Life-changing Decisions Research Articles

Making consent meaningful: The ‘dance’ of seeking consent for an ethnography in the family court

Inspired by the themes emerging from a contemporary dance video, this paper proposes a theoretical framework for seeking consent from prospective participants in an ethnographic study of child protection court cases (care proceedings) in the family court in England. Research evidence to date suggests that this is a formal environment that is often alienating and confusing for families. As a qualified social worker and researcher, I draw on my ongoing doctoral research to explore some of the challenges of negotiating participant consent in the highly emotive space of the courtroom, where life-changing decisions are made about families’ future lives and relationships. Here, I focus on how the process of seeking consent can remain ethical, meaningful and responsive under such unpredictable and pressurised conditions by creating a research space that resists coercion through the power of ‘no’. A core problematic is how participants can be encouraged to say ‘no’ to research when they may be feeling vulnerable and disempowered by family court processes and structures. The complexities and ethics of the dance video capture some of the tensions and synergies that co-exist in these researcher-researched relationships.

Shared decision making in primary malignant bone tumour surgery around the knee in children and young adults: protocol for a prospective study

BackgroundChildren and young adults needing surgery for a primary malignant bone tumour around the knee face a difficult, life-changing decision. A previous study showed that this population wants to be involved more in the decision-making process and that more involvement leads to less decisional stress and regret. Therefore, a well-designed and standardized decision-making process based on the principles of shared decision-making needs to be designed, implemented, and evaluated.MethodsWe developed a shared decision-making (SDM) model for this patient population, including an online decision aid (DA). This model has been implemented in the standard care of patients with a primary malignant bone tumour around the knee. Following implementation, we will analyse its effect on the decision-making process and the impact on patient experiences using questionnaires and interviews. Moreover, potential areas for improvement will be identified.DiscussionGiven the importance of involving patients and parents in surgical decision-making, particularly in life-changing surgery such as malignant bone tumour surgery, and given the lack of SDM models applicable for this purpose, we want to share our model with the international community, including our study protocol for evaluating and optimising the model. This study will generate valuable knowledge to facilitate the optimisation of current patient care for local treatment. The sharing of our implementation and study protocol can serve as an example for other centres interested in implementing SDM methods in an era characterized by more empowered patients and parents who desire autonomy and reliable and realistic information.

'Leaving the Door Open': Perspectives on Decision-Making for Non-Emergency Diabetes-Related Amputation.

Having a lower extremity amputation is a life-changing decision for people living with a diabetes-related foot ulcer. Although previous research has described both positive and negative lifestyle and function outcomes of diabetes-related amputations, limited research has been conducted on the decision-making processes leading up to the amputation. This study aimed to explore the perspectives of persons, healthcare practitioners and experts (including academics and specialists) on decision-making for people with a diabetes-related foot ulcer who may require a non-emergency amputation. A qualitative descriptive study using semi-structured interviews enabled people to share their thought processes when making decisions for amputation. Twenty-six participants were interviewed, including nine people with a diabetes-related foot ulcer or amputation, nine health practitioners and eight experts located across five countries. There were 13 female and 13 male participants. Thematic analysis was used for data analysis. Four themes described the decision-making considerations for amputation: 'Balancing the evidence in decision-making', 'Trust, respect and timing of conversations inform decision-making', 'Tailoring decisions for individual circumstance' and 'Reaching the tipping point in decisions for the future'. Work commitments, functional and lifestyle impacts of amputation, the presence of support networks and clinical wound features formed the evidence for a decision for amputation. Understanding quality of life needs ensured that decisions for amputation addressed expectations and lifestyle needs. Living with a diabetes-related foot ulcer presented daily challenges that pushed people to a tipping point, at which amputation was considered to overcome these hardships and enable them to move on to the next chapter of their life. Further research is required to understand how person-centred factors can be better incorporated alongside objective clinical assessments in decisions for amputation. People with diabetes-related foot ulcers, health practitioners and experts shared their perspectives on the decision-making process for amputation through one-to-one interviews. Consideration of the person in the context of their life, environment and personal needs alongside the pathological factors is warranted.

Preliminary Validation of Stigma Measures Among Parents of Children Who Are d/Deaf or Hard of Hearing in the United States and Ghana

Objectives: Parents are integral to the development and overall well-being of their child. Previous research has studied the emotional effects parenting experiences have on parents. However, parents caring for children with disabilities have unique parenting experiences, filled with both victories and challenges. Parenting a child with disabilities can bring additional responsibilities as parents respond to their child’s special needs. Specifically, parents of children who are d/Deaf or hard of hearing (d/DHH) are required to make ongoing life-changing decisions about their child’s life, including mode of communication, medical care, and education. Across the world, many adults who are d/DHH experience stigma. However, less is known about the stigma faced by children who are d/DHH and their parents. Measuring the nature and magnitude of stigma-affecting parents of children who are d/DHH could offer insights into how to additionally support these parents. Nonetheless, there is a gap in validated scales to measure stigma among parents of children who are d/DHH. In response, we developed and preliminarily validated five measures of stigma among parents of children who are d/DHH. Design: Measures were developed through a mixed-method process: (1) a scoping literature review, (2) a modified Delphi process consisting of two group discussions (n = 3, n = 4) and two individual discussions with parents of children who are d/DHH from high-income countries (HICs) and low- and middle-income countries (LMICs), (3) cognitive interviews with parents of children who are d/DHH in the United States (U.S.) (n = 5) and Ghana (n = 5), and (4) a pretest of the survey in the U.S. (n = 28) and Ghana (n = 30). Modifications to the measures were made after each stage. This article focuses on evaluating the psychometric performance of the developed measures. Parents were recruited in the U.S. (n = 100) and Ghana (n = 173). Convenience sampling was used in both countries. In Ghana, survey administration was in-person with trained interviewers collecting data on tablets. In the U.S. data were collected online through self-administered surveys. Results: The final five scales measured: (1) parental observation of stigma their child experiences (seven items), (2) parental perceptions of stigma toward their child (eight items), (3) parental secondary experienced stigma (eight items), (4) perceived parental secondary stigma (five items), and (5) parental internalized stigma (seven items). All scales performed strongly and similarly across both country samples. The scales had ordinal αs ranging from 0.864 to 0.960, indicating strong reliability. Conclusions: This study provides a set of preliminarily validated stigma measures to capture the experience of parents of children who are d/DHH. Measuring stigma among parents is critical to understanding parental mental health, as parental well-being affects the health and development of their child. Furthermore, measuring observed stigma by parents can allow the researcher to gain an understanding of the stigma experienced by children who are d/DHH that they may not be able to communicate. Further studies testing these measures across other countries and with more diverse samples are needed.

An ethical assessment of professional opinions on concerns, chances, and limitations of the implementation of an artificial intelligence-based technology into the geriatric patient treatment and continuity of care

With the introduction of an artificial intelligence-based dashboard into the clinic, the project SURGE-Ahead responds to the importance of improving perioperative geriatric patient treatment and continuity of care. The use of artificial intelligence to process and analyze data automatically, aims at an evidence-based evaluation of the patient’s health condition and recommending treatment options. However, its development and introduction raise ethical questions. To ascertain professional perspectives on the clinical use of the dashboard, we have conducted 19 semi-structured qualitative interviews with head physicians, computer scientists, jurists, and ethicists. The application of a qualitative content analysis and thematic analysis enabled the detection of main ethical concerns, chances, and limitations. These ethical considerations were categorized: changes of the patient-physician relationship and the current social reality are expected, causing de-skilling and an active participation of the artificial intelligence. The interviewees anticipated a redistribution of human resources, time, knowledge, and experiences as well as expenses and financing. Concerns of privacy, accuracy, transparency, and explainability were stated, and an insufficient data basis, an intensifying of existing inequalities and systematic discrimination considering a fair access emphasized. Concluding, the patient-physician relationship, social reality, redistribution of resources, fair access, as well as data-related aspects of the artificial intelligence-based system could conflict with the ethical principles of autonomy, non-maleficence, beneficence, and social justice. To respond to these ethical concerns, a responsible use of the dashboard and a critical verification of therapy suggestions is mandatory, and the application limited by questions at the end of life and taking life-changing decisions.

Acne influences life-changing decisions among young adults.

Acne is a chronic inflammatory disease predominantly affecting young people. This study was undertaken to assess the impact of acne in young adults on their major life-changing decisions (MLCD), paying attention to the relationships between major life-changing decisions profile (MLCDP) and Quality of Life (QoL), feeling of stigmatization and acceptance of the disease. The study was performed on 213 young people diagnosed with acne. A variety of questionnaires were employed to measure the clinical and psychological aspects of acne. The majority of patients (N.=148, 73.3%) reported at least one MLCD that acne affected in any way (mean number 2.9±3.2, range: 0-18). The most common MLCD influenced by acne appeared to be a decision of changing eating habits (N.=132, 65.3%), followed by changing habits associated with smoking and alcohol (N.=85, 42.1%) and deciding to be more active physically (N.=61, 30.2%). The total score of MLCDP ranged from 0 to 33 points (mean 5.41±6.23 points). MLCDP total score significantly correlated with clinical acne severity (P=0.006), QoL (P<0.001), stigmatization (P<0.001) and illness acceptance (P<0.001). Acne has an important impact on life-changing decisions in young adults. MLCDP correlates with impaired QoL, level of stigmatization and degree of illness acceptance. This should be taken into consideration in the holistic approach to acne patients.

The patient's perspective on the burden of psoriasis: findings based on the ROCQ, an online survey.

Psoriasis is a common chronic skin disease, with well-characterised impact on quality-of life, however, no information is available on the lifetime impact of psoriasis on patients' lives. This descriptive cross-sectional web-based survey of patients with psoriasis, recruited from an online patient community, was conducted in France in 2021. Established questionnaires (Major Life-Changing Decision Profile-MLCDP, Dermatology Life Quality Index-DLQI, Hospital Anxiety and Depression Scale [HADS]), CAGE and BRIEF-COPE) were administered together with specially created questions. In total, 301 adult patients (mean age: 46.9 years; 56% women; mean disease duration: 20.3 years) participated in the study. The MLCDP showed that a mean of 9.4 life-changing decision items were affected; the most frequently cited domains being social life (n=258; 85.7%) and physical activity (n=226; 75.1%). In addition, 183 participants (60.7%) declared at least moderate impact of their psoriasis on their quality of life (score ≥6), with a median DLQI score of 7 [IQR: 3-13]. Impact on activities of daily living, such as social life, physical activities and marital relationships, was reported by over 50% of participants. Moreover, 107 (35.5%) declared being satisfied and 66 (21.9%) very satisfied with care. Over 50% of participants reported stigma related to being considered to have a contagious disease (n=182) or being unhygienic (n=163) and undesirable (n=167). Finally, 104 participants (34.6%) presented with clinically relevant anxiety and 32 (10.6%) clinically relevant depression (score ≥11) based on the HADS. Psoriasis carries a high psychological burden and has a strong long-term impact on social functioning.

A Call to Action: Using Curriculum Mapping at Four Medical Schools in Massachusetts to Advance Serious Illness Communication Training in Undergraduate Medical Education.

Background: Practicing physicians require serious illness communication (SIC) skills to ensure high-quality, humanistic care for patients and families as they face life-changing medical decisions. However, a majority of U.S. medical schools do not require formal training in SIC and fail to provide students deliberate practice before graduation. The Massachusetts Medical Schools' Collaborative was created to ensure that students receive foundational SIC training in undergraduate medical education. This Collaborative developed a curriculum-mapping tool to assess SIC at four medical schools. Objective: We aimed to understand existing educational activities across four medical schools and identify opportunities to build longitudinal, developmentally based curricular threads in SIC. Design: From July 2019 to April 2021, faculty, staff, and medical students assessed current educational activities related to five core competencies in SIC, adapted for students from national competencies for palliative medicine fellows, using a curriculum mapping tool. Measurements: The group selected 23 keywords and collected metrics to describe the timing, instruction and assessment for each school's educational activities. Results: On average, there were only 40 hours of required curricula in SIC over four years. Over 80% of relevant SIC hours occurred as elective experiences, mostly during the postclerkship phase, with limited capacity in these elective experiences. Only one school had SIC educational activities during the clerkship phase when students are developing clinical competencies. Assessment methods focused on student participation, and no school-assessed clinical performance in the clerkship or postclerkship phase. Conclusions: Medical schools are failing to consistently train and ensure basic competency in effective, compassionate SIC. Curriculum mapping allows schools to evaluate their current state on a particular topic such as SIC, ensure proper assessment, and evaluate curricular changes over time. Through the deliberate inclusion of SIC competencies in longitudinal curriculum design, we can fill this training gap and create best practices in undergraduate medical education.

Doublet Therapy: Two Narrative Accounts of One Life-Changing Decision.

Doublet Therapy: Two Narrative Accounts of One Life-Changing Decision.

Exploring moral heuristics in managerial decision-making. The dialectic of duty and consequence

This paper explores the use of moral heuristics within a large public sector organisation in the UK. Managers within the case study organisation were interviewed and directly observed over a four-year period, using a grounded theory methodology, to examine the ways in which they made decisions. Whereas the extant literature primarily focuses on hypothetical situations, this paper delves into the application of the heuristic in real-world situations. The results reveal widespread use of moral heuristics within the organization, accompanied by a clear dichotomy between ‘soft’ and ‘hard’ business units. Moral heuristics find extensive application in the former but encounter opposition in the latter. Consequently, the paper argues that managers in ‘soft’ work environments are more inclined to employ moral heuristics compared to their counterparts in other parts of the workplace. This study contributes to knowledge in three ways: proposing a new conceptualization of the moral heuristic, identifying instances of its use, and illustrating how it operates in real-world situations. The significance of this paper lies in its demonstration of how the heuristic is practically employed to make crucial, potentially life-changing decisions.

Nanotechnology and E-Sensing for Food Chain Quality and Safety.

Nowadays, it is well known that sensors have an enormous impact on our life, using streams of data to make life-changing decisions. Every single aspect of our day is monitored via thousands of sensors, and the benefits we can obtain are enormous. With the increasing demand for food quality, food safety has become one of the main focuses of our society. However, fresh foods are subject to spoilage due to the action of microorganisms, enzymes, and oxidation during storage. Nanotechnology can be applied in the food industry to support packaged products and extend their shelf life. Chemical composition and sensory attributes are quality markers which require innovative assessment methods, as existing ones are rather difficult to implement, labour-intensive, and expensive. E-sensing devices, such as vision systems, electronic noses, and electronic tongues, overcome many of these drawbacks. Nanotechnology holds great promise to provide benefits not just within food products but also around food products. In fact, nanotechnology introduces new chances for innovation in the food industry at immense speed. This review describes the food application fields of nanotechnologies; in particular, metal oxide sensors (MOS) will be presented.

Factors Influencing Major Life-Changing Decisions in Patients with Psoriasis: A Cross-sectional Study.

Psoriasis is a chronic inflammatory disease associated with significant impairment in quality of life. Although quality of life in patients with psoriasis has been widely studied, there is little evidence regarding the impact of psoriasis on major life-changing decisions (MLCD). The aims of this study are to describe the impact of psoriasis on MLCD and to explore the potential clinical factors associated with MLCD. This cross-sectional study included 113 patients with psoriasis, regardless of disease severity, duration, or current treatment. The impact of the disease on different MLCD, including those related to professional career, decision of having children, choice of clothing, and leisure activities, was explored using Likert scales. Mean age was 51 years old and female to male ratio was 1.08 (54/50). The mean Psoriasis Area Severity Index was 3.75, and 30% (35/113) of the patients had psoriatic arthropathy. The most affected MLCD were career choice (median (interquartile range) score 3 (2-4)), social relationships (2 (1-3)), choice of clothing (2 (1-3)), job performance, absenteeism, and choice of holiday destination (1 (0-2)). Female sex, early age of onset and psoriatic arthropathy were associated with a greater impact of the disease on MLCD (p < 0.05). The results showed that a range of MLCD are affected in patients with psoriasis, such as career choice, job performance, absenteeism, or choice of clothing. Female sex, psoriatic arthritis and early age of onset are factors associated with a greater impact on MLCD. In order to limit the long-term negative effects of psoriasis on patients, special attention should be paid to detection of psoriatic arthritis, and to patients with early disease onset.

Evaluating Risk Factors for Cumulative Life Course Impairment in Psoriasis using Patient-Acceptable Symptom State and European Quality of Life 5 Dimensions (EQ-5D)

Objective: To evaluated the health-utility values and risk factors for cumulative life course impairment (CLCI) using Patient Acceptable Symptom State (PASS) and European Quality of Life 5 Dimensions (EQ-5D). Materials and Methods: This cross-sectional investigation enrolled patients with psoriasis. Patients were asked PASS questions about their overall self-perceived health state, adaptation, and expectations for current, future, and lifelong conditions. The patients also completed EQ-5D. Results: The mean age of 139 enrolled patients was 45.8 ± 14.4 years, and 57.6% were women. Most cases had chronic plaque psoriasis 121 (87.1%). For current PASS, satisfaction was significantly associated with older age, being married, and lower disease severity. The mean health-utility value and visual analog scale of the 139 patients were 0.89 ± 0.12 and 77.0 ± 17.4, respectively. Patients would not accept their disease if they had moderate to extreme problems in usual activities and depression/anxiety for the future and lifelong. Univariate analysis revealed that depression and usual activities were significantly associated with satisfaction for current PASS, future PASS, and lifelong PASS. Conclusion: Disease severity, age, marital status, problems with usual activities, and depression/anxiety were significantly related to CLCI. These findings may allow physicians to identify psychosocial and psychological aspects of psoriatic patients at high risk for developing CLCI. Early and adequate treatment, good coping strategies, and good social support can prevent a negative impact on CLCI and major life-changing decisions.

Psychosexual responses to BRCA gene mutations in women of childbearing age.

Diagnosis of a BRCA gene mutation presents a dilemma because life-changing medical decisions must be made to prevent breast and ovarian cancer. There is minimal evidence regarding how psychosexual functioning, psychological well-being with regard to body image and sexuality, affects the decision to have prophylactic treatment in women of childbearing age (WCBA; 18-49 years) with a BRCA gene mutation. To explore, describe, and interpret the experience of women with a BRCA mutation during the treatment and decision-making process. A qualitative descriptive design was used to recruit participants online through social media postings and from national and local BRCA support groups. Participants participated in semistructured interviews exploring their experience after BRCA diagnosis. Interpretive descriptive analysis was used to identify themes. The purposive sample comprised 18 women aged 21-49 years. Four major themes, such as body image, sexuality, femininity, and childbearing/childrearing, were identified that influenced decisions related to the diagnosis and management of a BRCA mutation. All participants voiced that concerns regarding body image and sexuality caused hesitancy in their decision to have prophylactic surgery. Women who had undergone bilateral prophylactic mastectomy were concerned about the impact of the surgery, scarring, breast disfigurement, and the lack of sensation resulting from surgical intervention. Psychosexual concerns arise from internal and external influences that significantly affect the decision to undergo prophylactic measures. Therefore, body image, sexuality, and sexual orientation should all be addressed during the decision-making process. Provider communication and preparation for realistic surgical outcomes can be improved to assist WCBA throughout the decision-making process and enhance psychosexual functioning.

Using emotion to guide decisions: the accuracy and perceived value of emotional intensity forecasts

Forecasts about future emotion are often inaccurate, so why do people rely on them to make decisions? People may forecast some features of their emotional experience better than others, and they may report relying on forecasts that are more accurate to make decisions. To test this, four studies assessed the features of emotion people reported forecasting to make decisions about their careers, education, politics, and health. In Study 1, graduating medical students reported relying more on forecast emotional intensity than frequency or duration to decide how to rank residency programs as part of the process of being matched with a program. Similarly, participants reported relying more on forecast emotional intensity than frequency or duration to decide which universities to apply to (Study 2), which presidential candidate to vote for (Study 3), and whether to travel as Covid-19 rates declined (Study 4). Studies 1 and 3 also assessed forecasting accuracy. Participants forecast emotional intensity more accurately than frequency or duration. People make better decisions when they can anticipate the future. Thus, people’s reports of relying on forecast emotional intensity to guide life-changing decisions, and the greater accuracy of these forecasts, provide important new evidence of the adaptive value of affective forecasts.

Reconstructing Roots: Emotional Drivers of Migration and Identity

This study examines how emotions propel migration from the United States to Mexico and subsequent migration within Mexico for young deported migrants and migrants compelled to return. Though often relegated to a second tier of importance after political or economic factors, emotions are central to the decisions that young migrants make about where to live and how to identify. I argue that emotions influence young immigrants in the U.S. to make life changing decisions to return to Mexico at moments of acute stress or uncertainty. Additionally, I argue that both compelled and deported return migrants carve out spaces of belonging and construct identities through emotional labor. Specifically, I find that young returnees draw on memories from the U.S., connections with other returnees, and imagined attachments to their ancestral cultures in Mexico as they adopt proud Mexican identities in surroundings that often mark them as outsiders on both sides of the border.

Children’s Developmental (Im)maturity: Aligning Conflicting Decisional Capacity Assessment Approaches in Australia

Children’s decision-making is complex. There are many factors that contribute to children’s decisional capacity including cognitive reasoning, developmental maturity, upbringing and circumstances. For healthcare decisions, Australian law acknowledges children’s autonomy, and permits mature children to consent to beneficial healthcare. Yet, it also protects them from making life-changing decisions that could contravene their best interests. The criminal law approaches to children’s decision-making in Australia’s jurisdictions involves holding older children fully responsible for their decision-making, regardless of circumstances or maturity. The two approaches conflict because health law offers a protective mechanism for children yet criminal law imposes a punitive approach to children’s decision-making. This article considers whether the dichotomous approaches for children’s capacity assessments in Australian law can be reconciled.

Towards Adversarial Attacks for Clinical Document Classification

Regardless of revolutionizing improvements in various domains thanks to recent advancements in the field of Deep Learning (DL), recent studies have demonstrated that DL networks are susceptible to adversarial attacks. Such attacks are crucial in sensitive environments to make critical and life-changing decisions, such as health decision-making. Research efforts on using textual adversaries to attack DL for natural language processing (NLP) have received increasing attention in recent years. Among the available textual adversarial studies, Electronic Health Records (EHR) have gained the least attention. This paper investigates the effectiveness of adversarial attacks on clinical document classification and proposes a defense mechanism to develop a robust convolutional neural network (CNN) model and counteract these attacks. Specifically, we apply various black-box attacks based on concatenation and editing adversaries on unstructured clinical text. Then, we propose a defense technique based on feature selection and filtering to improve the robustness of the models. Experimental results show that a small perturbation to the unstructured text in clinical documents causes a significant drop in performance. Performing the proposed defense mechanism under the same adversarial attacks, on the other hand, avoids such a drop in performance. Therefore, it enhances the robustness of the CNN model for clinical document classification.

Auditing fairness under unawareness through counterfactual reasoning

Artificial intelligence (AI) is rapidly becoming the pivotal solution to support critical judgments in many life-changing decisions. In fact, a biased AI tool can be particularly harmful since these systems can contribute to or demote people’s well-being. Consequently, government regulations are introducing specific rules to prohibit the use of sensitive features (e.g., gender, race, religion) in the algorithm’s decision-making process to avoid unfair outcomes. Unfortunately, such restrictions may not be sufficient to protect people from unfair decisions as algorithms can still behave in a discriminatory manner. Indeed, even when sensitive features are omitted (fairness through unawareness), they could be somehow related to other features, named proxy features. This study shows how to unveil whether a black-box model, complying with the regulations, is still biased or not. We propose an end-to-end bias detection approach exploiting a counterfactual reasoning module and an external classifier for sensitive features. In detail, the counterfactual analysis finds the minimum cost variations that grant a positive outcome, while the classifier detects non-linear patterns of non-sensitive features that proxy sensitive characteristics. The experimental evaluation reveals the proposed method’s efficacy in detecting classifiers that learn from proxy features. We also scrutinize the impact of state-of-the-art debiasing algorithms in alleviating the proxy feature problem.

Two faces of review inconsistency: The respective effects of internal and external inconsistencies on job review helpfulness

A job review is an essential source of information for job seekers. Since job reviews influence a job application that can be a life-changing decision, detecting helpful reviews is a significant task for both job seekers and job review platforms. Hence, this study hypothesizes the relationships between systematic factors (i.e., internal inconsistency within a review, external inconsistency with other reviews, and review length) and review helpfulness. We used negative binomial regression to confirm the hypotheses to analyze 514,929 job reviews collected from jobplanet. co.kr. Our findings show internal inconsistency is positively related to review helpfulness and external inconsistency is negatively related to review helpfulness. Moreover, review length moderates the respective relations of two inconsistencies and review helpfulness. This study provides a new perspective to review inconsistency by separating the construct and suggesting internal and external inconsistency measurements. This study also highlights the strength of the heuristic-systematic model by demonstrating the dynamics of systematic factors.