Family Works

Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) are severe but highly treatable postinfectious inflammatory brain conditions. Despite published diagnostic and treatment guidelines for this condition, there are long delays in obtaining appropriate care. The reasons for these delays are poorly understood. We sought to identify health care system barriers to timely treatment by examining cases of PANDAS/PANS occurring in children of health care professionals. We recruited families via e-mail request through the PANDAS Physicians Network. Participating parents completed a structured questionnaire and provided a written case description. Eleven families completed data collection, representing a broad spectrum of disease (child disease onset age 4-15, 7 males/4 females, mild to severe). Parents included 11 physicians, 2 mental health professionals, 2 nurses, and a PharmD. Nine cases (82%) had "very delayed" diagnosis and treatment (>4 weeks after onset). The most commonly encountered causes for treatment delay were clinician lack of awareness (82%), clinician skepticism (82%), overdependence on diagnostic testing (91%), and out-of-pocket expenses >$100 US (82%). Other common challenges included difficulties finding a provider to spearhead care (64%), psychological misdiagnosis (55%), and children's suppression of behaviors during assessments (55%). We found numerous barriers to treatment of PANDAS/PANS among children of health care providers. Our findings suggest that even among the medically sophisticated, PANDAS/PANS diagnosis and treatment remains challenging. Improvement in PANDAS/PANS education of clinicians who may encounter children with this disorder is 1 key step toward addressing our identified barriers. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Social workers working in the rural community do so within a rural culture. This culture has developed from historical and cultural influences from the generations before, from the impact of social and familial changes over the years and from current internal and external influences. These changes and influences make the rural people who they are today. This study was carried out on a small rural community in Western Southland. The purpose was to examine the impact on the community of social changes over the past 50 years. Eight long-term residents were interviewed. The results will be discussed within this article.

Concerns regarding the impact of relationship distress and divorce have prompted various federal, state, and local initiatives to offer couple relationship education (CRE) programs to help couples build and maintain healthy relationships. Recent reports have shown CRE to have several positive effects. Still, challenges pertaining to recruitment and retention have limited the reach and potential impact of CRE services. Also, in comparison to other family programs such as parent education, little is known about public perceptions of CRE. To better understand perceptions of CRE services and gain ideas for recruitment strategy, this study applied content analysis methodology to 99 couple discussions on the pros and cons of attending relationship education. Ideas for CRE programmers are discussed in light of study findings.

The literature on lesbian, gay, bisexual, and transgender (LGBT) virginity is almost nonexistent. Thus this exploratory study was completed to understand virginity in the LGBT community. The research questions asked members of two LGBT student groups to define virginity, discuss its meaning, and share experiences. Data were collected from two focus groups and six individual follow-up interviews and were analyzed. Results indicate that there is a range of virginity definitions, there is little discussion of the topic, and that “coming out” is a more important rite of passage than virginity among these LGBT community members. Future research needs are discussed.

BackgroundEvidence-based preventive services offer profound health benefits, yet Americans receive only half of indicated care. A variety of government and specialty society policy initiatives are promoting the adoption of information technologies to engage patients in their care, such as personal health records, but current systems may not utilize the technology's full potential.MethodsUsing a previously described model to make information technology more patient-centered, we developed an interactive preventive health record (IPHR) designed to more deeply engage patients in preventive care and health promotion. We recruited 14 primary care practices to promote the IPHR to all adult patients and sought practice and patient input in designing the IPHR to ensure its usability, salience, and generalizability. The input involved patient usability tests, practice workflow observations, learning collaboratives, and patient feedback. Use of the IPHR was measured using practice appointment and IPHR databases.ResultsThe IPHR that emerged from this process generates tailored patient recommendations based on guidelines from the U.S. Preventive Services Task Force and other organizations. It extracts clinical data from the practices' electronic medical record and obtains health risk assessment information from patients. Clinical content is translated and explained in lay language. Recommendations review the benefits and uncertainties of services and possible actions for patients and clinicians. Embedded in recommendations are self management tools, risk calculators, decision aids, and community resources - selected to match patient's clinical circumstances. Within six months, practices had encouraged 14.4% of patients to use the IPHR (ranging from 1.5% to 28.3% across the 14 practices). Practices successfully incorporated the IPHR into workflow, using it to prepare patients for visits, augment health behavior counseling, explain test results, automatically issue patient reminders for overdue services, prompt clinicians about needed services, and formulate personalized prevention plans.ConclusionsThe IPHR demonstrates that a patient-centered personal health record that interfaces with the electronic medical record can give patients a high level of individualized guidance and be successfully adopted by busy primary care practices. Further study and refinement are necessary to make information systems even more patient-centered and to demonstrate their impact on care.Trial RegistrationClinicaltrials.gov identifier: NCT00589173

Recent years have seen a welcome series of government measures aimed at meeting the mental health needs of looked after children. However, as Eddy Street and Mike Davies argue in this paper, there remains a clear lack of integration of models of ‘good practice’ among childcare and mental health professionals. Taking into consideration the ‘tiered model’ recommended by the NHS Health Advisory Service report (1995), the authors advocate a developmental approach through the implementation of a multi-disciplinary service that combines the best of psychiatric, psychological, social work and childcare perspectives.

Books for review should be sent to Ronald Teichman, MD, MPH, Worksite Partners, 2741 Speissegger Drive, Suite 205, Charleston, SC 29405.