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1.
Ann Surg ; 279(5): 818-824, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38318711

RESUMO

OBJECTIVE: Understand the patient's decision-making process regarding colectomy for recurrent diverticulitis. BACKGROUND: The decision to pursue elective colectomy for recurrent diverticulitis is highly preference-sensitive. Little is known about the patient's perspective in this decision-making process. METHODS: We performed a qualitative study utilizing focus groups of patients with recurrent diverticulitis at 3 centers across the United States. Using an iterative inductive/deductive approach, we developed a conceptual framework to capture the major themes identified in the coded data. RESULTS: From March 2019 to July 2020, 39 patients were enrolled across 3 sites and participated in 6 focus groups. After coding the transcripts using a hierarchical coding system, a conceptual framework was developed. Major themes identified included participants' beliefs about surgery, such as normative beliefs (eg, subjective, value placed on surgery), control beliefs (eg, self-efficacy, stage of change), and anticipated outcomes (eg, expectations, anticipated regret); the role of behavioral management strategies (eg, fiber, eliminate bad habits); emotional experiences (eg, depression, embarrassment); current symptoms (eg, severity, timing); and quality of life (eg, cognitive load, psychosocial factors). Three sets of moderating factors influencing patient choice were identified: clinical history (eg, source of diagnosis, multiple surgeries), clinical protocols (eg, pre-op and post-op education), and provider-specific factors (eg, specialty, choice of surgeon). CONCLUSIONS: Patients view the decision to undergo colectomy through 3 major themes: their beliefs about surgery, their psychosocial context, and moderating factors that influence participant choice to undergo surgery. This knowledge is essential both for clinicians counseling patients who are considering colectomy and for researchers studying the process to optimize care for recurrent diverticulitis.


Assuntos
Doença Diverticular do Colo , Diverticulite , Humanos , Doença Diverticular do Colo/cirurgia , Qualidade de Vida , Estudos Retrospectivos , Diverticulite/cirurgia , Colectomia/métodos , Procedimentos Cirúrgicos Eletivos
2.
J Urol ; 211(1): 153-162, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37792669

RESUMO

PURPOSE: Despite the inferior outcomes, urethral stricture patients often undergo multiple endoscopic procedures prior to undergoing definitive urethroplasty. We sought to qualitatively evaluate the patient experience of obtaining urethroplasty to better understand the impact of this experience on quality of life. MATERIALS AND METHODS: Patients treated with urethroplasty between September 2019 and July 2021 were identified and invited to participate in our study if they had undergone ≥ 2 endoscopic procedures prior to urethroplasty. Semistructured telephone interviews were conducted, coded, and analyzed using an iterative inductive-deductive approach. RESULTS: Of the 105 urethroplasty patients during the study period, 50 (47.6%) had undergone ≥ 2 endoscopic procedures prior (IQR 3-5), of whom 20 participated in the study. Qualitative themes related to repeat endoscopic procedures included unmet treatment expectations, dissatisfaction with catheterization and repeat procedures, and negative impacts of recurrent stricture symptoms and treatments on quality of life. External factors associated with a delay to urethroplasty included financial constraints, surgeon access, and time off work. CONCLUSIONS: A trajectory of declining quality of life and unmet treatment expectations are the primary factors driving the decision to proceed with urethroplasty. However, external factors such as recovery costs and access to specialists play important roles in delaying surgery. These findings illustrate the need for improved community provider education and patient counseling to better inform expectations of both patients and providers with various treatment outcomes. Furthermore, these data highlight the need to improve access to specialized care for urethral stricture patients.


Assuntos
Estreitamento Uretral , Humanos , Masculino , Estreitamento Uretral/etiologia , Qualidade de Vida , Uretra/cirurgia , Resultado do Tratamento , Procedimentos Cirúrgicos Urológicos Masculinos/métodos , Avaliação de Resultados da Assistência ao Paciente , Estudos Retrospectivos
3.
BMC Health Serv Res ; 24(1): 640, 2024 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-38760660

RESUMO

BACKGROUND: Despite efforts to enhance the quality of medication prescribing in outpatient settings, potentially inappropriate prescribing remains common, particularly in unscheduled settings where patients can present with infectious and pain-related complaints. Two of the most commonly prescribed medication classes in outpatient settings with frequent rates of potentially inappropriate prescribing include antibiotics and nonsteroidal anti-inflammatory drugs (NSAIDs). In the setting of persistent inappropriate prescribing, we sought to understand a diverse set of perspectives on the determinants of inappropriate prescribing of antibiotics and NSAIDs in the Veterans Health Administration. METHODS: We conducted a qualitative study guided by the Consolidated Framework for Implementation Research and Theory of Planned Behavior. Semi-structured interviews were conducted with clinicians, stakeholders, and Veterans from March 1, 2021 through December 31, 2021 within the Veteran Affairs Health System in unscheduled outpatient settings at the Tennessee Valley Healthcare System. Stakeholders included clinical operations leadership and methodological experts. Audio-recorded interviews were transcribed and de-identified. Data coding and analysis were conducted by experienced qualitative methodologists adhering to the Consolidated Criteria for Reporting Qualitative Studies guidelines. Analysis was conducted using an iterative inductive/deductive process. RESULTS: We conducted semi-structured interviews with 66 participants: clinicians (N = 25), stakeholders (N = 24), and Veterans (N = 17). We identified six themes contributing to potentially inappropriate prescribing of antibiotics and NSAIDs: 1) Perceived versus actual Veterans expectations about prescribing; 2) the influence of a time-pressured clinical environment on prescribing stewardship; 3) Limited clinician knowledge, awareness, and willingness to use evidence-based care; 4) Prescriber uncertainties about the Veteran condition at the time of the clinical encounter; 5) Limited communication; and 6) Technology barriers of the electronic health record and patient portal. CONCLUSIONS: The diverse perspectives on prescribing underscore the need for interventions that recognize the detrimental impact of high workload on prescribing stewardship and the need to design interventions with the end-user in mind. This study revealed actionable themes that could be addressed to improve guideline concordant prescribing to enhance the quality of prescribing and to reduce patient harm.


Assuntos
Antibacterianos , Anti-Inflamatórios não Esteroides , Prescrição Inadequada , Padrões de Prática Médica , Pesquisa Qualitativa , United States Department of Veterans Affairs , Humanos , Anti-Inflamatórios não Esteroides/uso terapêutico , Estados Unidos , Antibacterianos/uso terapêutico , Prescrição Inadequada/estatística & dados numéricos , Prescrição Inadequada/prevenção & controle , Padrões de Prática Médica/estatística & dados numéricos , Masculino , Feminino , Entrevistas como Assunto , Pessoa de Meia-Idade , Pacientes Ambulatoriais , Tennessee
4.
Support Care Cancer ; 31(3): 172, 2023 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-36795229

RESUMO

PURPOSE: This manuscript aims to compare and contrast acceptability and perceived benefits of yoga-skills training (YST) and an empathic listening attention control (AC) in the Pro-You study, a randomized pilot trial of YST vs. AC for adults receiving chemotherapy infusions for gastrointestinal cancer. METHODS: Participants were invited for a one-on-one interview at week 14 follow-up, after completing all intervention procedures and quantitative assessments. Staff used a semi-structured guide to elicit participants' views on study processes, the intervention they received, and its effects. Qualitative data analysis followed an inductive/deductive approach, inductively identifying themes and deductively guided by social cognitive theory. RESULTS: Some barriers (e.g., competing demands, symptoms), facilitators (e.g., interventionist support, the convenience of clinic-based delivery), and benefits (e.g., decreased distress and rumination) were common across groups. YST participants uniquely described the importance of privacy, social support, and self-efficacy for increasing engagement in yoga. Benefits specific to YST included positive emotions and greater improvement in fatigue and other physical symptoms. Both groups described some self-regulatory processes, but through different mechanisms: self-monitoring in AC and the mind-body connection in YST. CONCLUSIONS: This qualitative analysis demonstrates that participant experiences in a yoga-based intervention or an AC condition reflect social cognitive and mind-body frameworks of self-regulation. Findings can be used to develop yoga interventions that maximize acceptability and effectiveness and to design future research that elucidates the mechanisms by which yoga is efficacious.


Assuntos
Meditação , Yoga , Adulto , Humanos , Yoga/psicologia , Autoeficácia , Pesquisa Qualitativa
5.
Child Welfare ; 101(2): 193-224, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38784918

RESUMO

State eligibility for certain federal child welfare funding requires a gubernatorial assurance that infants affected by substances receive plans of safe care (POSC). We conducted 18 interviews with state and county child welfare staff to understand how POSC has been implemented and found variability in practice driven by vague policy, challenges of cross-system collaboration, and a lack of knowledge about substance use disorder. Policy improvements should align requirements with POSC practice and create shared accountability with key partners.

6.
Liver Transpl ; 28(4): 678-688, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34743396

RESUMO

Patients undergoing evaluation for liver transplantation face heavy burdens of symptoms, health care use, and mortality. In other similarly ill populations, specialist palliative care has been shown to benefit patients, but specialist palliative care is infrequently used for liver transplantation patients. This project aims to describe the potential benefits of and barriers to specialist palliative care integration in the liver transplantation process. We performed qualitative analysis of transcripts from provider focus groups followed by a community engagement studio of patients and caregivers. Focus groups consisted of 14 palliative care specialists and 10 hepatologists from 11 institutions across the United States and Canada. The community engagement studio comprised patients and caregivers of patients either currently on the liver transplantation waiting list or recently after transplant. The focus groups identified 19 elements of specialist palliative care that could benefit this patient population, including exploring patients' illness understanding and expectations; assessing physical symptoms comprehensively; discussing patient values; and providing caregiver support, a safe space to discuss noncurative options, and anticipatory guidance about likely next steps. Identified barriers included role boundaries, differences in clinical cultures, limitations of time and staff, competing goals and priorities, misconceptions about palliative care, limited resources, changes in transplant status, and patient complexity. Community studio participants identified many of the same opportunities and barriers. This study found that hepatologists, palliative care specialists, patients, and caregivers identified areas of care for liver transplantation patients that specialist palliative care can improve and address.


Assuntos
Gastroenterologistas , Transplante de Fígado , Cuidadores , Humanos , Transplante de Fígado/efeitos adversos , Cuidados Paliativos , Pesquisa Qualitativa , Listas de Espera
7.
J Pediatr Hematol Oncol ; 44(1): 19-27, 2022 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-33560078

RESUMO

Despite priapism being one of the most frequent complications of sickle cell anemia (SCA) in male individuals, little has been reported about the impact of priapism in this population. The authors used a sequential independent mixed-methods design, which used both international multicenter focus group discussions (n=35) and a quantitative patient-reported outcome measure (n=131) to determine the impact of priapism on men with SCA in Nigeria and the United States. The authors analyzed data from focus groups using an iterative inductive-deductive approach. Comparison of the Priapism Impact Profile data was done using the Kruskal-Wallis H test. Our result showed that priapism, across cultures, is associated with shame and embarrassment. These emotions interfere with timely clinical and family communication about priapism symptoms and complications. Participants were dissatisfied with the quality of care at emergency facilities. The quality of life and physical wellness of men with SCA-related priapism were significantly different for the 3 groups: (1) priapism condition getting better, (2) priapism condition getting worse, and (3) priapism condition remain the same (P=0.002 and P=0.019, respectively). Psychological, sexual, and physical wellbeing are all adversely affected by priapism. Evidence-based methods are necessary for adequate medical, educational, and psychological treatment for recurrent priapism.


Assuntos
Anemia Falciforme , Priapismo , Qualidade de Vida , Adolescente , Adulto , Anemia Falciforme/classificação , Anemia Falciforme/psicologia , Anemia Falciforme/terapia , Humanos , Masculino , Nigéria , Priapismo/etiologia , Priapismo/psicologia , Priapismo/terapia
8.
Dig Dis Sci ; 67(9): 4387-4394, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35034240

RESUMO

BACKGROUND: Helicobacter pylori eradication is associated with reduced gastric cancer and peptic ulcer disease incidence and mortality. Factors influencing patients' experiences surrounding H. pylori diagnosis and management are not well-described. Current patient perceptions can influence adherence to treatment, and also their anxieties related to this potentially carcinogenic condition. The objective of this study was to understand the patient experience surrounding H. pylori management and to qualitatively construct a contextual framework to inform and guide providers who manage patients with H. pylori infection. METHODS: We conducted a qualitative analysis using a focus group and one-on-one telephone interviews. An iterative inductive/deductive approach was applied to recorded transcripts to identify and hierarchically order themes. Patient experience was defined according to major themes within a structured health behavior framework. RESULTS: Theme saturation was achieved with thirteen participants (mean age 50.4 years; 62% female; 38% non-Hispanic white). Qualitative analysis yielded a total of 987 codes that resulted in five major themes related to the patient H. pylori experience: context of decision-making; health beliefs; barriers experienced; cues to action; and impact of new knowledge. These themes aligned with the Health Behavior Model framework. Participants were motivated to treat H. pylori. However, the experience was more often perceived negatively versus positively. The perceived patient-provider interaction contributed most prominently to the negative experience compared to other patient experiences, including treatment-related side effects. Internal cues, including symptoms and fear of cancer, modified participants' perceptions and motivation to accept treatment. CONCLUSIONS: Patient experiences related to H. pylori management are predominantly negative. Increasing providers' awareness about patients' values, beliefs, anxieties, and expectations surrounding H. pylori diagnosis/treatment may improve provider-patient communication and, ideally, related outcomes.


Assuntos
Antiulcerosos , Infecções por Helicobacter , Helicobacter pylori , Neoplasias Gástricas , Antibacterianos/uso terapêutico , Antiulcerosos/uso terapêutico , Feminino , Infecções por Helicobacter/complicações , Infecções por Helicobacter/diagnóstico , Infecções por Helicobacter/tratamento farmacológico , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias Gástricas/complicações
9.
Gastroenterol Nurs ; 45(4): 244-253, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35758928

RESUMO

As many as 35% of patients may experience an inadequate-quality bowel preparation for colonoscopy, which may then require a repeated colonoscopy without insurance coverage. To our knowledge, there have been no qualitative studies with an in-depth exploration of patient experiences of this outcome. This study aimed to explore patients' perceptions of experiencing an inadequate preparation compared to those with only an adequate-quality bowel preparation history. Quantitative analyses were conducted for three one-item questions (e.g., anxiety rating) with ordinal scales. Qualitative data were collected from audio-recorded and transcribed telephone interviews ( N = 20) and anonymous online surveys ( N = 59). An inductive/deductive coding system was constructed, and themes were generated to form a conceptual framework. Brief quantitative results are provided. Themes of the colonoscopy process include context, prepreparation, implementation, outcomes, response, and decision to repeat. This novel study underscored the emotional experience of patients with inadequate preparation and subsequent influence on decisions to repeat the procedure. Recommendations are given for research, policy, and practice.


Assuntos
Catárticos , Colonoscopia , Colonoscopia/métodos , Humanos , Avaliação de Resultados da Assistência ao Paciente , Pesquisa Qualitativa , Inquéritos e Questionários
10.
BMC Womens Health ; 21(1): 210, 2021 05 19.
Artigo em Inglês | MEDLINE | ID: mdl-34011323

RESUMO

BACKGROUND: Siaya County in Western Kenya has one of the highest maternal mortality rates in Kenya. We sought to elucidate factors that influence mothers' decisions regarding where to seek obstetrical care, to inform interventions that seek to promote effective use of obstetric services and reduce maternal mortalities. To guide our research, we used the "Three Delays Model", focusing on the first delay-seeking care. While interventions to reduce maternal mortalities have focused on addressing delays in accessing and receiving care, context-specific data on drivers of the first delay are scarce. METHODS: We used a mixed-method study to assess how maternal decision-making of birth location is influenced by personal, contextual, and cultural factors. We conducted structured interviews with women aged 14 years or older living in Siaya, Bondo, and Yala, rural districts in Western Kenya. We then conducted focus group interviews with a subset of women to elucidate this question: How do drivers of the first delay (i.e., seeking care) affect the decision to seek home versus hospital delivery, potentially negatively influencing maternal mortality. RESULTS: Three hundred and seven women responded to the surveys, and 67 women (22%) from this group participated in focus group interviews. Although we focused on type 1 delays, we discovered that several factors that impact type 2 and type 3 delays directly contribute to type 1 delays. Our findings highlighted that factors influencing women's decisions to seek care are not simply medical or cultural but rather contextual, involving many elements of life, particularly in rural communities. CONCLUSIONS: It is imperative to address multiple-level factors that influence women's decisions to seek care and have in-hospital deliveries. To curtail maternal mortality in rural Western Kenya and comparable settings, targeted interventions must take into consideration these important influencers.


Assuntos
Serviços de Saúde Materna , Mães , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Quênia , Aceitação pelo Paciente de Cuidados de Saúde , Gravidez
11.
Int J Audiol ; 60(6): 458-468, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33106063

RESUMO

OBJECTIVE: Adults with hearing loss (AHL) often report feeling fatigued after being in situations that require prolonged listening, an experience referred to as listening-related fatigue. We conducted focus groups to identify key domains and constructs of listening-related fatigue. Our goal was to create a theoretical framework for understanding listening-related fatigue that could guide the development of a reliable and valid assessment tool. DESIGN: Eight focus group discussions were conducted using a moderator's guide. Discussions were recorded, transcribed, coded, and analysed to identify common themes related to listening-related fatigue. A hierarchical coding manual was developed iteratively as new themes and subcategories were identified during the analysis process. STUDY SAMPLE: Forty-three adults (11 males; aged 20 to 77 years) with varying degrees of hearing loss participated in the focus groups. Participants included primarily hearing aid users (n = 34), hearing aid candidates (n = 6), and a small group of cochlear implant users (n = 3). RESULTS: Qualitative analyses revealed the multidimensional nature of listening-related fatigue for AHL, including physical, mental, emotional, and social domains. These varied experiences were influenced by the external (acoustic/environmental) characteristics of the listening situation, the internal state of the listener (cognitive/motivational), and coping strategies implemented to modify the listening experience. The use of amplification had both positive and negative effects on listening-related fatigue. CONCLUSIONS: For some AHL, the consequences of listening-related fatigue can be significant, negatively impacting their quality of life. Data from these focus groups provides a framework for understanding the experience of listening-related fatigue among AHL. This is a critical first step in the development of a tool for measuring listening-related fatigue in this at-risk group.


Assuntos
Implantes Cocleares , Surdez , Auxiliares de Audição , Perda Auditiva , Percepção da Fala , Adulto , Fadiga/diagnóstico , Fadiga/etiologia , Perda Auditiva/diagnóstico , Humanos , Masculino , Qualidade de Vida
12.
BMC Public Health ; 20(1): 603, 2020 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-32357943

RESUMO

BACKGROUND: With the rapid advances in gene technologies in recent years, the potential benefits of precision medicine (PM) may spread unevenly to disadvantaged populations, such as Hispanics/Latinos. The objective of this study was to explore patient-level barriers and facilitators to dissemination and adoption of PM among Hispanics/Latinos, including knowledge and awareness. METHODS: Self-identified Hispanics/Latinos from diverse countries in Latin America (N = 41) participated in the study. Using a cross-sectional observational qualitative research design, six focus groups and a demographic questionnaire were collected in English and Spanish. Qualitative content analysis was utilized to code the transcripts and identify emerging themes. RESULTS: Hispanics/Latinos never heard of and had no knowledge about PM. Barriers to dissemination and adoption of PM included lack of health insurance, financial burden, participants' immigration status, distrust of government, limited English proficiency, low literacy levels, cultural norms, fear about genetic testing results, lack of transportation, newness of PM, and lack of information about PM. Facilitators included family support; information provided in Spanish; use of plain language and graphics; assistance programs for uninsured; trust in physicians, healthcare staff, well-known hospitals, academic institutions, and health care providers and community organization as sources of reliable information; personal motivation, and altruism or societal benefit. CONCLUSIONS: Culturally-and linguistically-tailored, low-literacy educational material about PM should be created in English and Spanish. Future research should examine provider-level and system-level barriers and facilitators to implementation and adoption of PM among Hispanic/Latino patients.


Assuntos
Barreiras de Comunicação , Conhecimentos, Atitudes e Prática em Saúde , Hispânico ou Latino/psicologia , Hispânico ou Latino/estatística & dados numéricos , Medicina de Precisão/psicologia , Medicina de Precisão/estatística & dados numéricos , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Grupos Focais , Humanos , América Latina , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
13.
BMC Emerg Med ; 20(1): 60, 2020 08 06.
Artigo em Inglês | MEDLINE | ID: mdl-32762657

RESUMO

BACKGROUND: Despite regionalization efforts, delays at transferring hospitals for patients transferred with ST-elevation myocardial infarction (STEMI) for primary percutaneous coronary intervention (PCI) persist. These delays primarily occur in the emergency department (ED), and are associated with increased mortality. We sought to use qualitative methods to understand staff and clinician perceptions underlying these delays. METHODS: We conducted semi-structured interviews at 3 EDs that routinely transfer STEMI patients to identify staff perceptions of delays and potential interventions. Interviews were recorded, transcribed, coded, and analyzed using an iterative inductive-deductive approach to build and refine a list of themes and subthemes, and identify supporting quotes. RESULTS: We interviewed 43 ED staff (staff, nurses, and physicians) and identified 3 major themes influencing inter-facility transfers of STEMI patients: 1) Processes, 2) Communication; and 3) Resources. Standardized processes (i.e., protocols) reduce uncertainty and can mobilize resources. Use of performance benchmarks can motivate staff but are frequently focused on internal, not inter-organizational performance. Direct use ofcommunication between ORGANIZATIONS can process uncertainty and expedite care. Record sharing and regular post-transfer communication could provide opportunities to discuss and learn from delays and increase professional satisfaction. Finally, characteristics of resources that enhanced their capacity, clarity, experience, and reliability were identified as contributing to timely transfers. CONCLUSIONS: Processes, communication, and resources were identified as modifying inter-facility transfer timeliness. Potential quality improvement strategies include ongoing updates of protocols within and between organizations to account for changes, enhanced post-transfer feedback between organizations, shared medical records, and designated roles for coordination.


Assuntos
Serviço Hospitalar de Emergência/organização & administração , Transferência de Pacientes/estatística & dados numéricos , Intervenção Coronária Percutânea , Infarto do Miocárdio com Supradesnível do Segmento ST/cirurgia , Tempo para o Tratamento , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa , Infarto do Miocárdio com Supradesnível do Segmento ST/mortalidade
14.
Epidemiology ; 30(4): 597-608, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31045611

RESUMO

BACKGROUND: The All of Us Research Program is building a national longitudinal cohort and collecting data from multiple information sources (e.g., biospecimens, electronic health records, and mobile/wearable technologies) to advance precision medicine. Participant-provided information, collected via surveys, will complement and augment these information sources. We report the process used to develop and refine the initial three surveys for this program. METHODS: The All of Us survey development process included: (1) prioritization of domains for scientific needs, (2) examination of existing validated instruments, (3) content creation, (4) evaluation and refinement via cognitive interviews and online testing, (5) content review by key stakeholders, and (6) launch in the All of Us electronic participant portal. All content was translated into Spanish. RESULTS: We conducted cognitive interviews in English and Spanish with 169 participants, and 573 individuals completed online testing. Feedback led to over 40 item content changes. Lessons learned included: (1) validated survey instruments performed well in diverse populations reflective of All of Us; (2) parallel evaluation of multiple languages can ensure optimal survey deployment; (3) recruitment challenges in diverse populations required multiple strategies; and (4) key stakeholders improved integration of surveys into larger Program context. CONCLUSIONS: This efficient, iterative process led to successful testing, refinement, and launch of three All of Us surveys. Reuse of All of Us surveys, available at http://researchallofus.org, may facilitate large consortia targeting diverse populations in English and Spanish to capture participant-provided information to supplement other data, such as genetic, physical measurements, or data from electronic health records.


Assuntos
Inquéritos Epidemiológicos/métodos , Medicina de Precisão , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise Fatorial , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Traduções , Estados Unidos , Adulto Jovem
15.
J Genet Couns ; 28(4): 812-821, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30969464

RESUMO

Benefits of identifying sickle cell disease (SCD) carriers include detection of at-risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18-65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive-deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.


Assuntos
Anemia Falciforme/genética , Triagem de Portadores Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Traço Falciforme/diagnóstico , Adolescente , Adulto , Negro ou Afro-Americano/genética , Idoso , Anemia Falciforme/diagnóstico , Tomada de Decisões , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Fenótipo , Adulto Jovem
16.
Matern Child Health J ; 23(9): 1260-1270, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31218606

RESUMO

INTRODUCTION: Pregnant women initiating antiretroviral therapy (ART) in sub-Saharan Africa have been shown to have sub-optimal engagement in care, particularly after delivery, and interventions to improve engagement in care for this unique population are urgently needed. METHODS: We enrolled 25 pregnant women living with HIV at each of two large antenatal clinics in Johannesburg and Cape Town, South Africa (n = 50), and conducted in-depth interviews. We assessed participants' reported acceptability of the following proposed interventions to improve engagement in care and retention monitoring data systems: financial incentives, educational toys, health education, combined maternal/infant visits, cell phone text reminders, mobility tracking, fingerprint/biometric devices, and smartcards. RESULTS: Acceptability overall for interventions was high, with mixed responses for some interventions. Overall themes identified included (i) the intersection of individual and facility responsibility for a patient's health, (ii) a call for more health education, (iii) issues of disclosure and concerns about privacy, and (iv) openness to interventions that could improve health systems. DISCUSSION: These findings provide insight into the preferences and concerns of potential users of interventions to improve engagement in HIV care for pregnant women, and support the development of tools that specifically target this high-risk group.


Assuntos
Infecções por HIV/terapia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Participação do Paciente/psicologia , Adulto , Antirretrovirais/uso terapêutico , Estudos de Avaliação como Assunto , Feminino , Infecções por HIV/psicologia , Humanos , Entrevistas como Assunto/métodos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Gravidez , África do Sul , População Urbana/estatística & dados numéricos
17.
Subst Abus ; 40(2): 170-177, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30759047

RESUMO

Background: Trust in health care has been shown to influence health care utilization, perceptions of fair treatment, and health outcomes in the general population. The literature on trust in health care in individuals with a history of substance use disorder (SUD) is more limited, primarily examining the patient-provider relationship. Women seeking substance abuse treatment in community-based programs have higher rates of prior trauma and health disparities compared with male counterparts and the general population. With higher rates of prior trauma, this population is theoretically at high risk of decreased interpersonal trust and altered interpersonal relationships. Objective: This study sought to identify factors influencing trust in the health care system for women seeking substance abuse treatment in a community-based residential treatment program. Methods: Six client focus groups (n = 30), 1 provider focus group (n = 7), and 2 individual clinical administrator interviews (n = 2) were conducted between November 2016 and August 2017. Focus groups and interviews were audio recorded and transcribed. Coding and coding reconciliation were conducted by 2 independent coders. Themes were extracted and analyzed from sorted and coded quotes. Results: Six themes emerged. Factors that influence trust in the health care system in this population include (1) prior experiences with diagnosis, treatment, and outcomes; (2) stigma of addiction; (3) payment and reimbursement structure; (4) patient rights and protections; (5) efficiency-driven care; and (6) the health care system's role in causing and/or enabling addiction. Conclusions: These themes demonstrate a general distrust of the health care system by women in this population. Distrust is influenced by a perception of a health care system providing care that is variable in quality, often stigmatizing, unaffordable, efficiency driven, and often influencing individuals' SUD. This aligns with and extends prior literature around trust of health care in individuals with SUD. Future directions in research include formally assessing the impact of trust on health outcomes such as treatment entry and retention.


Assuntos
Aceitação pelo Paciente de Cuidados de Saúde , Relações Profissional-Paciente , Estigma Social , Transtornos Relacionados ao Uso de Substâncias , Confiança , Mulheres , Adulto , Atitude do Pessoal de Saúde , Serviços Comunitários de Saúde Mental , Feminino , Grupos Focais , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade da Assistência à Saúde , Tratamento Domiciliar , Adulto Jovem
18.
J Stroke Cerebrovasc Dis ; 28(5): 1219-1228, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30745000

RESUMO

BACKGROUND AND OBJECTIVES: Acute Ischemic stroke (AIS) is a time-sensitive emergency and patients frequently present to, and are transferred from emergency departments (EDs). We sought to evaluate potential factors, particularly organizational, that may influence the timeliness of interfacility transfer for ED patients with AIS. METHODS: We conducted semistructured interviews at 3 EDs that routinely transfer AIS patients. A structured interview guide was developed and piloted prior to use. Staff were asked about perceived facilitators and barriers to timely and high quality emergency care for patients with AIS who require transfer. Each interview was audio recorded, transcribed, coded, and analyzed using an iterative inductive-deductive approach to build a list of themes and subthemes, and identify supporting quotes. RESULTS: We interviewed 45 ED staff (administrative staff, nurses, and physicians) involved in acute stroke care. We identified 4 major themes influencing the execution of interfacility transfers of AIS patients: (1) processes, (2) historical experiences; (3) communication; and (4) resources. Pre-existing protocols that standardized processes (eg, autoacceptance protocols) and reduced unnecessary communication, combined with direct communication with the neurology team at the comprehensive stroke center, and the flexibility and availability of human and physical resources (eg, staff and equipment) were commonly cited as facilitators. Lack of communication of clinical and operational outcomes back to transferring ED staff was viewed as a lost opportunity for process improvement, interorganization relationship building, and professional satisfaction. CONCLUSIONS: ED staff view the interfacility transfer of AIS patients as highly complex with multiple opportunities for delay. Coordination through the use of protocols and communication pre- and post-transfer represented opportunities to facilitate transfers. Staff and clinicians at transferring facilities identified multiple opportunities to enhance existing processes and ongoing communication quality among facilities involved in the acute management of patients with AIS.


Assuntos
Isquemia Encefálica/terapia , Prestação Integrada de Cuidados de Saúde/organização & administração , Serviço Hospitalar de Emergência/organização & administração , Transferência de Pacientes/organização & administração , Avaliação de Processos em Cuidados de Saúde/organização & administração , Acidente Vascular Cerebral/terapia , Tempo para o Tratamento/organização & administração , Isquemia Encefálica/diagnóstico , Isquemia Encefálica/fisiopatologia , Comportamento Cooperativo , Procedimentos Clínicos/organização & administração , Humanos , Comunicação Interdisciplinar , Entrevistas como Assunto , Equipe de Assistência ao Paciente/organização & administração , Pesquisa Qualitativa , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/fisiopatologia , Tennessee , Fatores de Tempo , Resultado do Tratamento , Fluxo de Trabalho
19.
AIDS Care ; 30(sup2): 5-10, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29848002

RESUMO

HIV and non-communicable diseases (NCD) are co-epidemics in South Africa. Comorbid individuals must engage in lifelong care. Postpartum HIV-positive women in South Africa are at high risk of dropping out of HIV care. We explored healthcare utilization among postpartum women requiring chronic management of HIV and NCD. From August - December 2016, we enrolled 25 women in Soweto, South Africa, and conducted one-time interviews. All participants were adult (≥18 years), HIV-positive, postpartum, and diagnosed with a NCD that required further evaluation after delivery. We developed a conceptual model that describes how maternal factors, interaction with environments, and social networks influence follow up engagement. Barriers to follow-up included separate visit days, increased time commitment, transportation and logistics, unfamiliar clinic environments, and disrespectful staff. Factors facilitating patient engagement included social support and partner disclosure. Women were more likely to turn to friends and family for advice regarding HIV or the NCD, rather than a clinic. Women prioritized infant care after delivery, suggesting that baby care may be an entry point for improving maternal care after delivery. Our results support advocating for better integration of services at the primary care level as a method to improve continuity of care for both women and children.


Assuntos
Continuidade da Assistência ao Paciente , Prestação Integrada de Cuidados de Saúde , Infecções por HIV/tratamento farmacológico , Acessibilidade aos Serviços de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Complicações Infecciosas na Gravidez/tratamento farmacológico , Retenção nos Cuidados , Serviços de Saúde da Mulher/organização & administração , Adulto , Fármacos Anti-HIV/uso terapêutico , Revelação , Feminino , Infecções por HIV/epidemiologia , Infecções por HIV/psicologia , Humanos , Entrevistas como Assunto , Doenças não Transmissíveis/epidemiologia , Doenças não Transmissíveis/psicologia , Período Pós-Parto , Gravidez , Pesquisa Qualitativa , Parceiros Sexuais , Apoio Social , África do Sul/epidemiologia
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