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Systematic Review and Meta-Analysis of Effectiveness of Acceptance and Commitment Therapy in Patients With Breast Cancer

imageBackground The physical and psychological well-being of patients with breast cancer is an important global issue. Acceptance and commitment therapy (ACT) aims to equip patients with the skills to respond and adapt to difficult circumstances. However, the extent of the physical and psychological outcomes of this therapy in patients with breast cancer remains unclear. Objectives The aim of the study was to summarize available evidence and assess the efficacy of ACT on physiological and psychological outcomes in patients with breast cancer. Methods Published randomized controlled studies were identified in MEDLINE, PsycInfo, Embase, Web of Science, CINAHL, and CNKI from inception to December 2019 and Cochrane Library, AMED, and Clinical from inception to September 2020. Methodological rigor was assessed by two reviewers using the Cochrane Handbook for Systematic Review of Interventions. Sufficient data were statistically pooled with review manager; otherwise, a narrative summary was used. Results Thirteen trials were included in the review. Methodological quality varied across the studies. Meta-analyses demonstrated that ACT had moderate to large effects on reducing anxiety, depression, and stress and improving hope. Sensitivity analyses reached results similar to those of the meta-analyses. However, the effects of ACT on the physiological symptoms, fear of cancer recurrence, and psychological flexibility of patients with breast cancer remain inconclusive. Discussion ACT has beneficial effects on the anxiety, depression, stress, and hope of patients with breast cancer. The evidence of ACT on physiological symptoms, fear of cancer recurrence, and psychological flexibility needs to be treated with caution. Further studies are needed and should consider different delivery forms and also explore the mechanisms of each component of ACT under different cultural contexts.

Using Photo-Elicitation Interviews With Families of Children and Adolescents With Chronic Illness

imageBackground Despite the increasing number of studies using photo-elicitation for data collection in qualitative research, there is a need to further explore its use among families of children and adolescents living with chronic illness. Objective The aim of this study was to discuss methodological and pragmatic considerations about the use of photo-elicitation interviews (PEIs) for data collection with families of children and adolescents living with chronic illness. Methods We discussed methodological aspects of using PEIs as reported in publications. A search of the literature was carried out to identify articles presenting information on methodological aspects of the use of PEIs in qualitative data collection, regardless of age group. In pursuit of complementing the evidence with pragmatic considerations of using PEIs, we illustrate with an example of a recent qualitative study of our own that aimed to understand the narratives about hope of families of children and adolescents living with chronic illness. Results We synthesized common aspects that need to be considered when using PEIs with different populations: ethical issues, cameras, guidance, and interviews. We also presented our experience of using the PEI technique to collect data from families. Because of our experience, we denominate our method as the “family photo-elicitation interview” (FPEI). Our method goes beyond the PEI technique because it integrates aspects of family nursing theories when conducting interviews with families. FPEIs strengthen family interaction and allow family members to share their perspectives. Discussion We present a new perspective of PEIs—the FPEI—in the pediatric context. Previous studies have not addressed considerations about using PEIs for families. We hope our results assist novice researchers in planning and implementing FPEIs in qualitative research. We recommend that researchers explore the use of FPEIs in other contexts, such as geriatrics or palliative care.

Associations Among Nitric Oxide and Enkephalinases With Fibromyalgia Symptoms

imageBackground Fibromyalgia (FM) is a complex syndrome of uncertain etiology, characterized by the presence of widespread pain. Both nitric oxide and enkephalinases modulate pain perception. Objectives The aim of this study was to evaluate the relationships among serum nitric oxide levels, oxytocinase activity, and enkephalin-degrading aminopeptidase (EDA) activity with pain-related clinical manifestations in women with FM. Methods We performed an observational case study in a population of 58 women diagnosed with FM. Serum nitric oxide levels were analyzed by an ozone chemiluminescence-based assay. Both serum oxytocinase and EDA activities were fluorometrically determined. Pain threshold and pain magnitude were evaluated using the PainMatcher. The pressure pain thresholds were measured using a digital pressure algometer. We used a visual analog scale, the Central Sensitization Inventory, the Revised Fibromyalgia Impact Questionnaire, and the Beck Anxiety Inventory to assess the global level of pain, the symptoms associated with the central sensitization syndrome, the severity of FM, and the anxiety level, respectively. Results Multiple linear regression analysis adjusted by age, body mass index, and menopause status revealed significant associations between nitric oxide levels and dominant occiput pressure pain thresholds, nondominant occiput pressure pain thresholds, and FM effects. Significant associations of oxytocinase activity with the visual analog scale and dominant knee pressure pain thresholds were also found. Moreover, results showed a significant association between high EDA activity levels and dominant second-rib pressure pain thresholds. Discussion Our data have shown significant relationships of serum nitric oxide levels and oxytocinase and EDA activities with some body pressure pain thresholds, the daily activity level, and the global intensity of pain in women with FM. These results suggest that pain, which is the main symptom of this syndrome, may be related to alterations in nitric oxide levels and in oxytocinase and EDA activities in patients with FM.

Voicing Jordanian Adolescents’ Suicide

imageBackground Studies focusing on adolescent suicide in Arab countries are particularly scarce, with the few available undertaken from within an epidemiological paradigm. Objective This study aimed to understand Jordanian adolescents’ perceptions, beliefs, and attitudes toward suicide. Methods A qualitative design using 12 dual-moderator focus group discussions was conducted in public schools. Participants were selected from the three main regions of the country (rural southern, urban central, and suburban northern). Participants included Jordanian adolescent boys and girls, aged 14–17 years, who reported experiencing mild to moderate depressive symptoms. A relational content analysis approach was used for coding data, and a content analysis was used to identify salient thematic categories. Data were analyzed using NVivo software. Results Four themes emerged, including perceived risk factors, perceived protective factors, active and passive suicidal ideations, and e-games and Internet influences. Main risk factors were depression; anxiety; stigma, shame, and isolation; family issues; life pressures; and guilt. Conversely, religiosity, perceived positive family functioning, and availability of long-term goals seemed to confer resilience to adolescents’ suicidal ideation and behavior. Passive suicidality (having death wishes without any plans to complete suicide) was noticed most among participants who feared jeopardizing the family’s reputation if they committed suicide. Several boys with active suicidal ideations used the Blue Whale Challenge e-game to learn how to complete suicide and relinquish their problems. Discussion Suicide is a multifactorial problem requiring multimodal strategies. Evidence from this research suggests that those most passionate about the outcome of interest are encouraged to redouble efforts to reduce modifiable risk factors, enrich protective factors, target the underlying psychiatric illness that informs suicidal ideations and behavior, and research the effect of social media and Internet activity more deeply. Parents are advised to monitor the online activities of their children and familiarize themselves with the digital applications they use.

Self-Efficacy, Pain Intensity, Rheumatic Disease Duration, and Hand Functional Disability on Activities of Daily Living

imageBackground Knowledge regarding the possible influence of self-efficacy, pain intensity and disease duration on hand functional disability could promote new intervention strategies for activities of daily living (ADLs) in patients with rheumatic disease (RD). These approaches could prevent the health problems and socioeconomic costs associated with these diseases. Objective The aims of this study were to evaluate if there are differences between the levels of perceived self-efficacy, pain intensity and disease duration among people with RD and non-RD diseases, and to analyze if hand functional disability in ADLs is related to self-efficacy, pain intensity and disease duration in a sample of patients with RD. Methods A multicenter, observational, cross-sectional study was conducted on a total sample of 335 participants over 50 years old (176 patients with RD and 159 individuals with non-RD). The Duruöz Hand Index, the General Perceived Self-Efficacy Scale, the Rheumatic Diseases Self-Efficacy Scale (RDS-ES), the Visual Analog Scale (VAS), and the mean time of evolution in years of the disease (disease duration) were used to analyze the possible relationships surrounding hand functional disability in ADLs. Results The comparison analysis showed significant differences between the RD/non-RD sample for the General Perceived Self-Efficacy Scale, RDS-ES, and VAS scores (p

Prediction of Changes in Adherence to Secondary Prevention Among Patients With Coronary Artery Disease

imageBackground Healthcare providers are concerned about adherence to provider recommendations in coronary artery disease management. Seeking patient-related factors influencing changes in adherence over time is necessary for formulating suitable intervention measures—especially among diverse populations. Objective To explore whether health literacy, self-efficacy, and disease knowledge predict changes in adherence over time (between baseline and 3 months) to secondary prevention recommendations for Chinese coronary artery disease patients. Methods A longitudinal study was performed for 662 patients following percutaneous coronary intervention in China. Self-reported data were collected at baseline during hospitalization and at a 3-month telephone follow-up. Variables included demographics, health literacy, self-efficacy, disease knowledge, and adherence to secondary prevention recommendations for medication taking and a heart-healthy lifestyle. Multinomial logistic regression identified predictors of adherence changes over time. Results Patients were categorized into three groups: sustained/declined to nonadherence between baseline and 3 months, improved to adherence, and sustained adherence. The number of patients in sustained/declined to nonadherence group was small. Absence of stents predicted sustained/declined to nonadherence to medication and lifestyle over time. Health literacy was not associated with adherence changes over time. Higher self-efficacy scores were associated with lower likelihood of sustained/declined to nonadherence to a healthy lifestyle over time, whereas higher disease knowledge scores were associated with higher sustained/declined to nonadherence to medication. Conclusions Adherence to secondary prevention 3 months after discharge was relatively good in Chinese patients with coronary artery disease who received percutaneous coronary intervention. Absence of stents and lower self-efficacy can predict the poor adherence changes, which should be considered in formulating follow-up care.

Cardiopulmonary Endurance of Hospitalized Older Adults With Chronic Obstructive Pulmonary Disease

imageBackground Chronic obstructive pulmonary disease (COPD) could lead to poor cardiopulmonary endurance, which affects quality of life and increases the risk of rehospitalization or mortality. However, studies investigating associated factors of cardiopulmonary endurance for COPD inpatients are scant. Objective The aim of the study was to investigate whether and how age, gender, COPD severity, body composition, dyspnea, respiratory muscle strength, and lower limb muscle strength and endurance were related to cardiopulmonary endurance in elderly inpatients with COPD. Methods This was a cross-sectional study using a systematic sampling of older inpatients. Data of demographic characteristics such as age, gender, and disease severity were collected, and body mass index was calculated. Degrees of dyspnea were assessed by the modified Medical Research Council Dyspnea Scale. Respiratory muscle strength was reflected by the maximal inspiratory pressure and the maximal expiratory pressure. Lower limb muscle strength and endurance were assessed by a handheld dynamometer and a 30-second sit-to-stand test, respectively. Finally, cardiopulmonary endurance was assessed by a 6-minute walk test. Results A total of 83 older COPD inpatients participated. The mean age was 74.01 ± 6.93 years. Cardiopulmonary endurance was associated with age, COPD severity, dyspnea, respiratory muscle strength, lower limb muscle strength, and endurance. Predictors of cardiopulmonary endurance were disease severity, dyspnea, and lower limb muscle endurance. These predictors explained 53% of the variance in cardiopulmonary endurance in older inpatients with COPD. Discussion Cardiopulmonary endurance of hospitalized older adults with COPD should be strengthened by improving conditions of disease severity, dyspnea, and lower limb muscle endurance.

Knowledge of the Human Papillomavirus by Social Stratification Factors

imageBackground Social determinants of health explain most health inequities. Intermediate determinants dictate differences in the exposure and vulnerability of people based on social stratification. Vulnerable women (lower education level, older age, uninsured, etc.) have lower adherence to recommended Pap smear screening guidelines. However, a gap remains concerning the effect of social determinants on human papillomavirus (HPV) infection. Objectives The aim of this study was to analyze the association between the level of knowledge about HPV infection and HPV vaccines with education level and residential setting among a sample of Spanish women. Methods A cross-sectional study at six primary care centers (Cantabria, Spain) was performed. All women >21 years consecutively attended by midwives for routine follow-up were invited to participate during the study period (2015–2016) until a convenience sample was recruited. Participants completed an anonymous questionnaire addressing sociodemographic variables (age, education level, and residential setting) and the level of knowledge regarding HPV infection, including general knowledge about infection and knowledge about the HPV vaccine. Associations between education level (primary, secondary, and university) and residential setting (urban, semiurban, and rural) with the level of knowledge of HPV infection and HPV vaccine were calculated using adjusted logistic regressions. Dose–response associations were estimated based on p-trend. Results Compared to university women, a lower education level was associated with limited or no knowledge of either HPV infection or the HPV vaccine. Women living in rural areas poorly identified “promiscuity” as a risk factor of HPV infection and “the use of condoms” as a protective factor. Moreover, living in rural areas was associated with limited or no knowledge of HPV infection and HPV vaccine. There were significant dose–response trends; those who were more educated and living in more urban areas had more knowledge about either HPV infection or the vaccine. Discussion In our sample, the level of knowledge of HPV infection and HPV vaccine was high. However, vulnerable women, defined by a lower education level and living in rural areas, presented a greater lack of knowledge regarding HPV infection and the HPV vaccine.

Self-Management Behaviors, Glycemic Control, and Metabolic Syndrome in Type 2 Diabetes

imageBackground Diabetes self-management and glycemic control are suboptimal among Chinese patients with Type 2 diabetes with a large proportion of patients identified with metabolic syndrome. Objectives Based on social cognitive theory, this study examines the effect of selected personal, behavioral, and environmental factors on self-management behaviors, glycemic control, metabolic syndrome and Type 2 diabetes. Methods A cross-sectional study was conducted among 207 Chinese with Type 2 diabetes living in a suburban area of Beijing, China. Regression models were applied to examine the effect of selected personal, behavioral, and environmental factors on self-management behaviors, glycemic control, and metabolic syndrome. The relationship among individual self-management behaviors, glycemic control, and metabolic syndrome was also examined. Results Self-efficacy was significantly associated with all self-management behaviors. Social support was related to overall self-management, diabetes knowledge was related to diet, and depressive symptoms was related to self-monitoring. Problem-solving and self-management behaviors related to medication adherence and diet were significant correlates of glycemic control. Health literacy and self-management behaviors related to physical activity were correlates of metabolic syndrome. Discussion Findings suggest that a multifactorial approach may be beneficial when providing care for Chinese with Type 2 diabetes. In addition, these findings provide support for developing and testing tailored interventions that address problem-solving, health literacy, and self-efficacy, among other factors, to help patients achieve optimal glycemic control and thereby reduce their risk for metabolic syndrome and related complications.

Challenges and Strategies for Conducting Research With Grandparent–Grandchild Dyads

imageBackground Given a marked increase in the number of grandparents who play a caregiving role for their grandchildren, there is a parallel urgency for more research involving grandparent–grandchild dyads. Objective The aim of this study was to describe methodological challenges we encountered when conducting grandparent–grandchild dyadic research, some of which were challenges specific to working with dyads where the grandparents were caregivers to the child participants and others, which were challenges of a sort that might be encountered in any research involving data collection with multigenerational family units and, in particular, multigenerational family units including older adults. Methods During and after an observational study conducted by the researchers involving grandparent–grandchild dyads, we explored challenges we encountered and strategies for improving our research outcomes. Results We found several challenges specific to grandparent–grandchild dyads, including complications with reaching legal guardians to obtain permission for child participants; collecting accelerometer data from grandchildren was difficult, particularly if the grandparents did not live with their grandchildren; and participants who had various preferences for data collection methods. We also found challenges that might be found with any family context dyadic research, particularly involving older adults and across multiple generations, including relatively low follow-up response rates from those grandparents who initially expressed interest and a need for an extended data collection period. We employed targeted strategies to overcome those obstacles, and in this article, we describe the outcomes of those strategies. Discussion Recommendations from our results include the following: (a) find a way to involve the parents and/or legal guardian as early as possible, (b) have multiple team members involved in recruitment/data collection, (c) be flexible about data collection methods, (d) use flexible scheduling, and (e) use multiple simultaneous recruitment activities/multiple advertisement channels. Additional strategies include enhancing children’s sense of control during the consent process, simplifying study procedures, considering usability when creating online data surveys, and identifying power dynamics within the families. Conclusion The insights we gained will be useful for informing future family context dyadic research, in particular, research involving grandparent–grandchild dyads.

Decreasing Barriers to Research Utilization Among Labor and Delivery Nurses

imageBackground Intermittent fetal monitoring (IFM) is a recommended strategy for intrapartum fetal heart rate assessment in low-risk pregnancies; however, this “high touch, low tech” approach is underutilized. Objective The aim of the study was to examine the relationships between labor and delivery nurses’ intellectual capital and their perceptions of barriers to research utilization in the work setting. Methods A cross-sectional correlational design using data derived from a larger study of labor and delivery nurses (N = 248) was used. Covell’s theory of nursing intellectual capital was used as the conceptual and analytic framework to examine labor and delivery nurses’ intellectual capital and their perceived barriers to research utilization. Results Nurses who receive paid time off from their employer to attend conferences (p

The Use of Closing Questions in Qualitative Research: Results of a Web-Based Survey

imageBackground Scarce and differing reasons for including closing questions in qualitative research exist, but how data generated from these questions are used remains uncertain. Objectives The purpose of the study was to understand if and how researchers use closing questions in qualitative research, specifically the research questions were: (a) “Why do qualitative researchers include or exclude closing questions during interviews?” and (b) “How do qualitative researchers use data from closing questions?” Methods A qualitative descriptive design using a single, asynchronous, web-based, investigator-designed survey containing 14 items was used to collect data. Convenience and snowball sampling were used to recruit participants. Data were analyzed using descriptive statistics and qualitative content analysis. Codes were developed from the qualitative data. Subcategories were derived from similar codes, and these subcategories were further scrutinized and were used to create broad categories. Results The number of respondents per question ranged from 76 to 99; most identified nursing and sociology as their academic disciplines, lived in the United States, and were involved in qualitative research for 1–10 years. Data, the interview, the interviewee, and the interviewer were broad categories to emerge as reasons for including closing questions. Only one respondent reported a reason for excluding closing questions. The uses of closing question data were described in four broad categories: analysis, data, the interview guide, and inquiry. Discussion Researchers frequently included closing questions in qualitative studies. The reasons for including these questions and how data are used vary, and support limited previously published literature. One unique reason, adding “new breath” to the interview, emerged. Study findings can aid qualitative researchers in deciding whether to include closing questions.

Experience of Perinatal Death From the Father’s Perspective

imageBackground Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. Objective The aim of the study was to understand and describe the meaning of perinatal death in a sample of fathers from northeastern Colombia. Methods Using purposive and snowball sampling approaches, we identified 15 participants from northeastern Colombia who agreed to participate. We used a descriptive phenomenological design. Data were collected through in-depth, semistructured interviews. Results Men suffer in solitude and hide their emotions as they feel the need to be the main supporters of their partners. Three major themes emerged: experience of loss, coming to terms with an irreparable loss, and overcoming the loss. Discussion While women are receiving care, health staff may neglect or forget men. Men suffer alone while seeking ways of attunement with their partners’ emotions to support them during the grieving process. Fathers can overcome and adjust to the loss when they transcend it and find new meaning. Men felt neglected and marginalized at hospitals while their partners were receiving treatment. Health professionals should recognize and acknowledge the pain of fathers who face perinatal death and include them as much as possible in the standard of care. The results identify opportunities for healthcare providers in clinical and outpatient settings to acknowledge the importance of men within the context of pregnancy and to learn about their pain and suffering when they face a perinatal death.

Psychometrics of the SCL-90-R and Development and Testing of Brief Versions SCL-45 and SCL-9 in Infertile Couples

imageBackground Although infertile couples are mentally healthy, dealing with infertility and assisted reproductive technology (ART) treatment is usually associated with psychological distress. It would therefore be useful to have short, multidimensional instruments to be able to identify people who present more intense emotional reactions and follow up their emotional distress throughout the ART. Objectives The goals of the study were to analyze the psychometric adequacy of the original 90-item version of the Symptom Checklist (SCL-90) in a sample of Spanish women and their partners undergoing ART, as well as to develop and analyze two brief versions of the SCL-90, given the absence of adequate short versions for this population. Methods A cross-sectional design for patients and their partners in the process of ART through in vitro fertilization was used. The two brief scales were obtained, which took into account the levels of variance explained by the items and confirmatory factor analysis. Results Two brief instruments were developed. The first, with 45 items (SCL-45-I Infertility), includes nine subdimensions: Somatization, Interpersonal Sensitivity, Obsessive-Compulsive Disorder, Depression, Anxiety, Hostility, Paranoid Ideation, Phobic Anxiety, and Psychoticism. The second instrument contains nine items (SCL-9-I or Global Severity Index [GSI]), one item for each dimension. Both instruments were psychometrically adequate (SCL-45-I: χ2/df = 7.24, RMSEA = .057, 95% CI [.056, .059], CFI = .97, NNFI = .97, SRMR = .049; SCL-9-I: χ2/df = 9.66, RMSEA = .068, 95% CI [.061, .076], CFI = .97, NNFI = .96, SRMR = .035). Measurement invariance analysis by gender was conducted, and the instruments were shown to be suitable for both men and women. Discussion The suitability of the SCL-90-R for use in ART was verified, and two valid instruments—useful and easy to use for nurses, psychologists, and other care providers—were developed.

A Multigroup Analysis of the Effect of Cognitive Appraisal on Nurses' Psychological Distress

imageBackground Cognitive appraisal constitutes an important mechanism in the process of human adaptation to work environment and occupational stress. In this domain, nursing professionals are one of the occupational groups most affected by job stress, suffering high levels of psychological distress. Objectives The aims of this study were to analyze the moderator effect of shift work and the type of job contract on the relationship between work cognitive appraisal and nurses' psychological distress and to explore the interaction effect of the two moderator variables on that relationship. Methods A sample comprised of 2,310 Portuguese registered nurses completed a sociodemographic and professional questionnaire: the Primary and Secondary Cognitive Appraisal Scale and the General Health Questionnaire-12. Data were analyzed through structural equation modeling and multigroup analyses considering the following groups: (a) “shift” versus “nonshift work”; (b) “precarious job contract” versus “nonprecarious job contract”; and (c) “shift and precarious” versus “shift and nonprecarious” versus “nonshift and precarious” versus “nonshift and nonprecarious.” Results Data confirmed the invariance for the measurement model, but the structural model presented a significantly worse adjustment for all grouping variables, showing the moderator effect of shift work and job contract and of their interaction. Difference tests in structural path coefficients revealed that shift work moderated the relationship between challenge perception and psychological distress—which was stronger for shift work nurses—and that a higher threat perception was related to greater psychological distress, especially in nurses with a precarious job contract. Among the four categories of interaction between job contract and shift work, cognitive appraisal became central in predicting nurses' mental health, explaining more variance in the group that did shift work and had a nonprecarious job contract. Discussion The study results highlight the need to develop occupational health intervention programs to promote nurses' mental health, focusing on reducing work perception as a threat and on making nurses' jobs more challenging and controllable.

Efficacy of a Breastfeeding Pain Self-Management Intervention: A Pilot Randomized Controlled Trial

imageBackground Over 90% of women experience pain during breastfeeding initiation and lack strategies to self-manage breast and nipple pain. Guided by the Individual and Family Self-Management Theory, a breastfeeding self-management (BSM) intervention targeted women's knowledge, beliefs, and social facilitation to manage their breast and nipple pain and achieve their breastfeeding goals. Objectives The purpose of this longitudinal pilot randomized control trial (RCT) was to test the preliminary efficacy of the BSM intervention on general and specific pain related to breastfeeding. Methods Sixty women intending to breastfeed were approached within 48 hours of delivery to participate in this pilot RCT (30 randomized to the BSM intervention and 30 randomized to the control group). All participants provided baseline data before discharge and pain and breastfeeding measures at 1, 2, and 6 weeks. Participants in the BSM intervention group received educational modules addressing breast and nipple pain and biweekly, text-based nurse coaching and completed a daily breastfeeding journal. Results Women in the BSM intervention group reported significantly less breast and nipple pain at 1 and 2 weeks using a visual analog scale (p

Best Practices for Obtaining Genomic Consent in Pediatric Traumatic Brain Injury Research

imageBackground Precision health relies on large sample sizes to ensure adequate power, generalizability, and replicability; however, a critical first step to any study is the successful recruitment of participants. Objectives This study seeks to explore how the enrollment strategies used in a parent study contributed to the high consent rates, establish current best practices that can be used in future studies, and identify additional factors that contribute to consent into pediatric traumatic brain injury biobanks. Methods Retrospective secondary analysis of data from a parent study with high consent rates was examined to explore factors affecting consent into biobanking studies. Results Of the 76 subjects who were approached, met the eligibility criteria, and reviewed the consent form, only 16 (21.1%) declined to participate. The consented group (n = 60) represents 64.5% of those who met the eligibility criteria upon initial screening (n = 93) and 78.9% of those with confirmed eligibility (n = 76). Analysis of screening data suggested there were no major barriers to consenting individuals into this pediatric traumatic brain injury biobank. Discussion There were no demographic or research-related characteristics that significantly explained enrollment. Ethically, to obtain true informed consent, parents need to understand only their child’s diagnosis, prognosis, and medical care, as well as the purpose of the proposed research and its risks and benefits. Researchers need to implement best practices, including a comprehensive review of census data to identify eligible participants to approach, a prescreening protocol, and effective consenting process to obtain informed consent so that precision care initiatives can be pursued.