Browsing by Author "Wiehe, Sarah E."
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Item A patient- and parent-centered approach to urinary and fecal incontinence in children and adolescents with spina bifida: understanding experiences in the context of other competing care issue(Elsevier, 2023) Szymanski, Konrad M.; Carroll, Aaron E.; Misseri, Rosalia; Moore, Courtney M.; Hawryluk, Bridget A.; Wiehe, Sarah E.; Pediatrics, School of MedicineIntroduction: Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient-centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal-setting tool to guide incontinence management (Figure). Our aim was to understand patient experiences of UI and FI, and what goals should be included in the tool. Methods: We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>=18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design researchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached. Results: Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/unpleasant incontinence management, (4) inconvenient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identified six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, independence, interruptions at school and social/friends. Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas (FI). Comment: Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. Conclusions: Children with SB experience incontinence as distressing and unpredictable. Incontinence management can be challenging and unreliable. Patient-centered continence goals cluster in domains, indicating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.Item Acceptance of HIV Testing for Children Ages 18 Months to 13 Years Identified Through Voluntary, Home-Based HIV Counseling and Testing in Western Kenya(2010-10) Vreeman, Rachel C.; Nyandiko, Winstone M.; Braitstein, Paula; Were, Martin C.; Ayaya, Samwel O.; Ndege, Samson K.; Wiehe, Sarah E.Background Home-based, voluntary counseling and testing (HCT) presents a novel approach to early diagnosis. We sought to describe uptake of pediatric HIV testing, associated factors, and HIV prevalence among children offered HCT in Kenya. Methods The USAID-AMPATH Partnership conducted HCT in western Kenya in 2008. Children 18 months to 13 years were offered HCT if their mother was known to be dead, her living status was unknown, mother was HIV-infected or of unknown HIV status. This retrospective analysis describes the cohort of children encountered and tested. Results HCT was offered to 2,289 children and accepted for 1,294 (57%). Children were more likely to be tested if more information was available about a suspected or confirmed maternal HIV-infection (for HIV-infected, living mothers OR=3.20, 95% CI: 1.64–6.23), if parents were not in household (OR=1.50, 95% CI: 1.40–1.63), if they were grandchildren of head of household (OR=4.02, 95% CI: 3.06–5.28), or if their father was not in household (OR=1.41, 95% CI: 1.24–1.56). Of the eligible children tested, 60 (4.6%) were HIV-infected. Conclusions HCT provides an opportunity to identify HIV among high-risk children; however, acceptance of HCT for children was limited. Further investigation is needed to identify and overcome barriers to testing uptake.Item Adolescent Burmese Refugees Perspectives on Determinants of Health(Springer, 2018-04) Dixit, Avika; Miner, Emily M.; Wiehe, Sarah E.; McHenry, Megan S.; Pediatrics, School of MedicineOver 70,000 Burmese refugees have resettled in the United States in the past decade. While Burmese adolescents quickly acculturate into American society, their perspectives on health are not well-known. The purpose of this study was to identify adolescent Burmese refugee perspectives on determinants of health and health-related experiences after resettlement. In this qualitative study, Burmese adolescents took photographs depicting health-related experiences that were used as elicitation tools during focus groups. These discussions were recorded, transcribed, and analyzed for themes. Participants described positive determinants of health, including family and church. Rampant tobacco use was identified by the participants as a determinant of poor health within the Burmese community. Notably, the participants were proud to serve as liaisons within their community, despite the stressful nature of this role. Our results highlight the need to screen this population for anxiety, secondary to serving as a liaison for their community, as well as tobacco use.Item Adolescent Health-Risk Behavior and Community Disorder(2013-11) Wiehe, Sarah E.; Kwan, Mei-Po; Wilson, Jeffrey S.; Fortenberry, J. DennisBackground Various forms of community disorder are associated with health outcomes but little is known about how dynamic context where an adolescent spends time relates to her health-related behaviors. Objective Assess whether exposure to contexts associated with crime (as a marker of community disorder) correlates with self-reported health-related behaviors among adolescent girls. Methods Girls (N = 52), aged 14–17, were recruited from a single geographic urban area and monitored for 1 week using a GPS-enabled cell phone. Adolescents completed an audio computer-assisted self-administered interview survey on substance use (cigarette, alcohol, or marijuana use) and sexual intercourse in the last 30 days. In addition to recorded home and school address, phones transmitted location data every 5 minutes (path points). Using ArcGIS, we defined community disorder as aggregated point-level Unified Crime Report data within a 200-meter Euclidian buffer from home, school and each path point. Using Stata, we analyzed how exposures to areas of higher crime prevalence differed among girls who reported each behavior or not. Results Participants lived and spent time in areas with variable crime prevalence within 200 meters of their home, school and path points. Significant differences in exposure occurred based on home location among girls who reported any substance use or not (p 0.04) and sexual intercourse or not (p 0.01). Differences in exposure by school and path points were only significant among girls reporting any substance use or not (p 0.03 and 0.02, respectively). Exposure also varied by school/non-school day as well as time of day. Conclusions Adolescent travel patterns are not random. Furthermore, the crime context where an adolescent spends time relates to her health-related behavior. These data may guide policy relating to crime control and inform time- and space-specific interventions to improve adolescent health.Item Alliances to disseminate addiction prevention and treatment (ADAPT): A statewide learning health system to reduce substance use among justice-involved youth in rural communities(Elsevier, 2021) Aalsma, Matthew C.; Aarons, Gregory A.; Adams, Zachary W.; Alton, Madison D.; Boustani, Malaz; Dir, Allyson L.; Embi, Peter J.; Grannis, Shaun; Hulvershorn, Leslie A.; Huntsinger, Douglas; Lewis, Cara C.; Monahan, Patrick; Saldana, Lisa; Schwartz, Katherine; Simon, Kosali I.; Terry, Nicolas; Wiehe, Sarah E.; Zapolski, Tamika C. B.; Pediatrics, School of MedicineBackground: Youth in the justice system (YJS) are more likely than youth who have never been arrested to have mental health and substance use problems. However, a low percentage of YJS receive SUD services during their justice system involvement. The SUD care cascade can identify potential missed opportunities for treatment for YJS. Steps along the continuum of the cascade include identification of treatment need, referral to services, and treatment engagement. To address gaps in care for YJS, we will (1) implement a learning health system (LHS) to develop, or improve upon, alliances between juvenile justice (JJ) agencies and community mental health centers (CMHC) and (2) present local cascade data during continuous quality improvement cycles within the LHS alliances. Methods/design: ADAPT is a hybrid Type II effectiveness implementation trial. We will collaborate with JJ and CMHCs in eight Indiana counties. Application of the EPIS (exploration, preparation, implementation, and sustainment) framework will guide the implementation of the LHS alliances. The study team will review local cascade data quarterly with the alliances to identify gaps along the continuum. The study will collect self-report survey measures longitudinally at each site regarding readiness for change, implementation climate, organizational leadership, and program sustainability. The study will use the Stages of Implementation Completion (SIC) tool to assess the process of implementation across interventions. Additionally, the study team will conduct focus groups and qualitative interviews with JJ and CMHC personnel across the intervention period to assess for impact. Discussion: Findings have the potential to increase SUD need identification, referral to services, and treatment for YJS.Item Area-level incarceration and STI risk among a cohort of justice-involved adolescents and adults(2014-11) Wiehe, Sarah E.; Rosenman, Marc; Scanlon, Michael L.; Fortenberry, J. Dennis; Aalsma, Matthew C.Background: Living in areas of high incarceration is associated with increased risk of STI; however, STI risk with respect to both this area-level exposure and an individual’s involvement with the justice system is not known. Objective: Among individuals before and after arrest or incarceration, assess the association between area-level incarceration rates and risk of chlamydia, gonorrhea, or syphilis. Methods: Retrospective cohort study of individuals living in Marion County (Indianapolis), Indiana who were arrested or in jail, prison, juvenile detention, or juvenile prison between 2005-2008 (N=97,765). Area-level incarceration exposure was defined by the proportion of person-days incarcerated among the total population*365 within a census block group. A 1-year period was assessed before and after a randomly-selected arrest/incarceration per person. Multivariable logistic regression, controlling for age, race, STI history, and year, was performed to assess chlamydia, gonorrhea, or syphilis risk by quartile area-level incarceration exposure, adjusting for individual clustering and stratifying by gender. Results: Area-level incarceration was associated with increased odds of each STI, with a dose response relationship particularly among those with an arrest or jail stay. Women with a history of arrest or jail/prison stay and living in high incarceration areas had higher odds of STI, compared to men with comparable incarceration history and living in similar areas.Item Ask the parents: Testing the acceptability and usability of a hypospadias decision aid(Elsevier, 2022) Binion, Kelsey; Miller, Andrew; Misseri, Rosalia; Kaefer, Martin; Longtin, Krista; Carroll, Aaron; Wiehe, Sarah E.; Chan, Katherine H.; Communication Studies, School of Liberal ArtsIntroduction: In previous work, we engaged key stakeholders to create a web-based decision aid (DA) prototype to facilitate shared decision making about hypospadias. Objective: The study's objective was to use a human-centered design approach to assess the DA's acceptability and usability and revise it prior to pilot testing. Methods: We recruited English-speaking parents (≥18 years old) of sons with hypospadias (≤5 years) for a two-phase process of semi-structured phone/video interviews to obtain feedback about our DA prototype. DA webpages included: "Hypospadias," "Surgery Basics," "No Surgery," "Family Stories," "Help Me Decide," and "FAQs." In both phases, participants viewed the DA using the "think aloud" technique and completed several validated scales to evaluate its acceptability and usability. In phase 1, we collected feedback about the "Homepage" organization, values clarification methods (VCM), and webpage content. In phase 2, participants searched the DA for answers to hypospadias-related questions, provided feedback on testimonial videos and VCM, and shared their preferences about data visualizations. All interviews were audio recorded. After each phase, transcripts were qualitatively analyzed to identify key areas for revision. Revisions were made between phase 1 and 2 to improve the DA's acceptability and usability. Results: We interviewed 20 participants (10/phase): median age 33.7 years, 60% female, 80% White. Mean score on the Preparation for Decision Making Scale: 86.8 (out of 100). We revised: 1) VCM, focusing on pros/cons of surgery and question prompts, 2) "Homepage," adding webpage descriptions (Extended Summary Figure), 3) menu organization, 4) "Surgery Day" webpage, adding general anesthesia risk information, and 5) "Hypospadias" webpage, adding an icon bar graph to help participants visualize statistics. Participants thought the testimonial videos were relatable and the VCMs would prepare them for their visit with their child's urologist. Discussion: Ours is the first parent-centered DA developed and pre-tested for hypospadias. Using validated usability and acceptability scales, participants highly rated the DA in helping them arrive at a decision about surgery. Study limitations include the sample's lack of diversity (i.e., educated, health literate) and participants already decided about their son's hypospadias management before enrolling. To learn more about the DA's usability and acceptability, we plan to pilot test it in a clinical setting. Conclusions: Participants found our DA informative in understanding hypospadias. There was a high perceived level of preparation for hypospadias decision making. Participatory research methods, such as "think aloud," may be helpful when testing DAs as they privilege the patient's experience.Item Assessing Individuals’ Exposure to Environmental Conditions Using Residence-Based Measures, Activity Location-Based Measures, and Activity Path-Based Measures(Wolters Kluwer, 2019-03) Morrison, Christopher N.; Byrnes, Hilary F.; Miller, Brenda A.; Kaner, Emily; Wiehe, Sarah E.; Ponicki, William R.; Wiebe, Douglas J.; Pediatrics, School of MedicineBackground: Many approaches are available to researchers who wish to measure individuals' exposure to environmental conditions. Different approaches may yield different estimates of associations with health outcomes. Taking adolescents' exposure to alcohol outlets as an example, we aimed to (1) compare exposure measures and (2) assess whether exposure measures were differentially associated with alcohol consumption. Methods: We tracked 231 adolescents 14-16 years of age from the San Francisco Bay Area for 4 weeks in 2015/2016 using global positioning systems (GPS). Participants were texted ecologic momentary assessment surveys six times per week, including assessment of alcohol consumption. We used GPS data to calculate exposure to alcohol outlets using three approach types: residence-based (e.g., within the home census tract), activity location-based (e.g., within buffer distances of frequently attended places), and activity path-based (e.g., average outlets per hour within buffer distances of GPS route lines). Spearman correlations compared exposure measures, and separate Tobit models assessed associations with the proportion of ecologic momentary assessment responses positive for alcohol consumption. Results: Measures were mostly strongly correlated within approach types (ρ ≥ 0.7), but weakly (ρ < 0.3) to moderately (0.3 ≤ ρ < 0.7) correlated between approach types. Associations with alcohol consumption were mostly inconsistent within and between approach types. Some of the residence-based measures (e.g., census tract: β = 8.3, 95% CI = 2.8, 13.8), none of the activity location-based approaches, and most of the activity path-based approaches (e.g., outlet-hours per hour, 100 m buffer: β = 8.3, 95% CI = 3.3, 13.3) were associated with alcohol consumption. Conclusions: Methodologic decisions regarding measurement of exposure to environmental conditions may affect study results.Item Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children with Cancer and Their Caregivers(Wolters Kluwer, 2020-11) Mueller, Emily L.; Cochrane, Anneli R.; Moore, Courtney M.; Jenkins, Kelli B.; Bauer, Nerissa S.; Wiehe, Sarah E.; Pediatrics, School of MedicineBackground: Caregivers of children with cancer can experience stress when seeking care in the emergency department (ED). We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. Methods: A qualitative evaluation of ED visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age: 11 to 21 y) currently receiving therapy for cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. Results: A total of 25 toolkits were received (7 children, 18 caregivers), with about three quarters of participants living >1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decision-making regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-to-provider and provider-to-caregiver/patient communication. Conclusions: The information gained from this study has the potential to inform a tool to support this population in planning for and managing emergent medical issues. This tool has the potential to improve patient and caregiver satisfaction, patient-centered outcomes, and clinical outcomes.Item Association of environmental indicators with teen alcohol use and problem behavior: Teens' observations vs. objectively-measured indicators(Elsevier, 2017-01) Byrnes, Hilary F.; Miller, Brenda A.; Morrison, Christopher N.; Wiebe, Douglas J.; Woychik, Marcie; Wiehe, Sarah E.; Medicine, School of MedicineMost prior studies use objectively measured data (e.g., census-based indicators) to assess contextual risks. However, teens' observations might be more important for their risk behavior. OBJECTIVES: 1) determine relationships between observed and objective indicators of contextual risks 2) determine relations of observed and objective indicators with teen alcohol use and problem behavior. Teens aged 14-16 (N=170) carried GPS-enabled smartphones for one month, with locations documented. Ecological momentary assessment (EMA) measured teens' observations via texts regarding risk behaviors and environmental observations. Objective indicators of alcohol outlets and disorganization were spatially joined to EMAs based on teens' location at the time of the texts. Observed and objective disorganization, and objective indicators of alcohol outlets were related to alcohol use. Observed disorganization was related to problem behavior, while objective indicators were unrelated. Findings suggest the importance of considering teens' observations of contextual risk for understanding influences on risk behavior and suggest future directions for research and prevention strategies.