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1.
Plast Reconstr Surg ; 2024 Feb 12.
Artículo en Inglés | MEDLINE | ID: mdl-38346159

RESUMEN

BACKGROUND: Cervical spinal cord injury (SCI) is a devastating injury. Restoring upper extremity function is a top priority, which can be accomplished by tendon transfer (TT) and nerve transfer (NT) surgeries. The purpose of this prospective comparative study was to assess long-term changes in UE function between surgical (TT or NT) and non-surgical groups through a comprehensive mixed methods approach. METHODS: This multicenter, cohort study compared data among three groups: those undergoing 1) no surgery 2) TT surgery, or 3) NT surgery. Quantitative data, the Spinal Cord Independence Measure (SCIM) and Short Form Health Survey (SF-36), was collected at baseline and long-term follow-up (6-24 months). Qualitative semi-structured interview data was also obtained from these participants and their identified caregivers at baseline, early follow-up (1 month), and long-term follow-up (6-24 months). RESULTS: Thirty-one participants had quantitative data across all timepoints: no surgery (n=14), TT (n=7), and NT (n=10). SCIM scores improved in TT and NT groups compared to the no surgery group (p<0.05). SF-36 scores did not differ among groups. Qualitative data analysis (n=168 interviews) corroborated SCIM findings: surgical participants and their caregivers reported improvement in transfers and ability to perform activities of daily living, including grooming and self-catheterization. Improved use of electronics and ability to operate a motor vehicle were also reported. Post-operative therapy was identified as a critical component of achieving gains. CONCLUSION: Both TT and NT surgery leads to quantitative and qualitative functional gains as compared to the no surgery group. This comparative information should be used to help surgeons discuss treatment options.

2.
Soc Sci Med ; 342: 116528, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38215642

RESUMEN

BACKGROUND: Informal caregivers (e.g., partners, other family members, friends) often provide social support to Black women with breast cancer, and caregivers find both benefits and challenges in their caregiving role. METHODS: In this qualitative study, twenty-four caregivers for Black women with breast cancer participated in focus groups and interviews. Participants responded to a brief close-ended questionnaire as well as semi-structured questions about their experiences as cancer caregivers. Demographic information was collected, and relationship satisfaction was measured by the Relationship Assessment Scale-General scale (RAS-G). Focus groups and interviews were recorded, transcribed verbatim, and coded by two independent coders. Using an iterative, discussion-based process, the study team developed and refined themes. RESULTS: All caregivers described themselves as Black/African American, and the majority identified as female (79%). The mean RAS-G score was 4.5 (SD = 0.5), indicating high levels of relationship satisfaction. Qualitative themes included using a range of strategies to provide emotional support; shifting between roles; needing time and space; and trying to stay strong. Several female caregivers described how the cumulative experiences of providing care for multiple family members and friends could be draining, as could their own experiences in the patient role. CONCLUSIONS: These findings show a complex, multilayered social context that affects both the patient-caregiver relationship and the health and wellbeing of caregivers. Clinicians providing treatment and support for Black women with breast cancer should be mindful of how the health context of the family may affect patient and caregiver outcomes.


Asunto(s)
Neoplasias de la Mama , Cuidadores , Humanos , Femenino , Cuidadores/psicología , Familia/psicología , Apoyo Social , Negro o Afroamericano , Investigación Cualitativa
3.
Int Urogynecol J ; 35(1): 139-148, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37991567

RESUMEN

INTRODUCTION AND HYPOTHESIS: Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters. METHODS: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters. RESULTS: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine. CONCLUSIONS: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.


Asunto(s)
Dolor Crónico , Cistitis Intersticial , Humanos , Femenino , Cistitis Intersticial/tratamiento farmacológico , Ansiedad , Grupos Focales , Investigación Cualitativa
4.
Top Spinal Cord Inj Rehabil ; 29(3): 58-70, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38076291

RESUMEN

Background: Nerve transfer (NT) and tendon transfer (TT) surgeries can enhance upper extremity (UE) function and independence in individuals with cervical spinal cord injury (SCI). Caregivers are needed to make this surgery possible, yet caregivers experience their own set of challenges. Objectives: This comparative study explored the perioperative and nonoperative experiences of caregivers of individuals with cervical SCI, focusing on daily life activities, burden, and mental health. Methods: Caregivers of individuals with cervical SCI were recruited and grouped by treatment plan for the person with SCI: (1) no surgery (NS), (2) TT surgery, and (3) NT surgery. Semistructured interviews were conducted at baseline/preoperative, early follow-up/postoperative, and late follow-up/postoperative. Caregivers were asked about their daily life, mental health, and challenges related to caregiving. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Quantitative, single-item standardized burden score (0-100) data were collected at each timepoint. Results: Participants included 23 caregivers (18 family members, 4 friends, 1 hired professional). The surgeries often brought hope and motivation for caregivers. Caregivers reported increased burden immediately following surgery (less for the NT compared to TT subgroup) yet no long-term changes in the amount and type of care they provided. NS caregivers discussed social isolation, relationship dysfunction, and everyday challenges. Conclusion: Health care providers should consider the changing needs of SCI caregivers during perioperative rehabilitation. As part of the shared surgical decision-making approach, providers should educate caregivers about the postoperative process and the extent and potential variability of short- and long-term care needs.


Asunto(s)
Traumatismos de la Médula Espinal , Cirugía Plástica , Humanos , Traumatismos de la Médula Espinal/psicología , Estudios Prospectivos , Atención Perioperativa , Extremidad Superior/cirugía
5.
BMC Health Serv Res ; 23(1): 1245, 2023 Nov 13.
Artículo en Inglés | MEDLINE | ID: mdl-37953236

RESUMEN

BACKGROUND: This study aimed to capture the implementation process of the ALIGN Study, (An individualized Pain Plan with Patient and Provider Access for Emergency Department care of Sickle Cell Disease). ALIGN aimed to embed Individualized Pain Plans in the electronic health record (E-IPP) and provide access to the plan for both adult patients with sickle cell disease (SCD) and emergency department providers when a person with SCD comes to the emergency department in vaso-occlusive crises. METHODS: Semi-structured interviews were conducted with research teams from the 8 participating sites from the ALIGN study. Seventeen participants (principal investigators and study coordinators) shared their perspectives about the implementation of ALIGN in their sites. Data were analyzed in three phases using open coding steps adapted from grounded theory and qualitative content analysis. RESULTS: A total of seven overarching themes were identified: (1) the E-IPP structure (location and upkeep) and collaboration with the informatics team, (2) the role of ED champion, (3) the role of research coordinators, (4) research team communication, and communication between research team and clinical team, (5) challenges with the study protocol, (6) provider feedback: addressing over-utilizers, patient mistrust, and the positive feedback about the intervention, and (7) COVID-19 and its effects on study implementation. CONCLUSIONS: Findings from this study contribute to learning how to implement E-IPPs for adult patients with SCD in ED. The study findings highlight the importance of early engagement with different team members, a champion from the emergency department, study coordinators with different skills and enhancement of communication and trust among team members. Further recommendations are outlined for hospitals aiming to implement E-IPP for patients with SCD in ED.


Asunto(s)
Anemia de Células Falciformes , Manejo del Dolor , Humanos , Adulto , Manejo del Dolor/métodos , Registros Electrónicos de Salud , Dolor/tratamiento farmacológico , Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/terapia , Servicio de Urgencia en Hospital
6.
J Womens Health (Larchmt) ; 32(10): 1120-1135, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37610853

RESUMEN

Objective: The purpose of this analysis was to explore adolescent and adult women's preferences for the content and delivery of public health messaging around bladder health. Materials and Methods: This was a directed content analysis of focus group data from the Study of Habits, Attitudes, Realities, and Experiences, which explored adolescent and adult women's experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. This article reports an analysis of the "Public Health Messaging" code, which includes participants' views on what information is needed about bladder health, attributes of messaging, and preferred locations and delivery methods. Results: Forty-four focus groups were conducted with 360 participants (ages 11-93 years) organized into six age groups. Across age groups, participants wanted messaging on maintaining bladder health and preventing bladder problems. They offered suggestions for a wide variety of methods to deliver bladder health information. Ideas for delivery methods fell into three broad categories: (1) traditional in-person modes of delivery, which included individual communication with providers in clinical settings and group-based methods in schools and other community settings where adolescent and adult women naturally gather; (2) internet-based website and social media delivery methods; and (3) static (noninteractive) modes of delivery such as pamphlets. Participants recommended the development of multiple delivery methods to be tailored for specific audiences. Conclusions: These findings can inform development of broad ranging public health messaging tailored to audiences of all ages with a goal of engaging adolescent and adult women across the bladder health risk spectrum.


Asunto(s)
Salud Pública , Vejiga Urinaria , Adulto , Femenino , Humanos , Adolescente , Grupos Focales , Comunicación , Instituciones Académicas , Investigación Cualitativa
7.
Stat Methods Med Res ; 32(7): 1420-1441, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37284817

RESUMEN

Cluster randomized trial design may raise financial concerns because the cost to recruit an additional cluster is much higher than to enroll an additional subject in subject-level randomized trials. Therefore, it is desirable to develop an optimal design. For local optimal designs, optimization means the minimum variance of the estimated treatment effect under the total budget. The local optimal design derived from the variance needs the input of an association parameter ρ in terms of a "working" correlation structure R(ρ) in the generalized estimating equation models. When the range of ρ instead of an exact value is available, the parameter space is defined as the range of ρ and the design space is defined as enrollment feasibility, for example, the number of clusters or cluster size. For any value ρ within the range, the optimal design and relative efficiency for each design in the design space is obtained. Then, for each design in the design space, the minimum relative efficiency within the parameter space is calculated. MaxiMin design is the optimal design that maximizes the minimum relative efficiency among all designs in the design space. Our contributions are threefold. First, for three common measures (risk difference, risk ratio, and odds ratio), we summarize all available local optimal designs and MaxiMin designs utilizing generalized estimating equation models when the group allocation proportion is predetermined for two-level and three-level parallel cluster randomized trials. We then propose the local optimal designs and MaxiMin designs using the same models when the group allocation proportion is undecided. Second, for partially nested designs, we develop the optimal designs for three common measures under the setting of equal number of subjects per cluster and exchangeable working correlation structure in the intervention group. Third, we create three new Statistical Analysis System (SAS) macros and update two existing SAS macros for all the optimal designs. We provide two examples to illustrate our methods.


Asunto(s)
Proyectos de Investigación , Humanos , Análisis por Conglomerados , Oportunidad Relativa , Ensayos Clínicos Controlados Aleatorios como Asunto , Tamaño de la Muestra
8.
J Allergy Clin Immunol Pract ; 11(9): 2767-2777, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37245736

RESUMEN

BACKGROUND: The Global Initiative for Asthma and National Asthma Education and Prevention Program recently made paradigm-shifting recommendations regarding inhaler management in asthma. The Global Initiative for Asthma now recommends that combination inhaled corticosteroid (ICS)-formoterol inhalers replace short-acting ß-agonists as the preferred reliever therapy at all steps of asthma management. Although the most recent guidelines of the National Asthma Education and Prevention Program did not review reliever ICS-formoterol usage in mild asthma, they similarly recommended single maintenance and reliever therapy (SMART) at steps 3 and 4 of asthma management. Despite these recommendations, many clinicians-particularly in the United States-are not prescribing new inhaler paradigms. Clinician-level reasons for this implementation gap remain largely unexplored. OBJECTIVE: To gain an in-depth understanding of the facilitators and barriers to prescribing reliever ICS-formoterol inhalers and SMART in the United States. METHODS: Community and academic primary care providers, pulmonologists, and allergists who reported regularly caring for adults with asthma were interviewed. Interviews were recorded, transcribed, qualitatively coded, and analyzed using the Consolidated Framework for Implementation Research. Interviews were continued until theme saturation. RESULTS: Among 20 interviewed clinicians, only 6 clinicians described regularly prescribing ICS-formoterol inhalers as a reliever inhaler (either alone or within SMART). Significant barriers to new inhaler approaches included concerns surrounding a lack of Food and Drug Administration labeling for ICS-formoterol as a reliever therapy, a lack of awareness regarding a patient's formulary-preferred ICS-long-acting ß-agonist choices, the high cost of combination inhalers, and time constraints. Facilitators to using new inhaler approaches included clinicians' beliefs that the latest inhaler recommendations are simpler and more congruent with real-world patients' behavior, and that a potential change in management strategy would offer a valuable opportunity for shared decision making. CONCLUSIONS: Although new guidelines exist in asthma, many clinicians described significant barriers to using them including medicolegal issues, pharmaceutical formulary confusion, and high drug costs. Nonetheless, most clinicians believed that the latest inhaler approaches would be more intuitive for their patients and would offer an opportunity for patient-centered collaboration and care. Stakeholders may find these results useful in future attempts to increase the real-world adoption of recent asthma recommendations.


Asunto(s)
Antiasmáticos , Asma , Adulto , Humanos , Estados Unidos/epidemiología , Budesonida/uso terapéutico , Antiasmáticos/uso terapéutico , Etanolaminas/uso terapéutico , Administración por Inhalación , Asma/tratamiento farmacológico , Combinación Budesonida y Fumarato de Formoterol/uso terapéutico , Fumarato de Formoterol/uso terapéutico , Nebulizadores y Vaporizadores , Corticoesteroides/uso terapéutico , Combinación de Medicamentos
9.
Front Oncol ; 13: 1061641, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36761969

RESUMEN

Background: While technology advances have increased the popularity of remote interventions in underserved and rural cancer communities, less is understood about technology access and preferences for home-based physical activity programs in this cancer survivor population. Purpose: To determine access, preferences, and needs, for a home-based physical activity program in rural cancer survivors. Methods: A Qualtrics Research Panel was recruited to survey adults with cancer across the United States. Participants self-reported demographics, cancer characteristics, technology access and usage, and preferences for a home-based physical activity program. The Godin Leisure Time Exercise Questionnaire (GLTEQ) assessed current levels of physical activity. Descriptive statistics included means and standard deviations for continuous variables, and frequencies for categorical variables. Independent samples t-tests explored differences between rural and non-rural participants. Results: Participants (N=298; mean age=55.2 ± 16.5) had a history of cancer (mean age at diagnosis=46.5), with the most commonly reported cancer type being breast (25.5%), followed by prostate (16.1%). 74.2% resided in rural hometowns. 95% of participants reported accessing the internet daily. On a scale of 0-100, computer/laptop (M=63.4) and mobile phone (M=54.6) were the most preferred delivery modes for a home-based physical activity intervention, and most participants preferred balance/flexibility (72.2%) and aerobic (53.9%) exercises. Desired intervention elements included a frequency of 2-3 times a week (53.5%) for at least 20 minutes (75.7%). While there were notable rural disparities present (e.g., older age at diagnosis, lower levels of education; ps<.001), no differences emerged for technology access or environmental barriers (ps>.08). However, bias due to electronic delivery of the survey should not be discounted. Conclusion: These findings provide insights into the preferred physical activity intervention (e.g., computer delivery, balance/flexibility exercises) in rural cancer survivors, while highlighting the need for personalization. Future efforts should consider these preferences when designing and delivering home-based interventions in this population.

10.
BMC Health Serv Res ; 23(1): 174, 2023 Feb 21.
Artículo en Inglés | MEDLINE | ID: mdl-36810066

RESUMEN

BACKGROUND: In 2019-2020, with National Cancer Institute funding, seven implementation laboratory (I-Lab) partnerships between scientists and stakeholders in 'real-world' settings working to implement evidence-based interventions were developed within the Implementation Science Centers in Cancer Control (ISC3) consortium. This paper describes and compares approaches to the initial development of seven I-Labs in order to gain an understanding of the development of research partnerships representing various implementation science designs. METHODS: In April-June 2021, members of the ISC3 Implementation Laboratories workgroup interviewed research teams involved in I-Lab development in each center. This cross-sectional study used semi-structured interviews and case-study-based methods to collect and analyze data about I-Lab designs and activities. Interview notes were analyzed to identify a set of comparable domains across sites. These domains served as the framework for seven case descriptions summarizing design decisions and partnership elements across sites. RESULTS: Domains identified from interviews as comparable across sites included engagement of community and clinical I-Lab members in research activities, data sources, engagement methods, dissemination strategies, and health equity. The I-Labs use a variety of research partnership designs to support engagement including participatory research, community-engaged research, and learning health systems of embedded research. Regarding data, I-Labs in which members use common electronic health records (EHRs) leverage these both as a data source and a digital implementation strategy. I-Labs without a shared EHR among partners also leverage other sources for research or surveillance, most commonly qualitative data, surveys, and public health data systems. All seven I-Labs use advisory boards or partnership meetings to engage with members; six use stakeholder interviews and regular communications. Most (70%) tools or methods used to engage I-Lab members such as advisory groups, coalitions, or regular communications, were pre-existing. Think tanks, which two I-Labs developed, represented novel engagement approaches. To disseminate research results, all centers developed web-based products, and most (n = 6) use publications, learning collaboratives, and community forums. Important variations emerged in approaches to health equity, ranging from partnering with members serving historically marginalized populations to the development of novel methods. CONCLUSIONS: The development of the ISC3 implementation laboratories, which represented a variety of research partnership designs, offers the opportunity to advance understanding of how researchers developed and built partnerships to effectively engage stakeholders throughout the cancer control research lifecycle. In future years, we will be able to share lessons learned for the development and sustainment of implementation laboratories.


Asunto(s)
Laboratorios , Neoplasias , Humanos , Estudios Transversales , Atención a la Salud , Comunicación
11.
J Prim Care Community Health ; 14: 21501319221147126, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36594346

RESUMEN

Rural residents in underserved areas face many barriers to health services, including colonoscopies for colorectal cancer (CRC) screening, but rural healthcare providers may assist patients navigating these challenges due to familiarity with local contexts. In 2017 to 2018, we interviewed clinical practitioners and staff (n = 40) at 13 primary care and gastroenterology locations across rural Southern Illinois. We used a semi-structured interview guide that addressed system, provider, and patient levels including domains related to barriers, facilitators, and needs for intervention. This article focuses on 3 main elements related to distance and transportation that emerged from inductive coding. First, providers described long distance travel for care as normalized but not necessarily preferable. Second, they identified and described distance-related challenges specific to CRC screening, and third, providers discussed strategies, mostly related to transportation, they use to navigate those challenges. Finally, they suggested a variety of broader solutions to reduce distance and transportation barriers to screening. Overall, distance to care remains a challenge to increasing CRC screening and contributes to disparities in rural communities. To increase early detection and reduce rural cancer disparities, efforts to increase screening and follow-up must address ways to help patients and providers navigate this distance within their local communities and contexts.


Asunto(s)
Neoplasias Colorrectales , Accesibilidad a los Servicios de Salud , Humanos , Población Rural , Detección Precoz del Cáncer , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , Illinois
12.
Neurourol Urodyn ; 42(5): 1068-1078, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36423324

RESUMEN

INTRODUCTION: Community engagement is increasingly recognized as a critical component of research, but few studies provide details on how to successfully incorporate community perspectives in urological research. This manuscript describes the community engagement strategy used by the Prevention of Lower Urinary Tract Symptoms Research Consortium (PLUS) to design RISE FOR HEALTH (RISE), a multicenter, population-based, prospective cohort study to promote bladder health. METHODS AND RESULTS: The PLUS Community Engagement Subcommittee, guided by a set of antiracist community engagement principles and practices, organized, implemented, and communicated findings for all RISE community engagement activities. Community engagement was conducted through a diverse network of community partners at PLUS clinical research centers called Rapid Assessment Partners (RAPs). Via online surveys (4), virtual discussion groups (14), and one-on-one interviews (12), RAPs provided input on RISE processes and materials, including in-person visit procedures, specimen collection instructions, survey data collection instruments, recruitment materials, the study website, and the study name. This process resulted in significant changes to these aspects of the study design with reciprocal benefits for the community partners. DISCUSSION: Meaningful community engagement improved the design and implementation of RISE. PLUS will continue to engage community partners to interpret the RISE study results, disseminate RISE findings, and inform other PLUS studies toward the development of interventions to promote bladder health. Future urological studies would also benefit from community participation in determining priority research questions to address.


Asunto(s)
Participación de la Comunidad , Vejiga Urinaria , Humanos , Estudios Prospectivos , Participación de los Interesados , Proyectos de Investigación
13.
J Womens Health (Larchmt) ; 32(2): 224-238, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36454206

RESUMEN

Objective: The purpose of this analysis was to explore adolescent and adult women's interest in public health messaging around bladder health and perceptions of its usefulness. Materials and Methods: Directed content analysis of focus group data from the Study of Habits, Attitudes, Realities, and Experiences, which explored adolescent and adult women's experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health across the life course. This article reports an analysis of the "Public Health Messaging" code, which included participants' desire or need for information about bladder health and recommendations for appropriate priority audiences. Results: Forty-four focus groups were conducted with 360 participants organized into six age groups (11-93 years). There was consensus across age groups that more information about the bladder is wanted and needed throughout the life course, as there is currently a lack of reliable educational resources. Information on bladder health was seen as useful and important because it enables people to anticipate negative changes in bladder health and act to prevent these. Several priority audiences were identified based on their risk of developing symptoms, but participants also saw value in educating the general public regardless of risk status. They also recommended education for parents and teachers who are in positions to control bathroom access. Conclusions: Results indicate a uniform desire for information on women's bladder health and a need for more research to develop individual prevention strategies and public health messaging for women of all ages, as well as guidance for organizations with a role in supporting bladder health.


Asunto(s)
Salud Pública , Vejiga Urinaria , Adulto , Femenino , Adolescente , Humanos , Niño , Adulto Joven , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Salud de la Mujer , Grupos Focales , Hábitos
14.
PM R ; 15(6): 731-741, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-35665476

RESUMEN

INTRODUCTION: People with cervical spinal cord injury (SCI) identify improving upper extremity (UE) function as a top priority. In addition to comprehensive rehabilitation, UE surgeries, including nerve and tendon transfers, enhance function. However, barriers exist to disseminating information about surgical options to enhance UE function. OBJECTIVE: To assess the experiences and preferences of people with cervical SCI and their caregivers in accessing information about surgery to enhance UE function. DESIGN: Prospective cohort study. Participants were followed up for 24 months and completed up to three interviews. SETTING: Tertiary care at academic and affiliated Veterans Administration Health Care Centers. PARTICIPANTS: Adults with cervical SCI (n = 35) ages 18 to 80 years with mid-cervical SCI American Spinal Injury Association Impairment Scale A, B, or C (at least 6 months post-injury) and their caregivers (n = 23) were eligible to participate. Participants were enrolled in three groups: nerve transfer, tendon transfer, or no UE reconstructive surgery. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Semi-structured interviews about surgical knowledge and experiences. RESULTS: Data were analyzed and three themes were identified. First, providing information about UE surgical options early post-injury was recommended. The acute or inpatient rehabilitation phases of recovery were the preferred times to receive surgical information. Second, challenges with information dissemination were identified. Participants learned about UE surgery through independent research, medical provider interactions, or peers. Third, peers were identified as valuable resources for SCI needs and surgical information. CONCLUSIONS: Following cervical SCI, information about UE reconstructive surgeries should be a standard component of education during rehabilitation. An increased understanding of the reconstructive options available to improve UE function is necessary to educate stakeholders. Future research is needed to support the development of strategies to effectively present surgical information to individuals with SCI and health care providers.


Asunto(s)
Acceso a la Información , Traumatismos de la Médula Espinal , Adulto , Humanos , Estudios Prospectivos , Extremidad Superior/cirugía , Cuadriplejía/rehabilitación , Traumatismos de la Médula Espinal/complicaciones , Traumatismos de la Médula Espinal/cirugía
15.
J Hand Ther ; 36(1): 60-65, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-34819254

RESUMEN

BACKGROUND: Given the modest functional outcomes seen after surgical reconstruction and subsequent therapy, increasing attention is being directed to patient satisfaction and psychological aspects of recovery after brachial plexus injury (BPI). PURPOSE: To better understand the recovery course after surgical reconstruction for BPI, we used qualitative interviews and focused on common points of frustration for patients. STUDY DESIGN: Qualitative, interpretive description study METHODS: We conducted semi-structured interviews with BPI patients who were 6+ months post-surgical reconstruction. The interview focused on the patients' experience with BPI, focusing on emotional aspects of recovery. Interviews were transcribed and independently coded by 2 researchers. We used inductive and deductive analysis to organize codes into themes. Once thematic saturation was reached, no additional interviews were conducted. RESULTS: We interviewed 15 BPI patients at median 13 months after surgery (range: 6-43 months). Our analysis revealed: (1) BPI patients expressed variable degrees of participation during recovery, with the indeterminate state of function making it difficult to adjust to life after BPI. (2) The uncertainty while waiting for improved function is frustrating to BPI patients, with many patients expressing concern for activities and moments they are missing due to injury. (3) While many BPI patients feel left out of decision-making, those who felt engaged in the process expressed less frustration and more acceptance of their status. CONCLUSION: Traumatic BPI patients those who felt engaged in decision-making were more receptive to adjustment to their new state of function. When coordinating multidisciplinary care, measures to encourage patients to feel agency over their outcome and to develop self-management skills have the potential to improve patient satisfaction.


Asunto(s)
Neuropatías del Plexo Braquial , Plexo Braquial , Humanos , Participación del Paciente , Plexo Braquial/cirugía , Plexo Braquial/lesiones , Emociones , Satisfacción del Paciente , Neuropatías del Plexo Braquial/cirugía
16.
J Vasc Access ; 24(5): 879-888, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-34763555

RESUMEN

BACKGROUND: The adoption rate of point of care ultrasound (POCUS) for the confirmation of central venous catheter (CVC) positioning and exclusion of post procedure pneumothorax is low despite advantages in workflow compared to traditional chest X-ray (CXR). To explore why, we convened focus groups to address barriers and facilitators of implementation for POCUS guided CVC confirmation and de-implementation of post-procedure CXR. METHODS: We conducted focus groups with emergency medicine and critical care providers to discuss current practices in POCUS for CVC confirmation. The semi-structured focus group interview guide was informed by the Consolidated Framework for Implementation Research (CFIR). We performed qualitative content analysis of the resulting transcripts using a consensual qualitative research approach (NVivo software), aiming to identify priority categories that describe the barriers and facilitators of POCUS guided CVC confirmation. RESULTS: The coding dictionary of barriers and facilitators consisted of 21 codes from the focus group discussions. Our qualitative analysis revealed that 12 codes emerged spontaneously (inductively) within the focus group discussions and aligned directly to CFIR constructs. Common barriers included provider influences (e.g. knowledge and beliefs about POCUS for CVC confirmation), external network (e.g. societal guidelines, ancillary staff, and consultants), and inertia (habit or reflexive processes). Common facilitators included ultrasound protocol advantage and champions. Time and provider outcomes (cognitive offload, ownership, and independence) emerged as early barriers but late facilitators. CONCLUSION: Our qualitative analysis demonstrates real and perceived barriers against implementation of POCUS for CVC position confirmation and pneumothorax exclusion. Our findings discovered organizational and personal constructs that will inform development of multifaceted strategies toward implementation of POCUS after CVC insertion.


Asunto(s)
Cateterismo Venoso Central , Catéteres Venosos Centrales , Neumotórax , Humanos , Cateterismo Venoso Central/métodos , Ultrasonografía/métodos , Investigación Cualitativa
17.
Hand (N Y) ; 18(1_suppl): 14S-21S, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-34018448

RESUMEN

BACKGROUND: There is variability in treatment strategies for patients with brachial plexus injury (BPI). We used qualitative research methods to better understand surgeons' rationale for treatment approaches. We hypothesized that distal nerve transfers would be preferred over exploration and nerve grafting of the brachial plexus. METHODS: We conducted semi-structured interviews with BPI surgeons to discuss 3 case vignettes: pan-plexus injury, upper trunk injury, and lower trunk injury. The interview guide included questions regarding overall treatment strategy, indications and utility of brachial plexus exploration, and the role of nerve grafting and/or nerve transfers. Interview transcripts were coded by 2 researchers. We performed inductive thematic analysis to collate these codes into themes, focusing on the role of brachial plexus exploration in the treatment of BPI. RESULTS: Most surgeons routinely explore the supraclavicular brachial plexus in situations of pan-plexus and upper trunk injuries. Reasons to explore included the importance of obtaining a definitive root level diagnosis, perceived availability of donor nerve roots, timing of anticipated recovery, plans for distal reconstruction, and the potential for neurolysis. Very few explore lower trunk injuries, citing concern with technical difficulty and unfavorable risk-benefit profile. CONCLUSIONS: Our analysis suggests that supraclavicular exploration remains a foundational component of surgical management of BPI, despite increasing utilization of distal nerve transfers. Availability of abundant donor axons and establishing an accurate diagnosis were cited as primary reasons in support of exploration. This analysis of surgeon interviews characterizes contemporary practices regarding the role of brachial plexus exploration in the treatment of BPI.


Asunto(s)
Neuropatías del Plexo Braquial , Plexo Braquial , Transferencia de Nervios , Humanos , Plexo Braquial/cirugía , Plexo Braquial/lesiones , Transferencia de Nervios/métodos , Neuropatías del Plexo Braquial/cirugía , Procedimientos Neuroquirúrgicos/métodos
18.
PLoS One ; 17(11): e0277330, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36399472

RESUMEN

OBJECTIVE: Gestational diabetes mellitus (GDM) is increasing in the United States, with higher rates among minoritized racial and ethnic populations and lower income populations. GDM increases risk for type 2 diabetes (T2DM), and postpartum diabetes screening and prevention are imperative. This qualitative study examines barriers and facilitators to postpartum T2DM screening and prevention among non-privately insured individuals with a history of GDM in a state prior to Medicaid expansion. METHODS: Thirty-six non-privately insured women with a history of GDM completed semi-structured interviews. Four focus groups and seven interviews were conducted with 30 nurse practitioners, physicians, physician assistants, nurses and registered dietitians from Federally Qualified Health Centers in St. Louis, MO. Interviews and focus groups were audio-recorded and transcribed. Data were analyzed using an integrative thematic analysis informed by the socio-ecological model. RESULTS: Barriers and facilitators to T2DM screening and prevention occur across multiple environments (society, healthcare system, interpersonal, and individual). Societal barriers include insurance issues, unemployment, and lack of transportation, childcare, safe housing, and healthy food access, while facilitators include government sponsored programs and community organizations. Healthcare system barriers include care fragmentation, scheduling policies and time constraints while facilitators include care coordination, pregnancy support groups, and education materials. Interpersonal barriers include negative care experiences, cultural differences, communication challenges, competing priorities, and lack of a social support network, while facilitators include family and friend support and positive care experiences. Individual barriers include health complications and unhealthy food and exercise patterns, while facilitators include child wellbeing, empowered attitudes and healthy food and exercise patterns. CONCLUSIONS: The socioecological model highlights the societal and systemic determinants that encompass individual and interpersonal factors affecting postpartum T2DM screening and prevention. This framework can inform multi-level interventions to increase postpartum T2DM screening and prevention in this high-risk population, including policy changes to alleviate higher-level barriers.


Asunto(s)
Diabetes Mellitus Tipo 2 , Diabetes Gestacional , Humanos , Embarazo , Niño , Femenino , Estados Unidos , Diabetes Gestacional/diagnóstico , Diabetes Gestacional/epidemiología , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/prevención & control , Diabetes Mellitus Tipo 2/epidemiología , Periodo Posparto , Tamizaje Masivo/efectos adversos , Investigación Cualitativa
19.
BMC Res Notes ; 15(1): 298, 2022 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-36088371

RESUMEN

OBJECTIVE: This study adapted Improving Cancer Patients' Insurance Choices (I Can PIC), an intervention to help cancer patients navigate health insurance decisions and care costs. The original intervention improved knowledge and confidence making insurance decisions, however, users felt limited by choices provided in insurance markets. Using decision trees and frameworks to guide adaptations, we modified I Can PIC to focus on using rather than choosing health insurance. The COVID-19 pandemic introduced unforeseen obstacles, prompting changes to study protocols. As a result, we allowed users outside of the study to use I Can PIC (> 1050 guest users) to optimize public benefit. This paper describes the steps took to conduct the study, evaluating both the effectiveness of I Can PIC and the implementation process to improve its impact. RESULTS: Although I Can PIC users had higher knowledge and health insurance literacy compared to the control group, results were not statistically significant. This outcome may be associated with systems-level challenges as well as the number and demographic characteristics of participants. The publicly available tool can be a resource for those navigating insurance and care costs, and researchers can use this flexible approach to intervention delivery and testing as future health emergencies arise.


Asunto(s)
COVID-19 , Neoplasias , COVID-19/epidemiología , COVID-19/terapia , Toma de Decisiones , Política de Salud , Humanos , Ciencia de la Implementación , Seguro de Salud , Neoplasias/terapia , Pandemias
20.
Neurourol Urodyn ; 41(7): 1590-1600, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35819129

RESUMEN

AIMS: This analysis explored and characterized the ideas adult women have about how the bladder works, the assumptions guiding their bladder-related behaviors, and the beliefs they hold about how their behaviors affect bladder health. METHODS: This was a directed content analysis of qualitative data from the Study of Habits, Attitudes, Realities, and Experiences, a focus group study conducted at seven United States research centers (July 2017 to April 2018). Participants were 316 adult women organized by four age categories (age range: 18-93 years). Analysis and interpretation focused on the "bladder assumptions and beliefs" code using a transdisciplinary lens and inductive approach. RESULTS: During their focus group discourse, participants exhibited a speculative mode of thinking about bladder health and function characterized by uncertainty about how the bladder works. They described the bladder as a mechanism for cleansing the body of impurities, viewing it as part of a larger interconnected bodily system to enable the body to stay healthy. They saw it as susceptible to anatomical changes, such as those related to pregnancy and aging. The women also postulated perceived relationships between bladder function and several health behaviors, including eating healthy foods, staying hydrated, engaging in physical activity and exercise, and adopting specific toileting and hygiene practices. CONCLUSIONS: The findings underscore the importance of guidance from healthcare professionals and systematic community based educational programs for promoting women's understanding about bladder health and empowering them to exert agency to engage in healthy bladder behaviors.


Asunto(s)
Conductas Relacionadas con la Salud , Vejiga Urinaria , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Hábitos , Personal de Salud , Humanos , Persona de Mediana Edad , Embarazo , Investigación Cualitativa , Salud de la Mujer , Adulto Joven
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