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.

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

ACCESS DATA

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.

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

Similar Datasets

Project description:BackgroundThe "Strengthen Your Ankle" neuromuscular training program has been thoroughly studied over the past 8 years. This process evaluation is a part of a randomized controlled trial that examined both the short- and long-term effectiveness of this particular program. Although it was shown previously that the program, available both in a printed booklet and as a mobile app, is able to effectively reduce the number of recurrent ankle sprains, participants' compliance with the program is an ongoing challenge.ObjectiveThis process evaluation explored participants' opinions regarding both the methods of delivery, using RE-AIM (Reach Effectiveness Adoption Implementation Maintenance) Framework to identify barriers and challenges to program compliance. Although Reach, Effectiveness, and Adaptation were the focus of a previous study, this paper focuses on the implementation and maintenance phases.MethodsSemistructured interviews and online questionnaires were analyzed using qualitative content analysis. Fisher exact, chi-square, and t tests assessed between-group differences in quantitative survey responses. Interviews were assessed by thematic analysis to identify key themes.ResultsWhile there were no significant differences in the perceived simplicity, usefulness, and liking of the exercise during the 8 weeks of the neuromuscular training program, semistructured interviews showed that 14 of 16 participants agreed that an app would be of additional benefits over a booklet. After the 12-month follow-up, when asked how they evaluated the overall use of the app or the booklet, the users of the app gave a mean score of 7.7 (SD 0.99) versus a mean score 7.1 (SD 1.23) for the users of the booklet. This difference in mean score was significant (P=.006).ConclusionsAlthough both the app and booklet showed a high user satisfaction, the users of the app were significantly more satisfied. Semistructured questionnaires allowed users to address issues they would like to improve in future updates. Including a possibility for feedback and postponement of exercises, an explanation of the use of specific exercises and possibly music were identified as features that might further improve the contentment of the program, probably leading to increased compliance.Trial registrationNetherlands Trial Register NTR4027; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4027 (Archived by Webcite at http://www.webcitation.org/70MTo9dMV).

Project description:IntroductionThe impact of asthma and chronic obstructive pulmonary disease (COPD) on individuals' lives may be substantial, yet clinical practice often focuses only on symptoms. We aimed to better understand the perspective of asthma or COPD patients and to identify condition-related burden, life impact, priorities, unmet needs, and treatment goals.MethodsIndividuals aged at least 18 years with asthma or COPD were identified by a recruitment panel via clinical referrals, support groups, consumer networks, and a patient database. Interviews were carried out individually (by telephone) or in focus groups (with no more than five participants per group). A semi-structured interview guide was used with prespecified topics, informed by a literature review, that were considered impactful in asthma or COPD (symptoms and daily-life impact, satisfaction with current treatment, important aspects of treatment, adherence, and ideal treatment).ResultsOverall, 72 people participated in focus groups/individual interviews (asthma n = 18/n = 21; COPD n = 15/n = 18). "Shortness of breath" was the most frequently reported symptom; however, participants discussed the life impact of their condition more than symptoms alone. Reported physical impacts included the inability to sleep and socialize, while emotional impacts included "embarrassment, stigma, and/or self-consciousness", "fear and/or panic", and "sadness, anxiety, and/or depression". Coping mechanisms for normal activities included continuing at reduced pace and avoidance. Treatment preferences centered on resolving impacts; improved sleep, "speed of action", and "length of relief" were the most frequently reported ideal treatment factors.ConclusionPatients with asthma or COPD experience substantial quality of life limitations and tend to focus on these in their expressions of concern, rather than symptoms per se. Life impacts of these conditions may have implications beyond those commonly appreciated in routine practice; these considerations will be applied to a future discrete choice experiment survey.FundingGSK funded study (H0-15-15502/204821).

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.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure