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1.
Front Med (Lausanne) ; 11: 1316475, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38903809

RESUMO

Introduction: Clinician implicit racial bias (IB) may lead to lower quality care and adverse health outcomes for Black patients. Educational efforts to train clinicians to mitigate IB vary widely and have insufficient evidence of impact. We developed and pilot-tested an evidence-based clinician IB curriculum, "REACHing Equity." Methods: To assess acceptability and feasibility, we conducted an uncontrolled one-arm pilot trial with post-intervention assessments. REACHing Equity is designed for clinicians to: (1) acquire knowledge about IB and its impact on healthcare, (2) increase awareness of one's own capacity for IB, and (3) develop skills to mitigate IB in the clinical encounter. We delivered REACHing Equity virtually in three facilitated, interactive sessions over 7-9 weeks. Participants were health care providers who completed baseline and end-of-study evaluation surveys. Results: Of approximately 1,592 clinicians invited, 37 participated, of whom 29 self-identified as women and 24 as non-Hispanic White. Attendance averaged 90% per session; 78% attended all 3 sessions. Response rate for evaluation surveys was 67%. Most respondents agreed or strongly agreed that the curriculum objectives were met, and that REACHing Equity equipped them to mitigate the impact of implicit bias in clinical care. Participants consistently reported higher self-efficacy for mitigating IB after compared to before completing the curriculum. Conclusions: Despite apparent barriers to clinician participation, we demonstrated feasibility and acceptability of the REACHing Equity intervention. Further research is needed to develop objective measures of uptake and clinician skill, test the impact of REACHing Equity on clinically relevant outcomes, and refine the curriculum for uptake and dissemination.ClinicalTrials.gov ID: NCT03415308.

2.
J Am Geriatr Soc ; 72(7): 2148-2156, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38666330

RESUMO

BACKGROUND: Seriously ill patients rely on spiritual and existential beliefs to support coping and approach crucial treatment and healthcare decisions. Yet, we lack gold standard, validated approaches to gathering information on those spiritual beliefs. Therefore, we developed I-SPIRIT, a spiritual needs and beliefs inventory for those with serious illness (IIR-10-050). METHODS: In prior work to develop measure content, we interviewed a total of 74 participants: 20 patients (veterans with Stage IV cancer, CHF, COPD, ESRD), 19 caregivers, 14 chaplains, 10 social workers, 12 nurses, and 5 physicians. Using directed content analyses, we identified over 50 attributes of spiritual experience comprising five domains: overall importance of spirituality; affiliations and practices; impact on decisions; spiritual needs; and spiritual resources. We then translated these attributes into individual items with Likert response scales. In the quantitative validation of I-SPIRIT, we administered the instrument and a battery of comparison measures to 249 seriously ill veterans. The comparison measures captured general spiritual well-being, religious coping, and emotional functioning. Convergent and discriminant validity was examined with the FACIT-sp (faith, meaning, and purpose), BMMRS (religious/spirituality), POMS and PHQ-8 (emotional function), and FACT-G (quality of life). We administered the I-SPIRIT a week later, for test-retest reliability. RESULTS: Psychometric analyses yielded a final I-SPIRIT Tool including 30 items. Results demonstrated reliability and validity and yielded a tool with three main components: Spiritual Beliefs (seven items); Spiritual Needs (nine items); and Spiritual Resources (14 items). The Spiritual Beliefs items include key practices and affiliations, and impact of beliefs on healthcare. Higher levels of Spiritual Needs were associated with higher anxiety and depression. CONCLUSION: The I-Spirit measures relevance of spirituality, spiritual needs and spiritual resources and demonstrates validity, reliability, and acceptability for patients with serious illness.


Assuntos
Adaptação Psicológica , Espiritualidade , Humanos , Masculino , Feminino , Idoso , Reprodutibilidade dos Testes , Pessoa de Meia-Idade , Psicometria , Inquéritos e Questionários , Estado Terminal/psicologia , Adulto , Veteranos/psicologia
3.
J Palliat Med ; 27(4): 526-531, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38394228

RESUMO

Background: Many older adults with advanced heart failure receive home health rehabilitation after hospitalization. Yet, integration of palliative care skills into rehabilitation is limited. Objective: Describe using the Multiphase Optimization Strategy (MOST) framework with human-centered design principles to engage clinical partners in the Preparation phase of palliative physical therapy intervention development. Design: We convened a home-based physical therapy advisory team (four clinicians, three clinical leaders) to identify physical therapist needs and preferences for incorporating palliative care skills in rehabilitation and design an intervention prototype. Results: Between 2022 and 2023, we held five advisory team meetings. Initial feedback on palliative care skill preferences and training needs directly informed refinement of our conceptual model and skills in the intervention prototype. Later feedback focused on reviewing and revising intervention content, delivery strategy, and training considerations. Conclusion: Incorporating human-centered design principles within the MOST provided a useful framework to partner with clinical colleagues in intervention design.


Assuntos
Insuficiência Cardíaca , Cuidados Paliativos , Humanos , Idoso , Modalidades de Fisioterapia , Insuficiência Cardíaca/terapia
4.
Contemp Clin Trials ; 135: 107363, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37884120

RESUMO

BACKGROUND: Many patients with advanced cancer describe pain as a debilitating symptom that greatly interferes with daily activities and enjoyment of life. Psychosocial interventions can improve cancer-related pain but rarely address spiritual concerns (e.g., loss of meaning, peace), which can influence the pain experience for those facing life-threatening illness. To address these needs, we systematically developed and pilot tested a novel psychosocial intervention called Meaning-Centered Pain Coping Skills Training (MCPC). In this randomized controlled trial, we aim to determine MCPC's efficacy for reducing pain interference (primary outcome) and improving secondary outcomes. We will also estimate MCPC's cost-effectiveness. METHOD/DESIGN: Patients (target N = 210) with advanced solid tumor malignancies (Stage IV) and clinically-elevated pain interference will be enrolled and block randomized with equal allocation to MCPC + enhanced usual care or enhanced usual care alone. MCPC's four, videoconferenced, 45-60 min weekly sessions will be individually delivered by trained study therapists. Primary (pain interference) and secondary (pain severity, anxiety and depressive symptoms, pain self-efficacy, social support, spiritual well-being) patient-reported outcomes will be assessed at baseline, and 8-weeks (primary endpoint) and 12-weeks after baseline. CONCLUSION: Our MCPC intervention is the first to systematically address the biopsychosocial-spiritual aspects of pain in patients with advanced cancer. If MCPC demonstrates efficacy, next steps will involve hybrid efficacy-effectiveness and implementation work to broaden access to this brief, manualized, remotely-delivered intervention, with the goal of reducing suffering in patients with life-threatening illness.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Neoplasias/complicações , Neoplasias/terapia , Neoplasias/patologia , Dor , Ansiedade/etiologia , Ansiedade/terapia , Adaptação Psicológica , Ensaios Clínicos Controlados Aleatórios como Assunto
5.
Psychooncology ; 32(7): 1096-1105, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37173865

RESUMO

OBJECTIVE: For patients with advanced cancer, pain is a common and debilitating symptom that can negatively impact physical, emotional, and spiritual well-being. This trial examined the feasibility and initial effects of Meaning-Centered Pain Coping Skills Training (MCPC), a cognitive-behavioral pain management intervention with an emphasis on enhancing meaning (i.e., a personal sense of purpose, worth, and significance) and peace. METHODS: We enrolled 60 adults with stage IV solid tumor cancers and moderate-severe pain between February 2021 and February 2022. Participants were randomized 1:1 to MCPC + usual care or usual care alone. Meaning-Centered Pain Coping Skills Training consisted of four weekly 60-min individual sessions via videoconference or telephone, delivered by a trained therapist using a manualized protocol. Participants completed validated measures of pain severity, pain interference, pain self-efficacy, spiritual well-being (i.e., meaning, peace, and faith), and psychological distress at baseline and 5-week and 10-week follow-ups. RESULTS: All feasibility metrics exceeded prespecified benchmarks. Fifty-eight percent of screened patients were eligible, and 69% of eligible patients consented. Of those assigned to MCPC, 93% completed all sessions and 100% of those who completed follow-ups reported using coping skills weekly. Retention was strong at 5-week (85%) and 10-week (78%) follow-ups. Meaning-Centered Pain Coping Skills Training participants reported better scores than control participants across outcome measures, including moderate-to-large sized differences at 10-week follow-up in pain severity (Cohen's d = -0.75 [95% confidence interval: -1.36, -0.14]), pain interference (d = -0.82 [-1.45, -0.20]), and pain self-efficacy (d = 0.74 [0.13, 1.35]). CONCLUSIONS: MCPC is a highly feasible, engaging, and promising approach for improving pain management in advanced cancer. Future efficacy testing is warranted. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04431830, registered 16 June 2020.


Assuntos
Segunda Neoplasia Primária , Neoplasias , Adulto , Humanos , Projetos Piloto , Neoplasias/terapia , Neoplasias/psicologia , Dor , Adaptação Psicológica , Emoções
6.
J Pain Symptom Manage ; 66(2): 123-136, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37080478

RESUMO

CONTEXT: While professional societies and expert panels have recommended quality indicators related to advance care planning (ACP) documentation, including using structured documentation templates, it is unclear how clinicians document these conversations. OBJECTIVE: To explore how clinicians document ACP, specifically, which components of these conversations are documented. METHODS: A codebook was developed based on existing frameworks for ACP conversations and documentation. ACP documentation from a hospital medicine quality improvement project conducted from November 2019 to April 2021 were included and assessed. Documentation was examined for the presence or absence of each component within the coding schema. Clinician documented ACP using three different note types: template (only template prompts were used), template plus (authors added additional text to the template), and free text only. ACP note components were analyzed by note type and author department. RESULTS: A total of 182 ACP notes were identified and reviewed. The most common note type was template plus (58%), followed by free text (28%) and template (14%). The most frequent components across all note types were: important relationships to patient (92%), and discussion of life-sustaining treatment preferences (87%). There was considerable heterogeneity in the components across note types. The presence of components focused on treatment decisions and legal paperwork differed significantly between note types (P < 0.05). Components on preference for medical information, emotional state, or spiritual support were rarely included across all note types. CONCLUSION: This study provides a preliminary exploration of ACP documentation and found that templates may influence what information is documented after an ACP conversation.


Assuntos
Planejamento Antecipado de Cuidados , Humanos , Comunicação , Documentação
7.
J Palliat Med ; 26(1): 73-78, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35861545

RESUMO

Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Methods: This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Results: We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusions: A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.


Assuntos
Islamismo , Pais , Criança , Humanos , Feminino , Estados Unidos , Masculino , Pesquisa Qualitativa , Atenção à Saúde , Medo
8.
J Diabetes Complications ; 37(1): 108364, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36525906

RESUMO

In this single-arm pilot study, we demonstrated feasibility and acceptability of an insulin simplification intervention in patients with persistent, poorly-controlled type 2 diabetes on complex insulin regimens. While not powered to assess clinical outcomes, we observed neither worsened glycemic control nor increased hypoglycemia.


Assuntos
Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Humanos , Hipoglicemiantes/efeitos adversos , Diabetes Mellitus Tipo 2/tratamento farmacológico , Projetos Piloto , Diabetes Mellitus Tipo 1/terapia , Glicemia , Controle Glicêmico , Insulina/efeitos adversos
9.
J Relig Health ; 2022 Dec 07.
Artigo em Inglês | MEDLINE | ID: mdl-36478542

RESUMO

Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) at baseline and 12-month follow-up. Of the 165 patients with spiritual well-being data at follow-up, 65 (39%) experienced probable clinically meaningful changes (> 0.5 SD) in spiritual well-being (35 improved, 30 declined). Increased pain (p = 0.04), decreased dyspnea (p < 0.01), and increased life completion (p = 0.02) were associated with improvement in overall spiritual well-being. Exploratory analyses found different predictors for FACIT-Sp subscales.

10.
Trials ; 23(1): 712, 2022 Aug 26.
Artigo em Inglês | MEDLINE | ID: mdl-36028908

RESUMO

BACKGROUND: For patients and their intimate partners, advanced cancer poses significant challenges that can negatively impact both individuals and their relationship. Prior studies have found evidence that couple-based communication skills interventions can to be beneficial for patients and partners. However, these studies have been limited by reliance on in-person treatment delivery and have not targeted couples at high risk for poor outcomes. This study tests the efficacy of a Couples Communication Skills Training (CCST) intervention delivered via videoconference for couples reporting high levels of holding back from discussing cancer-related concerns, a variable associated with poorer psychological and relationship functioning. METHODS: This RCT is designed to evaluate the efficacy of CCST in improving patient and partner relationship functioning (primary outcome). Secondary outcomes include patient and partner psychological functioning and patient symptoms and health care use. We also examine the role of objective and self-reported communication behaviors as mediators of treatment effects. Two hundred thirty patients with advanced lung, gastrointestinal, genitourinary, and breast cancer and their partners will be randomized to CCST or an education control intervention. Participants in both conditions complete self-reported outcome measures at baseline, mid-treatment, post-treatment, and 3 months post-treatment. Objective measures of communication are derived from video-recorded couple conversations collected at baseline and post-treatment. An implementation-related process evaluation (assessing implementation outcomes and potential barriers to/facilitators of implementation) will be conducted to inform future efforts to implement CCST in real-world settings. DISCUSSION: This trial can yield important new knowledge about effective ways to improve patient and partner adjustment to advanced cancer. TRIAL REGISTRATION: This study trial is registered at clinicaltrials.gov (Trial # NCT04590885); registration date: October 19, 2020.


Assuntos
Comunicação , Neoplasias , Parceiros Sexuais , Feminino , Humanos , Masculino , Neoplasias/patologia , Ensaios Clínicos Controlados Aleatórios como Assunto , Parceiros Sexuais/psicologia , Comunicação por Videoconferência
11.
JAMA Intern Med ; 182(9): 943-952, 2022 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-35877092

RESUMO

Importance: Persistently poorly controlled type 2 diabetes (PPDM) is common and causes poor outcomes. Comprehensive telehealth interventions could help address PPDM, but effectiveness is uncertain, and barriers impede use in clinical practice. Objective: To address evidence gaps preventing use of comprehensive telehealth for PPDM by comparing a practical, comprehensive telehealth intervention to a simpler telehealth approach. Design, Setting, and Participants: This active-comparator, parallel-arm, randomized clinical trial was conducted in 2 Veterans Affairs health care systems. From December 2018 to January 2020, 1128 outpatients with PPDM were assessed for eligibility and 200 were randomized; PPDM was defined as maintenance of hemoglobin A1c (HbA1c) level of 8.5% or higher for 1 year or longer despite engagement with clinic-based primary care and/or diabetes specialty care. Data analyses were preformed between March 2021 and May 2022. Interventions: Each 12-month intervention was nurse-delivered and used only clinical staffing/resources. The comprehensive telehealth group (n = 101) received telemonitoring, self-management support, diet/activity support, medication management, and depression support. Patients assigned to the simpler intervention (n = 99) received telemonitoring and care coordination. Main Outcomes and Measures: Primary (HbA1c) and secondary outcomes (diabetes distress, diabetes self-care, self-efficacy, body mass index, depression symptoms) were analyzed over 12 months using intent-to-treat linear mixed longitudinal models. Sensitivity analyses with multiple imputation and inclusion of clinical data examined the impact of missing HbA1c measurements. Adverse events and intervention costs were examined. Results: The population (n = 200) had a mean (SD) age of 57.8 (8.2) years; 45 (22.5%) were women, 144 (72.0%) were of Black race, and 11 (5.5%) were of Hispanic/Latinx ethnicity. From baseline to 12 months, HbA1c change was -1.59% (10.17% to 8.58%) in the comprehensive telehealth group and -0.98% (10.17% to 9.19%) in the telemonitoring/care coordination group, for an estimated mean difference of -0.61% (95% CI, -1.12% to -0.11%; P = .02). Sensitivity analyses showed similar results. At 12 months, patients receiving comprehensive telehealth had significantly greater improvements in diabetes distress, diabetes self-care, and self-efficacy; no differences in body mass index or depression were seen. Adverse events were similar between groups. Comprehensive telehealth cost an additional $1519 per patient per year to deliver. Conclusions and Relevance: This randomized clinical trial found that compared with telemonitoring/care coordination, comprehensive telehealth improved multiple outcomes in patients with PPDM at a reasonable additional cost. This study supports consideration of comprehensive telehealth implementation for PPDM in systems with appropriate infrastructure and may enhance the value of telehealth during the COVID-19 pandemic and beyond. Trial Registration: ClinicalTrials.gov Identifier: NCT03520413.


Assuntos
COVID-19 , Diabetes Mellitus Tipo 2 , Telemedicina , Diabetes Mellitus Tipo 2/tratamento farmacológico , Feminino , Hemoglobinas Glicadas/análise , Humanos , Masculino , Pessoa de Meia-Idade , Pandemias , Telemedicina/métodos
12.
JAMA ; 328(2): 184-197, 2022 07 12.
Artigo em Inglês | MEDLINE | ID: mdl-35819420

RESUMO

Importance: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. Objective: To review evidence concerning spirituality in serious illness and health and to identify implications for patient care and health outcomes. Evidence Review: Searches of PubMed, PsycINFO, and Web of Science identified articles with evidence addressing spirituality in serious illness or health, published January 2000 to April 2022. Independent reviewers screened, summarized, and graded articles that met eligibility criteria. Eligible serious illness studies included 100 or more participants; were prospective cohort studies, cross-sectional descriptive studies, meta-analyses, or randomized clinical trials; and included validated spirituality measures. Eligible health outcome studies prospectively examined associations with spirituality as cohort studies, case-control studies, or meta-analyses with samples of at least 1000 or were randomized trials with samples of at least 100 and used validated spirituality measures. Applying Cochrane criteria, studies were graded as having low, moderate, serious, or critical risk of bias, and studies with serious and critical risk of bias were excluded. Multidisciplinary Delphi panels consisting of clinicians, public health personnel, researchers, health systems leaders, and medical ethicists qualitatively synthesized and assessed the evidence and offered implications for health care. Evidence-synthesis statements and implications were derived from panelists' qualitative input; panelists rated the former on a 9-point scale (from "inconclusive" to "strongest evidence") and ranked the latter by order of priority. Findings: Of 8946 articles identified, 371 articles met inclusion criteria for serious illness; of these, 76.9% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for serious illness: (1) incorporate spiritual care into care for patients with serious illness; (2) incorporate spiritual care education into training of interdisciplinary teams caring for persons with serious illness; and (3) include specialty practitioners of spiritual care in care of patients with serious illness. Of 6485 health outcomes articles, 215 met inclusion criteria; of these, 66.0% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for health outcomes: (1) incorporate patient-centered and evidence-based approaches regarding associations of spiritual community with improved patient and population health outcomes; (2) increase awareness among health professionals of evidence for protective health associations of spiritual community; and (3) recognize spirituality as a social factor associated with health in research, community assessments, and program implementation. Conclusions and Relevance: This systematic review, analysis, and process, based on highest-quality evidence available and expert consensus, provided suggested implications for addressing spirituality in serious illness and health outcomes as part of person-centered, value-sensitive care.


Assuntos
Doença , Saúde , Terapias Espirituais , Espiritualidade , Estudos Transversais , Pessoal de Saúde , Humanos , Estudos Prospectivos
14.
JACC Heart Fail ; 10(4): 217-226, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35361439

RESUMO

With advances in heart failure (HF) treatment, patients are living longer, putting further emphasis on quality of life (QOL) and the role of palliative care principles in their care. Spirituality is a core domain of palliative care, best defined as a dynamic, multidimensional aspect of oneself for which 1 dimension is that of finding meaning and purpose. There are substantial data describing the role of spirituality in patients with cancer but a relative paucity of studies in HF. In this review article, we explore the current knowledge of spirituality in patients with HF; describe associations among spirituality, QOL, and HF outcomes; and propose clinical applications and future directions regarding spiritual care in this population. Studies suggest that spirituality serves as a potential target for palliative care interventions to improve QOL, caregiver support, and patient outcomes including rehospitalization and mortality. We suggest the development of a spirituality-screening tool, similar to the Patient Health Questionnaire-2 used to screen for depression, to identify patients with HF at risk for spiritual distress. Novel tools are soon to be validated by members of our group. Given spirituality in HF remains less well studied compared with other patient populations, further controlled trials and uniform measures of spirituality are needed to understand its impact better.


Assuntos
Insuficiência Cardíaca , Terapias Espirituais , Insuficiência Cardíaca/terapia , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Espiritualidade
15.
J Am Geriatr Soc ; 70(6): 1785-1791, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35225356

RESUMO

BACKGROUND: The quality of life of care partners and care recipients may be improved by programs that address unmet needs. The aim of this qualitative study was to identify care partners' social and practical needs as they care for Veterans (65 yo+) with serious illness. METHODS: Semi-structured interviews with Veterans with serious illness and care partners of Veterans with serious illness. Interview question domains examined through care partner and Veteran perspectives included: types of support/services currently used, still needed, and anticipated as well as barriers to obtaining those supports/services. Qualitative analyses used an inductive descriptive content approach. RESULTS: Seventeen care partners and 11 Veterans participated. Three main themes emerged from the data: (I) care partners' and Veterans' identified barriers to support (e.g., technology, rurality, awareness of services); (II) care partners' and Veterans' understanding of available supports and services (e.g., misunderstandings regarding VA role and services, heavy reliance on VA, identified sources of support); and (III) care partners' understanding of their caregiving roles (e.g., by tasks and self-identification). CONCLUSION: Results indicate that care partners experience barriers to supporting seriously ill Veterans including awareness, information, and access obstacles that can be addressed to improve access and utilization of available services and supports.


Assuntos
Veteranos , Cuidadores , Acessibilidade aos Serviços de Saúde , Humanos , Pesquisa Qualitativa , Qualidade de Vida , Estados Unidos , United States Department of Veterans Affairs
16.
J Pain Symptom Manage ; 63(5): 673-679, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35032621

RESUMO

CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate clinician experiences with Muslim patients in the United States, and none address the unique dynamics of pediatric clinician experiences with Muslim patients and their families in the EOL setting. OBJECTIVES: The purpose of this study is to perform a thematic analysis of clinician experiences with pediatric Muslim patients and families at the end of life. METHODS: This was a qualitative study of pediatric clinicians at Duke University Medical Center in the Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit from August 2018 to February 2019. We conducted semistructured interviews with nurses, attending physicians, and social workers to assess participants' experiences caring for Muslim patients and families. We analyzed interview transcripts using descriptive content analysis with NVivo10. RESULTS: We interviewed 16 clinicians at Duke University Medical Center Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit. Five physicians, five social workers, and six nurses were interviewed. The majority of providers were female, Caucasian, and Christian in an institution where Muslim patients are a significant minority. Several themes emerged highlighting language barriers, difficulty engaging with Muslim families, variations in approach to care and communication, discomfort with gender roles, moral distress with unrelatable decision-making, and external pressures on patient decision-making. CONCLUSION: A thematic analysis of pediatric clinicians at a quaternary care center in the Southern United States yielded several prominent themes. Many clinicians recognize they likely provide disparate care to minority patients for a variety of reasons encompassing the above barriers. As we work to care for an increasingly diverse patient population, more research into barriers to care and effective educational methods is needed.


Assuntos
Islamismo , Assistência Terminal , Criança , Morte , Feminino , Humanos , Unidades de Terapia Intensiva Pediátrica , Masculino , Cuidados Paliativos , Pesquisa Qualitativa , Estados Unidos
17.
J Gen Intern Med ; 37(12): 3080-3088, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-34981358

RESUMO

BACKGROUND: Rural patients with type 2 diabetes (T2D) may experience poor glycemic control due to limited access to T2D specialty care and self-management support. Telehealth can facilitate delivery of comprehensive T2D care to rural patients, but implementation in clinical practice is challenging. OBJECTIVE: To examine the implementation of Advanced Comprehensive Diabetes Care (ACDC), an evidence-based, comprehensive telehealth intervention for clinic-refractory, uncontrolled T2D. ACDC leverages existing Veterans Health Administration (VHA) Home Telehealth (HT) infrastructure, making delivery practical in rural areas. DESIGN: Mixed-methods implementation study. PARTICIPANTS: 230 patients with clinic-refractory, uncontrolled T2D. INTERVENTION: ACDC bundles telemonitoring, self-management support, and specialist-guided medication management, and is delivered over 6 months using existing VHA HT clinical staffing/equipment. Patients may continue in a maintenance protocol after the initial 6-month intervention period. MAIN MEASURES: Implementation was evaluated using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. The primary effectiveness outcome was hemoglobin A1c (HbA1c). KEY RESULTS: From 2017 to 2020, ACDC was delivered to 230 patients across seven geographically diverse VHA sites; on average, patients were 59 years of age, 95% male, 80% white, and 14% Hispanic/Latinx. Patients completed an average of 10.1 of 12 scheduled encounters during the 6-month intervention period. Model-estimated mean baseline HbA1c was 9.56% and improved to 8.14% at 6 months (- 1.43%, 95% CI: - 1.64, - 1.21; P < .001). Benefits persisted at 12 (- 1.26%, 95% CI: - 1.48, - 1.05; P < .001) and 18 months (- 1.08%, 95% CI - 1.35, - 0.81; P < .001). Patients reported increased engagement in self-management and awareness of glycemic control, while clinicians and HT nurses reported a moderate workload increase. As of this submission, some sites have maintained delivery of ACDC for up to 4 years. CONCLUSIONS: When strategically designed to leverage existing infrastructure, comprehensive telehealth interventions can be implemented successfully, even in rural areas. ACDC produced sustained improvements in glycemic control in a previously refractory population.


Assuntos
Diabetes Mellitus Tipo 2 , Telemedicina , Instituições de Assistência Ambulatorial , Diabetes Mellitus Tipo 2/tratamento farmacológico , Feminino , Hemoglobinas Glicadas , Humanos , Masculino , População Rural , Telemedicina/métodos
18.
Patient Educ Couns ; 105(4): 982-986, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34384640

RESUMO

OBJECTIVES: When patients make cancer treatment decisions, they consider the needs and preferences of family caregivers and clinicians. We examined how much all three triad members agreed about goals of treatment and caregivers' influence on decision-making. METHODS: We surveyed 70 triads of patients, caregivers, and oncologists who had recently made an advanced cancer treatment decision. We assessed each triad member's perception of the goal of treatment and the caregiver's influence on the decision. Participants also completed scales related to decisional conflict, satisfaction, and regret. RESULTS: In only 28/70 triads (40%), all three agreed on the goal of treatment with the most common goal being to live longer (n = 22). Whereas patients and caregivers tended to think the goal was to cure or live longer, oncologists were less optimistic. In only 22 triads (31%), all three agreed on how much influence the caregiver had on decision-making. Oncologists tended to underestimate caregiver influence. Patients and caregivers had low decisional conflict (M=15.40, SD=4.51; M=17.09, SD=6.34, respectively). CONCLUSIONS: Advanced cancer treatment decision-making occurs amid incomplete understanding among patients, caregivers, and oncologists. PRACTICE IMPLICATIONS: Confirming agreement about goals of care and influence on treatment decision-making may increase the likelihood of goal-concordant care throughout the illness trajectory.


Assuntos
Neoplasias , Oncologistas , Cuidadores , Tomada de Decisões , Humanos , Motivação , Neoplasias/terapia
19.
J Health Care Chaplain ; 28(3): 365-377, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33909546

RESUMO

Addressing spiritual needs of patients in healthcare settings improves patient experiences and clinical outcomes; however, non-chaplain providers typically assess spiritual needs differently (quantitative psychometric) than healthcare chaplains (long form narrative) and thus there is little shared language or cross-disciplinary evaluation frameworks across disciplines. This discrepancy impedes the provision of both team-based and patient-centered care. This paper used scoping review methodology to illustrate the overlap between narrative and psychometric assessment tools, comparing four narrative tools against eight psychometric tools. The SpNQ-120 and Brief RCOPE demonstrated consistent domain coverage across the four chaplain narrative tools. This work provides preliminary resources to aid clinicians and researchers in choosing an appropriate tool. Additionally, for those who do not work closely with chaplains, it provides a sense of what domains chaplains prioritize, from their professional and lived experience, in assessing the spiritual life of the patient. This improves interdisciplinary communication, and therefore, patient care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Clero , Humanos , Narração , Psicometria , Espiritualidade
20.
J Gen Intern Med ; 37(3): 539-547, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34100238

RESUMO

BACKGROUND: Coaching has been shown to improve resident well-being; however, not all benefit equally. OBJECTIVE: Assess predictors of changes in resident physician well-being and burnout in a multisite implementation of a Professional Development Coaching Program. DESIGN: Pre- and post-implementation surveys administered to participant cohorts at implementation sites in their intern year. Effect size was calculated comparing pre- and post-intervention paired data. PARTICIPANTS: In total, 272 residents in their intern year at five internal medicine residency programs (Boston Medical Center, University Hospitals Cleveland Medical Center, Duke University, Emory University, Massachusetts General Hospital). Analyses included 129 residents with paired data. INTERVENTIONS: Interns were paired with a faculty coach trained in positive psychology and coaching skills and asked to meet quarterly with coaches. MAIN MEASURES: Primary outcomes included Maslach Burnout Inventory depersonalization (DP) and emotional exhaustion (EE) subscales, and the PERMA well-being scale. Key predictors included site, demographics, intolerance of uncertainty, hardiness-resilience, gratitude, and coping. Program moderators included were reflection, goal setting, and feedback. KEY RESULTS: Well-being (PERMA) changed from baseline to follow-up in all participants; females showed a decline and males an increase (-1.41 vs. .83, p = 0.04). Self-reflection was associated with positive change in PERMA (mean positive change 1.93, p = 0.009). Burnout (EE) declined in non-Hispanic white residents vs. Black/Asian/Hispanic/other residents (-1.86, p = 0.021). Burnout improved with increased goal setting. CONCLUSION: Coaching programs should consider tailored approaches to support residents whose well-being is impacted by gender and/or race, and who have higher intolerance of uncertainty and lower resilience at baseline. Coaching skills of goal setting and reflection may positively affect interns and teach coping skills.


Assuntos
Esgotamento Profissional , Internato e Residência , Tutoria , Esgotamento Profissional/prevenção & controle , Esgotamento Profissional/psicologia , Feminino , Humanos , Masculino , Massachusetts , Inquéritos e Questionários
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