21%) or acute care (27% vs 18%) unit. Patients with a short compared to long admission were about half as likely to receive hospice (33% vs 64%) or palliative care (33% vs 69%). Most patients with short admissions (76%) had a life-limiting condition (e.g., cancer, chronic obstructive pulmonary disease) and those with cancer were more likely to receive palliative care compared to those with non-cancer conditions. CONCLUSION: Veterans with short terminal admissions are less likely to receive hospice or palliative care compared to patients with long terminal admissions. Many patients with short terminal admissions, such as those with life-limiting conditions (especially cancer), receive aspects of high-quality EOL care, however, opportunities for improvement exist.


Asunto(s)
Cuidado Terminal , Veteranos , Humanos , Masculino , Femenino , Anciano , Estudios Retrospectivos , Estados Unidos , Anciano de 80 o más Años , Hospitalización , Calidad de la Atención de Salud , Persona de Mediana Edad , United States Department of Veterans Affairs , Mejoramiento de la Calidad , Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Factores de Tiempo
20.
J Palliat Med ; 26(6): 784-789, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36516127

RESUMEN

Background: There are many challenges in communication and cultural barriers for patients with limited English proficiency (LEP) who suffer from serious illnesses. Palliative care utilization among this population remains limited and the experiences of medical interpreters during palliative care encounters remain understudied. Methods: We conducted semistructured video interviews with interpreters working at an academic medical center. Interview questions explored interpreters' observations and experiences during palliative care encounters with LEP patients. We performed thematic analysis of the interview contents. Results: Our study included 20 interpreters who interpret in 9 languages with a mean experience of 16.3 years. We identified four themes from the interviews that shed light on the challenges of incorporating palliative care into the care of patients with LEP: (1) lack of a verbatim interpretation for the term "palliative care," (2) poor patient understanding of their treatment goals, (3) suboptimal timing of palliative care involvement, and (4) fears and misconceptions related to palliative care. Owing to challenges in word choice, the timing of palliative care involvement, and poor understanding of palliative care, interpreters observed that many patients with LEP declined palliative care involvement in their treatment plan. Conclusions: In this study, we identified several actionable barriers interpreters noted to incorporating palliative care into care of patients with LEP. Interventions directed toward providing LEP patients with standardized culturally appropriate information on palliative care are needed.


Asunto(s)
Dominio Limitado del Inglés , Humanos , Traducción , Cuidados Paliativos , Lenguaje , Comunicación , Barreras de Comunicación
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