As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
DOCUMENT
In case of a major cyber incident, organizations usually rely on external providers of Cyber Incident Response (CIR) services. CIR consultants operate in a dynamic and constantly changing environment in which they must actively engage in information management and problem solving while adapting to complex circumstances. In this challenging environment CIR consultants need to make critical decisions about what to advise clients that are impacted by a major cyber incident. Despite its relevance, CIR decision making is an understudied topic. The objective of this preliminary investigation is therefore to understand what decision-making strategies experienced CIR consultants use during challenging incidents and to offer suggestions for training and decision-aiding. A general understanding of operational decision making under pressure, uncertainty, and high stakes was established by reviewing the body of knowledge known as Naturalistic Decision Making (NDM). The general conclusion of NDM research is that experts usually make adequate decisions based on (fast) recognition of the situation and applying the most obvious (default) response pattern that has worked in similar situations in the past. In exceptional situations, however, this way of recognition-primed decision-making results in suboptimal decisions as experts are likely to miss conflicting cues once the situation is quickly recognized under pressure. Understanding the default response pattern and the rare occasions in which this response pattern could be ineffective is therefore key for improving and aiding cyber incident response decision making. Therefore, we interviewed six experienced CIR consultants and used the critical decision method (CDM) to learn how they made decisions under challenging conditions. The main conclusion is that the default response pattern for CIR consultants during cyber breaches is to reduce uncertainty as much as possible by gathering and investigating data and thus delay decision making about eradication until the investigation is completed. According to the respondents, this strategy usually works well and provides the most assurance that the threat actor can be completely removed from the network. However, the majority of respondents could recall at least one case in which this strategy (in hindsight) resulted in unnecessary theft of data or damage. Interestingly, this finding is strikingly different from other operational decision-making domains such as the military, police and fire service in which there is a general tendency to act rapidly instead of searching for more information. The main advice is that training and decision aiding of (novice) cyber incident responders should be aimed at the following: (a) make cyber incident responders aware of how recognition-primed decision making works; (b) discuss the default response strategy that typically works well in several scenarios; (c) explain the exception and how the exception can be recognized; (d) provide alternative response strategies that work better in exceptional situations.
DOCUMENT
People with dementia are confronted with many decisions. However, they are often not involved in the process of the decision-making. Shared Decision-Making (SDM) enables involvement of persons with dementia in the decision-making process. In our study, we develop a supportive IT application aiming to facilitate the decision-making process in care networks of people with dementia. A key feature in the development of this SDM tool is the participation of all network members during the design and development process, including the person with dementia. In this paper, we give insight into the first phases of this design and development process in which we conducted extensive user studies and translated wishes and needs of network members into user requirements
DOCUMENT
In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient’s values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient’s values. The shared decision-making model seems to be helpful in the integration of the individual patient’s values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient’s willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making – integrated with evidence-based practice – can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence- based practice to deliver patient-centred care.
DOCUMENT
Background: Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. Methods: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our userbase consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. Results: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/. Conclusions: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
DOCUMENT
Background: For most women, participation in decision-making during maternity care has a positive impact on their childbirth experiences. Shared decision-making (SDM) is widely advocated as a way to support people in their healthcare choices. The aim of this study was to identify quality criteria and professional competencies for applying shared decision-making in maternity care. We focused on decision-making in everyday maternity care practice for healthy women. Methods: An international three-round web-based Delphi study was conducted. The Delphi panel included international experts in SDM and in maternity care: mostly midwives, and additionally obstetricians, educators, researchers, policy makers and representatives of care users. Round 1 contained open-ended questions to explore relevant ingredients for SDM in maternity care and to identify the competencies needed for this. In rounds 2 and 3, experts rated statements on quality criteria and competencies on a 1 to 7 Likert-scale. A priori, positive consensus was defined as 70% or more of the experts scoring ≥6 (70% panel agreement). Results: Consensus was reached on 45 quality criteria statements and 4 competency statements. SDM in maternity care is a dynamic process that starts in antenatal care and ends after birth. Experts agreed that the regular visits during pregnancy offer opportunities to build a relationship, anticipate situations and revisit complex decisions. Professionals need to prepare women antenatally for unexpected, urgent decisions in birth and revisit these decisions postnatally. Open and respectful communication between women and care professionals is essential; information needs to be accurate, evidence-based and understandable to women. Experts were divided about the contribution of professional advice in shared decision-making and about the partner’s role. Conclusions: SDM in maternity care is a dynamic process that takes into consideration women’s individual needs and the context of the pregnancy or birth. The identified ingredients for good quality SDM will help practitioners to apply SDM in practice and educators to prepare (future) professionals for SDM, contributing to women’s positive birth experience and satisfaction with care.
MULTIFILE
PurposeIn order to better understand how heuristics are used in practice, the authors explore what type of heuristics is used in the managerial domain of financial advisors to small and medium-sized enterprises (SMEs) and what influences the shaping of these heuristics. In doing so, the authors detect possible fast-and-frugal heuristics in day-to-day decision-making of independent financial advisers who help owners of SMEs to acquire capital (e.g. loans, factoring, leasing and equity).Design/methodology/approachThe authors inductively assessed the work of financial advisers of SMEs. Based on group discussions, the authors drew up a semi-structured interview-protocol with descriptive questions about how financial advisers come to a deal for their clients. The interviews of 19 professionals were analysed by relating them to the theory of fast-and-frugal heuristics.FindingsWithin their decision-making, advisers estimate the likelihood of acceptance by a few financial providers they know well in their personal network with a strong bias towards traditional banking products, although there are a large number of alternatives on the Dutch market. “Less is more” seems to be a relevant principle when defined as satisficing. Heuristics help advisers to deal with behavioural and economic limitations. Also, the authors have found that client interaction, previous working experience and the company the adviser is working for influences the shaping of the simple rules the adviser is using.Research limitations/implicationsThe study shows how difficult it is to understand the ecological rationality of a certain group of professionals and to understand the “less is more” principle. Financial advisers to SMEs use cognitive shortcuts and simple rules to advise SME-owners, based on previous experiences, but it is difficult to determine whether that leads to the same or even better solutions for them and their clients than using probability theory and financial optimisation models. Within heuristics, satisficing seems to be a dominant mechanism. Here, heuristics help advisers in recognising possibilities by searching for similarities between a current financing case and previous experiences. The data suggests that if “less is more” is defined as satisficing for one or more stakeholders involved, the principle dominates the decision making of financial advisers of SME's.Practical implicationsThe authors suggest the relevance of a behavioural approach to finance by assessing the day-to-day decisions of financial advisers of SMEs. Also, the authors suggest that financial advisers are guided by previous experiences, and they do not fully assess a wide range of options in their work but need shortcuts to fulfil the needs of their clients.Originality/valueThe study comes close to day-to-day decision-making in finance by assessing how professionals make decisions. The authors try to understand types of heuristics in relation with “ecological rationality” and the less is more principle. The authors assess financial advisers of SME-companies, a group that has gotten little research attention until now. The influence of client interaction and of the company the adviser is working for is remarkable in the shaping of the advisers' simple rules.
MULTIFILE
Background Clients facing decision-making for long-term care are in need of support and accessible information. Construction of preferences, including context and calculations, for clients in long-term care is challenging because of the variability in supply and demand. This study considers clients in four different sectors of long-term care: the nursing and care of the elderly, mental health care, care of people with disabilities, and social care. The aim is to understand the construction of preferences in real-life situations. Method Client choices were investigated by qualitative descriptive research. Data were collected from 16 in-depth interviews and 79 client records. Interviews were conducted with clients and relatives or informal caregivers from different care sectors. The original client records were explored, containing texts, letters, and comments of clients and caregivers. All data were analyzed using thematic analysis. Results Four cases showed how preferences were constructed during the decision-making process. Clients discussed a wide range of challenging aspects that have an impact on the construction of preferences, e.g. previous experiences, current treatment or family situation. This study describes two main characteristics of the construction of preferences: context and calculation. Conclusion Clients face diverse challenges during the decision-making process on long-term care and their construction of preferences is variable. A well-designed tool to support the elicitation of preferences seems beneficial.
DOCUMENT
Background: The majority of patients diagnosed with early-stage breast cancer are in a position to choose between having a mastectomy or lumpectomy with radiation therapy (breast-conserving therapy). Since the long-term survival rates for mastectomy and for lumpectomy with radiation therapy are comparable, patients’ informed preferences are important for decision-making. Although most clinicians believe that they do include patients in the decision-making process, the information that women with breast cancer receive regarding the surgical options is often rather subjective, and does not invite patients to express their preferences. Shared decision-making (SDM) is meant to help patients clarify their preferences, resulting in greater satisfaction with their final choice. Patient decision aids can be very supportive in SDM. We present the protocol of a study to β test a patient decision aid and optimise strategies for the implementation of SDM regarding the treatment of early-stage breast cancer in the actual clinical setting. Methods/design: This paper concerns a preimplementation and post-implementation study, lasting from October 2014 to June 2015. The intervention consists of implementing SDM using a patient decision aid. The intervention will be evaluated using qualitative and quantitative measures, acquired prior to, during and after the implementation of SDM. Outcome measures are knowledge about treatment, perceived SDM and decisional conflict. We will also conduct face-to-face interviews with a sample of these patients and their care providers, to assess their experiences with the implementation of SDM and the patient decision aid.
DOCUMENT
Background: Shared decision-making is one key element of interprofessional collaboration. Communication is often considered to be the main reason for inefficient or ineffective collaboration. Little is known about group dynamics in the process of shared decision-making in a team with professionals, including the patient or their parent. This study aimed to evaluate just that. Methods: Simulation-based training was provided for groups of medical and allied health profession students from universities across the globe. In an overt ethnographic research design, passive observations were made to ensure careful observations and accurate reporting. The training offered the context to directly experience the behaviors and interactions of a group of people. Results: Overall, 39 different goals were defined in different orders of prioritizing and with different time frames or intervention ideas. Shared decision-making was lacking, and groups chose to convince the parents when a conflict arose. Group dynamics made parents verbally agree with professionals, although their non-verbal communication was not in congruence with that. Conclusions: The outcome and goalsetting of an interprofessional meeting are highly influenced by group dynamics. The vision, structure, process, and results of the meeting are affected by multiple inter- or intrapersonal factors.
DOCUMENT
