"It was a snap decision": parental and professional perspectives on the speed of decisions about participation in perinatal randomised controlled trials

For some perinatal trials, parents can be asked to make important decisions about trial participation within limited timeframes in highly stressful circumstances. This qualitative study explores the pace of decision-making for 78 parents associated with one or more of four such trials in the UK. The themes associated with rapid decisions were concern for their baby, reactions to staff, and perceptions of the benefits and risks associated with the trial. Those who took longer to decide whether or not to participate often described similar emotions to those who made rapid decisions, but their slower decisions were because more time was available, they wanted further discussion or they found the decision particularly difficult. The majority of those who made rapid decisions felt that there were no risks associated with the trial in question, in contrast to the majority of those who made slower decisions who felt there were risks. The parents did not appear to view rapid decisions as problematic. Although there was evidence of parental vulnerability in each trial context, they largely felt that they acted swiftly and responsibly in the best interests of their child in accordance with the timeframes that were set for them.     

Sex,power and consent: youth culture and the unwritten rules

Men who have sex with men account for a disproportionate burden of HIV incidence in the USA. Although much research has examined the drivers of sexual risk-taking, the emotional contexts in which men make sexual decisions has received little attention. In this three-phase, 10-week longitudinal qualitative study involving 25 gay and bisexual men, we used timeline-based interviews and quantitative web-based diaries about sexual and/or dating partners to examine how emotions influence HIV risk perceptions and sexual decision-making. Participants described love, intimacy, and trust as reducing HIV risk perceptions and facilitating engagement in condomless anal intercourse. Lust was not as linked with risk perceptions, but facilitated non condom-use through an increased willingness to engage in condomless anal intercourse, despite perceptions of risk. Results indicate that gay and bisexual men do not make sexual decisions in an emotional vacuum. Emotions influence perceptions of risk so that they do not necessarily align with biological risk factors. Emotional influences, especially the type and context of emotions, are important to consider to improve HIV prevention efforts among gay and bisexual men.     

The Effect of Wilderness Therapy on Adolescents’ Cognitive Autonomy and Self-efficacy: Results of a Non-randomized Trial

Background

Adolescents participate in decision-making processes involving risky behaviors. Management of these important decisions may be promoted by enhancing adolescents’ self-efficacy beliefs and cognitive autonomy.

Objective

In order to elucidate the value of wilderness therapy to the successful management of decision making processes among adolescents at risk, this study aims to examine the effect of wilderness therapy participation on cognitive autonomy and self-efficacy.

Methods

The sample consisted of 93 male adolescents at-risk aged 14–16 who study at boarding schools in Israel. Participants took part in a full wilderness therapy intervention, a partial one, or a control condition. Allocation was not randomized. Assessments included the cognitive autonomy and self evaluation inventory and the potency scale and were administered in 3 waves: pre-intervention, post-intervention, and at 5-month follow-up.

Results

The intervention group showed a significant increase in cognitive autonomy following wilderness therapy participation when compared to controls in wave 2 and wave 3. Partial wilderness therapy participation engendered a significant increase in cognitive autonomy when compared to no participation. An identical pattern of findings was found for self-efficacy.

Conclusion

This is the first report of significant cognitive autonomy benefits among male adolescents following wilderness therapy participation. Findings suggest that wilderness therapy may provide adolescents with the capacity to tackle decision-making dilemmas in a successful, constructive manner.     

Beneficent Persuasion: Techniques and Ethical Guidelines to Improve Patients’ Decisions

Physicians frequently encounter patients who make decisions that contravene their long-term goals. Behavioral economists have shown that irrationalities and self-thwarting tendencies pervade human decision making, and they have identified a number of specific heuristics (rules of thumb) and biases that help explain why patients sometimes make such counterproductive decisions. In this essay, we use clinical examples to describe the many ways in which these heuristics and biases influence patients’ decisions. We argue that physicians should develop their understanding of these potentially counterproductive decisional biases and, in many cases, use this knowledge to rebias their patients in ways that promote patients’ health or other values. Using knowledge of decision-making psychology to persuade patients to engage in healthy behaviors or to make treatment decisions that foster their long-term goals is ethically justified by physicians’ duties to promote their patients’ interests and will often enhance, rather than limit, their patients’ autonomy. We describe techniques that physicians may use to frame health decisions to patients in ways that are more likely to motivate patients to make choices that are less biased and more conducive to their long-term goals. Marketers have been using these methods for decades to get patients to engage in unhealthy behaviors; employers and policy makers are beginning to consider the use of similar approaches to influence healthy choices. It is time for clinicians also to make use of behavioral psychology in their interactions with patients.     

Participation in medical decision making: the patients' perspective.

PURPOSE: Variability in reports of patients' preferences to participate in decision making may be due in part to a lack of understanding about how patients conceptualize their participation. The authors sought to learn more about how patients view their involvement in decisions related to their health care. METHODS: The authors conducted individual interviews to allow patients to frame the decision-making process from their own perspective. The constant comparative-method approach to analysis was employed to ensure that the analysts defined the codes in a consistent manner. RESULTS: Twenty-six persons were interviewed. The main themes discussed by the participants reflecting how they viewed their involvement in medical decision making are the following: 1) decision making is often an ongoing process in which patient participation may change over time, 2) decision making is performed within an extended social context, 3) the decisions patients report being involved in are often distinct from those traditionally studied (choice of treatment or screening strategies), 4) patient involvement in decision making occurs in response to physicians' recommendations, and 5) patients make choices in the context of their specific illness perceptions. CONCLUSIONS: Participants in this study view their participation in decision making as including ideas distinct from those traditionally discussed by researchers. These findings suggest that the variability in patient participation noted in previous studies may be due in part to limitations in study design.     

Adolescent decision making about participation in a hypothetical HIV vaccine trial

PurposeThe purpose of this study was to examine the process of adolescent decision-making about participation in an HIV vaccine clinical trial, comparing it to adult models of informed consent with attention to developmental differences.MethodsAs part of a larger study of preventive misconception in adolescent HIV vaccine trials, we interviewed 33 male and female 16–19-year-olds who have sex with men. Participants underwent a simulated HIV vaccine trial consent process, and then completed a semistructured interview about their decision making process when deciding whether or not to enroll in and HIV vaccine trial. An ethnographic content analysis approach was utilized.ResultsTwelve concepts related to adolescents’ decision-making about participation in an HIV vaccine trial were identified and mapped onto Appelbaum and Grisso's four components of decision making capacity including understanding of vaccines and how they work, the purpose of the study, trial procedures, and perceived trial risks and benefits, an appreciation of their own situation, the discussion and weighing of risks and benefits, discussing the need to consult with others about participation, motivations for participation, and their choice to participate.ConclusionThe results of this study suggest that most adolescents at high risk for HIV demonstrate the key abilities needed to make meaningful decisions about HIV vaccine clinical trial participation.     

Emotions, decisions, and the limits of rationality: symposium introduction.

In this symposium, three speakers describe research that examines ways in which people's decision-making is affected by emotions. In his paper, Dr. Loewenstein describes research on the properties and effects of "projection bias," the tendency to allow one's immediate, often transient, preferences to influence decisions in the future when one's preferences will be predictable different. Over-shopping on an empty stomach or failing, when not addicted, to appreciate one's future helplessness in the face of drug craving, are examples. Dr. Schwarz focuses on how experiences that accompany the thought process can influence the ease of access to information or the fluency with which new information can be processed. These meta-cognitive experiences can affect decisions. For example, recalling many risk-increasing behaviors is more difficult than recalling only a few. Drawing on this difficulty, people who recall many risk-increasing behaviors infer that they are at lower risk than people who recall merely a few risk-increasing behaviors, in contrast to what the content of recall would suggest. Finally, Dr. Bodenhausen clarifies what is meant by stereotyping, considers how stereotypes might influence decision-making processes, and discuss why this influence often might not be very desirable. He then describes research about factors that amplify the biasing impact of stereotypes in decision making processes. The authors provide examples, discuss implications of their findings for medical decision-making, and describe strategies that we might employ to minimize or eliminate the biases that might be introduced into decision-making processes.     

Adolescent Pediatric Decision-Making: A Critical Reconsideration in the Light of the Data

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own.     

Decision-Making Authority and Substance Abuse Treatment for Adolescents: A Survey of State Laws

PurposeState laws concerning decision-making authority for voluntary inpatient substance abuse (SA) treatment of minors may be a potential barrier to appropriate treatment. We sought to identify and classify relevant laws related to the provision of voluntary inpatient SA treatment to adolescents 12 to 17 years (minors) as an exploratory assessment to improve understanding of how these laws might affect treatment decisions.MethodsIn summer 2006, we conducted a survey of statutes, regulations, and legal cases in the 50 states and the District of Columbia regarding the authority of parents (or guardians) and minors to make treatment decisions for voluntary inpatient SA treatment.ResultsAll 50 states have laws applicable to voluntary inpatient SA treatment for adolescents, and the laws vary significantly throughout the nation. If a minor and parent disagree about SA treatment, some states defer to the decision-making authority of the minor, whereas other states defer to the parent. Most significantly, the majority of states fail to specify whether the minor's or the parent's decision will control in the event of a conflict.ConclusionsThe lack of clarity in state laws regarding decision-making authority for voluntary inpatient SA treatment of minors may create a potential barrier to treatment for adolescents, especially those with more serious SA problems. This lack of clarity could lead to confusion among parents, adolescents, healthcare professionals, and treatment facilities, and ultimately could result in a failure to treat adolescents in need of medical attention. Policymakers should ensure that state laws clearly specify procedures to enable treatment if a conflict arises between adolescents and parents, including procedures to ensure that the due process rights of adolescents are protected.     

The influence of parents’ information processing on childhood vaccine acceptance after a vaccine crisis in China

Drawing upon the protective action decision model and the heuristic-systematic model, this study investigated the determinants of parents’ response to the 2016 vaccine crisis in Shandong Province, China. A survey was conducted from Anhui Province (N = 456). The findings showed that both perceived vaccine knowledge and perceptions of risk from the vaccine crisis were vital in predicting parents’ information insufficiency (the perceived discrepancy between actual and desired levels of vaccine knowledge), information seeking, information processing (where parents make a judgement about information validity), and their intentions towards childhood vaccination. In addition, information insufficiency and information seeking also significantly facilitated parents’ information processing. When parents described processing information systematically, they were more likely to accept childhood vaccination. On the other hand, seeking more information about the crisis did not influence reported childhood vaccination practices. Implications and suggestions for health-related crisis communication research are discussed.