A qualitative study of recruitment strategies: Perspectives from older adults living with diabetes.

AIMS: There is a need to increase representation of diverse older adults in health-related qualitative research to better understand and improve chronic disease care over the lifespan. Our aim was to elicit perspectives about research recruitment among a diverse sample of older adults with diabetes participating in a qualitative study. METHODS: Older adults with diabetes and caregivers were recruited through purposive sampling for semi-structured interviews focused on diabetes self care. Six questions were used to explore recruitment strategies and recommendations for engaging older adults in research. We analysed interview transcripts using descriptive analysis to identify themes related to engaging older adults in research studies. RESULTS: Seventeen older adults with diabetes and three caregivers participated (N = 20). Descriptive analysis revealed four themes: (1) Recruitment of older adults requires varied strategies to overcome barriers to engagement and participation; (2) Building and leveraging personal relationships is central to successful recruitment; (3) Transparent communication about the research process and value of the study is needed to inform and motivate older adults to participate; and (4) Research offers a connection to a broader community: sharing, learning and helping others. CONCLUSIONS: We found four main themes related to the complexity of recruiting older adults for research studies. These insights may inform more effective, equitable and inclusive recruitment efforts targeted at older adults in the future.

Supporting the 'lived expertise' of older adults with type 1 diabetes: An applied focus group analysis to characterize barriers, facilitators, and strategies for self-management in a growing and understudied population.

INTRODUCTION: There is a growing number of older adults (≥65 years) who live with type 1 diabetes. We qualitatively explored experiences and perspectives regarding type 1 diabetes self-management and treatment decisions among older adults, focusing on adopting care advances such as continuous glucose monitoring (CGM). METHODS: Among a clinic-based sample of older adults ≥65 years with type 1 diabetes, we conducted a series of literature and expert informed focus groups with structured discussion activities. Groups were transcribed followed by inductive coding, theme identification, and inference verification. Medical records and surveys added clinical information. RESULTS: Twenty nine older adults (age 73.4 ± 4.5 years; 86% CGM users) and four caregivers (age 73.3 ± 2.9 years) participated. Participants were 58% female and 82% non-Hispanic White. Analysis revealed themes related to attitudes, behaviours, and experiences, as well as interpersonal and contextual factors that shape self-management and outcomes. These factors and their interactions drive variability in diabetes outcomes and optimal treatment strategies between individuals as well as within individuals over time (i.e. with ageing). Participants proposed strategies to address these factors: regular, holistic needs assessments to match people with effective self-care approaches and adapt them over the lifespan; longitudinal support (e.g., education, tactical help, sharing and validating experiences); tailored education and skills training; and leveraging of caregivers, family, and peers as resources. CONCLUSIONS: Our study of what influences self-management decisions and technology adoption among older adults with type 1 diabetes underscores the importance of ongoing assessments to address dynamic age-specific needs, as well as individualized multi-faceted support that integrates peers and caregivers.

Use of systems thinking and adapted group model building methods to understand patterns of technology use among older adults with type 1 diabetes: a preliminary process evaluation.

BACKGROUND: A growing number of older adults (ages 65+) live with Type 1 diabetes. Simultaneously, technologies such as continuous glucose monitoring (CGM) have become standard of care. There is thus a need to understand better the complex dynamics that promote use of CGM (and other care innovations) over time in this age group. Our aim was to adapt methods from systems thinking, specifically a participatory approach to system dynamics modeling called group model building (GMB), to model the complex experiences that may underlie different trajectories of CGM use among this population. Herein, we report on the feasibility, strengths, and limitations of this methodology. METHODS: We conducted a series of GMB workshops and validation interviews to collect data in the form of questionnaires, diagrams, and recordings of group discussion. Data were integrated into a conceptual diagram of the "system" of factors associated with uptake and use of CGM over time. We evaluate the feasibility of each aspect of the study, including the teaching of systems thinking to older adult participants. We collected participant feedback on positive aspects of their experiences and areas for improvement. RESULTS: We completed nine GMB workshops with older adults and their caregivers (N = 33). Each three-hour in-person workshop comprised: (1) questionnaires; (2) the GMB session, including both didactic components and structured activities; and (3) a brief focus group discussion. Within the GMB session, individual drawing activities proved to be the most challenging for participants, while group activities and discussion of relevant dynamics over time for illustrative (i.e., realistic but not real) patients yielded rich engagement and sufficient information for system diagramming. Study participants liked the opportunity to share experiences with peers, learning and enhancing their knowledge, peer support, age-specific discussions, the workshop pace and structure, and the systems thinking framework. Participants gave mixed feedback on the workshop duration. CONCLUSIONS: The study demonstrates preliminary feasibility, acceptability, and the value of GMB for engaging older adults about key determinants of complex health behaviors over time. To our knowledge, few studies have extended participatory systems science methods to older adult stakeholders. Future studies may utilize this methodology to inform novel approaches for supporting health across the lifespan.

Comparative Evaluation of 2 Work Experience Approaches for Predominantly Black Youth in a Rural Community: Implications for Public Health Workforce Development.

CONTEXT: In order to create a more diverse workforce, there is a need to involve historically excluded youth in public health-related work. Youth involvement in asset-based work experience approaches is especially relevant for rural areas with workforce shortages. OBJECTIVE: To explore the public health workforce development implications of community-based career exploration and asset mapping work experience from the perspective of Black youth. DESIGN: We used qualitative in-depth interviews with youth, aged 14 to 22 years, who participated in a work experience program anchored in several rural counties in southeastern United States. A phenomenological lens was applied for qualitative analyses with iterative, team-based data coding. Participants were also surveyed pre- and postprogram to supplement findings. PROGRAM: A rural community-based organization's work experience program consisted of 2 tracks: (1) Youth Connect-a career exploration track that included work placement within community agencies; and (2) MAPSCorps-a track that employs youth to conduct asset mapping for their community. RESULTS: We interviewed 28 of 31 total participants in the 2 tracks. We uncovered 4 emergent profiles in how youth described shifts in their perceptions of community: (1) Skill Developers; (2) Community Questioners; (3) Community Observers; and (4) Community Enthusiasts. In comparing between tracks, youth who participated in work experience that involved asset mapping uniquely described increased observation and expanded view of community resources and had greater increases in research self-efficacy than youth who participated only in career exploration. CONCLUSION: Asset mapping work experience that is directly placed in rural communities can expose Black youth to and engage them in essential public health services (assessing and mobilizing community assets) that impact their community. This type of program, directly integrated into rural communities rather than placed near academic centers, could play a role in creating a more diverse public health workforce.

"If you're in a community together, then you're basically a family": Perceptions of community among a predominantly African-American/Black youth cohort in a semi-rural region in the Southeastern United States.

Geographic racism gives rise to health inequities that impact communities in detrimental ways. Southern ethnic minority groups, particularly African American/Black semi-rural communities, are subject to especially unjust outcomes in health, education, and wealth. Asset-based community development (ABCD) is a way of engaging with communities in participatory and positive ways that center community voices as expert. Youth can participate in ABCD, are sensitive to the ways in which their communities are structured, and have insights as to how to improve the places they live. We undertook a qualitative interview study which included a cognitive mapping exercise with 28 youth to understand how African American/Black youth who had participated in an ABCD-informed summer program conceptualized community and preferences about where they lived. Using a phenomenological approach to qualitative analysis, our study revealed that many youth defined community as a combination of people and place, enjoyed engaging with unique resources in their communities as well as seeking peace and quiet, experienced hardships as "something everybody knows" when observing constraints on their communities, and were committed to their communities and interested in seeing-and participating in-their flourishing. Our study provides a nuanced and contemporary understanding of the ways in which African American/Black semi-rural youth experience community which can contribute to cyclical asset-based development strategy aimed at empowering young people and improving health outcomes in resilient communities.

Academic physician specialists' views toward the unproven stem cell intervention industry: areas of common ground and divergence.

BACKGROUND AND AIMS: Premature commercialization of unproven stem cell interventions (SCIs) has received significant attention within the regenerative medicine community. Patients considering SCIs may encounter misinformation and seek out guidance from their physicians who are trusted brokers of health information. However, little is known about the perspectives of academic physician specialists toward the SCI industry. The purpose of this study was to capture the attitudes of physician specialists with experience addressing patient questions about unproven SCIs. METHODS: The authors undertook 25 semi-structured interviews with academic physicians in cardiology, ophthalmology, orthopedics, pulmonology and neurology primarily from one academic center. RESULTS: The authors identified two major themes: concerns and mediators of appropriateness of offering SCIs as therapies to patients. Specialists were generally aware of the industry and reported scientific and commercial concerns, including the scientific uncertainty of SCIs, medical harms to patients, misleading marketing and its impact on patient informed consent and economic harms due to large out-of-pocket costs for patients. All specialists outside of orthopedics voiced that it was inappropriate to be offering SCIs to patients today. These views were informed by previously expressed concerns surrounding safety and properly informing patients, levels of evidence needed prior to offering SCIs therapeutically and desired qualifications for clinicians. Among the specialties, orthopedists reported that under certain conditions, SCIs may be appropriate for patients with limited clinical options but only when safety is adequate, expectations are managed and patients are well informed about the risks and chances of benefit. Most participants expressed a desire for phase 3 studies and Food and Drug Administration approval prior to marketing SCIs, but some also shared the challenges associated with upholding these thresholds of evidence, especially when caring for out-of-option patients. CONCLUSIONS: The authors' results suggest that medical specialists are aware of the industry and express several concerns surrounding SCIs but differ in their views on the appropriateness and clinical evidence necessary for offering SCIs currently to patients. Additional educational tools may help physicians with patient engagement and expectation management surrounding SCIs.

Impact of post-Dobbs abortion restrictions on maternal-fetal medicine physicians in the Southeast: a qualitative study.

BACKGROUND: The United States Supreme Court overturned federal abortion protections in Dobbs v Jackson Women's Health Organization. Many states in the Southeastern United States responded with restrictive policies that limit and criminalize abortion care. OBJECTIVE: This study aimed to characterize the effect of abortion restrictions on maternal-fetal medicine physicians in the Southeastern United States after the Dobbs decision. STUDY DESIGN: Qualitative, semistructured interviews with 35 maternal-fetal medicine physicians in 10 Southeastern states between February 2023 and June 2023 were conducted. Our recruitment strategy relied on convenience and snowball sampling. Audio-recorded interviews were analyzed using Dedoose software and a descriptive qualitative approach that incorporated deductive and inductive approaches. RESULTS: Emergent themes were identified, and a conceptual framework was developed on the basis of overarching themes. This study found that abortion laws and external constraints after the Dobbs decision resulted in ethical, professional, and legal challenges for maternal-fetal medicine physicians that led to changes in clinical practice and deviations from patient-centered care. These forced changes resulted in negative effects on maternal-fetal medicine physicians, such as increased fear, hypervigilance, and increased workload. In addition, these changes prompted concerns about health risks and negative emotional effects for patients. Supportive colleagues, hospital systems, and policies were associated with decreased stress, emotional distress, and disruption of healthcare delivery. CONCLUSION: Abortion restrictions in the Southeastern United States limit the ability of maternal-fetal medicine physicians to provide or facilitate abortions in the setting of fetal anomalies and maternal health risks. Maternal-fetal medicine physicians perceived these restrictions to have negative professional and emotional repercussions for themselves and negative effects on patients. Supportive colleagues and clear guidance from hospital systems and departments on how to interpret the laws were protective. Our findings have implications for the maternal-fetal medicine workforce and patient care in the region.

A conceptual model of the continuous glucose monitoring integration process for older adults with diabetes developed using participatory systems science methods.

AIMS: Continuous glucose monitoring (CGM) use remains low in older adults. We aimed to develop a conceptual model of CGM integration among older adults with type 1 and type 2 diabetes. METHODS: We previously engaged older adults with type 1 diabetes using participatory system science methods to develop a model of the system of factors that shape CGM integration. To validate and expand the model, we conducted semi-structured interviews with 17 older adults with type 1 and type 2 diabetes and 3 caregivers. Vignettes representing each integration phase were used to elicit outcomes and strategies to support CGM use. Data were analyzed using team-based causal loop diagraming. RESULTS: The model includes six phases spanning (1) CGM uptake; (2) device set-up; acquisition of (3) belief in oneself to use CGM effectively; (4) belief that CGM is preferable to blood glucose monitoring; (5) belief in future CGM benefits CGM; and (6) development of a sense of reliance on CGM. Causal loop diagrams visualize factors and feedback loops shaping outcomes at each phase. Participants proposed support strategies spanning clinical, educational, and behavioral interventions. CONCLUSIONS: The model underscores the complex transition of learning new technology and provides opportunities for tailored support for older adults.

Supporting reproductive health among birthing persons with chronic conditions in the United States: A qualitative multilevel study using systems thinking to inform action.

OBJECTIVE (STUDY QUESTION): To use systems thinking with diverse system actors to (a) characterize current problems at the intersection of chronic conditions (CCs) and reproductive health (RH) care and their determinants, (b) determine necessary system actors for change, and (c) document cross-system actions that can improve identified problems in the United States. DATA SOURCES/STUDY SETTING: Data were collected from six groups of system actors via online focus groups. STUDY DESIGN: This is a qualitative multilevel study using the iceberg systems thinking framework. DATA COLLECTION/EXTRACTION METHODS: Data were collected by note-taking and recording six focus groups; analysis incorporated perspective triangulation using the systems thinking iceberg and system mapping to visualize interconnected system challenges, actors, and action ideas. PRINCIPAL FINDINGS: Participants described eight necessary system actors: health care institutions, medical leaders, medical providers, patient advocates and foundations, patients and families, payors, policy makers, and research funders. Forty pain points were identified, spread across each of the four levels of the systems thinking iceberg: undesirable outcomes (6), concerning trends (9), system structure flaws (15), and problematic mental models (10). In response to these pain points, a set of 46 action ideas was generated by participants and mapped into nine action themes: (1) adjust QI metrics, incentives, and reimbursement, (2) bolster RH medical education and training, (3) break down medical silos, (4) enrich patient education, (5) expand the health care team, (6) improve holistic health care, (7) modify research and programmatic funding to prioritize RH and CC, (8) spur innovation for patient visits, and (9) support professional champions and leaders. CONCLUSIONS: By embracing system complexity, creating visual maps, and pushing participants to identify actionable strategies for improvement, this study generates a set of specific actions that can be used to address pain points across the multiple system levels that make improving reproductive care for people with CCs so challenging.

"Nothing is linear": Characterizing the determinants and dynamics of CGM use in older adults with type 1 diabetes.

AIMS: Continuous glucose monitoring (CGM) can reduce hypoglycemia in older adults with type 1 diabetes (T1D). We aimed to characterize factors that influence effective use in this age group. METHODS: Older adults with type T1D (age ≥ 65) and their caregivers participated in one of a series of parallel group model building workshops, a participatory approach to system dynamics involving drawing and scripted group activities. Data were synthesized in a qualitative model of the hypothesized system of factors producing distinct patterns of CGM use in older adults. The model was validated through virtual follow-up interviews. RESULTS: Data were collected from 33 participants (four patient-caregiver dyads, mean age 73.8 ± 4.4 years [range 66-85 years]; 16 % non-CGM users, 79 % pump users). The system model delineates drivers of CGM uptake, drivers of ongoing CGM use, and feedback loops that either reinforce or counteract future CGM use. Participants emphasized the importance of different sets of feedback loops at different points in the duration of CGM use. CONCLUSIONS: The holistic system model underscores that factors and feedback loops driving effective CGM use in older adults are both individualized and dynamic (e.g., changing over time), suggesting opportunities for staged and tailored age-specific education and support.

A framework for examining patient attitudes regarding applications of artificial intelligence in healthcare.

Background: While use of artificial intelligence (AI) in healthcare is increasing, little is known about how patients view healthcare AI. Characterizing patient attitudes and beliefs about healthcare AI and the factors that lead to these attitudes can help ensure patient values are in close alignment with the implementation of these new technologies. Methods: We conducted 15 focus groups with adult patients who had a recent primary care visit at a large academic health center. Using modified grounded theory, focus-group data was analyzed for themes related to the formation of attitudes and beliefs about healthcare AI. Results: When evaluating AI in healthcare, we found that patients draw on a variety of factors to contextualize these new technologies including previous experiences of illness, interactions with health systems and established health technologies, comfort with other information technology, and other personal experiences. We found that these experiences informed normative and cultural beliefs about the values and goals of healthcare technologies that patients applied when engaging with AI. The results of this study form the basis for a theoretical framework for understanding patient orientation to applications of AI in healthcare, highlighting a number of specific social, health, and technological experiences that will likely shape patient opinions about future healthcare AI applications. Conclusions: Understanding the basis of patient attitudes and beliefs about healthcare AI is a crucial first step in effective patient engagement and education. The theoretical framework we present provides a foundation for future studies examining patient opinions about applications of AI in healthcare.

"I Think It's Been Met With a Shrug:" Oncologists' Views Toward and Experiences With Right-to-Try.

BACKGROUND: The federal Right-to-Try (RTT) Act created an alternate regulatory pathway for preapproval access to investigational drugs. A few studies have examined the experiences of physicians with the Food and Drug Administration's Expanded Access Programs, but to our knowledge, no study has yet to examine their attitudes and experiences toward RTT. METHODS: This study explored the views of 21 oncologists at a major cancer center with 3 main sites across the United States using semi-structured interviews and qualitative analysis. Participants were selected to have experience with Expanded Access Programs. RESULTS: Most oncologists had limited familiarity with RTT, and several reported confusion about the legislation, including whether patients have a right to investigational drugs and an obligation for companies to provide them. Although oncologists were interested in decreased regulatory burdens, 3 areas of concern were articulated: lack of safety and oversight, unclear structure and no provision for data collection, and potential heightening of patient expectations. Only 4 oncologists had experience discussing RTT, and none formally attempted to obtain the drug through this mechanism. Participants questioned the practicality of RTT legislation and suggested alternative ways to improve access. CONCLUSIONS: The study provides foundational empirical data underlying challenging ambiguities by experienced oncologists familiar with off-trial use of investigational therapeutics and reaffirms the role of physicians and regulatory bodies in mitigating the risks of investigational drugs. Our findings highlight the need for medical centers to inform oncologists about RTT and other preapproval pathways so that they are able to address questions from patients interested in nontrial investigational drugs.

Patient apprehensions about the use of artificial intelligence in healthcare.

While there is significant enthusiasm in the medical community about the use of artificial intelligence (AI) technologies in healthcare, few research studies have sought to assess patient perspectives on these technologies. We conducted 15 focus groups examining patient views of diverse applications of AI in healthcare. Our results indicate that patients have multiple concerns, including concerns related to the safety of AI, threats to patient choice, potential increases in healthcare costs, data-source bias, and data security. We also found that patient acceptance of AI is contingent on mitigating these possible harms. Our results highlight an array of patient concerns that may limit enthusiasm for applications of AI in healthcare. Proactively addressing these concerns is critical for the flourishing of ethical innovation and ensuring the long-term success of AI applications in healthcare.

Academic Physician Specialists' Approaches to Counseling Patients Interested in Unproven Stem Cell and Regenerative Therapies-A Qualitative Analysis.

OBJECTIVE: To explore the experiences, approaches, and challenges of physicians consulting patients about experimental stem cell and regenerative medicine interventions (SCRIs). PARTICIPANTS AND METHODS: From August 21, 2018, through July 30, 2019, semistructured interviews of 25 specialists in cardiology, ophthalmology, orthopedics, pulmonology, and neurology were conducted and qualitatively analyzed using modified grounded theory. RESULTS: All specialists used informational approaches to counsel patients, especially orthopedists. Informational approaches included explaining stem cell science, sharing risks, and providing principles. Several specialists also used relational counseling approaches including emphasizing that physicians want what is best for patients, acknowledging suffering, reassuring continued care, empathizing with patients and families, and underscoring that patients have the final decision. Many specialists reported being comfortable with the conversation, although some were less comfortable and several noted challenges in the consultation including wanting to support a patient's decision but worrying about harms from unproven SCRIs, navigating family pressure, and addressing stem cell hype and unrealistic expectations. Specialists also desired that additional resources be available for them and patients. CONCLUSION: Physicians relied more heavily on providing patients with information about SCRIs than using relational counseling approaches. Efforts should be directed at helping physicians address the informational and relational needs of patients, including providing tools and resources that inform physicians about the unproven SCRI industry, building skills in empathic communication, and the creation and dissemination of evidence-based resources to offer patients.

Oncologists' reflections on patient rights and access to compassionate use drugs: A qualitative interview study from an academic cancer center.

The U.S. Food and Drug Administration (FDA) allows patients with serious illnesses to access investigational drugs for "compassionate use" outside of clinical trials through expanded access (EA) Programs. The federal Right-to-Try Act created an additional pathway for non-trial access to experimental drugs without institutional review board or FDA approval. This removal of oversight amplifies the responsibility of physicians, but little is known about the role of practicing physicians in non-trial access to investigational drugs. We undertook semi-structured interviews to capture the experiences and opinions of 21 oncologists all with previous EA experience at a major cancer center. We found five main themes. Participants with greater EA experience reported less difficulty accessing drugs through the myriad of administrative processes and drug company reluctance to provide investigational products while newcomers reported administrative hurdles. Oncologists outlined several rationales patients offered when seeking investigational drugs, including those with stronger health literacy and a good scientific rationale versus others who remained skeptical of conventional medicine. Participants reported that most patients had realistic expectations while some had unrealistic optimism. Given the diverse reasons patients sought investigational drugs, four factors-scientific rationale, risk-benefit ratio, functional status of the patient, and patient motivation-influenced oncologists' decisions to request compassionate use drugs. Physicians struggled with a "right-to-try" framing of patient access to experimental drugs, noting instead their own responsibility to protect patients' best interest in the uncertain and risky process of off-protocol access. This study highlights the willingness of oncologists at a major cancer center to pursue non-trial access to experimental treatments for patients while also shedding light on the factors they use when considering such treatment. Our data reveal discrepancies between physicians' sense of patients' expectations and their own internal sense of professional obligation to shepherd a safe process for patients at a vulnerable point in their care.

Stem cell preservation for regenerative therapies: ethical and governance considerations for the health care sector.

The stem cell preservation industry has grown substantially with private businesses, public hospitals, and academic medical centers considering preserving induced pluripotent stem cells, mesenchymal stem cells, and other cell types of patients and the public in order to potentially use them for stem cell therapy should such an intervention exist in the future. Despite this growth and interest among private firms and academic centers, no study has yet considered the bioethical issues of such platforms. In this article, we explore several ethical and social issues related to the biopreservation of stem cells for future regenerative therapies. We analyze a range of bioethical considerations that public and private institutions should bear in mind as they develop stem cell preservation platforms. These include medical validation of regenerative interventions and their influence on the public understanding of stem cell therapies, the impact of public trust of organizations creating a private, for-profit venture of stem cell preservation, and logistical issues in the governance of the collection including ownership and dispositional authority, informed consent and access, and withdrawal and non-payment. These considerations should be incorporated into current and future stem cell preservation platforms in order to promote the responsible translation of regenerative medicine.

Challenging misinformation and engaging patients: characterizing a regenerative medicine consult service.

Aim: To address the unmet needs of patients interested in regenerative medicine, Mayo Clinic created a Regenerative Medicine Consult Service (RMCS). We describe the service and patient satisfaction. Materials & methods: We analyzed RMCS databases through retrospective chart analysis and performed qualitative interviews with patients. Results: The average patient was older to elderly and seeking information about regenerative options for their condition. Patients reported various conditions with osteoarthritis being most common. Over a third of consults included discussions about unproven interventions. About a third of patients received a clinical or research referral. Patients reported the RMCS as useful and the consultant as knowledgeable. Conclusion: An institutional RMCS can meet patients' informational needs and support the responsible translation of regenerative medicine.