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Aims: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. Design: Experience‐based co‐design. Methods: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. Results: Twenty‐three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient–provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow‐up care. Conclusion: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. Implications for the Profession and/or Patient Care and Impact: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. Reporting Method: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. Patient or Public Contribution: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience‐based co‐design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co‐design events, to support symptom management for people with multimorbidity. [ABSTRACT FROM AUTHOR]

Introduction: The period of time before an elective operation may be an opportune time to engage older adults in advance care planning (ACP). Past interventions have not been readily incorporated into surgical workflows leaving a need for ACP tools that are generalizable, easy to implement, and effective. Design: This is a qualitative study. Setting and Subjects: Older adults with a history of cancer and a recent major operation were recruited through their surgical oncologist at a tertiary medical center in the United States. Interviews were conducted to determine how to adapt the validated PrepareForYourCare.org ACP program with electronic health record prompts for the perioperative setting and openness to introducing ACP during a presurgical visit. We used qualitative content analysis to determine themes. Results: Eight themes were identified: (1) ACP as static and private, (2) people expected a prompt, (3) family trusted to do the "right" thing, (4) lack of relationship or comfort with providers, (5) a team-based approach can be helpful, (6) surgeon's expertise (e.g., prognosis and surgical risk), (7) ACP belongs on the surgical checklist, and (8) patients would welcome a conversation starter. Discussion: Older surgical patients are interested in engaging with ACP, particularly if prompted, and believe it has a place on the preoperative "checklist." Conclusions: To effectively engage patients with ACP, a combination of routine prompts by the health care team and patient-centered follow-up may be required. [ABSTRACT FROM AUTHOR]

Explanatory models are culturally informed representations of illness that convey understandings of the etiology and expected course of disease. Substantial research has explored lay explanatory models, but examining physicians' clinical explanatory models can also provide insight into patients' understandings of illness because physicians are a foundational source of authoritative knowledge that shapes lay concepts of illness and disease. This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children. We conducted semi-structured qualitative interviews with 20 pediatric gastroenterologists across the United States about their clinical communication and explanatory models. We identified two primary explanatory models used to describe immune dysregulation in pediatric IBD: the defense and protection model, which characterizes the immune system as an army that erroneously sees the body as "non-self" and attacks it; and the switch model, which conceptualizes treatment as activating a switch that turns off a faulty immune response. We also identified two models used by some physicians to describe inflammation: the scratch and scrape model, which compares IBD inflammation to scratches or scrapes on the skin; and the bonfire model, which compares inflammation to a fire in need of extinguishing. While the use of militaristic metaphors is pervasive in medicine, describing autoimmunity as a battle against the self may lead children to perceive their body as the enemy. This may be compounded by describing the immune system as "confused" while noting its ongoing protective function. Use of these explanatory models may nevertheless improve patient disease-related knowledge. [ABSTRACT FROM AUTHOR]

Background and Objectives The incarcerated population is growing older and by the year 2030, more than one third of people incarcerated in the United States will be over the age of 55. This population shift will have a profound impact on correctional health care systems as older incarcerated people often have multiple chronic illnesses and correctional institutions were not designed with aging and disability in mind. Black women experience greater burdens of comorbid conditions and are disproportionately represented among incarcerated women. Research Design and Methods We utilized Black Feminist Epistemological Methodology to explore the intersection of aging, chronic illness, and mass incarceration via in-depth interviews with 13 formerly incarcerated older Black women. Results First, participants described needing to prove themselves to be trustworthy prior to becoming ill in order to be believed and granted access to care when they report symptoms. Next, participants report being treated, not as patients, but as "inmates." The punitive nature of prison health care disrupted the patient–provider relationship and complicated the ability of patients to maintain autonomy in health care interactions. Finally, I describe how carceral health extends beyond the walls of both the clinic and the institution. Discussion and Implications For older Black women, medical care and decision making inside prisons occur within a punitive context, which presents unique barriers when seeking care. Their experiences of health and illness while incarcerated may continue to influence if and how they seek care as they age in the community and thus must be interrogated when discussing aging in the Black community. [ABSTRACT FROM AUTHOR]

Background: Patient-physician relationships in healthcare can influence healthcare provision, patient engagement, and health outcomes. Little is known about youth preferences on types and characteristics of their healthcare providers. The aim of this study was to assess youth perspectives on preferences for and interactions with their healthcare providers. Methods: We posed 5 open-ended questions to 1,163 MyVoice participants, a nationwide text message cohort of United States youth aged 14–24, on April 10, 2020 related to youth preferences for healthcare providers. Content analysis was used to develop a codebook. Responses were independently coded by two reviewers with discrepancies discussed to reach consensus. Descriptive statistics were calculated for demographics and frequency of codes. Results: 944 (81%) participants responded to at least one question. Respondents had a mean age of 18.9 years (SD: 2.8) and were a majority female (53.6%) and White (56.3%). Youth reported "kindness" or other personality traits (31%) and education (30%) as important in choosing their doctor. Patient-physician concordance was not important to many youths (44%) and among those who reported concordance as important (55%), having the same gender was the most noted (68%). Youth suggested respect, open conversation, and addressing issues directly to help alleviate uncomfortable situations, though some would simply switch providers. Conclusion: Personality and empathy are important provider characteristics valued by youth. Female respondents preferred gender concordant providers, particularly for sexual health-related issues, and non-white respondents were more likely to prefer racial concordance. Strengthening professional and interpersonal skills among youth-serving providers may improve healthcare engagement and satisfaction among youth. [ABSTRACT FROM AUTHOR]

Purpose: Transgender individuals who pursue gender affirmation medical procedures often need to navigate a complex health system and interact with multiple health care providers in primary and specialty care. We sought to better understand patient, provider, and system level barriers to transgender care in a large integrated health care system in California. Methods: Three 90-min focus groups were conducted with 13 transgender individuals who received specialty care between April and August 2018 in Kaiser Permanente Southern California. Results: Participants cited common adversities such as misgendering and system-wide insensitivity during health care encounters and low levels of understanding of their transgender experience among primary care providers. Provider–patient relationship improvements were recommended for pre- and postsurgical care and service-provider sensitivity training. Suggestions include better care coordination, reducing redundancy in clearance for specialty care services, and enhancing patient support for navigation of gender affirmation services. Participants requested careful consideration when implementing systemwide routine processes such as using pronouns and names when calling patients in for visits or describing procedures on service invoices. Conclusions: Education and training programs for improving transgender care competency and enhancing care coordination between primary care and specialty care for transgender patients are warranted. Including transgender voices with lived-experience as active stakeholders in ongoing efforts such as community advisory boards to identify care gaps may facilitate patient-centered and culturally sensitive transgender care and increased patient satisfaction. Policy Implications: There is a need for systematic training for transgender care competent providers and enhancement of care coordination between primary care and specialty care. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. Background: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. Design: An inductive qualitative inquiry. Methods: In‐depth, semi‐structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. Results: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. Conclusion: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. Relevance to Clinical Practice: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision‐making. Clinician educational modules that include family perspectives may improve patient/parent–provider relationships. Participant Contribution Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript. [ABSTRACT FROM AUTHOR]

Coronavirus disease (COVID-19) may cause long-lasting adverse consequences after acute recovery, including functional limitations and reduced work capacity. Individuals with long-lasting complications of COVID-19 are known as long-haulers. There is a knowledge gap on how COVID-19 complications affect return-to-work (RTW) efforts. We aimed to describe the challenges that long-haulers encounter when returning to work from the perspectives of rehabilitation professionals. In this study, four certified rehabilitation counselors and four rehabilitation physicians in U.S. outpatient rehabilitation centers participated in focus groups. Participants discussed challenges in working with long-haulers, including personal attributes, post–COVID-19 symptoms and complications, uncertain recovery and unpredictable outcomes, limited health care accessibility and support, and unsupportive work environments. Participants provide individualized services to meet long-haulers' diverse needs as they do for all persons with disabilities, although they expressed uncertainty due to the variable disease course and risk of infection. Modifying workplace policies, especially gradual RTW, were frequently mentioned accommodations. The findings highlight the RTW issues of long-haulers. We provide recommendations on increasing awareness of the challenges and job accommodations of long-haulers. [ABSTRACT FROM AUTHOR]

The rapidly growing racially diverse ageing population in the United States presents unique challenges for the country's social, economic, and healthcare systems. Rising health care costs, increased patient cost-sharing, and limited financial resources make this generation of older Americans susceptible to large medical bills or debt, which disproportionally impacts older adults who are from racial/ethnic minority communities. Cost of care (CoC) conversations between patients and healthcare providers is one recommended approach for containing healthcare costs and alleviating patients' financial burden of care. The current study used focus group methods to qualitatively explore the contextual factors that influence CoC conversations in a diverse sample of older adults (N = 27). Three focus groups were held with non-Hispanic White (n = 10), Black/African American (n = 9), and Hispanic (n = 8) participants. Thematic analysis yielded four broad themes. The results suggest that CoC conversations do not occur with physicians. The facilitators of CoC conversations included positive provider affect, rapport/relationship building, and communication. Barriers included lack of physician training, wait time, lack of focus on the patient, language, provider preferences, fear of physicians, and religion. There were significant differences in the facilitators and barriers across racial/ethnic groups. It is critical for physicians to have the tools and training to successfully discuss CoC with older patients. Cultural competency training and provider awareness of patient preferences and expectations may be important when it comes to enhancing rapport and increase the likelihood of these important conversations within racial/ethnic minority communities. [ABSTRACT FROM AUTHOR]

People with disabilities face barriers when attempting to gain access to health care settings. Using qualitative analysis of three physician focus groups, we identified physical, communication, knowledge, structural, and attitudinal barriers to care for people with disabilities. Physicians reported feeling overwhelmed by the demands of practicing medicine in general and the requirements of the Americans with Disabilities Act of 1990 specifically; in particular, they felt that they were inadequately reimbursed for accommodations. Some physicians reported that because of these concerns, they attempted to discharge people with disabilities from their practices. Increasing health care access for people with disabilities will require increasing the accessibility of space and the availability of proper equipment, improving the education of clinicians about the care of people with disabilities, and removing structural barriers in the health care delivery system. Our findings also suggest that physicians' bias and general reluctance to care for people with disabilities play a role in perpetuating the health care disparities they experience. [ABSTRACT FROM AUTHOR]

PURPOSE We sought to characterize patient-oncologist communication and decision making about continuing or limiting systemic therapy in encounters after an initial consultation, with a particular focus on whether and how oncologists foster shared decision making (SDM). METHODS We performed content analysis of outpatient oncology encounters at two US National Cancer Institute-designated cancer centers audio recorded between November 2010 and September 2014. A multidisciplinary team used a hybrid approach of inductive and deductive coding and theme development. We used a combination of random and purposive sampling. We restricted quantitative frequency counts to the coded random sample but included all sampled encounters in qualitative thematic analysis. RESULTS Among 31 randomly sampled dyads with three encounters each, systemic therapy decision making was discussed in 90% (84 of 93) encounters. Thirty-four (37%) broached limiting therapy, which 27 (79%) framed as temporary, nine (26%) as completion of a standard regimen, and five (15%) as permanent discontinuation. Thematic analysis of these 93 encounters, plus five encounters purposively sampled for permanent discontinuation, found that (1) patients and oncologists framed continuing therapy as the default, (2) deficiencies in the SDM process (facilitating choice awareness, discussing options, and incorporating patient preferences) contributed to this default, and (3) oncologists use persuasion rather than deliberation when broaching discontinuation. CONCLUSION In this study of outpatient encounters between patients with advanced cancer and their oncologists, when discussing systemic therapy, there exists a default to continue systemic therapy, and deficiencies in SDM contribute to this default. [ABSTRACT FROM AUTHOR]