TRANSITION-RELATED DISCUSSIONS AMONG ADOLESCENT FEMALES WITH TURNER SYNDROME: CURRENT PRACTICES AND ASSOCIATED FACTORS

Objective: The purpose of this study was to examine current transition practices and factors associated with occurrence and timing of transition-related discussions among adolescents with Turner Syndrome (TS). Methods: A retrospective chart review was conducted at a large pediatric academic center among females with TS seen between 12–25 years of age. Medical/developmental characteristics, age of transition, documented transition-related discussions, and utilization of transition readiness assessment tools were abstracted. Analyses were conducted to examine age/occurrence of discussions and associated factors. Results: 112 patients’ records were reviewed. The average age of TS diagnosis was 7.6 + 5.8 years and average age of those that transitioned from pediatric to adult care (n=21) was 20.1 + 2.0 years. Only 22% of individuals had documented discussions regarding transition to adult care and no transition readiness tools were utilized. The majority of transition-related discussions began between 11–15 years. Estrogen and cardiovascular counseling were common (84% and 75% respectively). Less than half of subjects had reproductive (40%), lifestyle (43%), and psychosocial (12%) discussions. Cardiovascular conditions were associated with transition to adult care discussions and neurodevelopmental conditions were associated with psychosocial counseling. In those that transitioned to adult care, transition-related discussions occurred in only half of patients. Conclusion: Our findings emphasize the need for the development and implementation of a standardized transition process for adolescents with TS, with particular attention to transition to adult care, reproductive, lifestyle, and psychosocial counseling. The utilization of formal transition tools may also help prepare these girls for transition to adult care. Abbreviations: TS = Turner syndrome; ART = assisted reproductive technologies; EMR = electronic medical records; HRT = hormone replacement therapy.

The Work of Disaster: Building Back Otherwise in Post-Earthquake Nepal

What does a disaster generate? This article brings a critical phenomenological approach into conversation with theories of event to trace the emergence of a mental health crisis and its consequences in Nepal after the 2015 earthquakes. Following the disaster, people who received psychosocial counseling often presented chronic problems that had become visible through the frame of crisis and its ethical demands. At the same time, humanitarian agencies were aware of the logics of crisis and strategically used the disaster as an opportunity to increase mental health governance under the rubric of “building back better.” I demonstrate that these phenomena are linked consequences of the work of disaster, the destruction and creation of worlds set into motion by disaster and its management. I argue that a phenomenological approach to disaster helps us attend to the ways a priori frames of crisis and “the better” create and foreclose possibilities both for care and for building the world back otherwise. सारांश विपदले के उत्पादन गर्छ? २०१५ सालको भुकम्पले निम्त्याएको मानसिक स्वास्थको संकट र नेपालमा त्यसका परिणामको उद्भव यस लेखले घटनाक्रियाविज्ञान (फेनोमेनोलोजी) र घटना सिद्धान्तको संवादबाट चित्रित गर्छ । २०१५ को विपद पछि, जुन जीर्ण समस्याहरु मनोसामाजिक परामर्श पाउनेहरुमा देखा पर्यो, यी समस्याहरु संकटको धारणा र संकटको बेलाको नैतिक जिम्मेवारीको माध्यम बाट मात्र बाहिर देख्न आइपुग्यो । त्यस समयमा मानवीय निकायहरुले पनि रणनीतिक तरिकाले विपदलाई मानसिक स्वास्थ प्रशाशनलाई अझ सहज बनाउने अवसरको रुपमा लिए, झन् राम्रो पुननिर्माण (‘बिल्डिंग ब्याक बेट्टर’) को शीर्षक मुनि । यी घटनाक्रम सबै ‘विपदका काम’ सित जुडेका परिणामहरु हुन भनेर म यस लेखमा उल्लेख गर्छु, जहाँ विपद र विपदका व्यवस्थापनले नयाँ संसारहरुका बिनाश र सिर्जना दुबै भैरहेका छन् । संकट र ‘झन् राम्रो’ जस्ता पूर्वनिर्धारित अवधारणाहरूले कसरी हेरचाह र पुननिर्माणका सम्भावनाहरुलाई संगसंगै उत्पादन एवम सिमित गर्छन भनेर बुझ्न घटनाक्रियाविज्ञानको दृष्टिकोणले सहयोग गर्छ भन्ने मेरो तर्क यस लेखमा प्रस्तुत गरेकी छु ।

’I had no idea what could come’- health care support for AMD in Germany- The patients’ view

Background Due to the demographic change visual impairment and blindness in the elderly caused by chronic eye diseases become major public health themes. Age- related macular degeneration (AMD) is one of the most common causes of visual impairment and blindness in older adults above 60 years of age in the western countries, followed by glaucoma and diabetic retinopathy. Objectives: The purpose of this study is to find out how patients with AMD assess their medical care, tool-based and psychosocial counseling services in Germany. Methods Data was collected by using narrative, semi-structured interviews. A purposive sampling strategy was used to sample the study population with patients with AMD, which is characterized by a variety of different life experiences of the patients. The data analysis followed the principles of grounded theory. Results The interviewed AMD patients were between 72 and 87 years old. Before the patients were diagnosed with AMD, AMD was not known to them and suffering from an unrecoverable disease resulting in blindness, made many of the patients anxious. Patients with AMD complained about missing information about the AMD and its treatment. Tool-related and psychosocial counseling services and their benefits were unknown to most of the patients. Therapy with Anti-VEGF injections gives hope to many patients with neovascular AMD, but at the same time it is associated with a time, psychological and physical strain. The time spent in clinics and practices, the waiting for appointments, the number of examinations and injections, communication problems with the medical staff, information deficits, the injections themselves and their side effects were often severe and nerve-wracking for the elderly. Conclusions New strategies need to be developed to facilitate access to AMD information for patients with AMD, as well as to reduce the time required for medical treatment, e.g. waiting times in clinics and practices. Key messages Therapy with Anti-VEGF injections gives hope to many patients with neovascular AMD, but at the same time it is associated with a time, psychological and physical strain. Patients with AMD complained about missing information about the AMD and its treatment.

THE COUNSELOR PERSPECTIVE ON THE ROLE OF PSYCHOSOCIAL CONSULTATION IN THE TREATMENT OF PERSONS SUFFERING FROM SCHIZOPHRENIA

In contrast to the traditional patocentric practice of treating psychotic disorders including schizophrenia, in the modern mental health concept a bio-psycho-social approach is emphasized, being characterized as comprehensive, integrative and above all humane. Psychosocial counseling of schizophrenic patients as a necessary form of intervention occupies an important place within a multiperspective treatment. By the means of a qualitative research method this paper aimed at revealing the subjective counselors’ perspective on the role of psychosocial counseling in the treatment of people with schizophrenia. The participants were experts involved in the field of mental health work with the people with diagnosed schizophrenia. The three expert interviews were conducted and later analyzed by the qualitative method of content analysis (Mayring, 2000). The results indicate that psychosocial counseling of people with a diagnosis of schizophrenia presents a particularly important segment of a multiperspective approach in treating this psychotic disorder. The importance of this approach is visible in different contexts and stages in the life of people with a diagnosis of schizophrenia, because this disease requires a lifelong support, which is, taking into account the symptomatology and clinical presentation, often individualized and primarily directed at overcoming everyday issues with the maximum mobilization of one's resources. Psychosocial counseling requires specific competences of auxiliary professionals, since it is a form of support interaction based on scientific and practical grounds.

Pelvic Pain in Adolescents

Dysmenorrhea and noncyclic pelvic pain (chronic pelvic pain) are common in adolescents. The evaluation of teens with dysmenorrhea or chronic pelvic pain is aimed to diagnose possible gynecologic conditions (endometriosis, pelvic inflammatory disease, ovarian cysts, and obstruction of the reproductive tract) and nongynecologic conditions (irritable bowel syndrome, interstitial cystitis, and myofascial pain). The management of chronic pelvic pain in adolescents is often more complex than in adult women because both the adolescent and her parents are counseled and addressed, and her long-term emotional and physical health, fertility, and sexuality are considered. Dysmenorrhea and chronic pelvic pain are often associated with depression and anxiety in adolescents. Thus, psychosocial counseling plays an important role in the management of these patients. This review will present a systematic approach to the evaluation and treatment of dysmenorrhea and chronic pelvic pain in adolescents.