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1.
Health Psychol ; 43(6): 462-475, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38619489

ABSTRACT

OBJECTIVE: Sexual minority men experience disproportionately elevated rates of skin cancers, likely driven by excess ultraviolet radiation exposure-namely through tanning behaviors. However, limited integrated theoretical models exist to explain sexual minority men's elevated skin cancer risk. The aim of the current study is to further test and refine an integrated theory of skin cancer risk behaviors among sexual minority men by incorporating minority stress into the integrated health behavior model of tanning. METHOD: The study employed a parallel mixed methods design, with a Phase 1 qualitative stage (N = 30) and a Phase 2 quantitative stage (Model 1: N = 320; Model 2: N = 319). In both phases, participants were sexual minority men, equally stratified as those with versus without recent tanning exposure and were recruited from across the United States. RESULTS: Qualitative and quantitative data supported the overall integrated model, with some quantitative paths varying depending on the tanning behavior outcome. Overall, appearance-related motives to tan and beliefs that tanning regulates affect emerged as the most consistent proximal predictors. Minority stress significantly predicted holding more positive attitudes toward tanning as an effective affect regulation strategy. CONCLUSIONS: The results from this mixed methods study support the inclusion of minority stressors into the adapted integrative health behavior model of tanning. Replication within prospective designs would strengthen the evidence for this model, which may be helpful in guiding future skin cancer prevention programs tailored to sexual minority men. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Subject(s)
Sexual and Gender Minorities , Skin Neoplasms , Sunbathing , Humans , Male , Sexual and Gender Minorities/psychology , Skin Neoplasms/prevention & control , Adult , Sunbathing/psychology , Young Adult , Middle Aged , United States , Stress, Psychological/psychology , Risk-Taking , Adolescent
2.
AIDS Behav ; 28(3): 759-773, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37773474

ABSTRACT

Latinx men who have sex with men (MSM) are an at-risk population for new HIV diagnoses. Pre-exposure prophylaxis (PrEP) is a suite of biomedical approaches to prevent HIV infection. Latinx MSM are less likely to take PrEP compared to non-Latinx White MSM. This qualitative study identified interpersonal- and community-level barriers and facilitators of PrEP among young adult Latinx MSM. Using stratified purposeful sampling, 27 Latinx men, ages 19-29 years and living in a US-Mexico border region, completed self-report demographic surveys and participated in semi-structured in-depth interviews assessing barriers and facilitators to PrEP. Directed content analysis was used to identify both a priori and emerging themes. Most participants reported that other people, including peers, friends, partners, and health care providers were both supportive and discouraging of PrEP use. Participants' intersectional identities as members of both Latinx and LGBTQ+ (Lesbian, Gay, Bisexual, Transgender, Queer) communities both hindered and facilitated PrEP use.


Subject(s)
Anti-HIV Agents , HIV Infections , Pre-Exposure Prophylaxis , Sexual and Gender Minorities , Humans , Male , Young Adult , Anti-HIV Agents/therapeutic use , Hispanic or Latino , HIV Infections/epidemiology , HIV Infections/prevention & control , HIV Infections/drug therapy , Homosexuality, Male , Mexico/epidemiology , Qualitative Research , United States , Adult
3.
Cancer Causes Control ; 35(3): 451-463, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37843700

ABSTRACT

PURPOSE: Few efforts have been made to inform intervention design for increasing the uptake of cancer screening in individuals living with serious mental illness (ILSMI), who have lower cancer screening rates than the general population. This qualitative study explored ILSMI's and their care team member's (CTM) recommendations on the design of a breast, colorectal, and cervical cancer screening intervention for ILSMI. METHODS: Twenty-five ILSMI (mean age: 71.4 years; 60% female) and 15 CTM (mean age: 45.3 years; 80% female) were recruited through purposive sampling. Semi-structured in-depth interviews were used to collect participants' intervention suggestions. Interviews were recorded, transcribed verbatim, and imported into NVivo. Content analysis and the constant comparison method were used to analyze interview data. RESULTS: ILSMI and CTMs provided several salient recommendations. ILSMI should receive disease-specific, logistical, and screening education, and primary care staff should receive education on psychopathology. Mental health providers and patient navigators should be considered as the primary interventionist. The intervention should be delivered where ILSMI receive medical or mental health services, receive community and government services, and/or via various digital media. The intervention should improve the collaboration, communication, and coordination between primary and mental health care. Findings also pointed to the implementation of trauma-informed cancer care and integrated care models comprising mental health care and primary cancer care. CONCLUSION: These findings bring the skills, knowledge, and expertise of ILSM and their care team to intervention design for increasing colorectal, breast, and cervical cancer screening in ILSMI attending an intensive outpatient program.


Subject(s)
Colorectal Neoplasms , Mental Disorders , Uterine Cervical Neoplasms , Humans , Female , Aged , Middle Aged , Male , Uterine Cervical Neoplasms/diagnosis , Early Detection of Cancer , Mental Disorders/diagnosis , Mental Disorders/epidemiology , Mental Disorders/psychology , Internet , Colorectal Neoplasms/diagnosis
5.
J Pain ; 24(8): 1434-1448, 2023 08.
Article in English | MEDLINE | ID: mdl-37031898

ABSTRACT

The 20-item Pain Anxiety Symptom Scale (PASS-20) was adapted for Spanish-speaking Mexican Americans who report chronic pain (SSMACP). The instrument measures pain-related anxiety with fear, physiological, avoidance/escape, and cognitive anxiety as subtypes. In SSMACP, the Spanish PASS-20's psychometric properties were evaluated while exploring relationships between pain-related anxiety with other variables. Using convenience sampling, 188 SSMACP (women = 108, men = 77; mean age = 37.20 years, standard deviation = 9.87) were recruited across the United States. Confirmatory factor analyses examined the structural validity of the hierarchical factor structure. Hierarchical multiple regression examined incremental validity. Correlational analyses examined convergent validity. Cronbach's coefficient alphas and McDonald's omegas examined internal consistency. Pearson's r, t-tests, and analysis of variance tests examined relationships between demographic variables and PASS-20 scores. Confirmatory factor analyses supported the hierarchical factor structure (root mean square error of approximation = .061, standardized root mean residual = .038, comparative fit index = .940). Total and subscale PASS-20 scores had acceptable convergent validity and internal consistency (range = .75-.93). Hierarchical multiple regression found that total and subscale PASS-20 scores have adequate incremental validity, considering that they contributed uniquely to the prediction of generalized anxiety scores above and beyond other pain-related scores. Demographic variables were significantly related to total and subscale PASS-20 scores. Evidence supports the use of Spanish total and subscale PASS-20 scores in SSMACP. Exploratory evidence also informed on the possible consequences and predictors of their pain-related anxiety. The results also encourage pain research in specific populations from Latin America (eg, Mexican Americans). PERSPECTIVE: The Spanish PASS-20 has adequate psychometric properties in SSMACP. This instrument can help catalyze pain research in SSMACP by informing on their pain-related anxiety and by helping evaluate other pain-related instruments. Evidence also informed on pain-related anxiety in SSMACP.


Subject(s)
Chronic Pain , Male , Humans , Female , Adult , Chronic Pain/diagnosis , Chronic Pain/psychology , Mexican Americans , Psychometrics/methods , Surveys and Questionnaires , Anxiety/diagnosis , Anxiety/etiology , Anxiety/psychology , Reproducibility of Results
6.
Article in English | MEDLINE | ID: mdl-36554864

ABSTRACT

Funded by the National Institutes of Health (NIH), the Research Centers in Minority Institutions (RCMI) Program fosters the development and implementation of innovative research aimed at improving minority health and reducing or eliminating health disparities. Currently, there are 21 RCMI Specialized (U54) Centers that share the same framework, comprising four required core components, namely the Administrative, Research Infrastructure, Investigator Development, and Community Engagement Cores. The Research Infrastructure Core (RIC) is fundamentally important for biomedical and health disparities research as a critical function domain. This paper aims to assess the research resources and services provided and evaluate the best practices in research resources management and networking across the RCMI Consortium. We conducted a REDCap-based survey and collected responses from 57 RIC Directors and Co-Directors from 98 core leaders. Our findings indicated that the RIC facilities across the 21 RCMI Centers provide access to major research equipment and are managed by experienced faculty and staff who provide expert consultative and technical services. However, several impediments to RIC facilities operation and management have been identified, and these are currently being addressed through implementation of cost-effective strategies and best practices of laboratory management and operation.


Subject(s)
Biomedical Research , United States , Humans , Minority Groups , National Institutes of Health (U.S.) , Minority Health , Research Personnel
7.
Support Care Cancer ; 30(12): 10263-10272, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36207640

ABSTRACT

Patient navigation is increasingly common in cancer care. While navigation programs often involve informal family caregivers, few navigation interventions specifically target the family caregiver. We developed the eSNAP and Caregiver Navigator Intervention to help cancer family caregivers identify and capitalize on informal and formal social support resources. While the skill set for patient navigators may be adequate for supporting caregivers, other skills and areas of knowledge expertise are needed. In addition, sparse documentation of navigator training best practices creates further challenges for dissemination and implementation. Our goal is to describe the education and training of cancer caregiver navigators within key competencies used to prepare and support navigators to deliver our manualized intervention. Nationally recognized navigation competencies, related to developing a sensitivity to ethical, cultural, and professional issues, knowledge development, skills development, and practice-based learning, were identified and adapted. Performance goals were identified within each competency. Training activities were selected to support competency development. Based on adult learning theories, we emphasize multiple learning strategies, including experiential learning and critical reflection. Two caregiver navigators engaged in initial training between December, 2019 and February, 2020. Initial training was supervised by study leadership, who coordinated with experts and stakeholders. Navigators completed initial training. We describe lessons learned. To ensure that navigators are well-equipped to provide effective services, evidence-based training programs that include navigation and protocol-specific competencies are needed. Given the lack of detailed training programs in the literature, we created a flexible, multimodal learning approach that other teams may adopt.


Subject(s)
Neoplasms , Patient Navigation , Adult , Humans , Caregivers , Neoplasms/therapy , Social Support
8.
Article in English | MEDLINE | ID: mdl-36294109

ABSTRACT

With ten percent of the world's children living with Human Immunodeficiency Virus (HIV/ AIDS) in India, achieving elimination of parent/mother to-child transmission (EPTCT/EMTCT) is far away. Timely initiation and optimal adherence to the prevention of parent/mother to child transmission (PPTCT/PMTCT) may reduce new paediatric HIV infections to zero. This qualitative study applies the Socio-ecological Model (SEM) to understand country, region and context-specific factors influencing mothers' engagement in the PMTCT care continuum. Maximum variation sampling and saturation tenets determined the sample size. An in-depth interview guide based on SEM "a priori" and emerging themes captured narratives of the parental dyad. The translated and transcribed audio records were coded by direct content analysis method, both manually and with Atlas Ti software. The coding reports were discussed for consensus and final analysis. Male partner, peers, community health workers (CHWs), hope for healthy baby, knowledge about HIV and preventive services, free anti-retroviral therapy, transportation and the early infant diagnosis (EID) tool influenced PMTCT care continuum. Testing and referral policies of the private sector facilitated internalized or self-stigma. Future interventions should seek to develop pregnant women's support system by engaging male partners, peers, and CHWs. Strategies addressing private sector and community awareness about freely available HIV prevention and care programs may enable optimal PMTCT utilization.


Subject(s)
HIV Infections , Pregnancy Complications, Infectious , Humans , Infant , Female , Male , Pregnancy , Infectious Disease Transmission, Vertical/prevention & control , HIV Infections/drug therapy , HIV Infections/prevention & control , Pregnancy Complications, Infectious/drug therapy , Pregnancy Complications, Infectious/prevention & control , Social Stigma , Mothers , Continuity of Patient Care
9.
Cancer ; 128 Suppl 13: 2568-2577, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35699612

ABSTRACT

BACKGROUND: Patient navigation improves cancer care delivery for those most at risk for poor outcomes. Lack of sustainable funding threatens the full integration of navigation services into health care delivery systems. Standardized navigation metrics that document impact and identify best practices are necessary to support sustainability. METHODS: The National Navigation Roundtable administered a web-based, cross-sectional survey to oncology patient navigation programs to identify barriers and facilitators to the use of navigation metrics. The 38-item survey asked about data-collection practices and specific navigation metrics used by the program. Exploratory and descriptive statistics were used to identify factors associated with data collection and reporting. RESULTS: Seven hundred fifty respondents from across the country represented navigation programs across the continuum of care. Although 538 respondents (72%) reported participating in routine data collection, only one-half of them used data for reporting purposes. For the 374 programs that used electronic health records, only 40% had discrete, reportable navigation fields, and 25% had an identifier for navigated patients. Program funding was identified as the only characteristic associated with data collection, whereas the type of data collected was associated with work setting, participation in alternative payment models, and where on the continuum navigation services are provided. Respondents participating in an oncology accreditation program were more likely to collect specific outcome metrics across the continuum and to use those data for reporting purposes. The most common barriers to data collection were time (55%) and lack of support for complex data systems and/or platforms (50%). CONCLUSIONS: Inconsistent data collection and reporting of oncology navigation programs remain a threat to sustainability. Aligning data collection with oncology accreditation, funding, and reimbursement is a viable path forward.


Subject(s)
Neoplasms , Patient Navigation , Cross-Sectional Studies , Delivery of Health Care , Humans , Medical Oncology , Neoplasms/therapy , Patient Navigation/methods
10.
Cancer ; 128 Suppl 13: 2590-2600, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35699613

ABSTRACT

BACKGROUND: In the current nationwide study, the authors used latent class analysis (LCA) to identify classes of cancer patient navigators (CPNs) and examined whether class membership and 12 indicators were related to navigator role retention. METHODS: By using data from 460 CPNs in the United States, LCA identified classes (ie, homogenous subgroups) of CPNs with the following indicators: type of CPN (clinical vs nonclinical), education level, area(s) of the cancer care continuum in which the CPN provided patient navigation, region and urbanity where the CPN provided services, organizational work setting, and patient navigation program funding source. The associations of navigator retention with class membership and each indicator were examined using χ2 tests. RESULTS: LCA identified 3 classes of CPNs. Classes 1 and 3 were conceptualized as distinct, homogeneous subgroups of clinical CPNs that appeared to differ mainly on their likelihood of engagement in outreach, survivorship, palliative care, and end-of-life patient navigation. Class 2 was conceptualized as a nonclinical CPN subgroup that was distinct primarily based on their high endorsement of employment in programs, which are at least partially funded by grants and engagement in earlier stages of patient navigation (eg, early detection). The provision of survivorship and treatment patient navigation was related to navigator role retention, with senior CPNs providing these patient navigation services more than novice CPNs. CONCLUSIONS: The current study highlights 3 distinct classes of CPNs, provides initial information regarding determinants of navigator retention, and makes several recommendations for future patient navigation research.


Subject(s)
Neoplasms , Patient Navigation , Continuity of Patient Care , Humans , Neoplasms/therapy , Palliative Care , United States
11.
Cancer ; 128 Suppl 13: 2601-2609, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35699618

ABSTRACT

BACKGROUND: A nationwide survey was conducted to examine differences between clinical and nonclinical oncology navigators in their service provision, engagement in the cancer care continuum, personal characteristics, and program characteristics. METHODS: Using convenience sampling, 527 oncology navigators participated and completed an online survey. Descriptive statistics, χ2 statistics, and t tests were used to compare nonclinical (eg, community health worker) and clinical (eg, nurse navigators) navigators on the provision of various navigation services, personal characteristics, engagement in the cancer care continuum, and program characteristics. RESULTS: Most participants were clinical navigators (76.1%). Compared to nonclinical navigators, clinical navigators were more likely to have a bachelor's degree or higher (88.6% vs 69.6%, P < .001), be funded by operational budgets (84.4% vs 35.7%, P < .001), and less likely to work at a community-based organization or nonprofit (2.0% vs 36.5%, P < .001). Clinical navigators were more likely to perform basic navigation (P < .001), care coordination (P < .001), treatment support (P < .001), and clinical trial/peer support (P = .005). Clinical navigators were more likely to engage in treatment (P < .001), end-of-life (P < .001), and palliative care (P = .001) navigation. CONCLUSIONS: There is growing indication that clinical and nonclinical oncology navigators perform different functions and work in different settings. Nonclinical navigators may be more likely to face job insecurity because they work in nonprofit organizations and are primarily funded by grants.


Subject(s)
Neoplasms , Patient Navigation , Continuity of Patient Care , Humans , Medical Oncology , Neoplasms/epidemiology , Neoplasms/therapy , Surveys and Questionnaires , United States/epidemiology
12.
Support Care Cancer ; 30(6): 5361-5370, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35290512

ABSTRACT

Informal caregivers are key to oncology care, but often have unmet needs, leading to poor psychological and physical health outcomes. Comprehensive, proactive caregiver support programs are needed. We describe the development of a support intervention for caregivers of persons with brain tumors. The intervention uses a caregiver navigator to help participants identify and capitalize on existing social support resources captured using a web-based tool (eSNAP) and connects participants to existing formal services. We describe the iterative development process of the manualized intervention with particular focus on the caregiver navigator sessions. The process included review of the literature and published patient navigation programs, expert and stakeholder review, and study team member review. Quantitative and qualitative data were captured from the first 15 participants randomized to receive the intervention, enrolled from February 2020 to December 2020. Four participants dropped from the study, 9 completed at least 7 modules, and 8 participants completed all 8. Quantitative and qualitative data were collected primarily from those who completed the intervention; data suggest caregivers were satisfied with the intervention and found it helpful. Our intervention is one of the first theory-based caregiver support interventions to include caregiver navigation in neuro-oncology. We use best-practice guidelines for design, including extensive stakeholder feedback. COVID-19 may have impacted recruitment and participation, but some preliminary data suggest that those able to engage with the intervention find it helpful. Data collection is ongoing in a larger trial. If effective, caregiver navigation could be a model for future interventions to ensure caregiver support.


Subject(s)
COVID-19 , Caregivers , Caregivers/psychology , Humans , Longitudinal Studies , Medical Oncology , Social Support
13.
Support Care Cancer ; 30(1): 105-116, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34231040

ABSTRACT

PURPOSE: Breast cancer survivors (BrCS) experience many psychosocial difficulties following treatment, leading to an increased risk of psychological distress compared to the general population. This is especially true for underserved BrCS whose unmet supportive care needs can result in worse physical and mental health outcomes. This qualitative study compared healthcare and support providers' perceptions of BrCS' needs to survivors' perceptions of their own needs. METHODS: Semi-structured in-depth interviews were conducted with 25 underserved BrCS and 20 cancer survivorship stakeholders identified using purposeful sampling. Using the constant comparison method and content analysis, data were analyzed via an iterative process of coding and discussion. Data were summarized according to three intermediate and proximal themes mentioned by both stakeholders and survivors: (1) psychosocial needs of cancer survivors, (2) support, and (3) benefit finding/positive feelings about cancer. Demographic data were analyzed by calculating descriptive statistics. RESULTS: There was consistency in providers' and survivors' perceptions of post-treatment mood changes, financial burden, familial stress, and physical changes. Providers and survivors differed in perceptions of BrCS' preferred sources of care and support, effects of cancer treatment on body image, the effects of fear of cancer recurrence on follow-up care, and benefit finding. CONCLUSIONS: This study provides valuable insight into areas in which healthcare and support providers' perceptions may differ from underserved BrCS' lived experiences. Results from this study can be used to develop interventions and inform healthcare and support providers on how to provide high-quality care to underserved BrCS.


Subject(s)
Breast Neoplasms , Cancer Survivors , Anxiety , Breast Neoplasms/therapy , Female , Humans , Neoplasm Recurrence, Local , Survivors
14.
J Cancer Educ ; 37(6): 1645-1653, 2022 12.
Article in English | MEDLINE | ID: mdl-33893616

ABSTRACT

Latinos in the United States have low rates of colorectal cancer (CRC) screening even though CRC is the third leading cause of cancer death among Latinos. This qualitative study aimed to understand and compare the perspectives of clinical staff (CS) and Latino community members (LCMs) in an urban Southern California community regarding barriers and facilitators of CRC screening. Through purposive sampling, 39 LCMs (mean age: 59.4 years, 79.5% female) were recruited to participate in one of five focus groups, and 17 CS (mean age: 38.8 years, 64.7% female) were recruited to participate in semi-structured in-depth interviews, along with a demographic survey. Interviews and focus group recordings were transcribed verbatim, translated, and analyzed using direct content analysis. Demographic data were summarized using descriptive statistics. Findings suggest that CS and LCMs have both similar and opposing perspectives with regard to barriers and facilitators of CRC screening. Themes discussed included attitudes towards CRC screening, CRC knowledge, access to resources, commitments and responsibilities, social support, vicarious learning, patient-provider communication, trust, and social relationships. Study findings can be used to guide interventions and policies to improve access to CRC screening among LCMs.


Subject(s)
Colorectal Neoplasms , Early Detection of Cancer , Female , Humans , United States , Middle Aged , Adult , Male , Patient Acceptance of Health Care , Health Knowledge, Attitudes, Practice , Hispanic or Latino , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/prevention & control , Mass Screening
15.
Article in English | MEDLINE | ID: mdl-34505062

ABSTRACT

Long-term endocrine therapy (e.g. Tamoxifen, aromatase inhibitors) is crucial to prevent breast cancer recurrence, yet rates of adherence to these medications are low. To develop, evaluate, and sustain future interventions, individual-level modeling can be used to understand breast cancer survivors' behavioral mechanisms of medication-taking. This paper presents interdisciplinary research, wherein a model employing randomized neural networks was developed to predict breast cancer survivors' daily medication-taking behavior based on their survey data over three time periods (baseline, 4 months, 8 months). The neural network structure was guided by random utility theory developed in psychology and behavioral economics. Comparative analysis indicates that the proposed model outperforms existing computational models in terms of prediction accuracy under conditions of randomness.

16.
BMJ Open ; 11(5): e040955, 2021 05 26.
Article in English | MEDLINE | ID: mdl-34039570

ABSTRACT

INTRODUCTION: Men who have sex with men (MSM) are one of the most at-risk group for contracting HIV in the USA. However, the HIV epidemic impacts some groups of MSM disproportionately. Latino MSM comprise 25.1% of new HIV infections among MSM between the ages of 13 and 29 years. The daily medication tenofovir/emtricitabine was approved by the Food and Drug Administration for pre-exposure prophylaxis (PrEP) in 2012 and has demonstrated strong efficacy in reducing HIV acquisition. METHODS AND ANALYSIS: Through extensive formative research, this study uses a pilot randomised controlled trial design and will examine the feasibility and acceptability of a patient navigation intervention designed to address multiple barriers to improve engagement in the PrEP continuum among 60 Latino MSM between the ages of 18 and 29 years. The patient navigation intervention will be compared with usual care plus written information to evaluate the feasibility and acceptability of the intervention and study methods and the intervention's potential in improving PrEP continuum behaviours. The results will be reviewed for preparation for a future full-scale efficacy trial. ETHICS AND DISSEMINATION: This study was approved by the institutional review board at San Diego State University and is registered at ClinicalTrials.gov. The intervention development process, plan and the results of this study will be shared through peer-reviewed journal publications, conference presentations and healthcare system and community presentations. REGISTRATION DETAILS: Registered under the National Institutes of Health's ClinicalTrials.gov (NCT04048382) on 7 August 2019 and approved by the San Diego State University (HS-2017-0187) institutional review board. This study began on 5 August 2019 and is estimated to continue through 31 March 2021. The clinical trial is in the pre-results stage.


Subject(s)
Anti-HIV Agents , HIV Infections , Patient Navigation , Pre-Exposure Prophylaxis , Sexual and Gender Minorities , Adolescent , Adult , Anti-HIV Agents/therapeutic use , HIV Infections/drug therapy , HIV Infections/prevention & control , Hispanic or Latino , Homosexuality, Male , Humans , Male , Pilot Projects , Randomized Controlled Trials as Topic , Young Adult
17.
BMC Health Serv Res ; 21(1): 360, 2021 Apr 17.
Article in English | MEDLINE | ID: mdl-33865382

ABSTRACT

BACKGROUND: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. METHODS: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. DISCUSSION: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. TRIAL REGISTRATION: clinicaltrials.gov , Registration number: NCT04268979 ; Date of registration: February 10, 2020, retrospectively registered.


Subject(s)
Brain Neoplasms , Caregivers , Brain Neoplasms/therapy , Humans , Prospective Studies , Quality of Life , Social Support
18.
Prev Med ; 146: 106464, 2021 05.
Article in English | MEDLINE | ID: mdl-33636194

ABSTRACT

The COVID-19 pandemic has resulted in substantial morbidity and mortality and challenged public health agencies and healthcare systems worldwide. In the U.S., physical distancing orders and other restrictions have had severe economic and societal consequences. Populations already vulnerable in the United States have experienced worse COVID-19 health outcomes. The World Health Organization has made recommendations to engage at risk populations and communicate accurate information about risk and prevention; to conduct contract tracing; and to support those affected by COVID-19. This Commentary highlights the ways in which an existing and cost-effective, but underutilized workforce, community health workers and non-clinical patient navigators, should be deployed to address the COVID-19 pandemic. Community health workers and non-clinical patient navigators have skills in community engagement and health communication and are able to gain the trust of vulnerable communities. Furthermore, many community health workers and non-clinical patient navigators have skills in assisting community members with meeting basic needs and with navigating public health and healthcare systems. Members of this workforce are more than prepared to conduct contact tracing. State, local, tribal, and territorial public health agencies and healthcare systems should be collaborating with national, state, and local organizations that represent and employ CHWs/non-clinical patient navigators to determine how to better mobilize this workforce to address the COVID-19 pandemic. Furthermore, Congress, the Centers for Medicare & Medicaid Services (CMS), and individual states need to adopt policies to sustainably fund their critically needed services in the long term.


Subject(s)
COVID-19/therapy , Community Health Workers/organization & administration , Health Workforce/organization & administration , Patient Navigation/organization & administration , COVID-19/diagnosis , COVID-19/epidemiology , Humans
19.
Ethn Health ; 26(3): 319-336, 2021 04.
Article in English | MEDLINE | ID: mdl-30260243

ABSTRACT

Background: HPV vaccination is the primary prevention method for HPV-related cancers, although among Hispanic populations, migrant farmworkers may experience exacerbated challenges to HPV vaccination due to intersecting political, social, and personal contexts. This study explored multi-level determinants of HPV vaccination among Hispanic migrant farmworker families.Methods: Using a community-engaged approach and guided by the socio-ecological model, Intervention Mapping, and PRECEDE-PROCEED constructs, we recruited parents who had a daughter and/or son age 9-15 years from a rural, faith-based, community organization in Florida. Three focus groups (n = 13) were conducted in Spanish and constant comparison methods were used to analyze qualitative data.Results: Micro-level determinants included moderate HPV vaccine knowledge, desire for more HPV vaccine information, concerns about HPV vaccine completion, health/preventive motivations, past experiences with the healthcare system, and parental gender roles related to health care. Macro-level determinants included facilitators (e.g. transportation services, clinics open after work hours, governmental programs) and barriers (e.g. supervisor/employment inflexibility, long clinic wait times) to accessing health care and vaccination in general (including HPV vaccination). Participants shared their preferences for future interventions that would meet the needs of this community, and discussed potential content and mechanisms for receiving HPV information, as well as what might facilitate their overall access, uptake, and completion of the HPV vaccine series.Discussion: Determinants to HPV vaccination emerged and underscore the importance of addressing the multi-level factors when designing and delivering an HPV vaccine intervention for this Hispanic migrant farmworker population. Improving HPV vaccination rates requires responding to situational and structural hardships that disproportionately impact this group. Thus, community-tailored and culturally appropriate multi-level interventions are needed, while emphasizing existing knowledge assets and preferences favorable towards HPV vaccination, with the ultimate goal of the decreasing HPV-related disparities. Findings suggest interventions must reach beyond the individual level to account for this unique population's lived experiences.


Subject(s)
Papillomavirus Infections , Papillomavirus Vaccines , Adolescent , Child , Community Participation , Farmers , Florida , Health Knowledge, Attitudes, Practice , Hispanic or Latino , Humans , Papillomavirus Infections/prevention & control , Patient Acceptance of Health Care , Stakeholder Participation , Vaccination
20.
J Health Psychol ; 26(11): 2062-2068, 2021 09.
Article in English | MEDLINE | ID: mdl-31749376

ABSTRACT

While social media has the ability to quickly disseminate information and reach large audiences, cancer blogs as a communication platform have not yet been well studied. A social network analysis was conducted on 89 active cancer blogs. Results demonstrated the overall cancer-blog-network was widely distributed and decentralized, with blogs clustered by cancer type, and that breast cancer blogs were the most significant and highly linked blogs. Efforts to disseminate cancer-related information may focus on identifying key breast cancer bloggers or linking key bloggers of various cancers to create a more interconnected network and expand its reach within this online community.


Subject(s)
Breast Neoplasms , Social Media , Blogging , Communication , Female , Humans , Social Networking
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