Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.
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ABSTRACT: Purpose
Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings.Methods
The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff toward shared decision making. Field notes and transcripts of hospice interdisciplinary team meetings that included family caregivers as participants were coded to identify 9 theory-driven shared decision making elements. The results were mixed in a matrix analysis comparing attitudes with practice. Three transcripts demonstrate the variance in the shared decision making process between hospice teams.Results
Hospice staff reported overall positive views on shared decision making; however, these views differed depending on participants' age and position. The extent to which staff views were aligned with the observed use of shared decision making elements in hospice interdisciplinary team meetings varied.Conclusion
Policy and practice conditions can make shared decision making challenging during hospice interdisciplinary team meetings despite support for the process by staff.Trial registration
This study is a sub-study of a parent study registered with clinicaltrials.gov (NCT02929108).
SUBMITTER: Oliver DP
PROVIDER: S-EPMC9067598 | biostudies-literature | 2022 Mar
REPOSITORIES: biostudies-literature
Publications
Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice.
Oliver Debra Parker DP Washington Karla T KT Pitzer Kyle K Popejoy Lori L White Patrick P Wallace Audrey S AS Grimsley Amy A Demiris George G
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20211125 3
<h4>Purpose</h4>Shared decision making has been a long-standing practice in oncology and, despite a lack of research on the subject, is a central part of the philosophical foundation of hospice. This mixed methods study examined the perceptions of staff regarding shared decision making and their use of shared decision elements in hospice interdisciplinary team meetings.<h4>Methods</h4>The revised Leeds Attitude to Concordance scale (LatConII) was used to measure the attitudes of hospice staff to ...[more]
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Project description:BackgroundShared decision-making (SDM) has the potential to improve hypertension care quality and equity. However, research lacks diverse representation and evidence about how race and ethnicity affect SDM. Therefore, this study aims to explore SDM in the context of hypertension management.Methods and resultsExplanatory sequential mixed-methods design was used. Quantitative data were sourced at baseline and 12-month follow up from RICH LIFE (Reducing Inequities in Care of Hypertension: Lifestyle Improvement for Everyone) participants (n=1212) with hypertension. Qualitative data were collected from semistructured individual interviews, at 12-month follow-up, with participants (n=36) selected based on their SDM scores and blood pressure outcome. Patients were cross- categorized based on high or low SDM scores and systolic blood pressure reduction of ≥10 or <10 mm Hg. Multinomial logistic regression analysis showed that predictors of SDM scores and blood pressure outcome were race and ethnicity (relative risk ratio [RRR], 1.64; P=0.029), age (RRR, 1.03; P=0.002), educational level (RRR, 1.87; P=0.016), patient activation (RRR, 0.98; P<0.001; RRR, 0.99; P=0.039), and hypertension knowledge (RRR, 2.2; P<0.001; and RRR, 1.57; P=0.045). Qualitative and mixed-methods findings highlight that provider-patient communication and relationship influenced SDM, being emphasized both as facilitators and barriers. Other facilitators were patients' understanding of hypertension; clinicians' interest in the patient, and clinicians' personality and attitudes; and barriers included perceived lack of compassion, relationship hierarchy, and time constraints.ConclusionsParticipants with different SDM scores and blood pressure outcomes varied in determinants of decision and descriptions of contextual factors influencing SDM. Results provide actionable information, are novel, and expand our understanding of factors influencing SDM in hypertension.
| S-EPMC11292762 | biostudies-literature
Project description:BackgroundMuch of the existing research on shared decision-making in hospice and palliative care focuses on the provider-patient dyad; little is known about shared decision-making that is inclusive of family members of patients with advanced disease.AimWe sought to describe shared decision-making as it occurred in hospice interdisciplinary team meetings that included family caregivers as participants using video-conferencing technology.DesignWe conducted a multimethod study in which we used content and thematic analysis techniques to analyze video-recordings of hospice interdisciplinary team meetings (n = 100), individual interviews of family caregivers (n = 73) and hospice staff members (n = 78), and research field notes.Setting/participantsParticipants in the original studies from which data for this analysis were drawn were hospice family caregivers and staff members employed by one of five different community-based hospice agencies located in the Midwestern United States.ResultsShared decision-making occurred infrequently in hospice interdisciplinary team meetings that included family caregivers. Barriers to shared decision-making included time constraints, communication skill deficits, unaddressed emotional needs, staff absences, and unclear role expectations. The hospice philosophy of care, current trends in healthcare delivery, the interdisciplinary nature of hospice teams, and the designation of a team leader/facilitator supported shared decision-making.ConclusionThe involvement of family caregivers in hospice interdisciplinary team meetings using video-conferencing technology creates a useful platform for shared decision-making; however, steps must be taken to transform family caregivers from meeting attendees to shared decision-makers.
| S-EPMC4753099 | biostudies-literature
Project description:IntroductionDecision analysis is a quantitative approach to decision making that could bridge the gap between decisions based solely on evidence and the unique values and preferences of individual patients, a feature especially important when existing evidence cannot support clear recommendations and there is a close balance between harms and benefits for the treatments options under consideration. Low molecular weight heparin (LMWH) for the prevention of venous thromboembolism (VTE) during pregnancy represents one such situation. The objective of this paper is to describe the rationale and methodology of a pilot study that will explore the application of decision analysis to a shared decision-making process involving prophylactic LMWH for pregnant women or those considering pregnancy who have experienced a VTE.Methods and analysisWe will conduct an international, mixed methods, explanatory, sequential study, including quantitative data collection and analysis followed by qualitative data collection and analysis. In step I, we will ask women who are pregnant or considering pregnancy and have experienced VTE to participate in a shared decision-making intervention for prophylactic LMWH. The intervention consists of three components: a direct choice exercise, a values elicitation exercise and a personalised decision analysis. After administration of the intervention, we will ask women to make a treatment decision and measure decisional conflict, self-efficacy and satisfaction. In step II, which follows the analysis of quantitative data, we will use the results to inform the qualitative interview. Step III will be a qualitative descriptive study that explores participants' experiences and perceptions of the intervention. In step IV, we will integrate findings from the qualitative and quantitative analyses to obtain meta-inferences.Ethics and disseminationSite-specific ethics boards have approved the study. All participants will provide informed consent. The research team will take an integrated approach to knowledge translation.
| S-EPMC7986891 | biostudies-literature
Project description:BackgroundHealth care decisions are a critical determinant in the evolution of chronic illness. In shared decision-making (SDM), patients and clinicians work collaboratively to reach evidence-based health decisions that align with individual circumstances, values, and preferences. This personalized approach to clinical care likely has substantial benefits in the oversight of degenerative cervical myelopathy (DCM), a type of nontraumatic spinal cord injury. Its chronicity, heterogeneous clinical presentation, complex management, and variable disease course engenders an imperative for a patient-centric approach that accounts for each patient's unique needs and priorities. Inadequate patient knowledge about the condition and an incomplete understanding of the critical decision points that arise during the course of care currently hinder the fruitful participation of health care providers and patients in SDM. This study protocol presents the rationale for deploying SDM for DCM and delineates the groundwork required to achieve this.ObjectiveThe study's primary outcome is the development of a comprehensive checklist to be implemented upon diagnosis that provides patients with essential information necessary to support their informed decision-making. This is known as a core information set (CIS). The secondary outcome is the creation of a detailed process map that provides a diagrammatic representation of the global care workflows and cognitive processes involved in DCM care. Characterizing the critical decision points along a patient's journey will allow for an effective exploration of SDM tools for routine clinical practice to enhance patient-centered care and improve clinical outcomes.MethodsBoth CISs and process maps are coproduced iteratively through a collaborative process involving the input and consensus of key stakeholders. This will be facilitated by Myelopathy.org, a global DCM charity, through its Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy community. To develop the CIS, a 3-round, web-based Delphi process will be used, starting with a baseline list of information items derived from a recent scoping review of educational materials in DCM, patient interviews, and a qualitative survey of professionals. A priori criteria for achieving consensus are specified. The process map will be developed iteratively using semistructured interviews with patients and professionals and validated by key stakeholders.ResultsRecruitment for the Delphi consensus study began in April 2023. The pilot-testing of process map interview participants started simultaneously, with the formulation of an initial baseline map underway.ConclusionsThis protocol marks the first attempt to provide a starting point for investigating SDM in DCM. The primary work centers on developing an educational tool for use in diagnosis to enable enhanced onward decision-making. The wider objective is to aid stakeholders in developing SDM tools by identifying critical decision junctures in DCM care. Through these approaches, we aim to provide an exhaustive launchpad for formulating SDM tools in the wider DCM community.International registered report identifier (irrid)DERR1-10.2196/46809.
| S-EPMC10594151 | biostudies-literature
Project description:BackgroundEvidence of the ethical appropriateness and clinical benefits of shared decision-making (SDM) are accumulating. This study aimed to not only identify physicians' perspectives on SDM, and practices related to end-of-life care in particular, but also to gauge the effect of SDM education on physicians in Korea.MethodsA 14-item questionnaire survey using a modified Delphi process was delivered to nephrologists and internal medicine trainees at 17 university hospitals.ResultsA total of 309 physicians completed the survey. Although respondents reported that 69.9% of their practical decisions were made using SDM, 59.9% reported that it is not being applied appropriately. Only 12.3% of respondents had received education on SDM as part of their training. The main obstacles to appropriate SDM were identified as lack of time (46.0%), educational materials and tools (29.4%), and education on SDM (24.3%). Although only a few respondents had received training on SDM, the proportion of those who thought they were using SDM appropriately in actual practice was high; the proportion of those who chose lack of time and education as factors that hindered the proper application of SDM was low.ConclusionThe majority of respondents believed that SDM was not being implemented properly in Korea, despite its use in actual practice. To improve the effectiveness of SDM in the Korean medical system, appropriate training programs and supplemental policies that guarantee sufficient application time are required.
| S-EPMC8995478 | biostudies-literature
Project description:BackgroundShared decision making (SDM) and decision aids (DAs) increase patients' involvement in health care decisions and enhance satisfaction with their choices. Studies of SDM and DAs have primarily occurred in academic centers and large health systems, but most primary care is delivered in smaller practices, and over 20% of Americans live in rural areas, where poverty, disease prevalence, and limited access to care may increase the need for SDM and DAs.ObjectiveTo explore perceptions and practices of rural primary care clinicians regarding SDM and DAs.DesignCross-sectional survey. Setting and Participants Primary care clinicians affiliated with the Oregon Rural Practice-based Research Network.ResultsSurveys were returned by 181 of 231 eligible participants (78%); 174 could be analyzed. Two-thirds of participants were physicians, 84% practiced family medicine, and 55% were male. Sixty-five percent of respondents were unfamiliar with the term shared decision making, but following definition, 97% reported that they found the approach useful for conditions with multiple treatment options. Over 90% of clinicians perceived helping patients make decisions regarding chronic pain and health behavior change as moderate/hard in difficulty. Although 69% of respondents preferred that patients play an equal role in making decisions, they estimate that this happens only 35% of the time. Time was reported as the largest barrier to engaging in SDM (63%). Respondents were receptive to using DAs to facilitate SDM in print- (95%) or web-based formats (72%), and topic preference varied by clinician specialty and decision difficulty.ConclusionsRural clinicians recognized the value of SDM and were receptive to using DAs in multiple formats. Integration of DAs to facilitate SDM in routine patient care may require addressing practice operation and reimbursement.
| S-EPMC3665512 | biostudies-literature
Project description:ObjectivesTo analyze current practices in shared decision-making (SDM) in primary care and perform a needs assessment for the role of information technology (IT) interventions.Materials and methodsA mixed-methods study was conducted in three phases: (1) ethnographic observation of clinical encounters, (2) patient interviews, and (3) physician interviews. SDM was measured using the validated OPTION scale. Semistructured interviews followed an interview guide (developed by our multidisciplinary team) informed by the Traditional Decision Conflict Scale and Shared Decision Making Questionnaire. Field notes were independently coded and analyzed by two reviewers in Dedoose.ResultsTwenty-four patient encounters were observed in 3 diverse practices with an average OPTION score of 57.2 (0-100 scale; 95% confidence interval [CI], 51.8-62.6). Twenty-two patient and 8 physician interviews were conducted until thematic saturation was achieved. Cohen's kappa, measuring coder agreement, was 0.42. Patient domains were: establishing trust, influence of others, flexibility, frustrations, values, and preferences. Physician domains included frustrations, technology (concerns, existing use, and desires), and decision making (current methods used, challenges, and patients' understanding).DiscussionGiven low SDM observed, multiple opportunities for technology to enhance SDM exist based on specific OPTION items that received lower scores, including: (1) checking the patient's preferred information format, (2) asking the patient's preferred level of involvement in decision making, and (3) providing an opportunity for deferring a decision. Based on data from interviews, patients and physicians value information exchange and are open to technologies that enhance communication of care options.ConclusionFuture primary care IT platforms should prioritize the 3 quantitative gaps identified to improve physician-patient communication and relationships. Additionally, SDM tools should seek to standardize common workflow steps across decisions and focus on barriers to increasing adoption of effective SDM tools into routine primary care.
| S-EPMC6993997 | biostudies-literature
Project description:BackgroundDecisions about prenatal screening to assess the risk of genetic conditions such as Down syndrome are complex and should be well informed. Moreover, the number of available tests is increasing. Shared decision making (SDM) about testing could be facilitated by decision aids powered by mobile technology.ObjectiveIn this mixed methods study, we aim to (1) assess women's needs and preferences regarding using an app for considering prenatal screening, (2) develop a decision model using the analytical hierarchy process, and (3) develop an analytical app and assess its usability and usefulness.MethodsIn phase 1, we will assess the needs of 90 pregnant women and their partners (if available). We will identify eligible participants in 3 clinical sites (a midwife-led birthing center, a family practice clinic, and an obstetrician-led hospital-based clinic) in Quebec City and Montreal, Canada. Using semistructured interviews, we will assess participants' attitudes toward mobile apps for decision making about health, their current use of apps for health purposes, and their expectations of an app for prenatal testing decisions. Self-administered questionnaires will collect sociodemographic information, intentions to use an app for prenatal testing, and perceived importance of decision criteria. Qualitative data will be transcribed verbatim and analyzed thematically. Quantitative data will be analyzed using descriptive statistics and the analytic hierarchy process (AHP) method. In phase 2, we will develop a decision model using the AHP whereby users can assign relative importance to criteria when deciding between options. We will validate the model with potential users and a multidisciplinary team of patients, family physicians, primary care researchers, decision sciences experts, engineers, and experts in SDM, genetics, and bioethics. In phase 3, we will develop a prototype of the app using the results of the first 2 phases, pilot test its usefulness and usability among a sample of 15 pregnant women and their partners (if available), and improve it through 3 iterations. Data will be collected with a self-administered questionnaire. Results will be analyzed using descriptive statistics.ResultsRecruitment for phase 1 will begin in 2019. We expect results to be available in 2021.ConclusionsThis study will result in a validated analytical app that will provide pregnant women and their partners with up-to-date information about prenatal screening options and their risks and benefits. It will help them clarify their values and enable them to weigh the options to make informed choices consistent with their preferences and values before meeting face-to-face with their health care professional. The app will be easy to update with the latest information and will provide women with a user-friendly experience using their smartphones or tablets. This study and the resulting app will contribute to high-quality SDM between pregnant women and their health care team.International registered report identifier (irrid)DERR1-10.2196/13321.
| S-EPMC6913686 | biostudies-literature
Project description:IntroductionChile is committed to actively involving patients in their healthcare. However, little is known about how this is translated into clinical encounters. Breast cancer (BC) is the first cause of cancer-related death in Chilean women. National policy guarantees standard care, and treatment decisions should be made along this process that can have long-term consequences for women. So, BC is a particularly well-suited case study to understand the complexity of patient participation in decision-making.ObjectiveTo identify the factors that affect the active involvement of patients in the BC treatment decision-making process, considering the perspectives and practices of health professionals and women facing the disease.Method and analysisWe will conduct a mixed-method study through a convergent parallel design in three stages: (1) A qualitative study: non-participant observation of the tumour board (TB) meetings; semi-structured interviews with key informants from TBs; documentary analyses; semi-structured interviews with women facing BC; and non-participant observations of clinical encounters; (2) a cross-sectional study with 445 women facing BC stages I-III from three hospitals in Santiago, Chile. We will measure the level of expected participation, experienced participation, decisional conflict, quality of life (QoL) and satisfaction with healthcare. Descriptive analysis will be performed, and multivariable binary logistic regression models will be adjusted to identify factors associated with high levels of QoL or satisfaction; (3) an integration study will bring together the data through a joint display technique.Ethics and disseminationThe study has been conceived and will be conducted according to international and local agreements for ethical research. Ethical approval has been granted by two Ethics Committees in Chile.The results will be disseminated to scientific and lay audiences (publications in scientific journals and conferences, seminars and a website for plain language dissemination).
| S-EPMC10360429 | biostudies-literature
Project description:IntroductionColorectal cancer (CRC) screening programmes can reduce incidence and mortality from this condition if adherence to them is high. As patient experience and satisfaction are key factors in determining adherence to screening programmes, they need to be measured. Furthermore, to promote highly patient-centred healthcare, the perception of patients regarding shared decision-making during CRC screening needs to be known. This study aims to assess the experience, satisfaction and participation in decision-making of participants in a CRC screening programme and of patients diagnosed with CRC through this programme in relation to the diagnostic and therapeutic processes of cancer.Methods and analysisThe CyDESA study is a mixed-methods study with a four phase sequential design. In phase 1, we will conduct a systematic review of patient-reported experience measures (PREMs) for patient experience or satisfaction with CRC screening. In case no located PREM can be applied, in phase 2, we will develop a new PREM. We will use the Delphi methodology to reach consensus among experts and patients and will conduct a pilot test of the developed PREM. Phase 3 is a multicentric cross-sectional study based on self-reported questionnaires that will be conducted at three Spanish hospitals (n=843). The objective is to find out about the experience, satisfaction and participation in decision-making of participants in the CRC screening programme who have had a positive screening test result according to their final screening diagnosis: false positives, colorectal polyps or CRC. Phase 4 is a qualitative phenomenological study based on individual interviews. It will explore the experiences of participants in the CRC screening programme and of those diagnosed with CRC.Ethics and disseminationEthics approval by the Ethics Committees of Corporació Sanitària Parc Taulí, Hospital de Sant Pau and Parc de Salut Mar. Findings will be published in peer-reviewed journals and presented at conferences.Trial registration numberNCT04610086.
| S-EPMC9152928 | biostudies-literature