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1.
Fam Process ; 57(2): 510-524, 2018 06.
Article in English | MEDLINE | ID: mdl-28590541

ABSTRACT

Individual and group-based psychotherapeutic interventions increasingly incorporate mindfulness-based principles and practices. These practices include a versatile set of skills such as labeling and attending to present-moment experiences, acting with awareness, and avoiding automatic reactivity. A primary motivation for integrating mindfulness into these therapies is compelling evidence that it enhances emotion regulation. Research also demonstrates that family relationships have a profound influence on emotion regulation capacities, which are central to family functioning and prosocial behavior more broadly. Despite this evidence, no framework exists to describe how mindfulness might integrate into family therapy. This paper describes the benefits of mindfulness-based interventions, highlighting how and why informal mindfulness practices might enhance emotion regulation when integrated with family therapy. We provide a clinical framework for integrating mindfulness into family therapy, particularly as it applies to families with adolescents. A brief case example details sample methods showing how incorporating mindfulness practices into family therapy may enhance treatment outcomes. A range of assessment modalities from biological to behavioral demonstrates the breadth with which the benefits of a family-based mindfulness intervention might be evaluated.


Subject(s)
Family Relations/psychology , Family Therapy/methods , Mindfulness/methods , Adaptation, Psychological , Adolescent , Adult , Emotions , Female , Humans , Male , Social Adjustment , Treatment Outcome
2.
AJOB Empir Bioeth ; 8(3): 189-197, 2017.
Article in English | MEDLINE | ID: mdl-28949898

ABSTRACT

PURPOSE: Voluntary consent/assent with adolescents invited to participate in research raises challenging problems. No studies to date have attempted to manipulate autonomy in relation to assent/consent processes. This study evaluated the effects of an autonomy-enhanced individualized assent/consent procedure embedded within a randomized pediatric asthma clinical trial. METHODS: Families were randomly assigned to remain together or separated during a consent/assent process; the latter we characterize as an autonomy-enhanced assent/consent procedure. We hypothesized that separating adolescents from their parents would improve adolescent assent by increasing knowledge and appreciation of the clinical trial and willingness to participate. RESULTS: Sixty-four adolescent-parent dyads completed procedures. The together versus separate randomization made no difference in adolescent or parent willingness to participate. However, significant differences were found in both parent and adolescent knowledge of the asthma clinical trial based on the assent/consent procedure and adolescent age. The separate assent/consent procedure improved knowledge of study risks and benefits for older adolescents and their parents but not for the younger youth or their parents. Regardless of the assent/consent process, younger adolescents had lower comprehension of information associated with the study medication and research risks and benefits, but not study procedures or their research rights and privileges. CONCLUSIONS: The use of an autonomy-enhanced assent/consent procedure for adolescents may improve their and their parent's informed assent/consent without impacting research participation decisions. Traditional assent/consent procedures may result in a "diffusion of responsibility" effect between parents and older adolescents, specifically in attending to key information associated with study risks and benefits.


Subject(s)
Biomedical Research , Comprehension , Health Knowledge, Attitudes, Practice , Informed Consent By Minors , Parent-Child Relations , Parental Consent , Research Design , Adolescent , Asthma , Biomedical Research/ethics , Biomedical Research/methods , Biomedical Research/standards , Child , Decision Making , Female , Humans , Informed Consent By Minors/standards , Male , Parents , Personal Autonomy , Research Design/standards , Risk
3.
Child Obes ; 11(5): 577-84, 2015 Oct.
Article in English | MEDLINE | ID: mdl-26325143

ABSTRACT

BACKGROUND: Currently, over 30% of US youth are overweight and 1 in 6 have metabolic syndrome, making youth obesity one of the major global health challenges of the 21st century. Few enduring treatment strategies have been identified in youth populations, and the majority of standard weight loss programs fail to adequately address the impact of psychological factors on eating behavior and the beneficial contribution of parental involvement in youth behavior change. METHODS: A critical need exists to expand treatment development efforts beyond traditional education and cognitive-behavioral programs and explore alternative treatment models for youth obesity. Meditation-based mindful eating programs represent a unique and novel scientific approach to the current youth obesity epidemic given that they address key psychological variables affecting weight. RESULTS: The recent expansion of mindfulness programs to include family relationships shows the immense potential for broadening the customarily individual focus of this intervention to include contextual factors thought to influence youth health outcomes. CONCLUSIONS: This article provides an overview of how both mindful eating and family systems theory fits within a conceptual framework in order to guide development of a comprehensive family-based mindful eating program for overweight youth.


Subject(s)
Behavior Therapy/methods , Family Therapy/methods , Feeding Behavior/psychology , Mindfulness , Parents/psychology , Pediatric Obesity/psychology , Adolescent , Female , Humans , Male , Pediatric Obesity/prevention & control , Program Evaluation , Social Environment , Weight Loss
4.
AJOB Prim Res ; 4(3): 15-26, 2013.
Article in English | MEDLINE | ID: mdl-23914304

ABSTRACT

BACKGROUND: There has been a recent growth in empirical research on assent with pediatric populations, due in part, to the demand for increased participation of this population in biomedical research. Despite methodological limitations, studies of adolescent capacities to assent have advanced and identified a number of salient psychological and social variables that are key to understanding assent. METHODS: The authors review a subsection of the empirical literature on adolescent assent focusing primarily on asthma and cancer therapeutic research; adolescent competencies to assent to these studies; perceptions of protocol risk and benefit; the affects of various social context variables on adolescent research participation decision making; and the inter-relatedness of these psychological and social factors. RESULTS: Contemporary studies of assent, using multivariate methods and updated approaches to statistical modeling, have revealed the importance of studying the intercorrelation between adolescents' psychological capacities and their ability to employ these capacities in family and medical decision-making contexts. Understanding these dynamic relationships will enable researchers and ethicists to develop assent procedures that respect the authority of parents, while at the same time accord adolescents appropriate decision-making autonomy. CONCLUSIONS: Reviews of empirical literature on the assent process reveal that adolescents possess varying capacities for biomedical research participation decision making depending on their maturity and the social context in which the decision is made. The relationship between adolescents and physician-investigators can be used to attenuate concerns about research protocols and clarify risk and benefit information so adolescents, in concert with their families, can make the most informed and ethical decisions. Future assent researchers will be better able to navigate the complicated interplay of contextual and developmental factors and develop the empirical bases for research enrollment protocols that will support increased involvement of adolescents in biomedical research.

5.
J Adolesc Health ; 51(3): 252-8, 2012 Sep.
Article in English | MEDLINE | ID: mdl-22921135

ABSTRACT

PURPOSE: To examine similarities and differences in the process that parents and adolescents use to make decisions concerning participation in an asthma clinical trial. We hypothesized that a single conceptual model, tested through structural equations modeling, could explain adolescent assent and parent consent for adolescent research participation. METHODS: One hundred nine adolescents enrolled with at least one parent and received an asthma evaluation from a pediatric asthma specialist and then evaluated a hypothetical asthma research protocol. Family members independently evaluated the protocol and made research participation decisions. RESULTS: Perceived risk, benefit, and compensation were direct predictors of participation decisions for parents and adolescents. Adolescents perceived direct study benefit from the relationship with the physician, however parents did not. Parent decisions were most strongly associated with perceived risk, and parents associated discomfort with risk more strongly than did adolescents. Protocol procedures contributed to perceptions of benefit and discomfort for parents and adolescents. CONCLUSIONS: Parent and adolescent research participation decisions are influenced by protocol variables in similar ways, although there are differences that account for disagreements within families. Findings may help investigators develop protocols that appeal to parents and adolescents and highlight issues of particular importance to address during the process of informed consent.


Subject(s)
Asthma/psychology , Patient Participation , Adolescent , Adult , Anti-Asthmatic Agents/therapeutic use , Asthma/drug therapy , Child , Clinical Trials as Topic , Female , Humans , Male , Middle Aged , Parents/psychology , Patient Participation/psychology , Patient Participation/statistics & numerical data , Patient Selection
7.
J Health Psychol ; 17(5): 724-30, 2012 Jul.
Article in English | MEDLINE | ID: mdl-22021275

ABSTRACT

'Research literacy' is proposed as a key concept for advancing societal health. To examine whether improvements in research literacy would affect knowledge of and ethical participation in research, parents of young children received a brief educational intervention designed to enhance their understanding of child research. Results demonstrated that the intervention improved research-related knowledge and increased parents' comfort with their research participation decisions. Moreover, enhanced understanding of child volition increased parents' willingness to enrol their children in research. The proposed research literacy model identifies methods to enhance population knowledge and appreciation of research, strengthening links between scientific advancement and health.


Subject(s)
Biomedical Research , Concept Formation , Health Literacy , Parents/education , Patient Participation , Adult , Child , Decision Making , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Pediatrics , Surveys and Questionnaires , United States
8.
J Reprod Med ; 56(7-8): 339-43, 2011.
Article in English | MEDLINE | ID: mdl-21838165

ABSTRACT

OBJECTIVE: To examine information sources about the safety of medications during pregnancy among predominantly Latina pregnant women. STUDY DESIGN: Consecutively chosen pregnant women (n = 404) attending the University of New Mexico clinics were offered participation and interviewed by a bilingual interviewer. RESULTS: Patient-initiated questions about the safety of medications in pregnancy were addressed most frequently to prenatal care providers (62.1%) and family members (25.2%). The Internet, books and clinic pamphlets/brochures were the most frequent self-identified sources of information. Among the 181 women with medical conditions (44.8%), education, marital status and parity were important predictors of information-seeking behavior. Specifically, women with higher education were 3.0 times (95% CI 1.2-7.5) more likely to seek advice than women with less than a high school education. Single (OR = 0.3; 95% CI 0.1-0.7) and multiparous (OR = 0.4; 95% CI 0.1-0.9) women were less likely to seek advice than married and nulliparous patients, respectively. CONCLUSION: Prenatal care providers need to more actively engage pregnant women in a decision-making process and discuss risks and benefits of medication management during pregnancy.


Subject(s)
Attitude to Health/ethnology , Drug Therapy/statistics & numerical data , Hispanic or Latino/statistics & numerical data , Phytotherapy/statistics & numerical data , Pregnancy Complications/drug therapy , Pregnancy Complications/ethnology , Self Care/statistics & numerical data , Adult , Drug-Related Side Effects and Adverse Reactions , Female , Health Behavior/ethnology , Hispanic or Latino/psychology , Humans , New Mexico/epidemiology , Phytotherapy/adverse effects , Polypharmacy , Pregnancy , Pregnancy Complications/psychology , Prenatal Exposure Delayed Effects/prevention & control , Surveys and Questionnaires , Young Adult
9.
Complement Ther Med ; 18(6): 260-4, 2010 Dec.
Article in English | MEDLINE | ID: mdl-21130363

ABSTRACT

OBJECTIVES: The purpose of this study was to pilot a brief (6-week) group curriculum for providing mindfulness training to obese individuals, called Mindful Eating and Living (MEAL). SETTING AND DESIGN: Participants were recruited through a local Young Men's Christian Association (YMCA) in spring 2006. Data was collected at three time points: baseline, completion of intervention (6 weeks), and 3-month follow-up (12 weeks). INTERVENTION: Six weekly two-hour group classes (with two monthly follow-up classes). Content included training in mindfulness meditation, mindful eating, and group discussion, with emphasis on awareness of body sensations, emotions, and triggers to overeat. MAIN OUTCOME MEASURES: Key variables assessed included changes in weight, body-mass index (BMI), eating behavior, and psychological distress. In addition, physiological markers of cardiovascular risk were evaluated including C-reactive protein (hsCRP), adiponectin, low-density lipoprotein (LDL), and plasminogen activator inhibitor-1 (PAI-1). RESULTS: Ten obese patients enrolled with a mean BMI of 36.9 kg/m² [SD±6.2]. The mean weight was 101 kg/m² and the mean age was 44 years (SD=8.7; range=31-62). Compared to baseline data, participants showed statistically significant increases in measures of mindfulness and cognitive restraint around eating, and statistically significant decreases in weight, eating disinhibition, binge eating, depression, perceived stress, physical symptoms, negative affect, and C-reactive protein. CONCLUSIONS: This study provides preliminary evidence that a eating focused mindfulness-based intervention can result in significant changes in weight, eating behavior, and psychological distress in obese individuals.


Subject(s)
Bulimia/therapy , Depression/therapy , Feeding Behavior , Meditation , Obesity/therapy , Stress, Psychological/therapy , Weight Loss , Adult , Affect , Awareness , C-Reactive Protein/metabolism , Cardiovascular Diseases , Cues , Female , Humans , Male , Middle Aged , Obesity/blood , Obesity/psychology , Pilot Projects , Risk Factors
10.
J Pediatr Psychol ; 35(8): 870-82, 2010 Sep.
Article in English | MEDLINE | ID: mdl-20026568

ABSTRACT

OBJECTIVE: Using structural equation modeling, test a conceptual model of associations between constructs predicting parent and child asthma quality of life. METHODS: Children with a confirmed asthma diagnosis and their parents completed measures of health status and independently reported on psychological functioning, family functioning, and quality of life. RESULTS: Measurement and structural models for predicting parent and child quality of life provided a good fit of data to the conceptual model. Parent and child independent reports of quality of life are dependent upon family functioning and child psychological functioning. Long-term asthma symptom control is the only health status variable that impacts quality of life. CONCLUSIONS: With minor modifications, both parent and child data fit the conceptual model. Child psychological functioning and long-term asthma control jointly contribute to quality of life outcomes. Findings suggest that both acute and long-term asthma health status outcomes have different determinants.


Subject(s)
Asthma/psychology , Attitude to Health , Health Status , Quality of Life/psychology , Adult , Child , Family/psychology , Female , Humans , Male , Models, Psychological , Surveys and Questionnaires
11.
Alcohol ; 43(6): 475-81, 2009 Sep.
Article in English | MEDLINE | ID: mdl-19801277

ABSTRACT

Binge drinking during pregnancy might lead to the development of Fetal Alcohol Spectrum Disorders in the offspring. Latinas are often considered a low-risk group for alcohol abuse, although recent reports indicate that the prevalence of alcohol consumption in this group is increasing due to changing cultural norms. The predictors of alcohol consumption during pregnancy among Latinas are largely unknown. We explored predictors of periconceptional drinking among Latinas (n=155) recruited into an ongoing cohort study at the University of New Mexico. Women were interviewed by a bilingual trained interviewer about any episodes of binge drinking (>or=4 drinks/occasion) a month around their last menstrual period (LMP) and were administered a TWEAK questionnaire. Sociodemographic, lifestyle, and reproductive health characteristics were also ascertained. Predictors of binge drinking were identified by Chi-square test and logistic regression in univariate and multivariable analyses, respectively. Backward selection procedure was used to identify covariates that were independently associated with binge drinking in the final model. The mean age of participants was 27.0+/-5.8 years and 69% were foreign born. In the entire sample, 17.4% of pregnant Latinas admitted at least one binge-drinking episode in the month around their LMP. Results of multivariate analysis indicate that Latinas born in the United States have a much greater risk of binge drinking in the periconceptional period (odds ratio [OR]=3.2; 95% confidence interval [CI]: 1.2, 8.9) compared with foreign-born Latinas. Similarly, Latinas who primarily speak English at home were at much greater risk (OR=3.6; 95% CI: 1.3, 10.5) compared with primarily Spanish-speaking women. No other variables were identified as significant predictors in multivariable models. Our results indicate that more acculturated Latinas are at much greater risk of binge drinking before conception and in early pregnancy compared with less acculturated Latinas. Culturally sensitive interventions should be developed to address risky alcohol consumption among Latinas of reproductive age.


Subject(s)
Acculturation , Alcohol Drinking/ethnology , Ethanol/poisoning , Hispanic or Latino , Adolescent , Adult , Alcohol Drinking/epidemiology , Female , Hispanic or Latino/statistics & numerical data , Humans , New Mexico/epidemiology , Pregnancy
12.
J Asthma ; 46(5): 492-7, 2009 Jun.
Article in English | MEDLINE | ID: mdl-19544171

ABSTRACT

BACKGROUND: The factors influencing family decisions to participate in adolescent asthma research are not well understood. Legal and ethical imperatives require adolescent research participation to be voluntary. While parents and adolescents often agree about research decisions, disagreements may also occur with relative frequency. Physician recommendations are also known to influence research participation decisions. Little attention has been given to how these dynamics may affect adolescents' involvement in decisions to participate in research. OBJECTIVE: To examine the influence of family and physician-investigator relationships and recommendations on adolescent asthma clinical research participation decisions. METHODS: A statewide community sample of 111 adolescents 11 to 17 years of age, with a diagnosis of asthma, and their parents participated in this study. Adolescents received a medical evaluation from an asthma specialist and then the family was offered participation in a hypothetical asthma clinical trial. By random assignment, the research study was presented by either the same or an unknown asthma specialist, and half the families in each group also received affirmative recommendations from the asthma specialist to participate in the hypothetical asthma clinical trial. Parents and adolescents made initial private decisions about participating in the trial. Then, following a family discussion of the clinical trial, a final research participation decision was made. RESULTS: Thirty-three percent of parents and adolescents initially disagreed about the research participation decision. When disagreements occurred, final decisions followed the parents' initial views except when the physician-investigator was known and a recommendation was made. Families with initial disagreement about participating were less likely to enroll when the investigator was unknown or when no recommendation was made. Adolescents who initially disagreed with parents' views were less likely to concur with the final research participation decision, felt less comfortable, and were less likely to feel they influenced the decision. CONCLUSIONS: Parents' views on research decisions take precedence over adolescents' views in most circumstances. Physician-investigator relationships may reduce parental resistance to participation and enhance adolescent decision-making autonomy when research participation is desired by the adolescent.


Subject(s)
Asthma , Clinical Trials as Topic , Decision Making , Parents/psychology , Patient Participation/psychology , Physicians/psychology , Adolescent , Adult , Child , Female , Humans , Informed Consent , Male , Middle Aged , Patient Selection , Physician-Patient Relations , Psychology, Adolescent , Socioeconomic Factors
13.
J Psychosoc Oncol ; 26(4): 91-109, 2008.
Article in English | MEDLINE | ID: mdl-19042274

ABSTRACT

This study examined posttraumatic growth (PTG) in Non-Hispanic White (NHW; n = 132) and Hispanic (HISP; n = 51) women who had been diagnosed with cervical cancer. Participants completed measures of PTG, spirituality, optimism, stage of cancer, and demographics variables. The results showed that women with cervical cancer reported PTG but at lower levels than in studies of women with breast cancer. Greater spirituality and more advanced cancer stage predicted more PTG, but optimism did not predict PTG. HISP women reported higher levels of PTG than NHW women, and greater spirituality in the HISP women partially accounted for the difference.


Subject(s)
Hispanic or Latino/psychology , Hispanic or Latino/statistics & numerical data , Stress Disorders, Post-Traumatic/ethnology , Stress Disorders, Post-Traumatic/psychology , Uterine Cervical Neoplasms/ethnology , Uterine Cervical Neoplasms/psychology , White People/psychology , White People/statistics & numerical data , Adult , Female , Humans , Hysterectomy/psychology , Middle Aged , Stress Disorders, Post-Traumatic/diagnosis , Surveys and Questionnaires , Uterine Cervical Neoplasms/surgery , Young Adult
14.
Explore (NY) ; 4(6): 359-67, 2008.
Article in English | MEDLINE | ID: mdl-18984547

ABSTRACT

OBJECTIVE: The aim of this study was to identify individual differences associated with the willingness to use complementary and alternative medicine (CAM). DESIGN: A questionnaire was administered and the relationship between individual differences and the willingness to use CAM was examined using correlation and multiple regression analyses. PARTICIPANTS: The sample consisted of 276 undergraduate students (64% female) of diverse ethnicity (43% white, 33% Hispanic, 8% Native American, 16% other) and a wide range of incomes. MEASURES: The willingness to use 16 types of CAM was assessed for six categories: whole medical systems, mind-body medicine, biologically based practices, manipulative and body-based practices, energy medicine, and spiritually based practices. The individual differences assessed included age, gender, income, ethnicity, the Big Five personality characteristics, optimism, spirituality, religiosity, and three aspects of emotional intelligence: mood attention, mood clarity, and mood repair. RESULTS: The individual differences accounted for approximately one fifth of the variance in overall willingness to use CAM. Openness to experience, spirituality, and mood attention were the strongest predictors of overall willingness to use CAM and were related to the willingness to use most of the individual types of CAM. Older age or female gender was related to greater willingness to use most of the mind-body medicines. Hispanic ethnicity was related to greater willingness to use curanderismo, and Native American ethnicity was related to greater willingness to use Native American medicine and a spiritual/faith healer.


Subject(s)
Attitude to Health/ethnology , Complementary Therapies/statistics & numerical data , Ethnicity/statistics & numerical data , Health Behavior/ethnology , Patient Acceptance of Health Care/ethnology , Patient Satisfaction/statistics & numerical data , Self Care/statistics & numerical data , Adult , Choice Behavior , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , United States/epidemiology
15.
Int J Behav Med ; 15(3): 194-200, 2008.
Article in English | MEDLINE | ID: mdl-18696313

ABSTRACT

BACKGROUND: While resilience has been defined as resistance to illness, adaptation, and thriving, the ability to bounce back or recover from stress is closest to its original meaning. Previous resilience measures assess resources that may promote resilience rather than recovery, resistance, adaptation, or thriving. PURPOSE: To test a new brief resilience scale. METHOD: The brief resilience scale (BRS) was created to assess the ability to bounce back or recover from stress. Its psychometric characteristics were examined in four samples, including two student samples and samples with cardiac and chronic pain patients. RESULTS: The BRS was reliable and measured as a unitary construct. It was predictably related to personal characteristics, social relations, coping, and health in all samples. It was negatively related to anxiety, depression, negative affect, and physical symptoms when other resilience measures and optimism, social support, and Type D personality (high negative affect and high social inhibition) were controlled. There were large differences in BRS scores between cardiac patients with and without Type D and women with and without fibromyalgia. CONCLUSION: The BRS is a reliable means of assessing resilience as the ability to bounce back or recover from stress and may provide unique and important information about people coping with health-related stressors.


Subject(s)
Adaptation, Psychological , Psychometrics/instrumentation , Stress, Psychological/psychology , Adolescent , Adult , Cardiovascular Diseases/psychology , Female , Fibromyalgia/psychology , Humans , Male , Middle Aged , Pain/psychology , Psychometrics/statistics & numerical data , Sick Role , Surveys and Questionnaires/standards
16.
J Altern Complement Med ; 14(3): 251-8, 2008 Apr.
Article in English | MEDLINE | ID: mdl-18370583

ABSTRACT

OBJECTIVES: The objective of this pilot study was to compare the effects of two mind-body interventions: mindfulness-based stress reduction (MBSR) and cognitive-behavioral stress reduction (CBSR). SUBJECTS: Fifty (50) subjects were recruited from the community and took part in MBSR (n = 36) and CBSR (n = 14) courses. Participants self-selected into MBSR or CBSR courses taught at different times. There were no initial differences between the MBSR and CBSR subjects on demographics, including age, gender, education, and income. INTERVENTION: MBSR was an 8-week course using meditation, gentle yoga, and body scanning exercises to increase mindfulness. CBSR was an 8-week course using cognitive and behavioral techniques to change thinking and reduce distress. DESIGN: Perceived stress, depression, psychological well-being, neuroticism, binge eating, energy, pain, and mindfulness were assessed before and after each course. Pre-post scores for each intervention were compared by using paired t tests. Pre-post scores across interventions were compared by using a general linear model with repeated measures. SETTINGS/LOCATIONS: Weekly meetings for both courses were held in a large room on a university medical center campus. RESULTS: MBSR subjects improved on all eight outcomes, with all of the differences being significant. CBSR subjects improved on six of eight outcomes, with significant improvements on well-being, perceived stress, and depression. Multivariate analyses showed that the MBSR subjects had better outcomes across all variables, when compared with the CBSR subjects. Univariate analyses showed that MBSR subjects had better outcomes with regard to mindfulness, energy, pain, and a trend for binge eating. CONCLUSIONS: While MBSR and CBSR may both be effective in reducing perceived stress and depression, MBSR may be more effective in increasing mindfulness and energy and reducing pain. Future studies should continue to examine the differential effects of cognitive behavioral and mindfulness-based interventions and attempt to explain the reasons for the differences.


Subject(s)
Behavior Therapy/methods , Health Behavior , Mind-Body Therapies/methods , Quality of Life , Stress, Psychological/prevention & control , Adult , Depression/therapy , Exercise , Female , Humans , Male , Meditation , Middle Aged , Mind-Body Relations, Metaphysical , Multivariate Analysis , Pilot Projects , Self Care/methods , Treatment Outcome , Yoga
17.
Pediatrics ; 118(2): e356-62, 2006 Aug.
Article in English | MEDLINE | ID: mdl-16882778

ABSTRACT

OBJECTIVE: There is considerable ethical and legal ambiguity surrounding the role of adolescents in the decision-making process for research participation. Depending on the nature of the study and the regulations involved, adolescents may have independent responsibility for providing informed consent, they may be asked to provide their assent, or they may be completely excluded from the decision-making process. This study examined parent and adolescent perceptions of decision-making authority and sources of influence on adolescent research participation decisions, and examined whether perceptions of influence differed based on adolescent gender and level of research risk. STUDY DESIGN: Adolescents (n = 36) with asthma and their parents reviewed 9 pediatric research protocols, decided whether they would choose to participate, rated the extent they would be responsible for the actual decision, and indicated the ability of family and physician to influence their decisions. Multivariate analyses of variance were used to evaluate differences in perceptions of decision-making authority and sources of influence on the decisions. RESULTS: Adolescents were less willing to cede decision making authority to parents than parents anticipated. Parents and adolescents acknowledged a greater openness to influence from physicians than from family for above minimal risk studies. Parents were more willing to consider opinions from male adolescents. CONCLUSIONS: Adolescents desire responsibility for research participation decisions, though parents may not share these views. Physicians' views on research participation are important to families, especially for above minimal risk studies. Parents may grant more decision-making autonomy to adolescent males than to females. Researchers, physicians, and institutions play a key role in facilitating the ethical enrollment of adolescents into biomedical research. Educational, policy, and oversight processes that support both adolescent autonomy and parental responsibility for research participation decision-making in biomedical research are discussed.


Subject(s)
Asthma/psychology , Clinical Protocols , Decision Making , Parents , Patient Acceptance of Health Care/psychology , Patient Participation/psychology , Physicians , Psychology, Adolescent , Research Subjects/psychology , Adolescent , Anti-Asthmatic Agents/adverse effects , Anti-Asthmatic Agents/pharmacology , Anti-Asthmatic Agents/therapeutic use , Asthma/blood , Asthma/therapy , Attitude of Health Personnel , Blood Chemical Analysis/psychology , Child , Female , Humans , Hydrocortisone/blood , Informed Consent , Learning/drug effects , Male , Nitric Oxide/blood , Parent-Child Relations , Patient Education as Topic , Personal Autonomy , Prejudice , Refusal to Participate/psychology , Research , Research Personnel , Risk , Sex Factors , Third-Party Consent
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