1,282 research outputs found

    Support Networks of Primary Caregivers Receiving Family Preservation Services: An Exploratory Study

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    Copyright 1994 Families International, Inc.The authors describe network characteristics and support resources from a clinical sample of 40 families. Data were obtained by family workers during the first two weeks of intervention. Case vignettes illustrate the multiple uses to which this information was put. Implications for future research and practice are discussed

    Development of the AASPIRE web accessibility guidelines for autistic web users

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    Websites figure predominantly in everyday life. However, many websites remain inaccessible to autistic people, and existing efforts to improve accessibility are in early stages, do not directly include autistic users in their development, or have not been empirically evaluated. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) used a community-based participatory research approach to create a website to improve health care access for autistic adults. We used the creation of that website as a “living laboratory” to develop the AASPIRE Web Accessibility Guidelines for Autistic Web Users. Our guidelines are grounded in accessibility theory, had autistic end-user involvement at all stages, and were empirically evaluated through a usability study and evaluation surveys. We incorporated what we learned into the design of the website, and compiled the accessibility information into a set of guidelines. The guidelines offer recommendations for increasing the physical, intellectual, and social acceptability of websites for use by autistic adults. In the evaluation of the website by 170 autistic end users, nearly all indicated it was easy to use (97%), easy to understand (95%), important (97%), and useful (96%). Ninety-two percent would recommend it to a friend, and 95% would recommend it to a health care provider. There were no significant associations between usability or understandability and education level, receipt of help using the site, browser type (e.g., IE or Safari), or device type (e.g., PC or tablet). We recommend using the guidelines to improve website accessibility for autistic Internet users

    Progestogen-only contraceptive use among breastfeeding women: a systematic review.

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    Background: Postpartum women need effective contraception. Concerns have been raised that use of progestogen-only contraceptives (POCs) may affect breastfeeding performance and infant health outcomes. Objectives: We investigated the clinical outcomes of breastfeeding duration, initiation of supplemental feeding and weaning, as well as infant outcomes including infant growth, health and development among breastfeeding women using POCs compared with breastfeeding women not using POCs. Search strategy: We searched the PubMed database for all articles published from database inception through December 2014. Selection criteria: We included primary research studies of breastfeeding women of any age or parity who received POCs, including progestogen-only pills, injectables, implants or hormonal intrauterine devices (IUDs). The main outcomes were breastfeeding performance (as measured by initiation, continuation, frequency and exclusivity of breastfeeding) and infant health (as measured by growth, development or adverse health effects). Results: Forty-nine articles reporting on 47 different studies were identified that investigated the use of POCs in breastfeeding women and reported clinically relevant outcomes of infant growth, health or breastfeeding performance. Studies ranged from poor to fair methodological quality and generally failed to show negative effects of the use of POCs on breastfeeding outcomes or on infant growth or development. One randomized controlled trial (RCT) raises concerns that immediate insertion of the levonorgestrel IUD postpartum may be associated with poorer breastfeeding performance when compared with delayed insertion, although two other RCTs evaluating early etonogestrel implants compared with delayed initiation of implants or depot medroxyprogesterone acetate failed to find such an association. Conclusion: The preponderance of evidence fails to demonstrate adverse breastfeeding outcomes or negative health outcomes in infants such as restricted growth, health problems or impaired development. Evidence newly added to this review was largely consistent with previous evidence

    The Use of Soil Tests.

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    Ovarian cancer in younger vs older women: a population-based analysis

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    To compare the clinico-pathologic prognostic factors and survival of younger vs older women diagnosed with epithelial ovarian cancer. Demographic, clinico-pathologic, treatment, and surgery information were obtained from patients with ovarian cancer from the Surveillance, Epidemiology, and End Results Program from 1988 to 2001 and analysed using Kaplan–Meier estimates. Of 28 165 patients, 400 were <30 years (very young), 11 601 were 30–60 (young), and 16 164 were >60 (older) years of age. Of the very young, young, and older patients, 261 (65.3%), 4664 (40.2%), and 3643 (22.5%) had stage I–II disease, respectively (P<0.001). Across all stages, very young women had a significant survival advantage over the young and older groups with 5-year disease-specific survival estimates at 78.8% vs 58.8 and 35.3%, respectively (P<0.001). This survival difference between the age groups persists even after adjusting for race, stage, grade, and surgical treatment. Reproductive age (16–40 years) women with stage I–II epithelial ovarian cancer who received uterine-sparing procedures had similar survivals compared to those who underwent standard surgery (93.3% vs 91.5%, P=0.26). Younger women with epithelial ovarian cancer have a survival advantage compared to older patients

    “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: defining autistic burnout

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    Background: Although autistic adults often discuss experiencing ‘‘autistic burnout’’ and attribute serious negative outcomes to it, the concept is almost completely absent from the academic and clinical literature. Methods: We used a community-based participatory research approach to conduct a thematic analysis of 19 interviews and 19 public Internet sources to understand and characterize autistic burnout. Interview participants were autistic adults who identified as having been professionally diagnosed with an autism spectrum condition. We conducted a thematic analysis, using a hybrid inductive–deductive approach, at semantic and latent levels, through a critical paradigm. We addressed trustworthiness through multiple coders, peer debriefing, and examination of contradictions. Results: Autistic adults described the primary characteristics of autistic burnout as chronic exhaustion, loss of skills, and reduced tolerance to stimulus. They described burnout as happening because of life stressors that added to the cumulative load they experienced, and barriers to support that created an inability to obtain relief from the load. These pressures caused expectations to outweigh abilities resulting in autistic burnout. Autistic adults described negative impacts on their health, capacity for independent living, and quality of life, including suicidal behavior. They also discussed a lack of empathy from neurotypical people and described acceptance and social support, time off/reduced expectations, and doing things in an autistic way/unmasking as associated in their experiences with recovery from autistic burnout. Conclusions: Autistic burnout appears to be a phenomenon distinct from occupational burnout or clinical depression. Better understanding autistic burnout could lead to ways to recognize, relieve, or prevent it, including highlighting the potential dangers of teaching autistic people to mask or camouflage their autistic traits, and including burnout education in suicide prevention programs. These findings highlight the need to reduce discrimination and stigma related to autism and disability
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