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Abstract Background This study aimed to gather information about parental practices, knowledge, and attitudes regarding infant sleep habits and environments, among families who practice non-recommended sleep practices. Methods We conducted one-on-one phone interviews with parents who had practiced non-recommended sleep methods with their infant and had or had not experienced an undesirable sleep event such as a fall. Interviews were recorded and coded with MAXQDA software. Intercoder reliability was assessed for consistency. Results Thirty-one parents consented, and 21 interviews were conducted. Parents were aware of current American Academy of Pediatrics (AAP) sleep recommendations for infants, knew about the sleep risks of non-recommended practices and had access to a recommended sleep environment. Parents reported developing modifications to the sleep environment which they perceived made their infant’s sleep safer. Many parents felt that they could not be honest with their primary care provider about utilizing a non-recommended sleep environment; many had not had a detailed conversation with their primary care provider about safe sleep. Conclusions Our data are consistent with previous studies which demonstrate that lack of access to a recommended sleep space or lack of knowledge about AAP sleep guidelines are not the primary reasons for practicing non-recommended sleep habits. Our data highlights the disconnect between the current AAP safe sleep recommendations and what parents feel is feasible to do on a daily basis. Evaluating the impact of a risk elimination strategy which is used in the US compared with a risk mitigation strategy which is used in other countries on parental practice and ability to communicate honestly with primary care providers is a future area of research.

Abstract Background Substantial work has been done to update or create evidence-based practices (EBPs) in the changing health care landscape. However, the success of these EBPs is limited by low levels of clinician implementation. Objective The goal of this study is to describe the use of standardized/simulated patient/person (SP) methodology as a framework to develop implementation bundles to increase the effectiveness, sustainability, and reproducibility of EBPs across health care clinicians. Design We observed 12 clinicians’ first-time experiences with six unique decision-making algorithms, developed previously using rigorous Delphi methods, for use with patients exhibiting concerning behaviors associated with long-term opioid therapy (LTOT) for chronic pain. Clinicians were paired with two SPs trained to portray individuals with one of the concerning behaviors addressed by the algorithms in a telehealth environment. The SP evaluations were followed by individual interviews, guided by the Consolidated Framework for Implementation Research (CFIR), with each of the clinician participants. Participants Twelve primary care clinicians and 24 SPs in Western Pennsylvania. Main measurement The primary outcome was identifying likely facilitators for the successful implementation of the EBP using the SP methodology. Our secondary outcome was to assess the feasibility of using SPs to illuminate likely implementation barriers and facilitators. Results The SP portrayal illuminated factors that were pertinent to address in the implementation bundle. SPs were realistic in their portrayal of patients with concerning behaviors associated with LTOT for chronic pain, but clinicians also noted that their patients in practice may have been more aggressive about their treatment plan. Conclusions SP simulation provides unique opportunities for obtaining crucial feedback to identify best practices in the adoption of new EBPs for high-risk patients. Setting Zoom simulated patient evaluations.

BackgroundOpioids are a key component of pain management among patients with metastatic cancer pain. However, the evidence base available to guide opioid-related decision-making in individuals with advanced cancer is limited. Patients with advanced cancer or cancer that is unlikely to be cured frequently experience pain. Opioids are a key component of pain management among patients with metastatic cancer pain. Many individuals with advanced cancer are now living long enough to experience opioid-related harm. Emerging evidence from chronic noncancer pain literature suggests that longer-term opioid therapy may have limited benefits for pain and function, and opioid-related harms are also a major concern. However, whether these benefits and harms of opioids apply to patients with cancer-related pain is unknown. ObjectiveThis manuscript outlines the protocol for the “Opioid Therapy for Pain in Individuals With Metastatic Cancer: The Benefits, Harms, and Stakeholder Perspectives (BEST) Study.” The study aims to better understand opioid decision-making in patients with advanced cancer, along with opioid benefits and harms, through prospective examination of patients’ pain experiences and opioid side effects and understanding the decision-making by patients, care partners, and clinicians. MethodsThis is a multicenter, prospective cohort study that aims to enroll 630 patients with advanced cancer, 20 care partners, and 20 clinicians (670 total participants). Patient participants must have an advanced solid cancer diagnosis, defined by the American Cancer Society as cancer that is unlikely to be cured. We will recruit patient participants within 12 weeks after diagnosis so that we can understand opioid benefits, harms, and perspectives on opioid decision-making throughout the course of their advanced cancer (up to 2 years). We will also specifically elicit information regarding long-term opioid use (ie, opioids for ≥90 consecutive days) and exclude patients on long-term opioid therapy before an advanced cancer diagnosis. Lived-experience perspectives related to opioid use in those with advanced cancer will be captured by qualitative interviews with a subset of patients, clinicians, and care partners. Our data collection will be grounded in a behavioral decision research approach that will allow us to develop future interventions to inform opioid-related decision-making for patients with metastatic cancer. ResultsData collection began in October 2022 and is anticipated to end by November 2024. ConclusionsUpon successful execution of our study protocol, we anticipate the development of a comprehensive evidence base on opioid therapy in individuals with advanced cancer guided by the behavioral decision research framework. The information gained from this study will be used to guide interventions to facilitate opioid decisions among patients, clinicians, and care partners. Given the limited evidence base about opioid therapy in people with cancer, we envision this study will have significant real-world implications for cancer-related pain management and opioid-related clinical decision-making. International Registered Report Identifier (IRRID)DERR1-10.2196/54953

Rationale & Objective: Stigma contributes to ineffective treatment for pain among individuals with kidney failure on dialysis, particularly with buprenorphine pain treatment. To address stigma, we adapted a Design Sprint, an industry-developed structured exercise where an interdisciplinary group works over 5 days to clarify the problem, identify and choose a solution, and build and test a prototype. Study Design: Adapted Design Sprint which clarified the problem to be solved, proposed solutions, and created a blueprint for the selected solution. Settings & Participants: Five individuals with pain and kidney disease receiving dialysis, 5 physicians (nephrology, palliative care, and addiction medicine) and 4 large dialysis organization leaders recruited for specific expertise or experience. Conducted through online platform (Zoom) and virtual white board (Miro board). Analytical Approach: Descriptions of the Design Sprint adaptations and processes. Results: To facilitate patient comfort, a patient-only phase included four 90-minute sessions over 2-weeks, during which patient participants used a mapping process to define the critical problem and sketch out solutions. In a physician-only phase, consisting of two 120-minute sessions, participants accomplished the same tasks. During a combined phase of two 120-minute sessions, patients, physicians, and large dialysis organization representatives vetted and developed solutions from earlier phases, leading to an intervention blueprint. Videoconferencing technology allowed for geographically diverse representation and facilitated participation from patients experiencing medical illness. The electronic whiteboard permitted interactive written contributions and voting on priorities instead of only verbal discussion, which may privilege physician participants. A skilled qualitative researcher facilitated the sessions. Limitations: Challenges included the time commitment of the sessions, absences owing to illness or emergencies, and technical difficulties. Conclusions: An adapted Design Sprint is a novel method of efficiently and rapidly incorporating multiple stakeholders to develop solutions for clinical challenges in kidney disease. Plain Language Summary: Stigma contributes to ineffective treatment for pain among individuals with kidney failure on dialysis, particularly when using buprenorphine, an opioid pain medicine with a lower risk of sedation used to treat addiction. To develop a stigma intervention, we adapted a Design Sprint, an industry-developed structured exercise where an interdisciplinary group works over 5 days to clarify the problem, identify and choose a solution, and build and test a prototype. We conducted 3 sprints with (1) patients alone, (2) physicians alone, and (3) combined patients, physicians, and dialysis organization representatives. This paper describes the adaptations and products of sprints as a method for gathering diverse stakeholder voices to create an intervention blueprint efficiently and rapidly.

Introduction: Rural populations routinely rank poorly on common health indicators. While it is understood that rural residents face barriers to health care, the exact nature of these barriers remains unclear. To further define these barriers, a qualitative study of primary care physicians practicing in rural communities was performed. Methods: Semistructured interviews were conducted with primary care physicians practicing in rural areas within western Pennsylvania, the third largest rural population within the USA, using purposively sampling. Data were then transcribed, coded, and analyzed by thematic analysis. Results: Three key themes emerged from the analysis addressing barriers to rural health care: (1) cost and insurance, (2) geographic dispersion, and (3) provider shortage and burnout. Providers mentioned strategies that they either employed or thought would be beneficial for their rural communities: (1) subsidize services, (2) establish mobile and satellite clinics (particularly for specialty care), (3) increase utilization of telehealth, (4) improve infrastructure for ancillary patient support (ie social work services), and (5) increase utilization of advanced practice providers. Conclusion: There are numerous barriers to providing rural communities with quality health care. Barriers that are encountered are multidimensional. Patients are unable to obtain the care they need because of cost-related barriers. More providers need to be recruited to rural areas to combat the shortage and burnout. Advanced care-delivery methods such as telehealth, satellite clinics, or advanced practice providers can help bridge the gaps caused by geographic dispersion. Policy efforts should target all these aspects in order to appropriately address rural healthcare needs.

Importance: Race-based disparities in atrial fibrillation (AF) outcomes are well-documented, but few studies have investigated individuals' experiences of living with the condition, particularly among Black individuals. Objective: We aimed to identify common themes and challenges experienced by individuals of Black race with AF. Design: A tailored, qualitative script was developed to assess the perspectives of participants in focus groups. Setting: Virtual focus groups. Participants: Three focus groups of 4–6 participants (16 participants total) were recruited from the racial/ethnic minority participants in the Mobile Relational Agent to Enhance Atrial Fibrillation Self-care Trial. Main outcomes and measures: Focus group transcripts were inductively coded to identify common themes. Results: Nearly all participants self-identified as Black race (n = 15, 93.8 %). Participants were mostly male (62.5 %) with mean age of 67 (range 40–78) years. Three themes were identified. First, participants described physical and mental burdens associated with having AF. Second, participants described AF as being a condition that is difficult to manage. Lastly, participants identified key tenets to support self-management of AF (self-education, community support, and patient-provider relationships). Conclusions and relevance: Participants reported AF is unpredictable and challenging to manage, and that social and community supports are essential. The social and behavioral themes identified in this qualitative research highlight the need for tailored clinical strategies for AF self-management which incorporate individuals' social contexts. Trial registration: National Clinical Trial number 04075994.

Objective To identify critical illness survivors’ perceived barriers and facilitators to resuming performance of meaningful activities when transitioning from hospital to home.Design Secondary content analysis of semistructured interviews about patients’ experiences of intensive care (primary analysis disseminated on the patient-facing website www.healthtalk.org). Two coders characterised patient-perceived barriers and facilitators to resuming meaningful activities. To facilitate clinical application, we mapped the codes onto the Person-Task-Environment model of performance, a patient-centred rehabilitation model that characterises complex interactions among the person, task and environment when performing activities.Setting United Kingdom, 2005–2006.Participants 39 adult critical illness survivors, sampled for variation among demographics and illness experiences.Results Person-related barriers included negative mood or affect, perceived setbacks; weakness or limited endurance; pain or discomfort; inadequate nutrition or hydration; poor concentration/confusion; disordered sleep/hallucinations/nightmares; mistrust of people or information; and altered appearance. Task-related barriers included miscommunication and managing conflicting priorities. Environment-related barriers included non-supportive health services and policies; challenging social attitudes; incompatible patient–family coping (emotional trauma and physical disability); equipment problems; overstimulation; understimulation; and environmental inaccessibility. Person-related facilitators included motivation or attitude; experiencing progress; and religion or spirituality. Task-related facilitators included communication. Environment-related facilitators included support from family, friends or healthcare providers; supportive health services and policies; equipment; community resources; medications; and accessible housing. Barriers decreased and facilitators increased over time. Six barrier–facilitator domains dominated based on frequency and emphasis across all performance goals: mood/motivation, setbacks/progress, fatiguability/strength; mis/communication; lack/community support; lack/health services and policies.Conclusions Critical illness survivors described a comprehensive inventory of 18 barriers and 11 facilitators that align with the Person-Task-Environment model of performance. Six dominant barrier–facilitator domains seem strong targets for impactful interventions. These results verify previous knowledge and offer novel opportunities for optimising patient-centred care and reducing disability after critical illness.