ABSTRACT
Few studies have directly targeted nonparticipants in colorectal cancer screening to identify effective engagement strategies. We undertook a randomized controlled trial that targeted nonparticipants in a previous trial of average-risk subjects which compared participation rates for mailed invitations offering a fecal test, a blood test or a choice of either. Nonparticipants (n = 899) were randomized to be offered a kit containing a fecal immunochemical test (FIT), directions on how to arrange a blood DNA test, or the option of doing either. Screening participation was assessed 12 weeks after the offer. To assess the cognitive and attitudinal variables related to participation and invitee choice, invitees were surveyed after 12 weeks, and associations were investigated using multinomial logistic regression. Participation rates were similar between groups (P = 0.88): 12.0% for FIT (35/292), 13.3% for the blood test (39/293), and 13.4% for choice (39/290). Within the choice group, participation was significantly higher with FIT (9.7%, 28/290) compared with the blood test (3.8%, 11/290, P = 0.005). The only variable significantly associated with participation was socioeconomic status when offered FIT, and age when offered choice but there was none when offered the blood test. Survey respondents indicated that convenience, time-saving, comfort, and familiarity were major influences on participation. There was no clear advantage between a fecal test, blood test, or choice of test although, when given a choice, the fecal test was preferred. Differences in variables associated with participation according to invitation strategy warrant consideration when deciding upon an invitation strategy for screening nonparticipants. PREVENTION RELEVANCE: This trial of screening for those at average risk for colorectal cancer targeted past fecal-test nonparticipants and compared participation rates for mailed invitations offering a fecal test, blood test, or choice of either. Although there was no clear advantage between strategies, factors associated with participation differed between each strategy.
Subject(s)
Colorectal Neoplasms/diagnosis , Early Detection of Cancer , No-Show Patients , Patient Participation/methods , Aged , Australia/epidemiology , Choice Behavior , Colonoscopy/psychology , Colonoscopy/statistics & numerical data , Colorectal Neoplasms/epidemiology , Colorectal Neoplasms/prevention & control , Early Detection of Cancer/methods , Early Detection of Cancer/psychology , Early Detection of Cancer/statistics & numerical data , Female , Health Services Needs and Demand/statistics & numerical data , Humans , Male , Mass Screening , Middle Aged , No-Show Patients/psychology , No-Show Patients/statistics & numerical data , Occult Blood , Refusal to Participate/psychology , Refusal to Participate/statistics & numerical dataABSTRACT
Importance: It remains poorly understood how parents decide whether to enroll a child in a neonatal clinical trial. This is particularly true for parents from racial or ethnic minority populations. Understanding factors associated with enrollment decisions may improve recruitment processes for families, increase enrollment rates, and decrease disparities in research participation. Objective: To assess differences in parental factors between parents who enrolled their infant and those who declined enrollment for a neonatal randomized clinical trial. Design, Setting, and Participants: This survey study conducted from July 2017 to October 2019 in 12 US level 3 and 4 neonatal intensive care units included parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and Encephalopathy (HEAL) trial or who were eligible but declined enrollment. Data were analyzed October 2019 through July 2020. Exposure: Parental choice of enrollment in neonatal clinical trial. Main Outcomes and Measures: Percentages and odds ratios (ORs) of parent participation as categorized by demographic characteristics, self-assessment of child's medical condition, study comprehension, and trust in medical researchers. Survey questions were based on the hypothesis that parents who enrolled their infant in HEAL differ from those who declined enrollment across 4 categories: (1) infant characteristics and parental demographic characteristics, (2) perception of infant's illness, (3) study comprehension, and (4) trust in clinicians and researchers. Results: Of a total 387 eligible parents, 269 (69.5%) completed the survey and were included in analysis. This included 183 of 242 (75.6%) of HEAL-enrolled and 86 of 145 (59.3%) of HEAL-declined parents. Parents who enrolled their infant had lower rates of Medicaid participation (74 [41.1%] vs 47 [55.3%]; P = .04) and higher rates of annual income greater than $55â¯000 (94 [52.8%] vs 30 [37.5%]; P = .03) compared with those who declined. Black parents had lower enrollment rates compared with White parents (OR, 0.35; 95% CI, 0.17-0.73). Parents who reported their infant's medical condition as more serious had higher enrollment rates (OR, 5.7; 95% CI, 2.0-16.3). Parents who enrolled their infant reported higher trust in medical researchers compared with parents who declined (mean [SD] difference, 5.3 [0.3-10.3]). There was no association between study comprehension and enrollment. Conclusions and Relevance: In this study, the following factors were associated with neonatal clinical trial enrollment: demographic characteristics (ie, race/ethnicity, Medicaid status, and reported income), perception of illness, and trust in medical researchers. Future work to confirm these findings and explore the reasons behind them may lead to strategies for better engaging underrepresented groups in neonatal clinical research to reduce enrollment disparities.
Subject(s)
Biomedical Research , Clinical Trials as Topic , Parental Consent/psychology , Parents/psychology , Refusal to Participate/psychology , Female , Humans , Infant, Newborn , Male , Surveys and Questionnaires , TrustABSTRACT
OBJECTIVE: To evaluate the maternal characteristics associated with consent to a randomized trial of labor induction in pregnancy. METHODS: This is a secondary analysis of low-risk nulliparous women randomized to induction of labor at 39 weeks or expectant management. During the trial, the Data and Safety Monitoring Committee requested additional fields on the screening log, which already included race and ethnicity: maternal age, type of insurance, and the reason for declining consent if declined. RESULTS: From August 2016 (start of additional data collection) to August 2017, 1,965 (28%) of the 7,112 eligible women consented to the trial. Consent was more likely for Black women (41%, adjusted odds ratio [aOR] 1.47, 95% CI 1.24-1.74), and less likely for Asian women (15%, aOR 0.64, 95% CI 0.48-0.84), compared with White women (24%). Women without private insurance were more likely to consent (38%, aOR 1.55, 95% CI 1.34-1.79), compared with those with private insurance (22%). Younger women were also more likely to consent. Among eligible women who declined participation and provided a reason (68%), preference to be expectantly managed (85%) was most common, a response more common in Asian women (aOR 1.75, 95% CI 1.31-2.33) and less common in women without private insurance (aOR 0.60, 95% CI 0.51-0.70). Not wanting to participate in research was more common in Asian women (aOR 2.41, 95% CI 1.44-4.03). Declining consent because family or friends objected was more common in Asian women (aOR 2.51, 95% CI 1.27-4.95) and women without private insurance (aOR 1.68, 95% CI 1.10-2.59). CONCLUSION: Frequency of consent and reasons for declining consent were associated with age, type of insurance, and race and ethnicity. These findings should be considered when developing recruitment strategies that promote diverse participant representation. CLINICAL TRIAL REGISTRATION: ClinialTrials.gov, NCT01990612.
Subject(s)
Insurance Coverage , Labor, Induced , Patient Preference , Refusal to Participate , Adult , Family Characteristics/ethnology , Female , Gestational Age , Humans , Informed Consent/psychology , Labor, Induced/methods , Labor, Induced/psychology , Maternal Age , Outcome Assessment, Health Care , Parity , Patient Preference/economics , Patient Preference/ethnology , Patient Selection , Pregnancy , Refusal to Participate/ethnology , Refusal to Participate/psychology , Refusal to Participate/statistics & numerical dataSubject(s)
Coronavirus Infections/diagnosis , Pneumonia, Viral/diagnosis , Refusal to Participate/psychology , Betacoronavirus , COVID-19 , COVID-19 Testing , Clinical Laboratory Techniques/economics , Clinical Laboratory Techniques/standards , Coronavirus Infections/economics , Coronavirus Infections/prevention & control , Coronavirus Infections/psychology , Humans , Pandemics/prevention & control , Pneumonia, Viral/prevention & control , Reproducibility of Results , SARS-CoV-2Subject(s)
House Calls/statistics & numerical data , Red Cross , Refusal to Participate , Treatment Refusal , Volunteers/statistics & numerical data , Adolescent , Attitude to Health , Benin/epidemiology , Child , Child, Preschool , Dietary Supplements/statistics & numerical data , Family Characteristics , Health Knowledge, Attitudes, Practice , Health Promotion/organization & administration , Health Promotion/statistics & numerical data , Humans , Infant , Infection Control/standards , Infection Control/statistics & numerical data , Interpersonal Relations , Mass Vaccination/psychology , Mass Vaccination/statistics & numerical data , Measles/epidemiology , Measles/prevention & control , Measles Vaccine/therapeutic use , Patient Education as Topic/methods , Patient Education as Topic/organization & administration , Red Cross/organization & administration , Refusal to Participate/psychology , Refusal to Participate/statistics & numerical data , Risk Factors , Treatment Refusal/psychology , Treatment Refusal/statistics & numerical data , Vitamin A/administration & dosage , Volunteers/psychologyABSTRACT
Communication about organ donation at the time of imminent death is a meaningful, yet less understood, area of health communication. We employed a multiple goals framework to explore family normative perceptions of organ donation and the conversational goal tensions experienced during a family member's imminent death. Semi-structured interviews were conducted with 14 family members who refused to donate when approached by an organ procurement coordinator (OPC) upon the imminent death of a family member. Thematic analysis revealed that family members described their decisions to refuse donation as (a) last acts of love, (b) responses to unnecessary requests, and (c) consistent with the known beliefs of the patient. Participants described several goal tensions operating within the organ donation conversation itself, including (a) the management of frequent requests, (b) pressure to donate, and (c) enduring unwanted requests from the OPC. Communication goals frameworks offer practical insights for improving organ-related conversations.
Subject(s)
Family/psychology , Motivation , Proxy/psychology , Refusal to Participate/psychology , Right to Die , Tissue and Organ Procurement , Adult , Aged , Decision Making , Female , Humans , Male , Middle Aged , Young AdultABSTRACT
The present study examined the effect of offense-based labels on community members' willingness to volunteer with people convicted for varying offenses and any priming effect of labeling language. Participants (N = 310) were randomly assigned to a label condition or a neutral condition and completed an anonymous online survey about their willingness to volunteer with different groups. The labeling condition utilized labels (e.g., "sex offenders," "murderers"), whereas the control condition utilized neutral descriptors (e.g., "people who have committed crimes of a sexual nature"). Overall, findings supported the hypothesis that offense-based labels were associated with less willingness to volunteer, with findings most pronounced for the "sex offender" and "child sex offender" labels. Participants in the labeling condition showed greater voluntary use of labels compared with neutral language and were more likely to use labels compared with participants in the neutral condition. Implications for influencing public opinion are discussed.
Subject(s)
Criminals/psychology , Public Opinion , Refusal to Participate/psychology , Social Perception , Volunteers/psychology , Adult , Criminals/statistics & numerical data , Female , Humans , Male , Volunteers/statistics & numerical dataABSTRACT
BACKGROUND: Alcohol use and misuse are prevalent on many college campuses. The current study examined participation in college environments where alcohol is present and being consumed. We documented students' alcohol consumption, social abstaining (i.e., attending an alcohol-present event, but not drinking), and refusing invitations to drinking events. We tested for differences by parental education, immigrant status, race-ethnicity, and gender. We charted longitudinal change across college. METHODS: First-year students attending a large public US university (n = 681, 18% first-generation college student, 16% first-generation immigrant, 73% racial-ethnic minority group member, 51% women) were recruited and followed longitudinally for 7 semesters. Each semester, students completed up to 14 daily surveys; responses were aggregated to the semester level (n = 4,267). RESULTS: Multilevel logistic regression models demonstrated that first-generation college students were less likely to drink and refuse invitations to drinking events than students with a college-educated parent (Adjusted Odds Ratios [AORs]: 0.66, 0.72, respectively). Similarly, first-generation immigrants were less likely to drink, socially abstain, and refuse invitations (AORs: 0.58 to 0.73). Compared with White students, Black and Asian American students were less likely to drink (AORs: 0.55, 0.53) and refuse invitations to drinking events (AORs: 0.68, 0.66). The proportion of days spent drinking increased across college, and refusing invitations was the most common at the start and end of college. CONCLUSIONS: First-generation college students, first-generation immigrant students, and Black and Asian students participated less in prodrinking environments during college. These findings indicate that on drinking and nondrinking days, students' participation in alcohol-present situations differed by background. Furthermore, our results indicate that the students who are most likely to refuse invitations to drinking events are the same students who drink most frequently.
Subject(s)
Alcohol Abstinence/psychology , Alcohol Abstinence/trends , Alcohol Drinking in College/psychology , Social Behavior , Students/psychology , Universities/trends , Adolescent , Alcohol Drinking in College/ethnology , Female , Humans , Longitudinal Studies , Male , Refusal to Participate/ethnology , Refusal to Participate/psychology , Surveys and Questionnaires , Young AdultABSTRACT
School attendance problems negatively affect students' development. This study attempted to identify different school refusal behavior profiles and to examine their relationship with three dimensions of social anxiety (fear of negative evaluation, social avoidance and distress in new situations, and social avoidance and distress that is experienced more generally in the company of peers) and the perception of family functioning. Participants included 1842 Spanish adolescents (53% girls) aged 15-18 years (M = 16.43; SD = 1.05). The School Refusal Assessment Scale-Revised (SRAS-R), the Social Anxiety Scale for Adolescents (SAS-A), and the Family APGAR Scale (APGAR: Adaptation, Partnership, Growth, Affection, and Resolve) were administered. Latent class analysis revealed four school refusal behavior profiles: non-school refusal behavior, high school refusal behavior, moderately low school refusal behavior, and moderately high school refusal behavior. Analyses of variance (ANOVA) indicated that adolescents' with the profile of high school refusal behavior showed higher scores in all the subscales of social anxiety. In contrast, the non-school refusal behavior group revealed higher scores in the perception of good family functioning, whereas the high school refusal behavior profile obtained the lowest scores in this scale. These findings suggest that students who reject school are at a higher risk of developing social anxiety problems and manifesting family conflicts. These students should be prioritized in order to attend to their needs, promoting self-help to overcome social anxiety and family problems with the purpose of preventing school refusal behaviors.
Subject(s)
Adolescent Behavior/psychology , Anxiety/psychology , Family/psychology , Refusal to Participate/psychology , Schools , Social Behavior , Students/psychology , Adolescent , Anxiety/epidemiology , Female , Humans , Male , Peer Group , Risk Assessment , Spain/epidemiologyABSTRACT
OBJECTIVES: We set out to investigate paramedics' views of ethics and research, drawing on experiences from Paramedic-2, a randomised controlled trial comparing epinephrine and placebo in out-of-hospital cardiac arrest (OHCA). METHODS: An interpretative phenomenological approach was adopted. A purposive sample of paramedics (n=6) from North East Ambulance Service NHS Foundation Trust were invited to a semi-structured, in-depth interview. RESULTS: Three superordinate themes emerged: (1) morality, (2) emotion and (3) equipoise. Some viewed Paramedic-2 as an opportunity to improve OHCA outcomes for the many, viewing participation as a moral obligation; others viewed the study as unethical, equating participation with immoral behaviour. Morality was a motivator to drive individual action. Positive and negative emotions were exhibited by the paramedics involved reflecting the wider view each paramedic held about trial participation. Those morally driven to participate in Paramedic-2 discussed their pride in being associated with the trial, while those who found participation unethical, discussed feelings of guilt and regret. Individual experience and perceptions of epinephrine guided each paramedic's willingness to accept or reject equipoise. Some questioned the role of epinephrine in OHCA; others believed withholding epinephrine was synonymous to denying patient care. CONCLUSION: A paucity of evidence exists to support any beneficial role of epinephrine in OHCA. Despite this, some paramedics were reluctant to participate in Paramedic-2 and relied on their personal perceptions and experiences of epinephrine to guide their decision regarding participation. Failure to acknowledge the importance of individual perspectives may jeopardise the success of future out-of-hospital trials.
Subject(s)
Attitude of Health Personnel , Clinical Trials as Topic/ethics , Emergency Medical Technicians/psychology , Out-of-Hospital Cardiac Arrest/drug therapy , Adult , Ambulances/ethics , Emotions , Epinephrine/administration & dosage , Female , Humans , Male , Middle Aged , Morals , Patient Selection/ethics , Placebos/administration & dosage , Qualitative Research , Refusal to Participate/ethics , Refusal to Participate/psychology , Resuscitation/ethics , Resuscitation/methods , United KingdomABSTRACT
OBJECTIVE: Iatrophobia - fear of doctors, medical care, or the medical care system - is common among patients and can negatively impact their health-seeking behaviors and relationships with health care professionals. Despite this, academic literature on iatrophobia often fails to explore its nuanced causes. METHODS: We establish a conceptual framework of iatrophobia, categorizing sources of fear that may create barriers to accessing medical care, and recommend a research agenda to address this phenomenon and understand its role in medical care. RESULTS: The framework includes three categories of determinants of iatrophobia: patient fear of illness and the medical exam, patient fear of physician reaction, and patient fear related to barriers to care. These categories represent influences from individual to more system-related factors associated with the physician-patient relationship. Research examining iatrophobia should focus on understanding its prevalence, how patients cope with their fear, discussing iatrophobia in the physician-patient encounter, the sociopolitical contribution to iatrophobia, and how iatrophobia can be reduced. CONCLUSIONS: Iatrophobia can be categorized into three primary domains, but it remains poorly understood. PRACTICE IMPLICATIONS: A more thorough understanding of iatrophobia will help to contextualize its role amid other barriers to care and patient health outcomes.
Subject(s)
Patient Acceptance of Health Care/psychology , Phobic Disorders , Refusal to Participate/psychology , Attitude to Health , Decision Making , Fear , HumansABSTRACT
Describe the current state of deceased kidney donation in Southern Vietnam and to explore the knowledge, attitude and behaviour towards kidney donation after death. Factors associated with the decision to donate among selective populations in HoChi Minh city were explored. Self-administered questionnaire of 30 questions to people over 18 years in three different communities were studied, n = 1068; 77% and 63.8% agreed they would donate their own kidney and that of their relatives respectively after death. Factors associated with positive donation wishes were knowledge of the national shortage of organs and brain death as well as positive previous family conversations. Main reason for refusal was lack of agreement within families about donation. The desire for equitable distribution of organs was frequently expressed. The majority of people interviewed in this large study agreed with deceased organ donation. Despite this, few deceased donor kidney transplants are performed in adults and none in children in Southern Vietnam, therefore greater efforts in the donation process and coordination of deceased donor lists is required. Given the correlation between positive donation wishes and knowledge with desire to donate, widespread public education campaigns are critical to the promotion and development of a successful deceased organ donation programme in Southern Vietnam.
Subject(s)
Family Relations/psychology , Kidney Transplantation , Refusal to Participate , Tissue and Organ Procurement/statistics & numerical data , Adult , Decision Making , Female , Health Knowledge, Attitudes, Practice , Humans , Kidney Transplantation/psychology , Kidney Transplantation/statistics & numerical data , Male , Refusal to Participate/psychology , Refusal to Participate/statistics & numerical data , VietnamABSTRACT
PURPOSE: The purpose of this study was to evaluate demographic factors impacting parental attitudes to clinical research in pediatric surgery. METHODS: A prospective survey administered to caregivers accompanying children (pediatric surgical outpatient clinic or day surgery) using convenience sampling (September-November 2017) using a previously published survey with Likert scale was performed. Questions included demographics, parental willingness to enroll children in specified types of research, and beliefs regarding conduct of research. RESULTS: Eighty-four parents were surveyed (100 approached). No demographic factors significantly predicted research participation involving sample collection (urine, saliva, blood) or research requiring follow-up. However, mothers were less likely to agree to studies using common medications (pâ¯=â¯0.049) or common surgical procedures (pâ¯=â¯0.013) and less likely to agree to randomization involving surgery (assigning to common surgical procedure, pâ¯=â¯0.013; surgery vs no surgery, pâ¯=â¯0.031). University graduates were less likely to agree to randomization to surgery vs no surgery (pâ¯=â¯0.02). Beliefs regarding conduct of research were similar, except that non-university graduates were more likely to believe that privacy would be compromised (pâ¯=â¯0.003). Boys were deemed less likely to be too sick for participation (pâ¯=â¯0.03) and more likely to want to participate (pâ¯=â¯0.03). CONCLUSION: Behavioral and attitude differences in caregivers can inform strategies for recruitment among researchers. Impact of caregiver and child gender on responses requires further evaluation. TYPE OF STUDY: Treatment study. LEVEL OF EVIDENCE: Level II.
Subject(s)
Attitude to Health , Biomedical Research , Parents/psychology , Patient Participation/psychology , Refusal to Participate/psychology , Adolescent , Adult , Aged , Child , Child, Preschool , Cross-Sectional Studies , Demography , Female , Health Care Surveys , Humans , Infant , Infant, Newborn , Male , Middle Aged , Motivation , Pilot Projects , Prospective Studies , Specialties, Surgical , Young AdultABSTRACT
Research has clearly established the important role of parents in preventing substance use among early adolescents. Much of this work has focused on deviance (e.g., antisocial behavior, delinquency, and oppositional behavior) as a central pathway linking parenting behaviors and early adolescent substance use. This study proposed an alternative pathway; using a four-wave longitudinal design, we examined whether nurturant-involved parenting (Fall sixth grade) was inversely associated with adolescent drunkenness, marijuana use, and cigarette use (eighth grade) through social anxiety symptoms (Spring sixth grade) and subsequent decreases in substance refusal efficacy (seventh grade). Nurturant-involved parenting is characterized by warmth, supportiveness, low hostility, and low rejection. Analyses were conducted with a sample of 687 two-parent families. Results indicated that adolescents who were in families where fathers exhibited lower levels of nurturant-involved parenting experienced subsequent increases in social anxiety symptoms and decreased efficacy to refuse substances, which in turn was related to more frequent drunkenness, cigarette use, and marijuana use. Indirect effects are discussed. Findings were not substantiated for mothers' parenting. Adolescent gender did not moderate associations. The results highlight an additional pathway through which parenting influences youth substance use and links social anxiety symptoms to reduced substance refusal efficacy.
Subject(s)
Anxiety/psychology , Internal-External Control , Parenting/psychology , Refusal to Participate/psychology , Substance-Related Disorders/prevention & control , Adolescent , Adult , Alcoholic Intoxication/prevention & control , Alcoholic Intoxication/psychology , Anxiety/diagnosis , Child , Father-Child Relations , Female , Humans , Longitudinal Studies , Male , Marijuana Use/psychology , Mother-Child Relations , Risk Factors , Self Efficacy , Smoking/psychology , Substance-Related Disorders/psychologyABSTRACT
INTRODUCTION: Randomized trials are important for generating high-quality evidence, but are perceived as difficult to perform in the pediatric population. Thus far there has been poor characterization of the barriers to conducting trials involving children, and the variation in these barriers between countries remains undescribed. The General Anesthesia compared to Spinal anesthesia (GAS) trial, conducted in seven countries between 2007 and 2013, provides an opportunity to explore these issues. METHODS: We undertook a descriptive analysis to evaluate the reasons for variation in enrollment between countries in the GAS trial, looking specifically at the number of potential subjects screened, and the subsequent application of four exclusion criteria that were applied in a hierarchical order. RESULTS: A total of 4023 patients were screened by 28 centers in seven countries. Australia and the USA screened the most subjects, accounting for 84% of all potential trial participants. The percentage of subjects eliminated from the screened pool by each exclusion criterion varied between countries. Exclusion due to a predefined condition (H1) eliminated only 5% of potential subjects in Italy and the UK, but 37% in Canada. Exclusions due to a contraindication or a physician's refusal most impacted enrollment in Australia and the USA. The patient being "too large for spinal anesthesia" was the most commonly cited by anesthetists who refused to enroll a patient (64% of anesthetist refusals). The majority of surgeon refusals came from the USA, where surgeons preferred the patient to receive a general anesthetic. The percentage of approached parents refusing to consent ranged from a low of 3% in Italy to a high of 70% in the USA and Netherlands. The most frequently cited reason for parent refusal in all countries was a preference for general anesthesia (median: 43%, range: 32%-67%). However, a sizeable proportion of parents in all countries had a contrasting preference for spinal anesthesia (median: 25%, range: 13%-31%), and 23% of U.S. parents expressed concern about randomization. CONCLUSION: The GAS trial highlights enrollment challenges that can occur when conducting multicenter, international, pediatric studies. Investigators planning future trials should be aware of potential differences in screening processes across countries, and that exclusions by anesthetists and surgeons may vary in reason, in frequency, and by country. Furthermore, investigators should be aware that the U.S. centers encountered particularly high surgeon and parental refusal rates and that U.S. parents were uniquely concerned about randomization. Planning trials that address these difficulties should increase the likelihood of successfully recruiting subjects in pediatric trials.
Subject(s)
Anesthesia, General/psychology , Anesthesia, Spinal/psychology , Randomized Controlled Trials as Topic/psychology , Refusal to Participate/psychology , Anesthesia, General/methods , Anesthesia, Spinal/methods , Australia , Europe , Humans , Infant , Infant, Newborn , Multicenter Studies as Topic/psychology , New Zealand , North America , Parental Consent/psychology , Parents/psychologyABSTRACT
BACKGROUND: In Japan, 90% of kidney transplantations involve living related donors. A third-party interview is conducted during latter stages of preparation for transplantation to ensure the donor's voluntary decision-making. In this study, we investigated the factors responsible for withdrawal of decision for kidney donation by related living donors after third-party interview. METHODS: Related living donor candidates were divided into 2 groups based on their final decision: those who finally donated the kidney (FDG; n = 435); and those who withdrew their decision after third-party interview (WG; n = 11). The psychosocial and medical variables were compared and the reasons for withdrawal were investigated. RESULTS: Multiple logistic regression analysis revealed that none of the variables were significantly related to WG. Six categories of reasons for withdrawal were identified: "avoiding pregnancy risk"; "selecting alternative treatment"; "avoiding physical burden for donor"; "recipients' intemperance"; "need to take more time for decision-making"; and "psychological pressure." CONCLUSION: A certain number of donor candidates withdrew their decision for different reasons, even in the latter stages of the transplant preparation. Careful verification of the donor candidates' individual situation and provision of adequate information and time are important to protect the donor's right to refuse.
Subject(s)
Kidney Transplantation/psychology , Living Donors/psychology , Refusal to Participate/psychology , Adult , Decision Making , Female , Humans , Japan , Male , Middle AgedABSTRACT
INTRODUCTION: Discontinuation of orthodontic treatment has iatrogenic, psychological, ergonomic and financial consequences. The objective of this study was to investigate early risk factors (prior to installation) of discontinuation of orthodontic treatment. MATERIALS AND METHODS: We performed a case-control study between a group of patients who dropped their orthodontic treatment ("A") and a randomly selected group of patients who had completed their orthodontic treatment ("NA"). The two groups were compared, with descriptive, uni and multivariate analyzes. The risk factors assessed were age, gender, socioeconomic status, type of treatment, dysmorphism, malocclusion, need for treatment, compliance. RESULTS: In the dropout group 55 patients were included ("A") and 100 in the non-abandoned ("NA") group randomly selected. The subject at risk of abandonment was a girl of less than 11 years of age with a low socio-economic level with antero-posterior and vertical skeletal dysmorphisms, a molar class II, a teeth crowding, a small aesthetic prejudice or, on the contrary, very important, complex treatment (with extractions or with surgery) and having delays or missed appointments before the installation of the orthodontic appliance. CONCLUSION: Patients' motivation needs to be strengthened for both extremes: treatments that appear simple and conversely for complex cases requiring strong cooperation.
Subject(s)
Malocclusion/diagnosis , Malocclusion/therapy , Orthodontics, Corrective , Patient Compliance , Refusal to Participate , Adolescent , Adult , Case-Control Studies , Child , Early Diagnosis , Female , France/epidemiology , Humans , Male , Malocclusion/epidemiology , Middle Aged , Orthodontics, Corrective/psychology , Orthodontics, Corrective/statistics & numerical data , Patient Compliance/psychology , Patient Compliance/statistics & numerical data , Prognosis , Refusal to Participate/psychology , Refusal to Participate/statistics & numerical data , Risk Factors , Socioeconomic Factors , Time Factors , Treatment Failure , Treatment Outcome , Young AdultABSTRACT
OBJECTIVES: To measure two forms of attrition in a cohort of volunteer brain donors: Withdrawal during life and non-donation at death. To test whether cognitive impairment independently predicts attrition. METHOD: Attrition rates were calculated for all registered participants and for all brain donors who had completed a baseline and follow-up assessment of cognition, health, and lifestyle. Attrition reasons were described, and attrition rates were compared by gender, age group, and cognitive status. Multivariate logistic regression was used to identify the factors which independently predicted during life and at death. RESULTS: A total of 3276 brain donors registered and 2307 (70.4%) remained in the cohort. Attrition rate overall was 5.9% for withdrawal and 13.8% for donation. Family disagreement and the brain bank not being informed of participant death were the most common reasons for withdrawal and donation attrition. Withdrawal was associated with having cognitive impairment (OR 2.0 95% CI 1.1-3.5), increased age (OR 3.1 95% CI 1.4-6.9), and lower education (OR 1.8 95% CI 1.2-2.8). Participants exhibiting cognitive decline between assessments were more likely to withdraw (OR 4.9 95% CI 1.7-13.6). Participants living alone were almost twice as likely to die without donating (OR 1.9 95% CI 1.1-3.3). CONCLUSIONS: Attrition rates were relatively low, and consistent with other studies cognitive impairment, increased age, and less education predicted study withdrawal. Deaths of participants living alone were less likely to result in donation. Tailored, regular retention practices aimed at resolving family disagreement regarding donation decisions are required.
Subject(s)
Biomedical Research/statistics & numerical data , Brain , Cognitive Dysfunction , Dementia , Refusal to Participate/psychology , Tissue Donors/psychology , Aged , Cohort Studies , Female , Humans , Logistic Models , Male , Middle AgedABSTRACT
Negative emotional states are common among youth with problematic school absenteeism, but little is known about their presence across different school refusal behavior profiles. The aim of this study was twofold: to identify different cluster solutions across functional profiles of school refusal behavior (I. Avoidance of Negative Affectivity, II. Escape from Social and/or Evaluative Situations, III. Pursuit of Attention, and IV. Pursuit of Tangible Reinforcement) and to determine whether these profiles differ from each other based on dimensions of depression, anxiety, and stress. The sample consisted of 1582 Ecuadorian adolescents aged 12-18 years (Mâ¯=â¯14.83; SDâ¯=â¯1.86) who completed the School Refusal Assessment Scale-Revised (SRAS-R) and the Depression, Anxiety and Stress Scale-21 (DASS-21). Latent class analysis revealed three school refusal profiles: non-school refusal behavior, school refusal behavior by tangible reinforcements, and school refusal behavior by multiple reinforcements. The last group displayed the most maladaptive profile and revealed highest mean scores on the three dimensions of the DASS-21 compared to other groups. To promote mental health in this group it is a necessary goal due to their link with these negative emotional states. Prevention measures to strengthen emotional self-regulation should be considered in these cases.
Subject(s)
Adolescent Behavior/psychology , Anxiety/psychology , Depression/psychology , Refusal to Participate/psychology , Stress, Psychological/psychology , Students/psychology , Adolescent , Anxiety/diagnosis , Anxiety/epidemiology , Child , Depression/diagnosis , Depression/epidemiology , Female , Humans , Male , Schools/trends , Stress, Psychological/diagnosis , Stress, Psychological/epidemiologyABSTRACT
OBJECTIVE: School refusal is an important pediatric problem with significant negative short- and long-term outcomes. Specific psychosocial treatments appear effective in reducing school refusal, but many children do not respond to these treatments. Although systematic reviews have examined the efficacy of psychological interventions for school refusal, no systematic reviews on pharmacological interventions exist. METHODS: We conducted a comprehensive literature search of MEDLINE, PsycINFO, Scopus, and Embase for randomized controlled trials (RCTs) or quasi-experimental pharmacologic trials in children and adolescents with school refusal reported in English or Spanish until July 1, 2017. Two authors screened study titles and abstracts for eligibility. Data regarding the population, intervention, comparison, and outcomes for each trial were extracted and reported. Effect sizes for school attendance are presented. RESULTS: The search identified 6 articles, including 7 trials (6 RCTs and 1 open label) and 306 youths. Pharmacologic treatments investigated for school refusal included antidepressants (imipramine, clomipramine, and fluoxetine) and benzodiazepines (alprazolam). All pharmacotherapies studied had pretreatment to posttreatment improvements on school refusal, depression, and anxiety symptoms. However, included trials were severely underpowered and did not demonstrate significant improvement compared to placebo. CONCLUSIONS: Data regarding pharmacological treatments for school refusal are sparse. Most trials in this area were conducted before development of newer antidepressants, were underpowered, and have significant methodological limitations that are characteristic of the time in which they were conducted. This systematic review highlights the need for more trials with newer pharmacologic agents, larger sample sizes, and improved systematic assessments of school refusal and comorbidities. School refusal represents an important functional outcome for many children, especially those with anxiety and depression. Future pharmacologic studies of anxiety and depression in children may benefit from incorporating specific school refusal measures as secondary outcomes.