Impact of a resilience-building energy management intervention for people with systemic sclerosis: a mixed methods study.

Objectives: People with SSc often experience fatigue, which significantly affects daily life functioning and quality of life. We aimed to explore participants' experiences of a peer health-coached resilience-building energy management to enhance well-being (RENEW) intervention on symptoms and well-being and to use mixed methods to compare how SSc duration influenced the experiences of participants who had clinically significant fatigue improvement vs those who did not. Methods: Semi-structured interviews were conducted with 21 participants from the parent clinical trial randomized to the RENEW intervention. Data were analysed using the rigorous and accelerated data reduction technique combined with thematic content analysis. A mixed methods approach used a joint display to identify themes related to the impact of SSc duration on fatigue improvement status. Participants were categorized into short/improvement, short/limited improvement, long/improvement, and long/limited improvement. Results: Our team generated four themes: participant and peer health-coach relationship, physical and psychological well-being improvement, need for a tailored approach and easy program access through technology. Mixed methods analysis revealed that, regardless of SSc duration, participants with improved fatigue reported increasing self-awareness of SSc-related symptoms and learning coping strategies to manage fatigue. Participants in the short/improvement group reported preferences for slower pacing of the program and pairing with a coach with similar symptom severity. Participants in the long/limited improvement group sought SSc-specific symptom management information. Conclusion: Incorporating peer health coaches and technology is beneficial for self-management interventions for people with SSc. Future tailoring of RENEW based on SSc duration and symptom severity is needed. Clinical trial registration number: clinicatrials.gov, NCT04908943.

Updating and evaluating a research best practices training course for social and behavioral research professionals.

Introduction: The clinical and translational research workforce involved in social and behavioral research (SBR) needs to keep pace with clinical research guidance and regulations. Updated information and a new module on community and stakeholder engagement were added to an existing SBR training course. This article presents evaluation findings of the updated course for the Social and Behavioral Workforce. Methods and Materials: Participants working across one university were recruited. Course completers were sent an online survey to evaluate the training. Some participants were invited to join in a focus group to discuss the application of the training to their work. We performed descriptive statistics and conducted a qualitative analysis on focus group data. Results: There were 99 participants from diverse backgrounds who completed the survey. Most reported the training was relevant to their work or that of the study teams they worked with. Almost half (46%) indicated they would work differently after participating. Respondents with community or stakeholder engaged research experience vs. those without were more likely to report that the new module was relevant to study teams they worked with (t = 5.61, p = 0.001), and that they would work differently following the training (t = 2.63, p = 0.01). Open-ended survey responses (n = 99) and focus group (n = 12) data showed how participants felt their work would be affected by the training. Conclusion: The updated course was rated highly, particularly by those whose work was related to the new course content. This course provides an up-to-date resource for the training and development for the Social and Behavioral Workforce.

Evaluation of an online research best practices training for community health workers and promotoras.

Introduction: Community health workers and promotoras (CHW/Ps) have a fundamental role in facilitating research with communities. However, no national standard training exists as part of the CHW/P job role. We developed and evaluated a culturally- and linguistically tailored online research best practices course for CHW/Ps to meet this gap. Methods: After the research best practices course was developed, we advertised the opportunity to CHW/Ps nationwide to complete the training online in English or Spanish. Following course completion, CHW/Ps received an online survey to rate their skills in community-engaged research and their perceptions of the course using Likert scales of agreement. A qualitative content analysis was conducted on open-ended response data. Results: 104 CHW/Ps completed the English or Spanish course (n = 52 for each language; mean age 42 years SD ± 12); 88% of individuals identified as female and 56% identified as Hispanic, Latino, or Spaniard. 96%-100% of respondents reported improvement in various skills. Nearly all CHW/Ps (97%) agreed the course was relevant to their work, and 96% felt the training was useful. Qualitative themes related to working more effectively as a result of training included enhanced skills, increased resources, and building bridges between communities and researchers. Discussion: The CHW/P research best practices course was rated as useful and relevant by CHW/Ps, particularly for communicating about research with community members. This course can be a professional development resource for CHW/Ps and could serve as the foundation for a national standardized training on their role related to research best practices.

Development and pilot test of a pregnancy decision making tool for women with physical disabilities.

OBJECTIVE: Design and pilot test a new decision making tool for women with physical disabilities (impairment of physical function due to chronic conditions) considering pregnancy. DATA SOURCES AND STUDY SETTING: Quantitative surveys and qualitative interviews were collected from participants living in the community. STUDY DESIGN: Clinical guidelines and survey and focus group data about pregnancy informational and decisional needs guided content development. The tool was pilot tested in a 12-week trial with participants with physical disabilities considering or actively planning a pregnancy. Feasibility outcomes were acceptability, implementation, and demand (collected at end of the trial); preliminary efficacy focused on decisional conflict and readiness (baseline, 6 weeks, and end of trial). DATA COLLECTION: Survey data were collected using an online form. One-on-one interviews were conducted to learn more about experience using the tool. PRINCIPAL FINDINGS: Thirty eight participants with mild, moderate, or severe physical disabilities participated. Feasibility outcomes indicated that the tool provided participants with information, guiding questions, and helped them to consider multiple aspects of the decision about pregnancy. Most participants responded positively to the new decision making tool, finding it easy to use and the information balanced. Feedback highlighted opportunity for improvement, such as more specific information, peer stories, and the limitations of a paper format. There was significant linear effect of time, with increased decisional certainty and readiness, values clarity, and decisional support (partial η2 [90% CI] = 0.310 [0.08, 0.46], 0.435 [0.19, 0.60], 0.134 [0, 0.29], 0.178 [0.01, 0.35], respectively). Decisional certainty and readiness had high observed power (96.7% and 99.3%, respectively) with lower observed power for clarity and support (60.6% and 75.1%, respectively). CONCLUSIONS: The new tool shows promise for supporting women with physical disabilities in navigating pregnancy decision making. Future development of complementary strategies to support health care providers will help improve shared decision making and patient-centered care.

Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.

BACKGROUND: While the literature on pregnancy and disability is growing, generating important knowledge of barriers to care and health risks, there is limited literature on pregnancy decision-making and informational needs. Such knowledge is critical for the development of interventions to mitigate the challenges women with disabilities and health care providers face in making this important decision. OBJECTIVE: /Hypothesis: Develop a survey of pregnancy decisional and informational needs of women with physical disabilities. METHODS: We developed a conceptual framework that guided item writing, defined the characteristics of the target population, engaged stakeholders with disabilities to collaborate with investigators, and tested the interpretability and relevance of items, and preferred mode of responding (online vs. telephone). A total of 123 women participated in cognitive interviews (N = 13), mode testing (N = 10), or survey data collection (N = 114). RESULTS: Instructions, three screening questions, and 156 items were tested in one round of 17 cognitive interviews; 25 items were deleted, 94 were revised, and 37 items were retained without changes. The final version of the survey included six sub-sections: the experience of making a decision; information about pregnancy and disability; things affecting a decision; knowing what is important; support for making a decision; and working with health care providers. CONCLUSIONS: The overall performance of the survey supported its content validity and utility as a useful way to gather information about the pregnancy decision-making experience and informational needs of women with physical disabilities.

Patient and Provider-Reported Satisfaction of Cancer Rehabilitation Telemedicine Visits During the COVID-19 Pandemic.

INTRODUCTION: The coronavirus disease 2019 (COVID-19) pandemic has accelerated the growth of telemedicine services across the United States. In this study, we examined cancer rehabilitation patient and physician satisfaction with telemedicine visits. We also sought to evaluate the types of provider services that are given during telemedicine visits. OBJECTIVE: To assess overall patient and provider satisfaction with telemedicine visits and explore whether satisfaction varied by contact method (phone or video) and encounter type (new problem, worsening problem, stable/improving problem). DESIGN: Prospective survey study. SETTING: Cancer rehabilitation program at an academic medical center. PARTICIPANTS: Three cancer rehabilitation providers and 155 unique patients participated in the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Provider and patient satisfaction measured by customized surveys. RESULTS: One hundred eighty-four encounters with 169 unique patients were scheduled. Of these, 14 were new visits and 170 were follow-up visits. Eighteen encounters (9.8%) were either no shows or rescheduled, making for 166 encounters with 155 unique patients. Patient and provider responses comprised the following: 94.8% of patient responses reported "quite a bit" or "very much" for the telemedicine visit being a good experience; 63.1% of patient responses reported "quite a bit" or "very much" for interest in using telemedicine visits in the future; and 83.9% of provider responses reported "quite a bit" or "very much" for the patient's main problem being addressed by the visit. Providers were more likely to prefer an in-person visit for a new or worsening problem versus a stable/improving problem. The most common services provided were medication prescription/titration and education/counseling. The least common services provided were making of new diagnoses, ordering interventional procedures, and making referrals. CONCLUSION: Telemedicine visits were well received by both patients and providers in a cancer rehabilitation medicine clinic setting. However, in the case of a new or worsening problem, satisfaction declined. These data support that telemedicine visits should be considered essential as part of comprehensive cancer rehabilitation care, especially during a public health crisis.

Longitudinal Change and Prediction of Everyday Task Competence in the Elderly.

The present study examined longitudinal change in everyday task competence in a sample of 102 community-dwelling older adults from central Pennsylvania. Subjects were assessed on cognitive abilities, intellectual control beliefs, and everyday task competence in 1979 and 1986. The results indicated significant mean level decline on everyday task competence. However, wide individual differences were apparent in the timing and rate of decline; 62% of the sample remained stable or improved in competence over this seven-year period. Structural equation analyses were conducted to examine lagged relationships among the ability, intellectual control, and everyday task competence constructs. Fluid reasoning ability was a significant longitudinal predictor of subsequent everyday task competence. Everyday task competence was a significant longitudinal predictor of subsequent self-efficacy beliefs regarding intellectual aging. The results suggest that mean level decline in everyday task competence may not represent the intraindividual developmental trajectory of many subjects. Prior level of fluid ability influences subsequent everyday task competence, and prior level of everyday task competence influences levels of self-efficacy beliefs.