Assessment of Barriers to Referral and Appointment Wait Times for the Evaluation of Spinal Muscular Atrophy (SMA): Findings from a Web-Based Physician Survey.

Background: Spinal muscular atrophy (SMA) is an autosomal recessive neuromuscular disease characterized by progressive muscle weakness and atrophy. Clinical trial data suggest early diagnosis and treatment are critical. The purpose of this study was to evaluate neurology appointment wait times for newborn screening identified infants, pediatric cases mirroring SMA symptomatology, and cases in which SMA is suspected by the referring physician.

Telemedicine Use, Comfort, and Perceived Effectiveness in the Spinal Muscular Atrophy Community.

Telemedicine may increase access to clinical care, particularly for mobility-limited communities such as the spinal muscular atrophy (SMA) community. However, much of the information on exposure to and attitudes toward telemedicine in neuromuscular diseases generally and SMA specifically is anecdotal or from focus groups. Gaining greater insight into patient perspectives is important, given telemedicine's potential for expanding access to care and growing use of telemedicine as a result of technology advances and the COVID-19 pandemic.

The Cure SMA Clinical Trial Experience Survey: A Study of Trial Participant Perspectives on Clinical Trial Management and Patient-Centric Management Practices.

Introduction: Understanding clinical trial experiences can illuminate opportunities to optimize trial design and management, with potential benefits for recruitment and retention. This study sought to better understand clinical trial participant experiences and attitudes within spinal muscular atrophy (SMA), and how the evolving treatment landscape and participant characteristics may predict attitudes.

Methods: A survey was developed following a review of published literature and discussions with caregivers of SMA trial participants.

Maternal stress exposures, reactions, and priorities for stress reduction among low-income, urban women.

Introduction: Maternal psychosocial stress has been associated with adverse maternal-child outcomes. Vulnerable women's experiences with stressors during pregnancy and their desires and priorities for appropriate and useful stress reduction interventions are not well understood.

Methods: Qualitative interviews with low-income, urban women explored their stress exposures and reactions during pregnancy, ways that stressors overlapped and interacted, and their priorities for stress reduction.

Prevalence of interpersonal violence against community-living adults with disabilities: a literature review.

Objective: To review the empirical literature on the prevalence of interpersonal violence (IPV) against people with disabilities.

Method: The authors searched for, obtained, and reviewed 6,000 abstracts published between January, 2000 and August, 2010 via searches in PsycINFO and PubMed. Subsequently, 177 potentially applicable full-text articles were independently assessed for inclusion; 22 articles describing 21 individual studies were included in this review.

Facilitators and barriers to disclosing abuse among women with disabilities.

An anonymous audio computer-assisted self-interview (A-CASI) designed to increase awareness of abuse was completed by 305 women with diverse disabilities. Data were also collected about lifetime and past year abuse; perpetrator risk characteristics; facilitators and barriers to disclosing abuse; abuse disclosure to a health provider, case manager, or police officer; and whether a health provider had ever discussed abuse or personal safety. A total of 276 (90%) women reported abuse, 208 (68%) reported abuse within the past year.

Efficacy of a computerized abuse and safety assessment intervention for women with disabilities: a randomized controlled trial.

Objective: To evaluate the effects of a computerized disability-specific abuse assessment intervention on abuse awareness, safety self-efficacy, and safety promoting behaviors of women with diverse disabilities.

Research Design: A randomized control group design was used, with the intervention group completing the assessment intervention both at Time 1 (T1) and 3 months later at Time 2 (T2) and control participants completing it for the first time at T2. Analyses compared intervention and control groups at T2 and evaluated change over time in intervention group participants.

Experiences of mistreatment among women with cerebral palsy.

Abuse and mistreatment of women with disabilities is a complex problem that affects their health and well-being. Previous studies have focused on heterogeneous groups of women with disabilities, with only small numbers of women with cerebral palsy included, but different disabilities may play specific roles in relation to abuse. Exploring mistreatment of women with cerebral palsy is important in determining the relationship between mistreatment and a specific disability.

Development of measures of abuse among women with disabilities and the characteristics of their perpetrators.

Three hundred and five women with diverse disabilities completed an anonymous audio computer-assisted self-interview designed to increase women's awareness of abuse. Data were also collected regarding abuse experienced in the past year and the risk characteristics of their perpetrators. Overall, 68% reported some type of abuse.

Interpersonal violence and women with disabilities: analysis of safety promoting behaviors.

Very little information exists related to the interpersonal violence safety promoting behaviors of women with disabilities. Information about women's use of safety promoting behaviors was gathered from 305 disabled and deaf women who completed an anonymous Audio Computer-Assisted Self-Interview. Exploratory factor analyses revealed factors related to seeking abuse-related safety information, building abuse-related safety promoting skills, using relationship support, planning for emergencies, taking legal action, and managing safety in personal assistance relationships.

Development of an accessible Audio Computer-Assisted Self-Interview (A-CASI) to screen for abuse and provide safety strategies for women with disabilities.

To increase safety and minimize the risk of interpersonal violence, it is critical that women with disabilities and Deaf women have an opportunity to identify whether or not abuse is happening in their lives. Awareness and knowledge of what constitutes abusive behaviors is an essential first step in addressing interpersonal violence. This article includes a description of the development and evaluation of the Safer and Stronger Program (SSP), an audio computer-assisted self-interview program, which was created for women with disabilities and Deaf women for the purposes of increasing awareness of abuse, encouraging safety-planning behaviors, and providing information about community resources.

Abuse and psychosocial stress as factors in high utilization of medical services during pregnancy.

High utilization of medical services during pregnancy has not been described as most studies have focused on women who receive inadequate or no prenatal care. This paper describes the characteristics and medical utilization data of 500 pregnant women enrolled in a prospective study. High utilizers (HU), who had a mean of 7.

Double binding, abusive intimate partner relationships, and pregnancy.

The purpose of this study was to extend and integrate the process theories of abuse and becoming a mother in order to provide a contextually appropriate perspective for understanding women's behavioural responses to intimate partner abuse during pregnancy. Double binding is proposed as a construct for understanding intimate partner abuse during pregnancy. Double binding refers to the simultaneous and often conflicting psychological and social processes of binding-in to the unborn child and to the abusive intimate partner that women engage in as they perform the developmental tasks associated with becoming a mother while living with an abusive partner.

Abuse during pregnancy: current theory and new contextual understandings.

This study used Landenburger's theory, a process of leaving and recovering from an abusive relationship, as a framework to interview 35 pregnant women identified as being at high risk for abuse. Results are reported on 18 women who disclosed active abuse during the study. Landenburger's model was not a good fit.

Abuse disclosure in privately and medicaid-funded pregnant women.

Disclosure of abuse by pregnant women can vary depending on whether the woman is assessed directly by a trained interviewer versus written questionnaires, and if she is asked repeatedly during the course of pregnancy. One thousand pregnant women were enrolled in a randomized clinical trial designed to assess the effects of a nursing case management intervention on the mental and physical well-being of pregnant women experiencing or at risk for abuse. Thirteen percent of the total study participants reported current abuse and/or abuse within the past year, with only 2% of those reporting that the abuse occurred during pregnancy.

Nurse case management for pregnant women experiencing or at risk for abuse.

Objective: To determine whether individualized nursing case management can decrease stress among pregnant women at risk for or in abusive relationships.

Design: A multisite randomized controlled trial.

Setting: Two prenatal clinics in the Pacific Northwest and rural Midwest.

Invalidation: a central process underlying maltreatment of women with disabilities.

Recent qualitative studies indicate that maltreatment of women with disabilities by health care providers is a serious quality of care issue. To begin to address this problem, we conducted a secondary analysis of data derived from three qualitative studies of abuse of women with disabilities. Findings identified Invalidation as a central process underlying maltreatment.

Could we have known? A qualitative analysis of data from women who survived an attempted homicide by an intimate partner.

Objective: To examine in-depth the lives of women whose partners attempted to kill them, and to identify patterns that may aid in the clinician's ability to predict, prevent, or counsel about femicide or attempted femicide.

Design: Qualitative analysis of 30 in-depth interviews.

Setting: Six U.

Risk factors for femicide in abusive relationships: results from a multisite case control study.

Objectives: This 11-city study sought to identify risk factors for femicide in abusive relationships.

Methods: Proxies of 220 intimate partner femicide victims identified from police or medical examiner records were interviewed, along with 343 abused control women.

Results: Preincident risk factors associated in multivariate analyses with increased risk of intimate partner femicide included perpetrator's access to a gun and previous threat with a weapon, perpetrator's stepchild in the home, and estrangement, especially from a controlling partner.

The domestic violence survivor assessment: a tool for counseling women in intimate partner violence relationships.

Seeking to end violence and distress in their relationship is the goal of women abused by intimate partners. The theoretical framework guiding development of the domestic violence survivor assessment (DVSA) was Landenburger's theory of entrapment and recovery. Social context and need to balance care for others and herself influence women's decision-making about abuse.