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1.
BMC Health Serv Res ; 23(1): 174, 2023 Feb 21.
Article in English | MEDLINE | ID: mdl-36810066

ABSTRACT

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.


Subject(s)
Laboratories , Neoplasms , Humans , Cross-Sectional Studies , Delivery of Health Care , Communication
2.
BMC Health Serv Res ; 23(1): 1245, 2023 Nov 13.
Article in English | MEDLINE | ID: mdl-37953236

ABSTRACT

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.


Subject(s)
Anemia, Sickle Cell , Pain Management , Humans , Adult , Pain Management/methods , Electronic Health Records , Pain/drug therapy , Anemia, Sickle Cell/complications , Anemia, Sickle Cell/therapy , Emergency Service, Hospital
3.
J Hand Ther ; 36(1): 60-65, 2023.
Article in English | MEDLINE | ID: mdl-34819254

ABSTRACT

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.


Subject(s)
Brachial Plexus Neuropathies , Brachial Plexus , Humans , Patient Participation , Brachial Plexus/surgery , Brachial Plexus/injuries , Emotions , Patient Satisfaction , Brachial Plexus Neuropathies/surgery
4.
J Natl Compr Canc Netw ; 20(5): 488-495.e4, 2022 05.
Article in English | MEDLINE | ID: mdl-35545172

ABSTRACT

BACKGROUND: Tobacco cessation after a cancer diagnosis can extend patient survival by improving outcomes for primary cancer and preventing secondary cancers. However, smoking is often unaddressed in cancer care, highlighting the need for strategies to increase treatment reach and cessation. This study examined a low-burden, point-of-care tobacco treatment program (ELEVATE) featuring an electronic health record-enabled smoking module and decision support tools to increase the reach and effectiveness of evidence-based smoking cessation treatment. METHODS: This study included adult outpatient tobacco smokers (n=13,651) in medical oncology, internal medicine, and surgical oncology clinics from a large midwestern healthcare system. We examined reach and effectiveness of ELEVATE with 2 comparisons: (1) preimplementation versus postimplementation of ELEVATE and (2) ELEVATE versus usual care. Data were evaluated during 2 time periods: preimplementation (January through May 2018) and postimplementation (June through December 2018), with smoking cessation assessed at the last follow-up outpatient encounter during the 6 months after these periods. RESULTS: The proportion of current tobacco smokers receiving cessation treatment increased from pre-ELEVATE to post-ELEVATE (1.6%-27.9%; difference, 26.3%; relative risk, 16.9 [95% CI, 9.8-29.2]; P<.001). Compared with 27.9% treatment reach with ELEVATE in the postimplementation time period, reach within usual care clinics ranged from 11.8% to 12.0% during this same period. The proportion of tobacco smokers who subsequently achieved cessation increased significantly from pre-ELEVATE to post-ELEVATE (12.0% vs 17.2%; difference, 5.2%; relative risk, 1.3 [95% CI, 1.1-1.5]; P=.002). Compared with 17.2% smoking cessation with ELEVATE in the postimplementation time period, achievement of cessation within usual care clinics ranged from 8.2% to 9.9% during this same period. CONCLUSIONS: A low-burden, point-of-care tobacco treatment strategy increased tobacco treatment and cessation, thereby improving access to and the impact of evidence-based cessation treatment. Using implementation strategies to embed tobacco treatment in every healthcare encounter promises to engage more smokers in evidence-based treatment and facilitate smoking cessation, thereby improving care cancer for patients who smoke.


Subject(s)
Neoplasms , Smoking Cessation , Adult , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Point-of-Care Systems , Nicotiana , Tobacco Use
5.
Neurourol Urodyn ; 41(6): 1468-1481, 2022 08.
Article in English | MEDLINE | ID: mdl-35686553

ABSTRACT

INTRODUCTION: There has been a sparse exploration of the lived experience of men with urologic chronic pelvic pain syndrome (UCPPS), and none with the goal of Investigating the experience of "flares" as part of this chronic pain syndrome in men. METHODS: We conducted three focus groups of male UCPPS patients at two sites of the MAPP Research Network (n = 16 total participants) to explore the full spectrum of flares and their impact on men's lives. RESULTS: Flare experiences were common and specific symptom components varied widely. Men reported nonpelvic symptoms (e.g., diarrhea), and variability in symptom intensity (mild to severe), duration (minutes to days), and frequency of flares. Flares episodes, and the threat of flares, were disruptive to their lives, social roles, and relationships. Distinct long-term impacts were reported, such as decreased sexual activity, decreased travel, and potential loss of employment or career. The themes included social isolation and the need for a sense of control and understanding over their unpredictable symptoms. CONCLUSIONS: Given their negative impact, future research with men and UCPPS should focus on approaches to prevent flares, and should consider a multimodal approach to reducing the frequency, severity, and/or duration. Quality of life may be improved by providing men with a sense of control over their symptoms and offering them multimodal treatment options, consistent with the recommendations for further research for women with UCPPS.


Subject(s)
Chronic Pain , Pelvic Pain , Urologic Diseases , Chronic Pain/complications , Humans , Male , Pelvic Pain/complications , Qualitative Research , Quality of Life , Syndrome , Urologic Diseases/complications
6.
Clin Diabetes ; 40(1): 39-50, 2022 Jan.
Article in English | MEDLINE | ID: mdl-35221471

ABSTRACT

Gestational diabetes mellitus (GDM) increases type 2 diabetes risk; however, postpartum diabetes screening rates are low. Using semi-structured interviews and focus groups, this study investigates the understanding of GDM and its relationship to future diabetes risk and diabetes prevention among patients with public or no insurance (n = 36), health care providers (n = 21), and clinic staff (n = 9) from Federally Qualified Health Centers. Five main themes emerged: 1) general understanding of GDM diagnosis with focus on neonatal complications; 2) variable recall of diet, exercise, and weight recommendations; 3) overwhelming medication and self-monitoring routines; 4) short-term focus of type 2 diabetes risk and screening; and 5) limited understanding of all options for diabetes prevention. The results may inform diabetes screening and prevention interventions in primary care settings.

7.
Prev Chronic Dis ; 18: E14, 2021 02 18.
Article in English | MEDLINE | ID: mdl-33600304

ABSTRACT

INTRODUCTION: Few studies have examined the effects of racial segregation on colorectal cancer (CRC) outcomes, and none has determined whether rurality moderates the effect of racial segregation on CRC mortality. We examined whether the effect of segregation on CRC mortality varied by rurality in the Mississippi Delta Region, an economically distressed and historically segregated region of the United States. METHODS: We used data from the US Census Bureau and the 1999-2018 Surveillance, Epidemiology, and End Results (SEER) program to estimate mixed linear regression models in which CRC mortality rates among Black and White residents in Delta Region counties (N = 252) were stratified by rurality and regressed on White-Black residential segregation indices and 4 socioeconomic control variables. RESULTS: Among Black residents, CRC mortality rates in urban counties were a function of a squared segregation term (b = 162.78, P = .01), indicating that the relationship between segregation and CRC mortality was U-shaped. Among White residents, main effects of annual household income (b = 29.01, P = .04) and educational attainment (b = 34.58, P = .03) were associated with CRC mortality rates in urban counties, whereas only annual household income (b = 19.44, P = .04) was associated with CRC mortality rates in rural counties. Racial segregation was not associated with CRC mortality rates among White residents. CONCLUSION: Our county-level analysis suggests that health outcomes related to racial segregation vary by racial, contextual, and community factors. Segregated rural Black communities may feature stronger social bonds among residents than urban communities, thus increasing interpersonal support for cancer prevention and control. Future research should explore the effect of individual-level factors on colorectal cancer mortality.


Subject(s)
Colorectal Neoplasms , Social Segregation , Black or African American , Humans , Racial Groups , Residence Characteristics , United States/epidemiology , Urban Population , White People
8.
Qual Health Res ; 31(3): 430-442, 2021 02.
Article in English | MEDLINE | ID: mdl-33427071

ABSTRACT

Little is known about social processes shaping adolescent and adult women's toileting behaviors. The "Study of Habits, Attitudes, Realities, and Experiences" (SHARE) examines adolescent and adult women's experiences related to bladder health across the life course. Forty-four focus groups with 360 participants organized by six age groups were conducted across seven sites. A transdisciplinary team used social cognitive theory as an interpretive lens across a five-stage analysis. The act of observing was identified as the overarching social process informing women's toileting behaviors in three ways: (a) observing others' toileting behavior, (b) being aware that one's own toileting behaviors are monitored by others, and (c) observing oneself relative to others. We found that underlying processes of toileting behaviors, seemingly private are, in fact, highly social. We suggest, given this social embeddedness that health promotion efforts should leverage interpersonal networks for "social norming" interventions and policies to promote healthy toileting behaviors.


Subject(s)
Health Behavior , Self Care , Adolescent , Adult , Female , Focus Groups , Health Promotion , Humans , Psychological Theory
9.
Health Promot Pract ; 22(3): 367-376, 2021 05.
Article in English | MEDLINE | ID: mdl-31630559

ABSTRACT

Health researchers are increasingly turning to qualitative research for a nuanced understanding of complex health phenomena. The quality and rigor of qualitative research relies on individual data collector skills, yet few guidelines exist for training multidisciplinary, multi-institution qualitative research teams. Specific guidance is needed on qualitative research practices that ensure scientific rigor by optimizing diverse experience and expertise across research centers. We describe our systematic approach to training a cohort of 15 focus group moderators from seven universities in the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium's Study of Habits, Attitudes, Realities, and Experiences (SHARE). SHARE's aim was to explore women and girls' experiences, perceptions, beliefs, knowledge, and behaviors related to bladder health and function across the life course. Drawing on adult education and action-learning best practices, a three-phase curriculum was designed to maximize moderator proficiency and qualitative research expertise. The phases involved online, interactive web-based education, in-person didactic training with experiential components, and tailored supplemental online training. Evaluative feedback was collected before, during, and after the training. Feedback was used to identify emergent training needs. This training approach may be used by transdisciplinary research teams conducting multisite research to assure qualitative research credibility and trustworthiness.


Subject(s)
Curriculum , Interdisciplinary Research , Adult , Female , Focus Groups , Humans , Qualitative Research , Universities
10.
Oncologist ; 25(7): 609-619, 2020 07.
Article in English | MEDLINE | ID: mdl-32108976

ABSTRACT

BACKGROUND: Many cancer survivors struggle to choose a health insurance plan that meets their needs because of high costs, limited health insurance literacy, and lack of decision support. We developed a web-based decision aid, Improving Cancer Patients' Insurance Choices (I Can PIC), and evaluated it in a randomized trial. MATERIALS AND METHODS: Eligible individuals (18-64 years, diagnosed with cancer for ≤5 years, English-speaking, not Medicaid or Medicare eligible) were randomized to I Can PIC or an attention control health insurance worksheet. Primary outcomes included health insurance knowledge, decisional conflict, and decision self-efficacy after completing I Can PIC or the control. Secondary outcomes included knowledge, decisional conflict, decision self-efficacy, health insurance literacy, financial toxicity, and delayed care at a 3-6-month follow-up. RESULTS: A total of 263 of 335 eligible participants (79%) consented and were randomized; 206 (73%) completed the initial survey (106 in I Can PIC; 100 in the control), and 180 (87%) completed a 3-6 month follow-up. After viewing I Can PIC or the control, health insurance knowledge and a health insurance literacy item assessing confidence understanding health insurance were higher in the I Can PIC group. At follow-up, the I Can PIC group retained higher knowledge than the control; confidence understanding health insurance was not reassessed. There were no significant differences between groups in other outcomes. Results did not change when controlling for health literacy and employment. Both groups reported having limited health insurance options. CONCLUSION: I Can PIC can improve cancer survivors' health insurance knowledge and confidence using health insurance. System-level interventions are needed to lower financial toxicity and help patients manage care costs. IMPLICATIONS FOR PRACTICE: Inadequate health insurance compromises cancer treatment and impacts overall and cancer-specific mortality. Uninsured or underinsured survivors report fewer recommended cancer screenings and may delay or avoid needed follow-up cancer care because of costs. Even those with adequate insurance report difficulty managing care costs. Health insurance decision support and resources to help manage care costs are thus paramount to cancer survivors' health and care management. We developed a web-based decision aid, Improving Cancer Patients' Insurance Choices (I Can PIC), and evaluated it in a randomized trial. I Can PIC provides health insurance information, supports patients through managing care costs, offers a list of financial and emotional support resources, and provides a personalized cost estimate of annual health care expenses across plan types.


Subject(s)
Health Literacy , Neoplasms , Aged , Decision Support Techniques , Humans , Insurance, Health , Medically Uninsured , Medicare , Neoplasms/therapy , United States
11.
Neurourol Urodyn ; 39(1): 225-236, 2020 01.
Article in English | MEDLINE | ID: mdl-31578778

ABSTRACT

AIMS: This analysis explored and characterized adolescent and adult women's lay language and discourse related to bladder health/function. METHODS: Forty-four focus groups were conducted across seven United States research centers with 360 adolescents and adult women, organized by six age categories. Multilevel content analyses classified emergent themes. A transdisciplinary lens and inductive approach guided data interpretation. Interpretive insights were validated by a community engagement panel. RESULTS: A repertoire of bladder function terms emerged, including explicit functional terms, formal and polite euphemistic terms, and informal familiar terms, as well as cultural and regional metaphors and idioms. Terminology usage was historically grounded, developmental, and cumulative across the life course. Lay discourse was contextual and affectively valent, suggesting unspoken, commonly understood, situation-based "rules" for talking about bladder function. Discourse appeared to be siloed within family and friendship circles. Adolescents and adult women often described, rather than named, bladder sensations or problems. Terminology for bladder issues tended to minimize severity and frequency, with medical language only relevant to extreme examples and not applicable to mild episodes. CONCLUSIONS: A definitional discordance between medical and lay views of bladder problems was identified, signifying a need to clarify the meaning of medical terms for lay persons. Adolescents and adult women do not have or use standardized precise terminology for bladder health and function, relying instead on social convention and interpersonal context. Findings can be used to foster shared understandings between lay persons and health professionals, informing development of clinical, research, and public health initiatives to promote bladder health.


Subject(s)
Health Knowledge, Attitudes, Practice , Terminology as Topic , Urination Disorders , Adolescent , Adult , Aged , Aged, 80 and over , Child , Female , Focus Groups , Health Personnel , Humans , Language , Middle Aged , Public Health , Qualitative Research , Urinary Bladder , Young Adult
12.
Prev Chronic Dis ; 17: E140, 2020 11 05.
Article in English | MEDLINE | ID: mdl-33155970

ABSTRACT

INTRODUCTION: Low-dose computed tomography (LDCT) lung cancer screening is recommended for current and former smokers who meet eligibility criteria. Few studies have quantitatively examined disparities in access to LDCT screening. The objective of this study was to examine relationships between 1) rurality, sociodemographic characteristics, and access to LDCT lung cancer screening and 2) screening access and lung cancer mortality. METHODS: We used census block group and county-level data from Missouri and Illinois. We defined access to screening as presence of an accredited screening center within 30 miles of residence as of May 2019. We used mixed-effects logistic models for screening access and county-level multiple linear regression models for lung cancer mortality. RESULTS: Approximately 97.6% of metropolitan residents had access to screening, compared with 41.0% of nonmetropolitan residents. After controlling for sociodemographic characteristics, the odds of having access to screening in rural areas were 17% of the odds in metropolitan areas (95% CI, 12%-26%). We observed no association between screening access and lung cancer mortality. Southeastern Missouri, a rural and impoverished area, had low levels of screening access, high smoking prevalence, and high lung cancer mortality. CONCLUSION: Although access to LDCT is lower in rural areas than in urban areas, lung cancer mortality in rural residents is multifactorial and cannot be explained by access alone. Targeted efforts to implement rural LDCT screening could reduce geographic disparities in access, although further research is needed to understand how increased access to screening could affect uptake and rural disparities in lung cancer mortality.


Subject(s)
Early Detection of Cancer/methods , Healthcare Disparities/statistics & numerical data , Lung Neoplasms/mortality , Smoking/epidemiology , Aged , Female , Humans , Illinois/epidemiology , Lung Neoplasms/diagnostic imaging , Male , Mass Screening , Middle Aged , Missouri/epidemiology , Prevalence , Rural Population/statistics & numerical data , Tomography, X-Ray Computed , Urban Population/statistics & numerical data
13.
Urol Nurs ; 40(6)2020.
Article in English | MEDLINE | ID: mdl-33642840

ABSTRACT

This secondary analysis studied 50 transcripts of women who shared day-to-day experiences of lower urinary tract symptoms (LUTS) and characterized temporal (time-associated) features of living with LUTS. Findings revealed two overarching time-associated themes: The Complexity of LUTS and The Quest for Empowerment over LUTS. Findings suggest that the temporal burden of LUTS is the accumulated impact of symptoms and symptom management on women's daily lives within multiple contexts across the life course. Increasing nurses' knowledge of the temporal context of LUTS may heighten awareness and improve symptom detection and management.

14.
J Adv Nurs ; 2019 Jul 09.
Article in English | MEDLINE | ID: mdl-31287183

ABSTRACT

AIM: The study purpose is to explore adolescent and adult women's experiences, perceptions, beliefs, knowledge and behaviors related to bladder health across the life course using a socioecological perspective. Lower urinary tract symptoms affect between 20-40% of young adult to middle-aged women, with symptoms increasing in incidence and severity with aging. There is limited evidence to address bladder health promotion and prevention of dysfunction. This first study of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium is designed to address gaps in existing qualitative research in this area. DESIGN: This focus group study will be implemented across seven geographically diverse United States research centers using a semi-structured focus group guide informed by a conceptual framework based on the socioecological model. METHODS: The study was approved in July 2017. A total of 44 focus groups composed of 6-8 participants representing six different age categories (ranging from 11 to over 65 years) will be completed. We aim to recruit participants with diverse demographic and personal characteristics including race, ethnicity, education, socioeconomic status, urban/rural residence, physical/health conditions and urinary symptom experience. Up to 10 of these focus groups will be conducted in Spanish. Focus group transcripts will undergo content analysis and data interpretation to identify and classify themes and articulate emerging themes. DISCUSSION: This foundational qualitative study seeks to develop an evidence base to inform future research on bladder health promotion in adolescent and adult women. IMPACT: This study has the potential to provide new insights and understanding into adolescent and adult women's lived experience of bladder health, the experience of lower urinary symptoms and knowledge and beliefs across the life course. This article is protected by copyright. All rights reserved.

15.
J Psychosoc Oncol ; 37(4): 509-525, 2019.
Article in English | MEDLINE | ID: mdl-30714858

ABSTRACT

OBJECTIVES: In this paper, we analyze narratives from a Photovoice project on colorectal cancer screening that was carried out with people who had undergone screening and were found to not have cancer. METHODS: Three groups, totaling eighteen participants, took part in the project, meeting multiple times over the course of approximately 10 weeks, and discussing photos they took about colorectal cancer screening. RESULTS: A common way in which the participants conveyed their screening experiences was through reflection on their own or other people's illnesses. Our findings highlight the multiple meanings of receiving a "good" or noncancerous screening result after undergoing cancer screening. CONCLUSION: Such findings suggest that framing noncancerous results only in terms of relief or other positive emotions may ignore the realities people and their families face and their remaining concerns. This paper has broader implications for policies to reduce cancer disparities as well as public health and patient-provider communication about screening.


Subject(s)
Colorectal Neoplasms/psychology , Communication , Early Detection of Cancer/psychology , Narration , Physician-Patient Relations , Aged , Colorectal Neoplasms/diagnosis , Female , Humans , Male , Middle Aged , Photography
17.
Qual Health Res ; 26(1): 17-31, 2016 Jan.
Article in English | MEDLINE | ID: mdl-26160775

ABSTRACT

Dominant health care professional discourses on cancer take for granted high levels of individual responsibility in cancer prevention, especially in expectations about preventive screening. At the same time, adhering to screening guidelines can be difficult for lower income and under-insured individuals. Colorectal cancer (CRC) is a prime example. Since the advent of CRC screening, disparities in CRC mortality have widened along lines of income, insurance, and race in the United States. We used a community-engaged research method, Photovoice, to examine how people from medically under-served areas experienced and gave meaning to CRC screening. In our analysis, we first discuss ways in which participants recounted screening as a struggle. Second, we highlight a category that participants suggested was key to successful screening: social connections. Finally, we identify screening as an emotionally laden process that is underpinned by feelings of uncertainty, guilt, fear, and relief. We discuss the importance of these findings to research and practice.


Subject(s)
Colonic Neoplasms/diagnosis , Colonic Neoplasms/psychology , Colonoscopy/psychology , Early Detection of Cancer/psychology , Health Knowledge, Attitudes, Practice , Patient Compliance/psychology , Aged , Colonic Neoplasms/mortality , Colonic Neoplasms/prevention & control , Colonoscopy/economics , Early Detection of Cancer/methods , Female , Healthcare Disparities , Humans , Insurance, Health/economics , Male , Middle Aged , Missouri/epidemiology , Photography , Social Support , Socioeconomic Factors
18.
Int Urogynecol J ; 26(7): 1047-60, 2015 Jul.
Article in English | MEDLINE | ID: mdl-25792349

ABSTRACT

INTRODUCTION AND HYPOTHESIS: Although in-depth qualitative information is critical to understanding patients' symptom experiences and to developing patient-centered outcome measures, only one previous qualitative study has assessed urological chronic pelvic pain syndrome (UCPPS) symptom exacerbations ("flares"). METHODS: We conducted eight focus groups of female UCPPS (interstitial cystitis/bladder pain syndrome) patients at four sites from the MAPP Research Network (n = 57, mean = 7/group) to explore the full spectrum of flares and their impact on patients' lives. RESULTS: Flare experiences were common and varied widely in terms of UCPPS symptoms involved, concurrent nonpelvic symptoms (e.g., diarrhea), symptom intensity (mild to severe), duration (minutes to years), and frequency (daily to < once/year), although the most commonly described flares were painful flares lasting days. These latter flares were also most disruptive to participants' lives, causing some to cancel social events, miss work or school, and in the worst cases, go to the emergency room or on disability leave. Participants also reported a longer-term impact of flares, including negative effects on their sexual functioning and marital, family, and social relationships; and the loss of employment or limited career or educational advancement. Emerging themes included the need for a sense of control over unpredictable symptoms and reduced social engagement. CONCLUSIONS: Given their negative impact, future research should focus on approaches to prevent flares, and to reduce their frequency, severity, and/or duration. Patients' quality of life may also be improved by providing them with a sense of control over their symptoms through ready access to flare medications/therapy, and by engaging them socially.


Subject(s)
Chronic Pain/psychology , Pelvic Pain/psychology , Symptom Flare Up , Adult , Aged , Chronic Pain/therapy , Female , Focus Groups , Humans , Middle Aged , Pelvic Pain/therapy , Self Care , Young Adult
19.
J Cancer Educ ; 30(4): 664-9, 2015 Dec.
Article in English | MEDLINE | ID: mdl-25510368

ABSTRACT

Traditionally, postdoctoral training programs largely have focused efforts within a single discipline or closely related fields. Yet, addressing the complex questions around cancer prevention and control increasingly requires the ability to work and communicate across disciplines in order to gain a perspective that encompasses the multilevel and multifaceted issues involved with this public health issue. To address this complexity, a transdisciplinary training program was implemented to cultivate the professional and scientific development of the postdoctoral fellows in Washington University in St Louis School of Medicine's Division of Public Health Sciences and NCI-funded centers (Community Networks Program Center and Transdisciplinary Research in Energetics in Cancer Center). Fellows are matched with primary mentors and assemble a multidisciplinary mentoring team. Structured programs support the transition of fellows from disciplinary trainees to independent transdisciplinary scholars and provide exposure to multiple disciplines. This article describes the training program, challenges encountered in implementation, solutions to those problems, and the metrics employed to evaluate the program's success. The goal of the program is to train emerging investigators in the conceptual bases, language, and practices that underlie a transdisciplinary perspective on cancer prevention and control research, to create an infrastructure for continued cross-discipline dialogue and collaboration, and to develop disseminable strategies for such training.


Subject(s)
Biomedical Research , Education, Continuing , Interdisciplinary Communication , Medical Oncology/education , Neoplasms/prevention & control , Research Personnel/education , Staff Development , Cooperative Behavior , Fellowships and Scholarships , Humans , Models, Educational , Program Development , Public Health/education , Training Support , Universities
20.
J Cancer Educ ; 30(4): 616-22, 2015 Dec.
Article in English | MEDLINE | ID: mdl-25351452

ABSTRACT

Community-based participatory (CBP) strategies are considered important to efforts to eliminate disparities. This paper outlines how the Program for the Elimination of Cancer Disparities (PECaD) uses CBP strategies as a part of a long-term cancer education, prevention, and control strategy in an urban community. Community partnerships have proved to be vital resources to inform PECaD's agenda and the research practice of academic partners. We begin with a description of PECaD governance and partnership structures. The paper then describes programmatic activities and successes, including efforts to monitor clinical trials, deployment of mammography resources, anti-smoking, and prostate and colorectal cancer (CRC) screening education. The influence of changes in funding priorities, preventive screening policy, and community partner development on the partnership process over time is discussed. PECaD community partners have grown and expanded beyond the Program's mission and developed additional partnerships, resulting in a reevaluation of relationships. The impact of these external and internal changes and pressures on the partnerships are noted. The evolution of the evaluation process and what it has revealed about needed improvements in PECaD activities and operations is presented. A summary of the lessons learned and their implications for CBP practice are provided.


Subject(s)
Community Networks , Community-Based Participatory Research/methods , Health Status Disparities , Healthcare Disparities , Neoplasms/prevention & control , Health Education , Humans
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