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Barriers and opportunities for breast cancer organizations to focus on environmental health and disease prevention: a mixed-methods approach using website analyses, interviews, and focus groups.

ABSTRACT: BACKGROUND:Breast cancer is the most commonly diagnosed cancer among women worldwide and most cases are not due to high risk inherited genes. In response, breast cancer activists successfully advocated for innovative research on environmental chemical exposures as a possible cause. Since then, new evidence supports hypotheses that common industrial and consumer chemicals are linked to the disease, and expert panels recommend reducing exposures. We evaluated whether these research results and recommendations are translated back into the work of breast cancer organizations and what barriers and opportunities influence their ability to focus on environmental factors. METHODS:We used a Python script to evaluate the frequency of environmental terms on the websites of 81 breast cancer organizations (>?14,000 associated URLs) and conducted two focus groups and 20 interviews with leaders of breast cancer organizations. We also analyzed the frequency of terms on two trusted, national cancer websites. RESULTS:40% of organizations include information on environmental chemicals on their websites, but references are infrequent and rarely cite specific chemicals of concern. Most organizations (82%) discuss other risk factors such as exercise, diet, family history, or genetics. From interviews and focus groups, we identified four types of barriers to addressing environmental chemicals: 1) time and resource constraints, 2) limited knowledge of the state of the research and lack of access to experts, 3) difficulties with messaging, including concern that cultural and economic factors make it difficult for individuals to reduce their exposures, and 4) institutional obstacles, such as the downplaying of environmental risks by industry interests. Participants expressed the desire for easy-to-adopt educational programs and increased federal funding for scientist-advocate research partnerships. CONCLUSION:Our research underscores the need for environmental breast cancer experts and trusted cancer organizations to increase research translation activities so that breast cancer organizations can communicate new science on environmental factors in their online and in-person work. Moreover, our research highlights how most groups are focusing on providing resources to diagnosed women, including addressing problems with healthcare access, which displaces their ability to work on breast cancer prevention.

SUBMITTER: Ohayon JL

PROVIDER: S-EPMC7011560 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Barriers and opportunities for breast cancer organizations to focus on environmental health and disease prevention: a mixed-methods approach using website analyses, interviews, and focus groups.

Ohayon Jennifer Liss JL Nost Eric E Silk Kami K Rakoff Michele M Brody Julia Green JG

Environmental health : a global access science source 20200210 1

<h4>Background</h4>Breast cancer is the most commonly diagnosed cancer among women worldwide and most cases are not due to high risk inherited genes. In response, breast cancer activists successfully advocated for innovative research on environmental chemical exposures as a possible cause. Since then, new evidence supports hypotheses that common industrial and consumer chemicals are linked to the disease, and expert panels recommend reducing exposures. We evaluated whether these research results ...[more]

PMID: 32041648

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Project description:BackgroundAdvance care planning (ACP) is becoming increasingly important in medical care. Some suggest standardized approaches to initiate ACP with all older adults. However, the idea of patient-centered care suggests more nuanced approaches tailored to individual older adults' needs. This study investigated how older adults with different views and needs about ACP can be approached in an adequate and most beneficial way by health care professionals.MethodsWe used questionnaires, interviews, focus groups and informal conversations with older adults, living in their own homes, who volunteered to take part in our research. The research was participatory as we collaborated closely with practice partners and we used the obtained findings immediately and continuously to inform the next steps of our research throughout the process.ResultsWe identified three subgroups of older adults with differential needs regarding ACP-related activities: The first group avoids talking about their needs and wishes for care towards the end of life. These older people benefit from activities, which aim at motivating them to concern themselves with ACP-related topics. The second group consists of older adults who are in principle open for ACP-conversations but do not initiate these themselves. This group either trusts their next-of-kin or their healthcare professional to act in accordance with their wishes or does not bring up the topic in order to avoid confronting relevant others with possibly unpleasant topics. This group of people benefits from information about ACP and from healthcare professionals initiating the ACP process. The third group of older people initiates the ACP process themselves, gathers information, and takes the necessary steps for ACP. With this group it remains relevant to check carefully whether they have indeed taken all relevant steps and shared the information with all relevant involved care institutions and relatives.ConclusionsWe propose a model to simplify adjustments of ACP to individuals' needs. Our suggested approach might contribute to increasing the motivation of older people to engage in ACP conversations if these are more closely related to their own needs. Further, it might also contribute to simplifying the individual shaping of the ACP process for healthcare professionals as our suggested model offers clear guidance for approaching different types of older people in different ways. The suggested approach may in future be used for training health care professionals in the conduct of ACP conversations.

Dataset Information

Barriers and opportunities for breast cancer organizations to focus on environmental health and disease prevention: a mixed-methods approach using website analyses, interviews, and focus groups.

Publications

Barriers and opportunities for breast cancer organizations to focus on environmental health and disease prevention: a mixed-methods approach using website analyses, interviews, and focus groups.

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