Showing papers by "Joan R. Bloom published in 2015"

Developing a Culturally Competent Faith-Based Framework to Promote Breast Cancer Screening Among Afghan Immigrant Women

Abstract: For the tens of thousands of Afghan immigrant women currently living in the USA, religious and cultural beliefs can act as a barrier to health care access. Islamic frameworks and men's gatekeeping roles often control women's decision-making power about their health care needs. Gatekeepers, however, can be reconceived as facilitators empowered to protect the well-being of the family, and positive messages within Islam can foster collaborative investment in women's health. Drawing upon a pilot study utilizing community-based participatory research involving the largest Afghan community in the USA, this paper documents the need for culturally sensitive faith-based education to promote breast cancer screening among this growing population.

Managing psychosocial issues faced by young women with breast cancer at the time of diagnosis and during active treatment

Abstract: Purpose of review This review examines recent literature on the psychosocial needs of and interventions for young women. We focus on the active treatment period given the toxicity of treatment, the incidence of anxiety, and depressive symptoms in these women during treatment. This review summarizes research relevant to addressing their social and emotional concerns. Recent findings Young women undergoing treatment for breast cancer remain understudied despite unique needs. Psychoeducational interventions help to relieve symptoms and emotional distress during treatment, but effects do not appear to persist over the longer term. In the clinical context, the performance of prognostic-risk prediction models in this population is poor. Surgical decision-making is often driven by fear of recurrence and body image rather than prognosis, and decision aids may help young women to synthesize information to preserve their role in the treatment process. Summary First, shared decision-making, second, balancing body image, fear of recurrence, and recommended treatment, and third, palliative care for metastasis are essential research priorities for the clinical setting. In the larger social context, unique family/partner dynamics as well as financial and insurance concerns warrant particular attention in this population.

Targeting and Tailoring Health Communications in Breast Screening Interventions.

Abstract: Background: Members of underrepresented minority (URM) groups are at higher risk of disproportionately experiencing greater breast cancer-related morbidity and mortality and thus, require effective interventions that both appropriately target and tailor to their unique characteristics Objectives: We sought to describe the targeting and tailoring practices used in the development and dissemination of three breast cancer screening interventions among URM groups Methods: Three national Community Network Programs (CNPs) funded by the National Cancer Institute have focused on breast cancer screening interventions as their major research intervention Each targeted different populations and used participatory research methods to design their intervention tailored to the needs of their respective audience The Alameda County Network Program (ACNP) to Reduce Cancer Disparities partnered with community members to design and conduct 2-hour “Tea Party” education sessions for Afghan women The Kansas Community Cancer Disparities Network co-developed and deployed with community members a computerized Healthy Living Kansas (HLK) Breast Health program for rural Latina and American Indian women The Johns Hopkins Center to Reduce Cancer Disparities employed a train-the-trainer COACH approach to educate urban African-American women about breast cancer Conclusions: Each CNP program targeted diverse URM women and, using participatory approaches, tailored a range of interventions to promote breast cancer screening Although all projects shared the same goal outcome, each program tailored their varying interventions to match the target community needs, demonstrating the importance and value of these strategies in reducing breast cancer disparities

Community-Based Participatory Research Adds Value to the National Cancer Institute's Research Portfolio

Abstract: Community-based participatory research (CBPR) is the core research approach used by all 23 Community Network Program Centers (CNPCs), funded from 2010 to 2015 and charged by the National Cancer Institute to reduce cancer health disparities in racial/ethnic minority and medically underserved communities across the United States. Sixteen of these CNPCs were funded under a similar initiative, called the Community Networks Program (CNP), from 2005 to 2010. All of the centers provided data, and 22 collaborated on the writing of the nine papers presented in this special issue. Communities engaged through the CNP and CNPC initiatives often experience limited access to cancer knowledge, screening, and treatment owing to a myriad of factors, including geographic isolation, low socioeconomic status, lack of insurance, immigration status, limited English language skills, low literacy, and discrimination.1–8 For example, the Miami CNPC works in Haitian and Cuban immigrant communities where less than 45% of women have health insurance,9 and upwards of 30% of residents of the communities engaged with the Deep South CNPC live in poverty.10 These conditions contribute to stress, which further jeopardizes health through direct and indirect pathways, as illustrated in examples from CNPCs in South Carolina, Washington State, and Hawai‘i.11 CBPR-based approaches foster trustworthiness between high-risk communities and academic partners, especially when the population has experienced a history of discrimination and negative interactions with health care providers and researchers.12–14 Most important, CBPR approaches bring to light community strengths and insights that can help to accelerate improvements in health. CBPR, which emerged from social justice and action research traditions,15–19 entails extensive sustained processes of community engagement. As such it is more likely than other research approaches to benefit communities directly, largely because CBPR seeks engagement to identify relevant research questions, design feasible studies, and interpret and disseminate data, while building leadership capacity and research resources in the community. It is acknowledged widely that CBPR provides an ethical and moral alternative to the “top-down” research approach typically seen in biomedicine. However, as noted by Hebert et al in this issue,20 it also has the potential to reduce the risk of type III errors.15,19 These include drawing incorrect inferences from a faulty conception of how things work or selecting and/or implementing a study design that produces an answer (even if correct) to the wrong question.21 In other words, CBPR strategies offer great promise for addressing cancer-related health disparities in communities because they increase the 1) relevance of research questions, 2) fit of interventions for the community of interest, and 3) recruitment and retention of diverse participants, leading to materially superior scientific outcomes.15,18,22–24 CBPR approaches can lead to formulating high-value research questions by engaging the community in defining and explaining the research problem or health concern. In short, research questions begin to take on new meaning and new excitement because unique and varied perspectives inform the ways that studies take shape. As the reports presented in this special issue indicate, community involvement across the research continuum facilitates greater specificity of research questions asked, and improved strategies to collect, analyze, and disseminate study data. Papers by Arevalo, Seay, Shirazi, and Hebert and their colleagues in this issue9,11,13,14 describe the benefit of community collaboration for identifying risk conditions associated with health disparities, as well as improving saliency of intervention design and delivery. Moreover, when community members take part in the research process and participate in studies on topics that they find interesting and important, recruitment and retention rates are higher than the norm for racial/ethnic minority involvement in research.25 Still, the long-term sustainability of CBPR initiatives is not without difficulties. Partridge and co-authors10 provide an example of challenges encountered in Deep South CNPC communities when the CNPC demanded greater emphasis on controlled intervention trials, a position that departed from the expectation of the communities, which had become comfortable with CNP approaches that emphasized outreach, education, and pilot studies to reduce disparities. CNPCs also were charged with identifying, training, and mentoring CBPR researchers. Felder and colleagues26 describe the cohort of CBPR researchers and mentors associated with the CNPCs. Perhaps not unexpectedly, almost 80% of mentors were non-Hispanic White, and almost one-half were male.26 However, less than 40% of early-stage/mid-career investigators and student trainees were non-Hispanic Whites, and 80% were female. Thus, the CNPCs are responsive to the federal call for increasing diversity of the scientific workforce.27 This group of younger scientists is the future generation of researchers we need to equip to use CBPR approaches to confront and eventually triumph over the cancer-related health disparities seen in the United States. Yet, only 37% of trainees felt they were thriving in the academic environment. Although more research needs to be done to elucidate reasons for this finding among CNPC trainees, other studies suggests that academia needs to more fully recognize and reward researchers engaged in CBPR. Two articles in this special issue focus on evaluating the effectiveness of CBPR for conducting cancer disparities research.28,29 A qualitative analysis of the CNP final reports provides evidence of the potential of CBPR in knowledge and intervention development, improving research methods and, of even more importance to researchers, the buy-in of communities resulting in increased participation and retention.29 Controlled studies of interventions often use delayed control groups so that no one is denied the opportunity to participate. Methods developed by Arroyo-Johnson and associates28 focuses on individual projects within these programs.28 Their experience suggests some of the challenges of operationalizing specific concepts. For example, sharing of “power, influence, and resources” can be viewed from the interpersonal level or from the locus of budgetary control. Our work is conducted against the backdrop of two concerns expressed by the National Institutes of Health in general, and the National Cancer Institute in particular. First, there is well-placed apprehension regarding the general inability or reluctance to translate existing knowledge to places of real public health relevance and clinical need. This generalized angst about translation is warranted and is especially acute in high-risk populations such as those represented in the CNPCs.30,31 Second, there has been a general failure to reduce disparities in cancer-related behaviors.32 Cancer incidence and mortality rates33,34 have been refractory to efforts that have been used successfully in European-American populations around the country (i.e., disparities in some of our populations have actually gotten worse relative to Whites over the past several decades33,34). Clearly, both of these concerns are well-substantiated by the data and, indeed, they are related. Biomedical research has often favored working with groups that are more accessible and familiar to researchers, and these populations are predominantly White and affluent. Working solely with these groups may lead to erroneous conclusions because of exposure differences between these easier-to-get-at populations and their high-risk counterparts.35 These problems also are reflected in available statistics, such as lagging accrual of minorities into clinical trials.25 Because research is often designed with this intrinsic bias that results in high rates of type III error, internal validity is severely compromised. Clearly, we cannot expect to have good external validity (on which translation depends) without “getting it right” in the first place. All competent research, including CBPR, is designed and conducted to answer important questions about disease causation, establish the magnitude of the effect of one or more risk factors on health-related outcomes, or test an intervention, or some combination of these. As the articles that comprise this special issue of Progress in Community Health Partnerships show, the activities of the CNPCs reflect and demand a commitment to work in partnership with communities and to collaborate in a spirit that honors meaningful engagement and capacity building for impacting health disparities.36,37

The Missing Piece: Cancer Prevention Within Psycho-Oncology - A Commentary

Abstract: In this commentary, we review the place of prevention within the field of Psycho-Oncology. The thrust of Psycho-Oncology's clinical and research efforts have historically focused on behavioral and social factors implicated in the cancer patients' experience from detection and diagnosis, to treatment, survivorship and end of life along the cancer trajectory. This conceptualization has raised the standards for research, leading to a better understanding of the patient experience and the delivery of highly effective interventions to improve quality of life. Emerging data on the role of potential prevention behaviors (e.g., diet and exercise, smoking cessation, screening, etc.) suggests that Psycho-Oncology has a significant role to play in understanding and intervening on a population level to reduce cancer incidence. We present and describe an expanded model of research in Psycho-Oncology which incorporates psychosocial variables in prevention research to complement Holland et al.'s (1998, 2010) original model. The implications of this model are discussed in relation to research, clinical work and training within the discipline of Psycho-Oncology. Copyright © 2015 John Wiley & Sons, Ltd.

Egalitarianism in healthcare - pros and cons; the imperative for innovative lens in western balkans

Abstract: Thematic “public versus private healthcare” has arisen thousands of lively debates through decades and has provoked reactions from academics each arguing for his own viewpoint, yet, in the light of actual healthcare reforms across systems, giving a second thought of “how and where to allocate resources” it is not a waste of time. As to the Western Balkan countries context, the eagerness to catch up with the free market system has been quite an appealing model (due to the historical-political common frame), and turning back to the one tier system would seem like turning back old times. In this viewpoint we strive to outlook and give a panorama of pros and cons of egalitarian-one tier system versus multiple tier system approach; going beyond the efficiency and pragmatist solutions, what does the literature suggest about egalitarianism in the modern society? We opt also to present the of Private-Public Partnership concept (new experiences) as a less discussed trend in these countries. Keywords: Egalitarianism, healthcare, Eastern Europe, Public Private Partnership Normal 0 21 false false false RO X-NONE X-NONE /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin-top:0cm; mso-para-margin-right:0cm; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0cm; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman"; mso-bidi-theme-font:minor-bidi; mso-fareast-language:EN-US;}