Christina Nicolaidis

Association of Childhood Physical and Sexual Abuse with Intimate Partner Violence, Poor General Health and Depressive Symptoms among Pregnant Women

Objective We examined associations of childhood physical and sexual abuse with risk of intimate partner violence (IPV). We also evaluated the extent to which childhood abuse was associated with self-reported general health status and symptoms of antepartum depression in a cohort of pregnant Peruvian women. Methods In-person interviews were conducted to collect information regarding history of childhood abuse and IPV from 1,521 women during early pregnancy. Antepartum depressive symptomatology was evaluated using the Patient Health Questionnaire-9. Multivariable logistic regression procedures were used to estimate adjusted odds ratios (aOR) and 95% confidence intervals (95%CI). Results Any childhood abuse was associated with 2.2-fold increased odds of lifetime IPV (95%CI: 1.72–2.83). Compared with women who reported no childhood abuse, those who reported both, childhood physical and sexual abuse had a 7.14-fold lifetime risk of physical and sexual IPV (95%CI: 4.15–12.26). The odds of experiencing physical and sexual abuse by an intimate partner in the past year was 3.33-fold higher among women with a history of childhood physical and sexual abuse as compared to women who were not abused as children (95%CI 1.60–6.89). Childhood abuse was associated with higher odds of self-reported poor health status during early pregnancy (aOR = 1.32, 95%CI: 1.04–1.68) and with symptoms of antepartum depression (aOR = 2.07, 95%CI: 1.58–2.71). Conclusion These data indicate that childhood sexual and physical abuse is associated with IPV, poor general health and depressive symptoms in early pregnancy. The high prevalence of childhood trauma and its enduring effects of on women’s health warrant concerted global health efforts in preventing violence.

Latino Parents' Perspectives on Barriers to Autism Diagnosis

OBJECTIVEnLatino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children.nnnMETHODSnFive focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis.nnnRESULTSnParents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their childs early behaviors, deny that a problem existed, and lose trust in the medical system.nnnCONCLUSIONSnAdditional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.

“We’ve Not Gotten Even Close to What We Want to Do”: a Qualitative Study of Early Patient-Centered Medical Home Implementation

ABSTRACTBACKGROUNDThe Veterans Health Administration (VA) Patient Aligned Care Teams (PACT) initiative is designed to deliver a medical home model of care associated with better patient outcomes, but success will depend in part on the model’s acceptability and sustainability among clinic employees.OBJECTIVEWe sought to identify key themes in the experience of primary care providers, nurse care managers, clerical and clinical associates, and clinic administrators implementing PACT, with the aim of informing recommendations for continued development of the model and its components.DESIGNObservational qualitative study; data collection from 2010 to 2013, using role-stratified and team focus groups and semi-structured interviews.PARTICIPANTS241 of 337 (72xa0%) identified primary care clinic employees in PACT team or administrative roles, from 15 VA clinics in Oregon and Washington.APPROACHData coded and analyzed using conventional content analysis techniques.KEY RESULTSOverall, participants were enthusiastic about the PACT concept, but felt necessary resources for success were not yet in place. Well-functioning teams were perceived as key to successful implementation. Development of such teams depended on adequate staffing, training, and dedicated time for team development. Changes within the broader VA system were also seen as necessary, including devolving greater control to the clinic level and improving system alignment with the PACT model. PACT advocates from among clinic and institutional level leadership were identified as a final key ingredient for success. These themes were consistent despite differences in clinic settings and characteristics.CONCLUSIONSPACT implementation faced significant challenges in its early years. Realizing PACT’s transformative potential will require acting on the needs identified by clinic workers in this study: ensuring adequate staffing in all team roles, devoting resources to in-depth training for all employees in communication and other skills needed to maximize team success, and aligning the broader VA hospital system with PACT’s decentralized, team-based approach.

Primary Care for Adults on the Autism Spectrum

Autism spectrum disorder (ASD) is defined by differences in social communication and restricted, repetitive patterns of behavior, interests, or activities. Skills and challenges can change depending on environmental stimuli, supports, and stressors. Quality of life can be improved by the use of accommodations, assistive technologies, therapies to improve adaptive function or communication, caregiver training, acceptance, access, and inclusion. This article focuses on the identification of ASD in adults, referrals for services, the recognition of associated conditions, strategies and accommodations to facilitate effective primary care services, and ethical issues related to caring for autistic adults.

Getting Performance Metrics Right: A Qualitative Study of Staff Experiences Implementing and Measuring Practice Transformation

ABSTRACTBACKGROUNDQuality improvement is a central goal of the patient-centered medical home (PCMH) model, and requires the use of relevant performance measures that can effectively guide comprehensive care improvements. Existing literature suggests performance measurement can lead to improvements in care quality, but may also promote practices that are detrimental to patient care. Staff perceptions of performance metric implementation have not been well-researched in medical home settings.OBJECTIVETo describe primary care staff (clinicians and other staff) experiences with the use of performance metrics during the implementation of the Veterans Health Administration’s (VHA) Patient Aligned Care Team (PACT) model of care.DESIGNObservational qualitative study; data collection using role-stratified focus groups and semi-structured interviews.PARTICIPANTS Two hundred and forty-one of 337 (72xa0%) identified primary care clinic staff in PACT team and clinic administrative/other roles, from 15 VHA clinics in Oregon and Washington.APPROACHData coded and analyzed using conventional content analysis techniques.KEY RESULTSPrimary care staff perceived that performance metrics: 1) led to delivery changes that were not always aligned with PACT principles, 2) did not accurately reflect patient-priorities, 3) represented an opportunity cost, 4) were imposed with little communication or transparency, and 5) were not well-adapted to team-based care.CONCLUSIONSPrimary care staff perceived responding to performance metrics as time-consuming and not consistently aligned with PACT principles of care. The gaps between the theory and reality of performance metric implementation highlighted by PACT team members are important to consider as the medical home model is more widely implemented.

Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities

BACKGROUNDnAudio computer-assisted self-interviews (ACASIs) have safely and effectively obtained sensitive research data from the general public and have been recommended for use with people with disabilities. However, few studies have used ACASIs with people with disabilities and ACASIs have not been used to investigate the relationship between disability, interpersonal violence (IPV), and physical and psychological health among people with developmental disabilities (PWDD).nnnOBJECTIVEnWe developed an accessible ACASI specifically designed to allow PWDD to answer questions independently, while privately and securely collecting anonymous data related to their disability, IPV experiences, and physical and psychological health.nnnMETHODSnWe used a safety protocol to apply community based participatory research (CBPR) principles and an iterative process to create, test, and administer a cross-sectional ACASI survey to 350 adults with developmental disabilities in urban and rural locales.nnnRESULTSnMost participants completed the ACASI independently and reported that its accessibility features allowed them to do so. Most also agreed that the ACASI was easy to use, its questions were easy to understand, and that they would prefer using an ACASI to answer IPV and health-related questions rather than in a face-to-face interview. The majority agreed that health and safety were critical issues to address.nnnCONCLUSIONSnACASI technology has the potential to maximize the independent and private participation of PWDD in research on sensitive topics. We recommend further exploration into accessibility options for ACASI technology, including hardware and Internet applications.

Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities.

Background: People with developmental disabilities (DD) are often not included as participants in research owing to a variety of ethical and practical challenges. One major challenge is that traditional measurement instruments may not be accessible to people with DD. Participatory research approaches promise to increase the participation of marginalized communities in research, but few partnerships have successfully used such approaches to conduct quantitative studies people with DD.Objective: To use a community-based participatory research (CBPR) approach to create an accessible, computer-assisted survey about violence and health in people with DD, and to psychometrically test adapted health instruments.Methods: Our academic–community partnership, composed of academic researchers, people with DD, and supporters, collaboratively selected and modified data collection instruments, conducted cognitive interviews and pilot tests, and then administered the full survey to 350 people with DD.Results: Although team members sometimes had opposing accommodation needs and adaptation recommendations, academic and community partners were able to work together successfully to adapt instruments to be accessible to participants with a wide range of DD. Results suggest the adapted health instruments had strong content validity and all but one had good to excellent internal consistency reliability (alpha, 0.81–0.94). The majority of participants (75%) responded that all or most of the questions were easy to understand.Conclusions: Researchers should consider using participatory approaches to adapting instruments so people with DD can be validly included in research.

Childhood abuse and early menarche among Peruvian women

PURPOSEnChildhood abuse has been associated with age of menarche in some studies, but not all, and few have assessed the independent associations of sexual and physical abuse with early menarche. We examined the association between childhood abuse and early menarche among pregnant women in Lima, Peru.nnnMETHODSnMultinomial logistic regression procedures were used to estimate odds ratios (OR) and 95% confidence intervals (CIs) for early menarche (≤11 years) in relation to any physical or sexual childhood abuse, physical abuse only, sexual abuse only, and both physical and sexual abuse in a cohort of 1,499 pregnant (first trimester) women.nnnRESULTSnApproximately 69% of participants reported experiencing physical or sexual abuse in childhood. The frequencies of physical abuse only, sexual abuse only, and both physical and sexual abuse were 37.4%, 7.7%, and 24.5%, respectively. Compared with women who reported no childhood abuse, those who reported any childhood abuse had a 1.38-fold increased odds of early menarche (95% CI, 1.01-1.87). Compared with no abuse, the odds of early menarche was 1.60-fold among women with childhood sexual abuse only (OR, 1.60; 95% CI, .93-2.74) and 1.56-fold for those with both physical and sexual abuse (OR, 1.56; 95% CI, 1.07-2.25) during childhood. Isolated physical abuse was weakly associated with early menarche (OR, 1.23; 95% CI, .87-1.74). There was no clear evidence of association of childhood abuse with late menarche (≥15 years).nnnCONCLUSIONSnChildhood abuse, particularly joint physical and sexual abuse, is associated with early menarche. Our findings add to an expanding body of studies documenting the enduring adverse health consequences of childhood abuse.

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (nu2009=u200974)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (nu2009=u200967)), concern about cost (30% (nu2009=u200962)), facilities causing sensory issues 30% ((nu2009=u200962)), and difficulty communicating with providers (29% (nu2009=u200961)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, pu2009<u20090.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers

ABSTRACTBackgroundThe healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.ObjectiveOur goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.DesignToolkit development included cognitive interviewing and test–retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.ParticipantsA total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States.InterventionsThe AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)—a tool that allows patients to create a personalized accommodations report for their PCP—and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers.Main MeasuresSatisfaction with patient–provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit’s usability and utility; responses to open-ended questions.Key ResultsPreliminary testing of the AHAT demonstrated strong content validity and adequate test–retest stability. Almost all patient participants (>94xa0%) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, pu2009<u20090.0001), healthcare self-efficacy increased (from 37.9 to 39.4, pu2009=u20090.02), and satisfaction with PCP communication improved (from 30.9 to 32.6, pu2009=u20090.03). Patients stated that the toolkit helped clarify their needs, enabled them to self-advocate and prepare for visits more effectively, and positively influenced provider behavior. Most of the PCPs surveyed read the AHAT (97xa0%), rated it as moderately or very useful (82xa0%), and would recommend it to other patients (87xa0%).ConclusionsThe CBPR process resulted in a reliable healthcare accommodation tool and a highly accessible healthcare toolkit. Patients and providers indicated that the tools positively impacted healthcare interactions. The toolkit has the potential to reduce barriers to healthcare and improve healthcare self-efficacy and patient–provider communication.