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1.
Res Sq ; 2024 May 23.
Article in English | MEDLINE | ID: mdl-38826356

ABSTRACT

Changing built environment conditions to impact health mindsets and health equity may be a promising target for public health interventions. The present study was a cluster randomized controlled trial to test the impact of remediating vacant and abandoned properties on factors related to health mindset-including well-being, health interconnectedness, social capital markers, neighborhood disorder and worry-as well as direct and indirect violence experiences and the moderating role of racial and income segregation on outcomes. A residential cohort of 405 participants from 194 randomly assigned geographic clusters were surveyed over five waves from 2019 to 2023. Compared to clusters with no treatment, participants in clusters where both vacant lots and abandoned homes were treated experienced significant increases in sense of community (83%, 95% CI=71 to 96%, p=0.01). Among participants in randomization clusters where only vacant lots were treated, there were declines in perceived neighborhood disorder (-55%, 95% CI=-79 to -5, p=0.06) and worry about community violence (-56%, 95% CI=-58 to -12, p=0.06). There was also a moderating effect of racial and income spatial polarization, with the greatest changes in sense of community observed among more deprived areas with both homes and lots treated; and the largest changes in neighborhood worry and disorder were seen in more deprived areas with only lots treated. Remediation of vacant and abandoned properties may be one approach to change some but not all mindsets around health, and the effects may depend on the type of remediation as well as larger neighborhood conditions such segregation.

2.
Ann Surg Oncol ; 2024 May 08.
Article in English | MEDLINE | ID: mdl-38717542

ABSTRACT

BACKGROUND: Standardization of procedures for data abstraction by cancer registries is fundamental for cancer surveillance, clinical and policy decision-making, hospital benchmarking, and research efforts. The objective of the current study was to evaluate adherence to the four components (completeness, comparability, timeliness, and validity) defined by Bray and Parkin that determine registries' ability to carry out these activities to the hospital-based National Cancer Database (NCDB). METHODS: Tbis study used data from U.S. Cancer Statistics, the official federal cancer statistics and joint effort between the Centers for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI), which includes data from National Program of Cancer Registries (NPCR) and Surveillance, Epidemiology, and End Results (SEER) to evaluate NCDB completeness between 2016 and 2020. The study evaluated comparability of case identification and coding procedures. It used Commission on Cancer (CoC) standards from 2022 to assess timeliness and validity. RESULTS: Completeness was demonstrated with a total of 6,828,507 cases identified within the NCDB, representing 73.7% of all cancer cases nationwide. Comparability was followed using standardized and international guidelines on coding and classification procedures. For timeliness, hospital compliance with timely data submission was 92.7%. Validity criteria for re-abstracting, recording, and reliability procedures across hospitals demonstrated 94.2% compliance. Additionally, data validity was shown by a 99.1% compliance with histologic verification standards, a 93.6% assessment of pathologic synoptic reporting, and a 99.1% internal consistency of staff credentials. CONCLUSION: The NCDB is characterized by a high level of case completeness and comparability with uniform standards for data collection, and by hospitals with high compliance, timely data submission, and high rates of compliance with validity standards for registry and data quality evaluation.

3.
Res Pract Thromb Haemost ; 8(4): 102420, 2024 May.
Article in English | MEDLINE | ID: mdl-38817950

ABSTRACT

Background: Cancer-associated venous thromboembolism (CA-VTE) represents a major cause of morbidity and mortality in patients with cancer. Despite poor outcomes, there is an ongoing knowledge gap in epidemiologic data related to this association. Objectives: To compare venous thromboembolism (VTE) characteristics, risk factors, and outcomes between patients with and without active cancer in a racially diverse population. Methods: Our surveillance project occurred at the 3 hospitals in Durham County, North Carolina, from April 2012 through March 2014. Electronic and manual methods were used to identify unique Durham County residents with VTE. Results: We identified 987 patients with VTE during the surveillance period. Of these, 189 patients had active cancer at the time of their VTE event. Patients with CA-VTE were older (median age: 69 years vs 60 years, P < .0001) and had a lower body mass index (median body mass index: 26.0 kg/m2 vs 28.4 kg/m2, P = .0001) than noncancer patients. The most common cancers in our cohort were gastrointestinal, breast, genitourinary, and lung. The proportion of VTE cases with pulmonary embolism (PE) was greater in the cancer cohort compared with that in the noncancer cohort (58.2% vs 44.0%, P = .0004). Overall survival was lower in the CA-VTE group than in patients without cancer (P < .0001). Black patients with CA-VTE had lower proportion of PE (52.3% vs 67.1%, P = .05) but had decreased survival (P < .0003) in comparison with White patients. Conclusion: Future studies may be needed to continue to evaluate local and national VTE data to improve VTE prevention strategies and CA-VTE outcomes.

4.
MMWR Morb Mortal Wkly Rep ; 73(15): 351-357, 2024 Apr 18.
Article in English | MEDLINE | ID: mdl-38652735

ABSTRACT

Introduction: Approximately 40,000 U.S. women die from breast cancer each year. Mammography is recommended to screen for breast cancer and reduce breast cancer mortality. Adverse social determinants of heath (SDOH) and health-related social needs (HRSNs) (e.g., lack of transportation and social isolation) can be barriers to getting mammograms. Methods: Data from the 2022 Behavioral Risk Factor Surveillance System were analyzed to estimate the prevalence of mammography use within the previous 2 years among women aged 40-74 years by jurisdiction, age group, and sociodemographic factors. The association between mammography use and measures of SDOH and HRSNs was assessed for jurisdictions that administered the Social Determinants and Health Equity module. Results: Among women aged 50-74 years, state-level mammography use ranged from 64.0% to 85.5%. Having health insurance and a personal health care provider were associated with having had a mammogram within the previous 2 years. Among women aged 50-74 years, mammography prevalence was 83.2% for those with no adverse SDOH and HRSNs and 65.7% for those with three or more adverse SDOH and HRSNs. Life dissatisfaction, feeling socially isolated, experiencing lost or reduced hours of employment, receiving food stamps, lacking reliable transportation, and reporting cost as a barrier for access to care were all strongly associated with not having had a mammogram within the previous 2 years. Conclusions and Implications for Public Health Practice: Identifying specific adverse SDOH and HRSNs that women experience and coordinating activities among health care providers, social services, community organizations, and public health programs to provide services that help address these needs might increase mammography use and ultimately decrease breast cancer deaths.


Subject(s)
Behavioral Risk Factor Surveillance System , Mammography , Social Determinants of Health , Humans , Female , Middle Aged , Mammography/statistics & numerical data , Aged , United States/epidemiology , Adult , Breast Neoplasms/epidemiology , Health Services Accessibility , Health Services Needs and Demand
5.
J Urban Health ; 2024 Apr 12.
Article in English | MEDLINE | ID: mdl-38609700

ABSTRACT

The characteristics of a neighborhood's built environment may influence health-promoting behaviors, interactions between neighbors, and perceptions of safety. Although some research has reported on how youth in high-violence communities navigate danger, less work has investigated how these youth perceive the built environment, their desires for these spaces, and how these desires relate to their conceptions of safety and perceptions of other residents. To fill this gap, this study used focus group data from 51 youth ages 13-24 living in New Orleans, Louisiana. Four themes were developed using reflexive thematic analysis: community violence is distressing and disruptive, youth use and want to enjoy their neighborhood, systemic failure contributes to negative outcomes, and resources and cooperation create safety. This analysis indicates that young people desire to interact with the built environment despite the threat of community violence. They further identified built environment assets that facilitate socialization and recreation, such as local parks, and social assets in the form of cooperation and neighbor-led civic engagement initiatives. In addition, the youth participants demonstrated awareness of structural inequities that influence neighborhood health and violence-related outcomes. This study contributes to efforts to understand how youth with high levels of community violence exposure understand and interact with the built and social environments.

6.
Sci Rep ; 14(1): 5773, 2024 03 09.
Article in English | MEDLINE | ID: mdl-38459081

ABSTRACT

Here we report on the relationship between measures of social capital, and their association with changes in self-reported measures of psychological distress during the early period of the COVID-19 pandemic. We analyze data from an existing cluster randomized control trial (the Healthy Neighborhoods Project) with 244 participants from New Orleans, Louisiana. Changes in self-reported scores between baseline (January 2019-March 2020) and participant's second survey (March 20, 2020, and onwards) are calculated. Logistic regression is employed to examine the association between social capital indicators and measures of psychological distress adjusting for key covariates and controlling for residential clustering effects. Participants reporting higher than average scores for social capital indicators are significantly less likely to report increases in psychosocial distress between pre and during the early stage of the COVID-19 pandemic. Those who report higher than average sense of community were approximately 1.2 times less likely than those who report lower than average sense of community scores to experience increases in psychological distress before and during the global pandemic (OR 0.79; 95% CI 0.70,0.88, p ≤ 0.001), even after controlling for key covariates. Findings highlight the potentially important role that community social capital and related factors may play in the health of underrepresented populations during times of major stress. Specifically, the results suggest an important role of cognitive social capital and perceptions of community membership, belonging, and influence in buffering changes of mental health distress experienced during the initial period of the COVID-19 pandemic among a sample of residents.


Subject(s)
COVID-19 , Psychological Distress , Social Capital , Humans , COVID-19/epidemiology , New Orleans , Pandemics , Stress, Psychological/psychology
7.
Public Health Res (Southampt) ; 12(1): 1-111, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38327175

ABSTRACT

Background: Stigma contributes to the negative social conditions persons with intellectual disabilities are exposed to, and it needs tackling at multiple levels. Standing Up for Myself is a psychosocial group intervention designed to enable individuals with intellectual disabilities to discuss stigmatising encounters in a safe and supportive setting and to increase their self-efficacy in managing and resisting stigma. Objectives: To adapt Standing Up for Myself to make it suitable as a digital intervention; to evaluate the feasibility and acceptability of Digital Standing Up for Myself and online administration of outcome measures in a pilot; to describe usual practice in the context of the coronavirus disease 2019 pandemic to inform future evaluation. Design: Adaptation work followed by a single-arm pilot of intervention delivery. Setting and participants: Four third and education sector organisations. Individuals with mild-to-moderate intellectual disabilities, aged 16+, members of existing groups, with access to digital platforms. Intervention: Digital Standing Up for Myself intervention. Adapted from face-to-face Standing Up for Myself intervention, delivered over four weekly sessions, plus a 1-month follow-up session. Outcomes: Acceptability and feasibility of delivering Digital Standing Up for Myself and of collecting outcome and health economic measures at baseline and 3 months post baseline. Outcomes are mental well-being, self-esteem, self-efficacy in rejecting prejudice, reactions to discrimination and sense of social power. Results: Adaptation to the intervention required changes to session duration, group size and number of videos; otherwise, the content remained largely the same. Guidance was aligned with digital delivery methods and a new group member booklet was produced. Twenty-two participants provided baseline data. The intervention was started by 21 participants (four groups), all of whom were retained at 3 months. Group facilitators reported delivering the intervention as feasible and suggested some refinements. Fidelity of the intervention was good, with over 90% of key components observed as implemented by facilitators. Both facilitators and group members reported the intervention to be acceptable. Group members reported subjective benefits, including increased confidence, pride and knowing how to deal with difficult situations. Digital collection of all outcome measures was feasible and acceptable, with data completeness ≥ 95% for all measures at both time points. Finally, a picture of usual practice has been developed as an intervention comparator for a future trial. Limitations: The pilot sample was small. It remains unclear whether participants would be willing to be randomised to a treatment as usual arm or whether they could be retained for 12 months follow-up. Conclusions: The target number of groups and participants were recruited, and retention was good. It is feasible and acceptable for group facilitators with some training and supervision to deliver Digital Standing Up for Myself. Further optimisation of the intervention is warranted. Future work: To maximise the acceptability and reach of the intervention, a future trial could offer the adapted Digital Standing Up for Myself, potentially alongside the original face-to-face version of the intervention. Study registration: This study was registered as ISRCTN16056848. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 17/149/03) and is published in full in Public Health Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information.


People with intellectual disabilities (or 'learning disabilities' in United Kingdom language) are more likely to experience poor physical and mental health than the general population. Stigma (negative stereotypes, prejudice and discrimination) has been linked to lower self-esteem, quality of life, and mental and physical ill health. Efforts to empower people with intellectual disabilities themselves to challenge stigma with a view to improving well-being, health and self-esteem are lacking. In 2017, we developed Standing Up for Myself, a brief group-based programme for people with mild-to-moderate intellectual disabilities aged 16+ to address this gap. As this study got underway, face-to-face meetings were suspended due to the coronavirus disease 2019 pandemic. We used the opportunity to assess whether Standing Up for Myself could be delivered through web-based meetings. We adapted Standing Up for Myself for digital delivery, with close input from advisors with intellectual disabilities and experienced group facilitators. We then tested the digital version in charity and education settings to evaluate if Digital Standing Up for Myself could be delivered as planned and how acceptable it was to group facilitators and participants. Four groups, with a total of 22 members, signed up to try Digital Standing Up for Myself. One participant dropped out before starting Standing Up for Myself, and the other 21 continued until the end of the programme. Retention and attendance were good; participants on average attended four of the five sessions. Ninety per cent of the core programme requirements were fully delivered as detailed in the Digital Standing Up for Myself manual. Problems with technology were manageable, although facilitators found using the Standing Up for Myself Wiki platform (an online platform for storage and sharing of resources) difficult, particularly when sharing video content. Facilitators felt acceptable levels of privacy were achieved and there were no reports of undue distress. All facilitators and many group members said they would recommend Digital Standing Up for Myself to others. Group members shared how the programme benefitted them, noting increased awareness about disabilities, and for some increased confidence, pride and independence. Some had learnt how to stand up for themselves and manage difficult situations and took pride in this. Completing outcome and health cost measures via web-based meetings was acceptable and data were largely fully complete and useable.


Subject(s)
Intellectual Disability , Humans , Adult , Adolescent , Feasibility Studies , Outcome Assessment, Health Care , Self Efficacy , Emotions
9.
Prev Chronic Dis ; 20: E94, 2023 Oct 26.
Article in English | MEDLINE | ID: mdl-37884318

ABSTRACT

INTRODUCTION: We examined national estimates of breast, cervical, and colorectal cancer (CRC) screening test use and compared them with Healthy People 2030 national targets. Test use in 2021 was compared with prepandemic estimates. METHODS: In 2022, we used 2021 National Health Interview Survey (NHIS) data to estimate proportions of adults up to date with US Preventive Services Task Force recommendations for breast (women aged 50-74 y), cervical (women aged 21-65 y), and CRC screening (adults aged 50-75 y) across sociodemographic and health care access variables. We compared age-standardized estimates from the 2021 and 2019 NHIS. RESULTS: Percentages of adults up to date in 2021 were 75.7% (95% CI, 74.4%-76.9%), 75.2% (95% CI, 73.9%-76.4%), and 72.2% (95% CI, 71.2%-73.2%) for breast, cervical, and CRC screening, respectively. Estimates were below 50% among those without a wellness check in 3 years (all screening types), among those without a usual source of care or insurance (aged <65 y) (breast and CRC screening), and among those residing in the US for less than 10 years (CRC screening). Percentages of adults who were up to date with breast and cervical cancer screening and colonoscopy were similar in 2019 and 2021. Fecal occult blood/fecal immunochemical test (FOBT/FIT) use was modestly higher in 2021 (P < .001). CONCLUSIONS: In 2021, approximately 1 in 4 adults of screening age were not up to date with breast, cervical, and CRC screening recommendations, and Healthy People 2030 national targets were not met. Disparities existed across several characteristics, particularly those related to health care access. Breast, cervical, and colonoscopy test use within recommended screening intervals approximated prepandemic levels. FOBT/FIT estimates were modestly higher in 2021.


Subject(s)
Colorectal Neoplasms , Uterine Cervical Neoplasms , Adult , Humans , United States , Female , Early Detection of Cancer , Uterine Cervical Neoplasms/diagnosis , Uterine Cervical Neoplasms/prevention & control , Colonoscopy , Health Services Accessibility , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/prevention & control , Occult Blood , Mass Screening
11.
JAMIA Open ; 6(3): ooad060, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37638125

ABSTRACT

As part of its data modernization initiative (DMI), the Centers for Disease Control and Prevention, Division of Cancer Prevention and Control is testing and implementing innovative solutions to improve cancer surveillance data quality and timeliness. We describe a consensus-based effort to create a framework to guide the evaluation of cancer surveillance modernization efforts by addressing specific context, processes, and costs related to cancer registration. We drew on prior theories, consulted with experts, and sought feedback from cancer registry staff. We developed the cancer surveillance systems, context, outcomes, and process evaluation (CS-SCOPE) framework to explain the ways in which cancer registry data quality, timeliness, and efficiency are impacted by external and internal contextual factors and interrelated process and content factors. The framework includes implementation measures to understand acceptability of process changes along with outcome measures to assess DMI initiation and ongoing sustainability. The framework's components and structures can be tailored for use in other DMI evaluations.

12.
J Adolesc Health ; 73(1S): S5-S14, 2023 07.
Article in English | MEDLINE | ID: mdl-37330821

ABSTRACT

PURPOSE: To create a set of criteria to assess facilitators and barriers to implementation among gender transformative interventions that target very young adolescents (VYAs) across different cultural settings. METHODS: Interventionists and researchers involved in the Global Early Adolescent Study created a Theory of Change (ToC) based on summarizing intervention components from five different gender transformative intervention curricula. Embedded within the ToC is a set of criteria labeled, 'Conditions of Success' which were developed to illustrate that change cannot happen unless interventions are implemented successfully. To test the feasibility of these criteria, implementation data collected across the five interventions in Global Early Adolescent Study were mapped onto the 'Conditions for Success' criteria and used to identify common facilitators and barriers to implementation. RESULTS: Using the 'Conditions for Success' criteria, we found that gender transformative interventions targeting VYAs were most challenged in meeting program delivery and facilitation conditions and needed to build more multisectoral support to shift rigid gender norms. Parents and caregivers also needed to be engaged in the program either as a separate target population or as codesigners and implementers for the interventions. DISCUSSION: The Conditions for Success criteria provide a useful framework for assessing facilitators and barriers to implementation among gender transformative interventions for VYAs. Additional research is underway to examine whether interventions that meet more conditions of success result in greater program impact, which will be used to further refine the overall ToC.


Subject(s)
Health Services Needs and Demand , Parents , Humans , Adolescent
13.
Med Educ ; 57(10): 980-990, 2023 10.
Article in English | MEDLINE | ID: mdl-37226410

ABSTRACT

BACKGROUND: Medical students from affluent and highly educated backgrounds remain overrepresented in Canadian medical schools despite widespread efforts to improve diversity. Little is known of the medical school experiences of students who are first in their family (FiF) to attend university. Drawing on Bourdieu and a critically reflexive lens, this study explored the experiences of FiF students in a Canadian medical school to better understand the ways in which the medical school environment can be exclusive and inequitable to underrepresented students. METHODS: We interviewed 17 medical students who self-identified as being FiF to attend university. Utilising theoretical sampling, we also interviewed five students who identified as being from medical families to test our emerging theoretical framework. Participants were asked to discuss what 'first in family' meant to them, their journey into medical school and their experiences at medical school. Bourdieu's theories and concepts were used as sensitising concepts to explore the data. RESULTS: FiF students discussed the implicit messages they received about who belongs in medical school, challenges in shifting from their pre-medical lives to a medical identity and competing with peers for residency programmes. They reflected on the advantages they perceived they had over their fellow students due to their less 'typical' social backgrounds. CONCLUSION: While medical schools continue to make strides when it comes to increasing diversity, inclusivity and equity require increased attention. Our findings highlight the ongoing need for structural and cultural change at admissions and beyond-change that recognises the much-needed presence and perspectives that underrepresented medical students, including those who are FiF, bring to medical education and healthcare. Engaging in critical reflexivity represents a key way that medical schools can continue to address issues of equity, diversity and inclusion.


Subject(s)
Education, Medical , Students, Medical , Humans , Schools, Medical , Canada , Delivery of Health Care
14.
PLoS One ; 18(5): e0284051, 2023.
Article in English | MEDLINE | ID: mdl-37167241

ABSTRACT

BACKGROUND: Cancer survival has improved for the most common cancers. However, less improvement and lower survival has been observed in some groups perhaps due to differential access to cancer care including prevention, screening, diagnosis, and treatment. METHODS: To further understand contemporary relative cancer survival (one- and five- year), we used survival data from CDC's National Program of Cancer Registries (NPCR) for cancers diagnosed during 2007-2016. We examined overall relative cancer survival by sex, race and ethnicity, age, and county-level metropolitan and non-metropolitan status. Relative cancer survival by metropolitan and non-metropolitan status was further examined by sex, race and ethnicity, age, and cancer type. RESULTS: Among persons with cancer diagnosed during 2007-2016 the overall one-year and five-year relative survival was 80.6% and 67.4%, respectively. One-year relative survival for persons living in metropolitan counties was 81.1% and 77.8% among persons living in non-metropolitan counties. We found that persons who lived in non-metropolitan counties had lower survival than those who lived in metropolitan counties, and this difference persisted across sex, race and ethnicity, age, and most cancer types. CONCLUSION: Further examination of the differences in cancer survival by cancer type or other characteristics might be helpful for identifying potential interventions, such as programs that target screening and early detection or strategies to improve access to high quality cancer treatment and follow-up care, that could improve long-term outcomes. IMPACT: This analysis provided a high-level overview of contemporary cancer survival in the United States.


Subject(s)
National Program of Cancer Registries , Neoplasms , Humans , United States/epidemiology , Rural Population , Urban Population , Neoplasms/epidemiology , Neoplasms/therapy , Centers for Disease Control and Prevention, U.S. , Registries
15.
Res Sq ; 2023 May 03.
Article in English | MEDLINE | ID: mdl-37205410

ABSTRACT

We assessed the relationship between differences in indicators of social capital before and during the COVID-19 pandemic, and their association with self-reported measures of psychological distress. The data was analyzed from an existing cluster randomized control trial (the Healthy Neighborhoods Project ) with 244 participants from New Orleans, Louisiana. Differences in self-reported scores between baseline (January 2019-March 2020) and participant's second survey (March 20, 2020, and onwards) were calculated. Logistic regression was employed to examine the association between social capital indicators and measures of psychological distress adjusting for key covariates and controlling for residential clustering effects. Participants who reported higher than average scores for social capital indicators were significantly less likely to report increases in psychosocial distress between pre and during the COVID-19 pandemic. Those who reported higher-than-average sense of community were approximately 1.2 times less likely than those who reported lower than average sense of community scores to experience increases in psychological distress before and during the global pandemic (OR = 0.79; 95% CI = 0.70,0.88, p ≤ 0.001), even after controlling for key covariates. Findings highlight the potentially important role that community social capital and related factors may play in the health of underrepresented populations during times of major stress. Specifically, the results suggest an important role of cognitive social capital and perceptions of community membership, belonging, and influence in buffering changes of mental health distress experienced during the initial period of the COVID-19 pandemic among a population that is majority Black and female.

16.
Cancer Causes Control ; 34(Suppl 1): 1-5, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37191768

ABSTRACT

The Cancer Prevention and Control Research Network (CPCRN) was established in 2002 to conduct applied research and undertake related activities to translate evidence into practice, with a special focus on the unmet needs of populations at higher risk of getting cancer and dying from it. A network of academic, public health and community partners, CPCRN is a thematic research network of the Prevention Research Centers Program at the Centers for Disease Control and Prevention (CDC). The National Cancer Institute's Division of Cancer Control and Population Sciences (DCCPS) has been a consistent collaborator. The CPCRN has fostered research on geographically dispersed populations through cross-institution partnerships across the network. Since its inception, the CPCRN has applied rigorous scientific methods to fill knowledge gaps in the application and implementation of evidence-based interventions, and it has developed a generation of leading investigators in the dissemination and implementation of effective public health practices. This article reflects on how CPCRN addressed national priorities, contributed to CDC's programs, emphasized health equity and impacted science over the past twenty years and potential future directions.


Subject(s)
Delivery of Health Care , Neoplasms , United States , Humans , Public Health , Neoplasms/prevention & control , Centers for Disease Control and Prevention, U.S.
17.
Res Dev Disabil ; 137: 104496, 2023 Jun.
Article in English | MEDLINE | ID: mdl-37094392

ABSTRACT

BACKGROUND: Our STORM intervention was developed for people (16 +) with intellectual disabilities to enhance their capacity to manage and resist stigma. The current study describes the adaptation of STORM for (synchronous) on-line delivery in the context of the Covid-19 pandemic. AIMS: To adapt the manualised face-to-face STORM group intervention for delivery via web-based meeting platforms and to conduct an initial pilot study to consider its acceptability and feasibility. METHODS AND PROCEDURES: The 5-session STORM intervention was carefully adapted for online delivery. In a pilot study with four community groups (N = 22), outcome, health economics and attendance data were collected, and fidelity of delivery assessed. Focus groups with participants, and interviews with facilitators provided data on acceptability and feasibility. OUTCOMES AND RESULTS: The intervention was adapted with minimal changes to the content required. In the pilot study, 95% of participants were retained at follow-up, 91% attended at least three of the five sessions. Outcome measure completion and fidelity were excellent, and facilitators reported implementation to be feasible. The intervention was reported to be acceptable by participants. CONCLUSIONS AND IMPLICATIONS: When provided with the necessary resources and support, people with intellectual disabilities participate actively in web-delivered group interventions.


Subject(s)
COVID-19 , Intellectual Disability , Humans , Intellectual Disability/psychology , Pilot Projects , Pandemics , Focus Groups , Feasibility Studies
20.
MDM Policy Pract ; 8(1): 23814683231153378, 2023.
Article in English | MEDLINE | ID: mdl-36798090

ABSTRACT

Background. The complexity of decision science models may prevent their use to assist in decision making. User-centered design (UCD) principles provide an opportunity to engage end users in model development and refinement, potentially reducing complexity and increasing model utilization in a practical setting. We report our experiences with UCD to develop a modeling tool for cancer control planners evaluating cancer survivorship interventions. Design. Using UCD principles (described in the article), we developed a dynamic cohort model of cancer survivorship for individuals with female breast, colorectal, lung, and prostate cancer over 10 y. Parameters were obtained from the National Program of Cancer Registries and peer-reviewed literature, with model outcomes captured in quality-adjusted life-years and net monetary benefit. Prototyping and iteration were conducted with structured focus groups involving state cancer control planners and staff from the Centers for Disease Control and Prevention and the American Public Health Association. Results. Initial feedback highlighted model complexity and unclear purpose as barriers to end user uptake. Revisions addressed complexity by simplifying model input requirements, providing clear examples of input types, and reducing complex language. Wording was added to the results page to explain the interpretation of results. After these updates, feedback demonstrated that end users more clearly understood how to use and apply the model for cancer survivorship resource allocation tasks. Conclusions. A UCD approach identified challenges faced by end users in integrating a decision aid into their workflow. This approach created collaboration between modelers and end users, tailoring revisions to meet the needs of the users. Future models developed for individuals without a decision science background could leverage UCD to ensure the model meets the needs of the intended audience. Highlights: Model complexity and unclear purpose are 2 barriers that prevent lay users from integrating decision science tools into their workflow.Modelers could integrate the user-centered design framework when developing a model for lay users to reduce complexity and ensure the model meets the needs of the users.

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