Search

Little is known about the experience of healthcare professionals (HCPs) in the community providing healthcare to people with aphasia. In this study we aimed to explore the experiences of community HCPs in healthcare conversations with people with aphasia, and whether a high-tech, purpose-built aphasia app could assist. A generic qualitative study was conducted. HCPs from seven different clinical backgrounds were interviewed and data was thematically analysed. The experiences of healthcare providers providing healthcare to people with aphasia were identified in six major themes. These were: (1) Healthcare communication topics; (2) HCP knowledge; (3) Communication exchanges during the interactions (4) Communication impacts on care; (5) Interactions and relationships grew easier over time; and (6) How technology could help interactions. HCPs with more aphasia knowledge reported having more positive experiences. Unsuccessful interactions were believed to lead to negative emotional responses in people with aphasia and HCPs, and that miscommunications could lead to compromised care. HCPs reported that interactions and relationships with people with aphasia grew easier over time. HCPs need system level support to acquire the knowledge and skills needed to engage people with aphasia in effective healthcare conversations. Technology has potential to improve interactions. The overall experience of Health care professionals (HCPs) providing healthcare to people with aphasia was reported to be challenging, taking extra emotional and intellectual effort and time. When communication was unsuccessful this often led to emotional distress for both the HCP and person with aphasia and compromised care for the person with aphasia. HCPs with more knowledge and skill, who had conversation partner training, were more likely to have successful communication interactions. More system-level supports such as conversation partner training, and technology support were perceived to be beneficial. [ABSTRACT FROM AUTHOR]

Depression is one of the costliest and most prevalent health conditions in the U.S. with 21 million adults having experienced at least one major depressive episode. Despite the availability of evidence-based treatments for depression, a large proportion of people with new diagnoses fail to initiate formal mental health treatment. Although individuals across all racial and ethnic groups fail to initiate treatment for depression, historically minoritized racial/ethnic groups are at even greater risk. Thirty-four participants representing historically underserved racial and ethnic populations from two large health care systems in the U.S. participated in qualitative interviews or focus group to identify factors that impede and facilitate depression treatment initiation in primary care settings. Participants identified individual and systemic barriers and facilitators of treatment initiation for depression and suggested several ideas for increasing treatment engagement (i.e., increased communication and education from providers, community events, information on social media). Novel interventions are needed to improve treatment initiation following initial diagnosis of depression in primary care settings. Findings from this study offer suggestions for improving treatment initiation in traditionally underserved communities. • Depression treatment initiation is inhibited by patient and systemic level barriers. • Historically minoritized groups recommend community-based efforts. • A strong patient-primary care provider alliance can facilitate treatment initiation. [ABSTRACT FROM AUTHOR]

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]

In routine healthcare consultations, patients often use prefaces containing the word "thing", including "the thing is", "there's this thing" or "one more thing". Although "thing" is an all-encompassing term that is used in myriad ways, in this article we show that thing-prefaces perform a specific job. This study uses Conversation Analysis to analyze 90 video-recorded primary care consultations with 14 primary care physicians in the United States. Patients' thing-prefaces mark the upcoming talk as a disclosure of sensitive information that may reflect negatively on the patient, physician or service (e.g., medication nonadherence, refill was not sent to pharmacy). Patients pursue explicit resolution of these problems (e.g., personalized recommendation, lab work, referral) despite these problems being downplayed and treated as delicate. Because patients may "talk around" these sensitive issues, thing-prefaces can be an important cue for physicians that patients are seeking resolution for a sensitive healthcare problem. [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]

African Americans are at significantly greater risk for hypertension, as well as worse hypertension-related morbidity and mortality than other racial/ethnic groups. Prior research aiming to address these health disparities has focused on improving individual patient self-management, with few studies testing family-centered interventions. We aimed to explore the perspectives of African Americans with hypertension and their family members on hypertension, self-management, and reciprocal family-hypertension impacts to inform future intervention design. We conducted four dyadic focus groups (90–120 minutes) of African American adults with hypertension (i.e. patients) and their family members. We recruited patients (n = 23) and their family members (n = 23) from four African American-serving Christian churches over a period of three months (69.6% female, M age = 60.73 years). Patient–family member dyads were interviewed conjointly (groups ranged from 4 to 6 dyads, each) by facilitators using open-ended questions to elicit perspectives regarding contributors to hypertension, self-management strategies, family influence on self-management, and the impact of hypertension on the family. A grounded theory approach was used for analysis. Participants' responses highlighted themes of societal risk factors and barriers (e.g. racism-related stress worsens blood pressure), influences of African American culture (e.g. culturally-informed diet practices), the patient–physician relationship (e.g. proactive communication is beneficial), family-level influences on health (e.g. family monitoring patients' health behaviors), and patient-level risk factors and self-management strategies (e.g. prayer to cope with stress). Themes reflected a hierarchical, nested, ecological structure such that themes within unique levels of participants' social systems affected, and were affected by, stress, change, or behavior in the other levels. African American adults with hypertension and their family members described multilevel influences on hypertension and disease self-management, with a strong emphasis on the value of family support. Developing culturally appropriate, family-centered interventions to improve hypertension self-management will be an important next step. [ABSTRACT FROM AUTHOR]

A theory-generating qualitative metasynthesis was used to explore the questions: (a) How do mothers of low socioeconomic status in the United States express their attitudes and beliefs on breastfeeding? (b) How do mothers of low socioeconomic status in the United States describe the types of support received related to breastfeeding? Databases were searched from January 2000 to June 2022. Eleven qualitative studies were evaluated, and six themes were identified. A model was developed illustrating how the themes impact a mother’s decision to breastfeed. Positive factors included shared narratives, knowledge of breastfeeding physiology, and social network. However, more negative influences were heard such as opinions passed on from family and friends, lack of teaching and anticipatory guidance, limited support and follow up, and the perception of conflicting messages from health care professionals. This model identifies constructs that can be used as starting points for interventions, policy development and/or health promotion education. [ABSTRACT FROM AUTHOR]

Against Medical Advice (AMA) discharges pose significant challenges to the healthcare system, straining patient-clinician relationships while contributing to avoidable morbidity and mortality. Furthermore, though these discharges culminate in patients' departure from hospitals, their effects reverberate long after, propagated by clinician notes stored in patients' medical records. These notes capture exceptionally fraught interactions between patients and providers, describing the circumstances surrounding breakdowns in clinical relationships. Additionally, they represent just one side of complex, contentious social interactions, for in describing AMA discharges, clinician notewriters quite literally have the last word. For these reasons, notes documenting AMA discharges provide insight into the ways in which clinicians conceptualize, characterize, and propagate power differentials in the contemporary healthcare system. Here, we present a qualitative thematic analysis of 185 notes documenting AMA discharges from a large urban US medical center, interpreting note dynamics through three sociological models of power analysis: (i) the distributive model of power promulgated by Max Weber, (ii) the collectivist power model characterized by Talcott Parsons and Hannah Arendt, and (iii) structural interpretations of power developed by Michel Foucault. We argue that in documenting AMA discharges, clinicians appear to conceive of their relationship with patients in almost exclusively distributive terms, which in turn contributes to an adversarial dynamic whereby both patients and clinicians ultimately suffer disempowerment. We furthermore argue that by facilitating clinicians' recognition of power's collectivist and structural dimensions, we may help transform breakdowns in patient-clinician relationships into opportunities for collaboration. • Against Medical Advice (AMA) discharges pose key challenges during hospitalizations. • Sociologists have posited alternative, collectivist and structural, models of power. • Notes documenting AMA discharges reveal clinicians' conceptualization of power. • Clinicians conceive of power almost exclusively in distributive terms. • Applying alternative power models to clinical practice may promote humanistic care. [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]

Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. Objectives: To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. Design:Post hoc secondary analysis of data from a qualitative cross-sectional study. Setting/Subjects: Semistructured interviews conducted between August 2019 and February 2020 with parents of children with SNI and interprofessional clinicians at a single tertiary children's hospital in the United States. Measurement: Data from codes pertaining to strategies to promote therapeutic alliance were extracted for inductive thematic analysis and to collate ideas for tools suggested by participants. The research team iteratively discussed each proposed tool, developed an example representative depiction, and expanded upon potential opportunities and limitations of the tools' practical implementation. Results: Twenty-five parents/legal guardians and 25 interprofessional clinicians participated. The median age of parents/legal guardians was 38 [interquartile range 35,48]. Sixty-eight percent (n = 17) identified as mothers and 68% (n = 17) identified as white. Clinicians were predominantly female (84%, n = 21) and represented 8 professions and 15 specialties. Themes and suggested tools included (1) continuity of previous decision-making conversations and the decision roadmap tool, (2) maintaining family communication preferences and the relational handoff tool, and (3) recognizing the abilities of each individual child and the developmental inventory tool. Conclusions: Family-centered care for parents of children with SNI may be bolstered by continuity in decision making, maintaining parents' communication preferences, and appreciating the child's individual abilities. Clinical tools may provide opportunities to promote these concepts. [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]

Objective: Despite growing consensus about the clinical value of preconception care (PCC), gaps and disparities remain in its delivery. This study aimed to examine the factors influencing behavior of health care providers around PCC in outpatient clinical settings in the United States. Methods: Twenty health care providers who serve people of reproductive age were interviewed using semi-structured interviews. Data was coded based on a modified Theoretical Domains Framework and analyzed using deductive content analysis. Results: We interviewed eight family medicine physicians, four obstetricians/gynecologists, seven nurse practitioners, and one nurse midwife. Overall, we found a wide variety in practices and attitudes towards PCC. Barriers and challenges to delivering PCC were shared across sites. We identified six themes that influenced provider behavior around PCC: (1) lack of knowledge of PCC guidelines, (2) perception of lack of preconception patient contact, (3) pessimism around patient "compliance," (4) opinion about scope of practice, (5) clinical site structure, and (6) reliance on the patient/provider relationship. Conclusions for Practice: Overall, our findings call for improved provider understanding of PCC and creative incorporation into current health care culture and practice. Given that PCC-specific visits are perceived by some as outside the norm of clinical offerings, providers may need to incorporate PCC into other encounters, as many in this study reported doing. We amplify the call for providers to understand how structural inequities may influence patient behavior and the value of standardized screening, within and beyond PCC, as well as examination of implicit and explicit provider bias. [ABSTRACT FROM AUTHOR]

Background: The Serious Illness Care Program has been shown to improve quality and feasibility of value-based end-of-life conversations in primary care. Objectives: To elicit patients' perspectives on serious illness conversations conducted by primary care clinicians. Subjects and Methods: Telephone interviews were conducted with patients at an academic center in the United States, who had a recent serious illness conversation with their primary care clinician. Interviews were audio-recorded and qualitatively analyzed using thematic analysis. Results: A total of eleven patients were enrolled. We identified three major themes: (1) positive emotional experiences are facilitated by established patient-clinician relationships and/or clinicians' skills in navigating emotional challenges, (2) patients appreciate a personalized conversation, and (3) clinicians should orchestrate the experience of the conversation, from preparation through follow-up. Conclusion: Patients appreciate having serious illness conversations in the primary care setting. Future efforts can be focused on improving clinicians' skills in navigating emotional challenges during conversations and implementing system changes to optimize orchestration. [ABSTRACT FROM AUTHOR]

Despite changes in specific features of the US health‐care system and policy environment in the past 50 years, professional dominance of medicine remains consistent. Extant social science research has considered how the cultural authority of medicine manifests and persists, sometimes emphasizing institutional structural influences and other times focusing on how individuals' agentic behaviour shapes their decisions and strategies regarding the consumption of health‐care. We build on and extend these literatures using qualitative in‐depth interview data to explore a typology of ways palliative care patients and their caregivers experience medical treatment imperatives across a range of social contexts. Rather than viewing or validating these lived experiences through a medical lens, we foreground the accounts of patients and caregivers as they describe their experiences of where, when, and how they perceive pressure to engage in medical treatment in late life. We adopt a Foucauldian lens to examine how this biopower is both an internal and external experience in our modern biomedicalized society. Our work reveals how treatment imperatives are generated within clinical medical encounters, but also coproduced through multiple and overlapping forces that compel individuals to pursue medical solutions to bodily problems. [ABSTRACT FROM AUTHOR]

Background and Objective: Comprehensive headache care involves numerous specialties and components that have not been well documented or standardized. This study aimed to elicit best practices and characterize important elements of care to be provided in multidisciplinary headache centers. Methods: Qualitative, semi‐structured telephone interviews with a purposive sample of headache neurology specialists from across the US, using open‐ended questions. Interviews were recorded, transcribed, and coded. Coded data were further analyzed using immersion/crystallization techniques for final interpretation. Results: Mean years providing headache care was 17.7 (SD = 10.6). Twelve of the 13 participants held United Council for Neurologic Subspecialties headache certification. Six described their practice site as providing multidisciplinary headache care. Participants explained most of their patients had seen multiple doctors over many years, and had tried numerous unsuccessful treatments. They noted patients with chronic headache frequently present with comorbidities and become stigmatized. All participants asserted successful care depends on taking time to talk with and listen to patients, gain understanding, and earn trust. All participants believed multidisciplinary care is essential within a comprehensive headache center, along with staffing enough headache specialists, implementing detailed headache intake and follow‐up protocols, and providing the newest medications, neuromodulation devices, botulinum toxin injections, monoclonal antibodies, nerve blocks and infusions, and treatment from a health psychologist. Other essential services for a headache center are other behavioral health practitioners providing cognitive behavioral therapy, mindfulness, biofeedback and pain management; and autonomic neurology, neuropsychology, vestibular audiology, sleep medicine, physical therapy, occupational therapy, exercise physiology, speech therapy, nutrition, complementary integrative health modalities, and highly trained support staff. Conclusion: While headache neurology specialists form the backbone of headache care, experts interviewed for this study maintained their specialty is just one of many types of care needed to adequately treat patients with chronic headache, and this is best provided in a comprehensive, multidisciplinary center. [ABSTRACT FROM AUTHOR]

Background: Lesbian, gay, and bisexual (LGB) older women have unmet communication needs around palliative and end-of-life care. Past research has found communication differences for LGB women patients. Consequently, older LGB women may experience healthcare communication barriers around advance care planning. Aim: To explore experiences of bereaved LGB older women to understand perspectives regarding advance care planning communication between clinicians, patients, and dyads. Design: Guided by queer gerontology as a theoretical framework, this qualitative descriptive study employed individual interviews with purposively recruited participants. Interviews were conducted in person using a semi structured protocol and analyzed using inductive thematic analysis. Setting/participants: Sixteen LGB women, age 60 years or older from across the United States who had lost a spouse/partner within the past 5 years. Results: Four main themes emerged from the transcripts, LGB older women: (1) experience unclear advance care planning communication and end-of-life care support from clinicians, (2) often avoid advance care planning discussions with spouse or partners, (3) lack of knowledge about palliative or end-of-life care, and (4) have more positive experiences when there is consistent communication with spouse or partner and clinicians during a spouse/partner's illness and end-of-life. Discussion: While certain experiences and opinions may reflect those of non-LGB older adults, novel advance care planning barriers exist for LGB older women. Greater understanding among clinicians is needed regarding advance care planning conversations with LGB dyads. We recommend four improvements in training, recognition, acceptance, and dyad-based communication interventions. [ABSTRACT FROM AUTHOR]

Background: The average time to a diagnosis for people with axial spondyloarthritis (axSpA) is 7-10 years. Delayed diagnosis may result in increased structural damage, worse physical function, and worse quality of life relative to patients with a timely axSpA diagnosis. Understanding patient experiences may provide insights for how to reduce diagnostic delays. Objective: To provide foundational knowledge about patient experiences with healthcare providers leading to an axSpA diagnosis. Methods: We conducted an exploratory qualitative research study with six focus groups interviews with participants recruited from three rheumatology clinics within the United States (MA (n = 3); CO (n = 2); PA (n = 1)) that included a total of 26 adults (10 females, 16 males) with rheumatologist confirmed diagnosis of axSpA in 2019. Focus groups were ~ 2 h, audio recorded, transcribed, and subject to dual coding. The codes reviewed were in relation to the patients' diagnostic experiences. Results: Patients described frustrating and lengthy diagnostic journeys. They recognized that the causes of diagnostic delays in axSpA are multifactorial (e.g., no definitive diagnostic test, disease characteristics, lack of primary care provider's awareness about axSpA, trust). Patients described how doctors minimized or dismissed complaints about symptoms or told them that their issues were psychosomatic. Patients believed the healthcare system contributed to diagnostic delays (e.g., lack of time in clinical visits, difficulty accessing rheumatologists, health insurance challenges). Advice to physicians to reduce the diagnostic delay included allowing time for patients to give a complete picture of their illness experience, listening to, and believing patients, earlier referral to rheumatology, provision of HLA-B27 gene testing, and that physicians need to partner with their patients. Conclusions: Patients desire a definitive test that could be administered earlier in the course of axSpA. Until such a test is available, patients want clinicians who listen to, believe, and partner with them, and who will follow them until a diagnosis is reached. Educating primary care clinicians about guidelines and referral for diagnosis of axSpA could reduce diagnostic delay. [ABSTRACT FROM AUTHOR]

This qualitative study examines women's experiences with risk information exchange during their pregnancy. Semi-structured interviews were conducted with 15 women (aged 25–38) from September 2018 to February 2019. A non-random purposive sample of women who had given birth in the past year was invited to participate in the study. Women were invited by reaching out to personal contacts as well as through sending out a bulk institutional email, posting on mothers' Facebook groups' pages, and by giving out flyers to OB/mid-wife offices. The women represent an educated sample, and nearly half of the participants reported experiencing complications. Thematic analysis was conducted, with researchers individually engaging in open coding, and then collectively engaging in selective coding across multiple analysis sessions. Thematic analysis showed that all the women had different information preferences. Women who had a prior history of pregnancy risk reported engaging in active information seeking. All of the women in this study felt that information was withheld from them, with the exception of information about C-sections, birth plans, and genetic testing. Some women also reported that information was withheld from them when complications occurred during the pregnancy. Lastly, the data illustrate a need for verifying underlying emotions during information exchange as noted by all women. Women in this study reported varying preferences for information exchange. The women reported unmet information needs. The women highlight the need for providers to attend to emotions during information exchange. [ABSTRACT FROM AUTHOR]

Medications with a higher risk of harm or that are unlikely to be beneficial are used by nearly all older patients in home health care (HHC). The objective of this study was to understand stakeholders' perspectives on challenges in deprescribing these medications for post-acute HHC patients. Qualitative individual interviews were conducted with stakeholders involved with post-acute deprescribing. Older HHC patients, HHC nurses, pharmacists, and primary/acute care/post-acute prescribers from 9 US states participated in individual qualitative interviews. Interview questions were focused on the experience, processes, roles, training, workflow, and challenges of deprescribing in hospital-to-home transitions. We used the constant comparison approach to identify and compare findings among patient, prescriber, and pharmacist and HHC nurse stakeholders. We interviewed 9 older patients, 11 HHC nurses, 5 primary care physicians (PCP), 3 pharmacists, 1 hospitalist, and 1 post-acute nurse practitioner. Four challenges were described in post-acute deprescribing for HHC patients. First, PCPs' time constraints, the timing of patient encounters after hospital discharge, and the lack of prioritization of deprescribing make it difficult for PCPs to initiate post-acute deprescribing. Second, patients are often confused about their medications, despite the care team's efforts in educating the patients. Third, communication is challenging between HHC nurses, PCPs, specialists, and hospitalists. Fourth, the roles of HHC nurses and pharmacists are limited in care team collaboration and discussion about post-acute deprescribing. Post-acute deprescribing relies on multiple parties in the care team yet it has challenges. Interventions to align the timing of deprescribing and that of post-acute care visits, prioritize deprescribing and allow clinicians more time to complete related tasks, improve medication education for patients, and ensure effective communication in the care team with synchronized electronic health record systems are needed to advance deprescribing during the transition from hospital to home. [ABSTRACT FROM AUTHOR]