Development of a Conceptual Framework of Sexual Well-being for Women with Physical Disability.

BACKGROUND: Women with physical disability (WWPD) experience more sexual dysfunction, are typically less sexually active, and engage in fewer intimate relationships than women without physical disability. Although patient-reported outcome measures can help researchers and providers to meet the needs of this population, current measures fail to reflect the relevant experiences of WWPD. The purposes of this study were to 1) understand the experiences of WWPD related to sexual wellness, 2) identify the gaps in the current Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction, and 3) develop a conceptual framework for the measurement of sexual well-being on which a new supplemental measure will be built. METHODS: WWPD (n = 59) were recruited from an online health registry through a large academic medical center and took part in semistructured focus groups and interviews exploring experiences with sexuality, intimate relationships, sexual function, and sexual and reproductive health care. Interviews were transcribed and coded using an inductive approach to thematic analysis. RESULTS: Participants expressed that their sexual well-being extends beyond simply physical function and includes aspects of their environment, society, and intrapersonal and interpersonal factors. From themes that emerged from the qualitative data, we developed a conceptual framework of sexual well-being, which includes sexual health and sexual self-efficacy. The framework is composed of five constructs that impact sexual health and sexual self-efficacy: physical factors, intrapersonal factors, environmental factors, relationships and partner opportunity, and stigma. CONCLUSIONS: This conceptual framework can be used to develop patient-reported outcome measures items relevant to the experiences of WWPD, facilitate conversations between providers and patients, and identify areas to target for sexual wellness interventions.

Awareness and Knowledge of Pre-exposure Prophylaxis Among Sexual and Gender Minority Adolescents Assigned Male at Birth in the United States.

Sexual and gender minority (SGM) adolescents assigned male at birth are at increased risk for HIV infection. Pre-exposure prophylaxis (PrEP) is a daily pill taken to prevent HIV, which the United States Food and Drug Administration approved for minors under age 18 years weighing at least 77.5 lb in 2018. A lack of awareness and knowledge of PrEP are barriers to uptake among adults and adolescents, but SGM adolescents' awareness and knowledge about PrEP remain underexplored and no studies have assessed SGM adolescents' informational needs. We collected data on 59 SGM adolescents' (ages 14-18 years) awareness, knowledge, and questions about PrEP in an online survey and six online focus groups. Although a majority of SGM adolescents (83.1%) were aware of PrEP before the study, many wanted more information about side effects and how to navigate potential barriers to PrEP initiation. Findings can inform public health efforts to promote PrEP knowledge and uptake among SGM adolescents.

Perspectives on and preferences for on-demand and long-acting PrEP among sexual and gender minority adolescents assigned male at birth.

INTRODUCTION: Sexual and gender minority (SGM) adolescents assigned male at birth who have sex with male partners are at increased risk for HIV. Daily oral pre-exposure prophylaxis (PrEP) is available for minor adolescents in the United States, who may have difficulty with adherence. Adolescents' perspectives toward emerging PrEP delivery methods that would not require daily pill-taking have not been well-explored. METHODS: We conducted online surveys and focus groups in November 2018-February 2019 with 59 SGM adolescents assigned male at birth who reported sex with or attraction to male partners. Questions assessed their perspectives on and preferences for biomedical (on-demand, injection, implant) and non-biomedical HIV prevention options (condoms). Data were analyzed thematically. RESULTS: Of all prevention options, the implant and condoms were rated highest, and participants preferred the implant over other biomedical options. Convenience, duration, and ease of access played important roles in adolescents' preferences. Parents were viewed as a barrier to taking PrEP regardless of delivery method due to their role in adolescents' ability to access healthcare. CONCLUSIONS: SGM adolescents are interested in long-acting PrEP, yet also perceive substantial obstacles to using biomedical prevention that reflect adolescents' developmental contexts. POLICY IMPLICATIONS: State laws expanding adolescents' access to HIV preventive services, sex education inclusive of PrEP information, and parent- and provider-initiated PrEP conversations can reduce barriers regardless of PrEP delivery method. Research to accelerate the availability of long-acting implants for adolescents is needed.

mHealth and patient generated health data: stakeholder perspectives on opportunities and barriers for transforming healthcare.

BACKGROUND: Wearable devices, mobile health apps, and geolocation technologies place the ability to track, monitor and report data in the individuals' hands - or on their bodies. These innovations create an opportunity for "connected health," where individuals collect data outside of the healthcare encounter and report it to care providers. Collection of such patient-generated health data (PGHD) has the potential to impact the delivery of healthcare through remote monitoring, and by allowing patients and healthcare teams to provide targeted and efficient care that aligns with the health status of individual patients. METHODS: To understand the value and barriers associated with clinical integration of PGHD we engaged a range of stakeholders, examining their perspectives and experiences of PGHD use. We conducted open-ended interviews with healthcare consumers (patients and care partners), healthcare providers, and healthcare administrators. Open recruitment and purposive sampling were utilized to identify participants that represented the breadth of PGHD use in research and clinical care. Interview guides focused on the value and barriers of PGHD use. Interviews were recorded, transcribed, and analyzed for emergent themes. RESULTS: Themes emerged around the value of PGHD to support care decisions and improve patient-provider communication and engagement, and the promise of applying PGHD to formal care pathways and measurement-based care. Significant barriers included data validity and actionability, and the burden of integrating PGHD into existing care processes. Interviews highlighted areas for future research to better understand how PGHD can advance care transformation. CONCLUSIONS: These findings provide rich context for understanding the experiences and needs of the individuals who interface with PGHD. Translating advances in technology and data tracking into successful clinical implementation requires understanding how stakeholders conceptualize and make use of PGHD, the potential value that PGHD can add to care, and the challenges that may limit PGHD's promise. Our results illustrate the value and challenges associated with health-system implementation of PGHD. Efforts to increase the scale and spread of PGHD will benefit from an approach that addresses the value and challenges PGHD brings to clinical care.

Development of a resilience item bank and short forms.

PURPOSE: The purpose of this study was to develop a publicly available, psychometrically sound item bank and short forms for measuring resilience in any population, but especially resilience in individuals with chronic medical conditions or long-term disability. RESEARCH METHODS: A panel of 9 experts including disability researchers, clinical psychologists, and health outcomes researchers developed a definition of resilience that guided item development. The rigorous methodology used focus groups, cognitive interviews, and modern psychometric theory quantitative methods, including item response theory (IRT). Items were administered to a sample of people with chronic medical conditions commonly associated with disability (N = 1,457) and to a general population sample (N = 300) representative of the Unites States general population with respect to age, gender, race, and ethnicity. RESULTS: The final item bank includes 28 items calibrated to IRT with the scores on a T-metric. A mean of 50 represents the mean resilience in the general population sample. Four and eight item short forms are available, and their scores are highly correlated with the item bank score (r ≥ .94). Reliability is excellent across most of the resilience continuum. Initial analyses provide strong support for validity of the score. CONCLUSIONS: The findings support reliability and validity of the University of Washington Resilience Scale (UWRS) for assessing resilience in any population, including individuals with chronic health conditions or disabilities. It can be administered using computerized adaptive testing or by short forms. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Factors associated with disease self-efficacy in individuals aging with a disability.

Self-management of a disability consists of treatment adherence, obtaining information about the disease and treatment options, caring for oneself, participating in decisions, and maintaining social relationships and emotional balance. Understanding and measuring an individual's beliefs about their ability to successfully self-manage and live well with a disability allows researchers and clinicians to better target interventions aimed at increasing disability management self-efficacy (DMSE). The purpose of this study was to examine the associations between demographic and clinical indicators, and self-efficacy for DMSE in individuals with chronic physical conditions. Adults (N = 815) with muscular dystrophy, multiple sclerosis, spinal cord injury, or post-polio syndrome completed a self-report mailed survey assessing DMSE, perceived social support, depression symptoms, resilience, fatigue, pain interference, satisfaction with participation in social roles, physical function, and demographics. A cross-sectional regression model was used to examine the associations between the clinical and demographic factors, and DMSE. The model explained 67% of the variance in DMSE. Satisfaction with participation in social roles, resilience, pain interference, social support, and fatigue were statistically significant. Better social functioning, more resilience, and less pain and fatigue were most strongly associated with DMSE. Interventions aimed at increasing DMSE should include strategies for improving social participation.

Examining the roles of self-compassion and resilience on health-related quality of life for individuals with Multiple Sclerosis.

BACKGROUND: There are over 400,000 individuals living with Multiple Sclerosis (MS) in the U.S. These individuals experience unpredictable relapses of disabling conditions and poorer quality of life than the general population. Recent literature suggests self-compassion and resilience may improve wellness in this population. OBJECTIVE: The purpose of this study was to examine the roles of self-compassion and resilience on perceived health-related quality of life for individuals with Multiple Sclerosis (MS) using mediation analysis. METHODS: Two hundred fifty-nine adults with MS from MS advocacy, support, exercise, and education groups around the United States participated in the study. Participants' self-compassion, health-related quality of life (HRQoL), and resilience were assessed using self-report measures. A simple mediation analysis was conducted to examine the relationships between the independent variable, self-compassion, the depended variable, HRQoL, and the mediating variable, resilience. RESULTS: Results showed a significant direct effect between self-compassion and health-related quality of life (ß = 0.49, p < 0.0001, CI = 0.37-0.61), as well as an indirect relationship through resilience (ß = 0.18 p < 0.0001, CI: 0.17, 0.47). CONCLUSION: These results contribute to the theoretical knowledge of how self-compassion influences HRQoL in this population. For individuals with MS, engaging in self-compassion may provide a strategy to cope with debilitating conditions and reframe perceptions of their health. Additionally, increasing resilience may help individuals overcome stressful and traumatic events and experience quality of life with disability. Self-compassion and resilience are both modifiable constructs that can be targeted by programs seeking to improve overall wellness.

Stakeholder evaluation of an online program to promote physical activity and workplace safety for individuals with disability.

Individuals with disabilities face increasing health and employment disparities, including increased risk of morbidity and mortality and decreased earnings, occupational roles, and greater risk of injury at work. Thus, there is a need to improve workplace safety and health promotion efforts for people with disability. The purpose of this study was to obtain stakeholder feedback about an online program, Be Active, Work Safe, which was developed to increase the physical activity and workplace safety practices of individuals with disability. Eight stakeholders (content experts and individuals with disability) evaluated the 8-week online program and provided feedback on accessibility, usability, and content using quantitative and qualitative approaches. Stakeholders suggested changes to the organization, layout and accessibility, and content. This included making a stronger connection between the physical activity and workplace safety components of the program, broadening content to apply to individuals in different vocational fields, and reducing the number of participant assessments. Engaging stakeholders in the development of health promotion programs is critical to ensure the unique issues of the population are addressed and facilitate engagement in the program. Feedback provided by stakeholders improved the program and provided insight on barriers for adoption of the program.

Using health promotion guidelines for persons with disabilities to develop and evaluate a physical activity program for individuals with multiple sclerosis: A feasibility study.

The Health Education for Persons with Multiple Sclerosis (HEMS) program was developed in response to the need for interventions aimed at increasing physical activity for individuals with Multiple Sclerosis (MS). It was developed and evaluated using Drum and colleagues (2009) guidelines for implementing health promotion programs for individuals with disabilities. The purpose of this feasibility study is to describe the development, implementation, and evaluation of the HEMS program. Thirteen individuals with MS completed the 8-week health education program. A mixed method approach for evaluation was implemented (i.e., survey and focus groups). Process and resource feasibility demonstrated that over half of the participants attended at least 80% of the weekly sessions. Focus group data provided valuable feedback for future iterations of the program including critiques on the delivery, content, and group support provided. Outcome evaluation showed increases in self-efficacy (survey), improvements in theoretical constructs (focus groups), and increased physical activity (focus groups). Results show that health promotion programs for persons with MS can improve physical activity and related constructs. Next steps will be to revise, implement, and reevaluate the HEMS program in a larger randomized control trial.

A systematic framework to classify physical activity research for individuals with spina bifida.

BACKGROUND: Identifying the types of research conducted in the area of physical activity (PA) for the spina bifida (SB) population is important in order to move research forward to increase PA behaviors and improve health. The Behavioral Epidemiological Framework is a one way to systematically classify PA and SB literature by organizing research into one of five phases: phase 1 research links behaviors to health, phase 2 includes research focused on developing methods for measuring behavior, phase 3 research identifies factors that influence behavior, phase 4 research evaluates interventions to change the behavior, and phase 5 studies translates research into practice. OBJECTIVE: To systematically classify PA research for individuals with SB by using the Behavioral Epidemiologic Framework and to identify where the research has focused. METHOD: An audit of the literature was conducted using search engines and keywords related to PA and SB. Inter-rater reliability was established between the research team coding articles based on established inclusion criteria. Finally, literature was categorized into one of the five phases. RESULTS: Seventy-seven articles met the inclusion criteria and were categorized. Forty three percent of the articles were categorized in phase 1, 21% in phase 2, 32% in phase 3, 4% in phase 4, and zero in phase 5. CONCLUSION: The majority of articles are in phase 1, indicating that PA and SB research is still in early stages of development. Future research needs to move beyond phase 1 to examine factors that affect PA behaviors and ways to increase PA behaviors in the SB population.