Advance Care Planning for Spanish-Language Speakers: Patient, Family, and Interpreter Perspectives.
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ABSTRACT:
SUBMITTER: Puerto G
PROVIDER: S-EPMC10440849 | biostudies-literature | 2023 Aug
REPOSITORIES: biostudies-literature
Publications
Advance Care Planning for Spanish-Language Speakers: Patient, Family, and Interpreter Perspectives.
Puerto Geraldine G Chiriboga Germán G DeSanto-Madeya Susan S Duodu Vennesa V Cruz-Oliver Dulce M DM Tjia Jennifer J
Journal of applied gerontology : the official journal of the Southern Gerontological Society 20230216 8
Language access barriers for individuals with limited-English proficiency are a challenge to advance care planning (ACP). Whether Spanish-language translations of ACP resources are broadly acceptable by US Spanish-language speakers from diverse countries is unclear. This ethnographic qualitative study ascertained challenges and facilitators to ACP with respect to Spanish-language translation of ACP resources. We conducted focus groups with a heterogeneous sample of 29 Spanish-speaking persons wh ...[more]
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Project description:BackgroundPatient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits.ObjectiveTo describe patient perspectives on use of patient portal-based ACP tools.DesignInterviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR).SettingRegional health-care system with a common EHR.MeasurementsSemistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach.ResultsFrom 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care.ConclusionsPatients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.
| S-EPMC6602833 | biostudies-literature
Project description:ObjectiveAdvance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care.MethodsThis is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes.ResultsFour themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP.ConclusionsACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.
| S-EPMC6556088 | biostudies-literature
Project description:BackgroundOlder patients with advanced CKD are at high risk for serious complications and death, yet few discuss advance care planning (ACP) with their kidney clinicians. Examining barriers and facilitators to ACP among such patients might help identify patient-centered opportunities for improvement.MethodsIn semistructured interviews in March through August 2019 with purposively sampled patients (aged ≥70 years, CKD stages 4-5, nondialysis), care partners, and clinicians at clinics in across the United States, participants described discussions, factors contributing to ACP completion or avoidance, and perceived value of ACP. We used thematic analysis to analyze data.ResultsWe conducted 68 semistructured interviews with 23 patients, 19 care partners, and 26 clinicians. Only seven of 26 (27%) clinicians routinely discussed ACP. About half of the patients had documented ACP, mostly outside the health care system. We found divergent ACP definitions and perspectives; kidney clinicians largely defined ACP as completion of formal documentation, whereas patients viewed it more holistically, wanting discussions about goals, prognosis, and disease trajectory. Clinicians avoided ACP with patients from minority groups, perceiving cultural or religious barriers. Four themes and subthemes informing variation in decisions to discuss ACP and approaches emerged: (1) role ambiguity and responsibility for ACP, (2) questioning the value of ACP, (3) confronting institutional barriers (time, training, reimbursement, and the electronic medical record, EMR), and (4) consequences of avoiding ACP (disparities in ACP access and overconfidence that patients' wishes are known).ConclusionsPatients, care partners, and clinicians hold discordant views about the responsibility for discussing ACP and the scope for it. This presents critical barriers to the process, leaving ACP insufficiently discussed with older adults with advanced CKD.
| S-EPMC8259659 | biostudies-literature
Project description:Highlights • Gynecologic oncology patients prefer advance care planning (ACP) communication outpatient with their gynecologic oncologist.• A quality improvement intervention offering advance care planning resources increased ACP discussions.• A quality improvement intervention offering advance care planning resources improved ACP document creation proficiency. Objectives Assess and improve advance care planning (ACP) awareness and uptake among gynecologic oncology patients. Methods Using a quality improvement Plan-Do-Check-Act framework, we completed a single institution needs assessment and intervention. The needs assessment was a 26-question survey assessing baseline ACP knowledge and preferences of gynecologic oncology patients. We used this survey to implement an outpatient intervention in which patients were offered ACP resources (pamphlet, discussion with their gynecologic oncologist, and/or social work referral). We conducted a post-intervention survey among patients who had and had not received ACP resource(s) to assess whether our intervention increased ACP knowledge, discussions, or uptake. Results Among 106 patients surveyed in the needs assessment, 33 % had ACP documents, 26 % had discussed ACP with a physician, and 82 % thought discussing ACP was important. The majority preferred these conversations in the outpatient setting (52 %) with their gynecologic oncologist (80 %) instead of nurses or trainees. In the intervention, 526 patients were offered ACP resources. Compared to women who did not receive resources (n = 324), patients who received ACP resource(s) (n = 202) were more likely to have ACP discussions with their gynecologic oncologist (38 % vs 68 %, P = 0.001) and had greater proficiency regarding how to create ACP documents (median score 5/10 vs 8/10, P = 0.048), although they were no more likely to have ACP documented in their electronic medical record (27 % vs 9 %, p = 0.08). Conclusions ACP uptake among gynecologic oncology patients is low, but ACP discussions with an oncologist during outpatient visits are important to patients and improve their knowledge regarding completing ACP documents.
| S-EPMC9399146 | biostudies-literature
Project description:ObjectivesTo synthesize family members' experiences and perspectives on advance care planning (ACP) in nursing homes.MethodsThe thematic synthesis is reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement. A systematic search of the APA PsycINFO, CINAHL Plus, Embase and PubMed databases is initially conducted in October 2022, and the search is updated in January 2024. Qualitative studies that presented family members' quotes regarding advance care planning in nursing homes published in a peer-reviewed journal were included. Screening and data extraction were independently performed by two reviewers, and any discrepancies were resolved with the assistance of the third author.ResultsA total of 1027 articles were identified, and 23 articles were included in the full-text review. Subsequently, a total of 17 studies were ultimately included, and 127 quotes were extracted and analysed. The main findings were categorized into three themes: (1) invitation to conversation and care, (2) the resident's surrogate and (3) nurses. Considering the importance of family members' roles in ACP conversations in a nursing home setting, this study provided an in-depth understanding of family members' perceptions and experiences of ACP by synthesizing qualitative studies. Family members' lack of knowledge regarding the timing and pursuits of ACP was also identified.ConclusionThe findings of this study provide synthesized qualitative evidence of family members' perspectives on ACP, which can inform care and treatment in nursing homes. As this study synthesizes the experiences of family members in nursing homes about ACP, the findings of this study contribute to reflecting family members' experiences and providing evidence for nursing home healthcare professionals.Patient or public contributionThis study reports the experiences of family members in ACP nursing homes. The findings of this study contribute to reflecting family members' experiences and building evidence for nursing home healthcare professionals.
| S-EPMC11810491 | biostudies-literature
Project description:Background and aimsEnd-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.
| S-EPMC9215331 | biostudies-literature
Project description:BackgroundAdvance care planning (ACP) and goals of care discussions are important instruments that enable respect for patient autonomy, especially in patients with a life-threatening disease, such as cancer. Despite their well-established benefits, ACP and goals of care discussions are still not frequently performed in clinical oncology practice. Understanding the barriers to this topic is the first step toward developing future interventions that are more likely to improve professional practice and patient satisfaction with care.AimTo explore Brazilian oncologists' barriers to discuss goals of care and advance care planning.MethodsA cross-sectional study was developed to identify Brazilian oncologists' barriers to discussing goals of care and ACP. The Decide-Oncology questionnaire was used to identify the importance of these barriers according to oncologists' perceptions. Participants were asked to rank the importance of various barriers to discussing goals of care, ranging from 1 (extremely unimportant) to 7 (extremely important). A quantitative analysis using descriptive statistics was used, including median and interquartile intervals and a qualitative analysis based on Bardin content analysis of the two open questions.ResultsSixty-six oncologists participated in this study. Most of them perceived the patient and family's related barriers as the most important, such as patients' difficulty in understanding their diagnosis and accepting their prognosis. Physician and external related factors, such as lack of training and lack of time for this conversation, were also described as important barriers. Participants with formal training regarding goals of care communication and with experience in palliative care perceived the lack of patients' advanced directives as a significant barrier and manifested more willingness to participate in decision-making about goals of care. The lack of access and of support for referral to palliative care was also considered a significant barrier for ACP and goals of care discussion.ConclusionThe identification of barriers that limit the discussion of ACP and early palliative care referrals can certainly help to prioritise the next steps for future studies aimed at improving ACP and helping clinicians to better support patients through shared decision-making based on the patient's values and experiences.
| S-EPMC9502602 | biostudies-literature
Project description:BACKGROUND:Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined. METHODS:We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions. RESULTS:The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions. CONCLUSION:Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.
| S-EPMC6561330 | biostudies-literature
Project description:Background/objectivesAdvance care planning (ACP) rates are low in diverse, vulnerable older adults, yet little is known about the unique barriers they face and how these barriers impact ACP documentation rates.DesignValidated questionnaires listing patient, family/friend, and clinician/system-level ACP barriers and an open-ended question on ACP barriers.SettingTwo San Francisco public/Department of Veterans Affairs hospitals.ParticipantsOne thousand two hundred and forty-one English and Spanish-speaking patients, aged 55 and older, with two or more chronic conditions.MeasurementsThe open-ended question on ACP barriers was analyzed using content analysis. We conducted chart review for prior ACP documentation. We used chi-square/Wilcoxon rank-sum tests and logistic regression to assess associations between ACP barriers and demographic characteristics/ACP documentation.ResultsParticipant mean age was 65 ± 7.4 years; they were 74% from racial/ethnic minority groups, 36% Spanish-speaking, and 36% with limited health literacy. A total of 26 barriers were identified (15 patient, 4 family/friend, 7 clinician/system-level), and 91% reported at least one ACP barrier (mean: 5.6 ± 4.0). The most common barriers were: (patient-level) discomfort thinking about ACP (60%), wanting to leave health decisions to "God" (44%); (family/friend-level) not wanting to burden friends/family (33%), assuming friends/family already knew their preferences (31%); (clinician/system-level) assuming doctors already knew their preferences (41%), and mistrust (37%). Compared with those with no barriers, participants with at least one reported barrier were more likely to be from a racial/ethnic minority group (76% vs 53%), Spanish-speaking (39% vs 6%), with fair-to-poor health (48% vs 34%), and limited health literacy (39% vs 9%) (p < 0.001 for all). Participants who reported barriers were less likely to have ACP documentation (adjusted odds ratio = 0.64, 95% confidence interval [0.42, 0.98]).ConclusionEnglish- and Spanish-speaking older adults reported 26 unique barriers to ACP, with higher barriers among vulnerable populations, and barriers were associated with lower ACP documentation. Barriers must be considered when developing customized ACP interventions for diverse older adults.
| S-EPMC8373705 | biostudies-literature
Project description:BackgroundPrimary care clinics need sustainable, population-based approaches to engage patients in advance care planning (ACP). Patient portal-based ACP tools may provide an option for patient engagement.ObjectiveTo increase ACP outcomes by engaging older adults through portal-based ACP tools, including an electronic Medical Durable Power of Attorney (MDPOA) form.MethodsGeriatric clinic pilot of a multi-modal population-based outreach strategy for portal-based ACP tools. Outreach was to patients (n = 105) who were 65 years and older with an active portal account, no cognitive impairment, and no MDPOA on file. Patients received a motivational message via the portal and, if not read within 2 weeks, a mailed postcard about the portal-based ACP tools. Primary outcome was composite of any ACP action at 1-year including 1) new advance directive (AD) in the electronic health record, 2) use of portal-based ACP tools, or 3) documented ACP discussion with a provider.ResultsSixty-five older adults read the electronic message at 12 months. Seventeen (16%) engaged in at least 1 ACP action. Fourteen of 17 engaged by adding an AD to their record. More patients completed an AD on article or brought a previously completed AD to clinic, compared with choosing to complete an electronic MDPOA via the portal.ConclusionsBrief motivational messages about ACP via a patient portal is feasible and may increase ACP outcomes for older adults in primary care. Future studies should evaluate population-based portal outreach strategies in combination with team-based workflows to enhance patient engagement in ACP.
| S-EPMC7039311 | biostudies-literature