Background Breast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is urgently needed to improve the quality of health care. However, previous studies related to the information needs of breast cancer patients have focused on different perspectives and have only contributed to individual results. A systematic review and synthesis of breast cancer patients’ information needs is critical. Objective This paper aims to systematically identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients. Methods Web of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019, to collect relevant studies. A Google Scholar search, interpersonal network recommendations, and reference chaining were also conducted. Eligible studies included qualitative or mixed-methods studies focusing on the information needs (across the cancer continuum) of breast cancer patients or their social networks. Subsequently, a Critical Appraisals Skills Programme checklist was used to assess the quality of included research. The results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach. Results Three themes, 19 categories, and 55 concepts emerged: (1) incentives (physical abnormality, inquiry from others, subjective norm, and problems during appointments); (2) types of information needs (prevention, etiology, diagnosis, clinical manifestation, treatment, prognosis, impact and resumption of normal life, scientific research, and social assistance); (3) moderating variables (attitudes, health literacy, demographic characteristics, disease status, as well as political and cultural environment). The studies revealed that the information needs of breast cancer patients were triggered by different incentives. Subsequently, the patients sought a variety of information among different stages of the cancer journey. Five types of variables were also found to moderate the formation of information needs. Conclusions This study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals.
Genetic counselors (GCs) have traditionally been trained to adopt a position of equipoise or clinical neutrality. They provide information, answer questions, address barriers, and engage in shared decision‐making, but generally, they do not prescribe a genetic test. Historically, GCs have generally been trained not to persuade the ambivalent or resistant patient. More recently, however, there has been discussion regarding when a greater degree of persuasion or directionality may be appropriate within genetic counseling (GC) and what role MI may play in this process. The role for “persuasive GC” is based on the premise that some genetic tests provide actionable information that would clearly benefit patients and families by impacting treatment or surveillance. For other tests, the benefits are less clear as they do not directly impact patient care or the benefits may be more subjective in nature, driven by patient values or psychological needs. For the former, we propose that GCs may adopt a more persuasive clinical approach while for the latter, a more traditional equipoise stance may be more appropriate. We suggest that motivational interviewing (MI) could serve as a unifying counseling model that allows GCs to handle both persuasive and equipoise encounters. For clearly beneficial tests, while directional, the MI encounter can still be non‐directive, autonomy‐supportive, and patient‐centered. MI can also be adapted for equipoise situations, for example, placing less emphasis on eliciting and strengthening change talk as that is more a behavior change strategy than a shared decision‐making strategy. The core principles and strategies of MI, such as autonomy support, evocation, open questions, reflective listening, and affirmation would apply to both persuasive and equipoise encounters. Key issues that merit discussion include how best to train GCs both during their initial and post‐graduate education.
Background Only a small proportion of patients who qualify for clinical genetic testing for cancer susceptibility get testing. Many patient‐level barriers contribute to low uptake. In this study, we examined self‐reported patient barriers and motivators for cancer genetic testing. Methods A survey comprised of both new and existing measures related to barriers and motivators to genetic testing was emailed to patients with a diagnosis of cancer at a large academic medical center. Patients who self‐reported receiving a genetic test were included in these analyses ( n = 376). Responses about emotions following testing as well as barriers and motivators prior to getting testing were examined. Group differences in barriers and motivators by patient demographic characteristics were examined. Results Being assigned female at birth was associated with increased emotional, insurance, and family concerns as well as increased health benefits compared to patients assigned male at birth. Younger respondents had significantly higher emotional and family concerns compared to older respondents. Recently diagnosed respondents expressed fewer concerns about insurance implications and emotional concerns. Those with a BRCA‐related cancer had higher scores on social and interpersonal concerns scale than those with other cancers. Participants with higher depression scores indicated increased emotional, social and interpersonal, and family concerns. Conclusions Self‐reported depression emerged as the most consistent factor influencing report of barriers to genetic testing. By incorporating mental health resources into clinical practice, oncologists may better identify those patients who might need more assistance following through with a referral for genetic testing and the response afterwards.
This paper presents a vulnerability framework as a means to contextualize inequities in reading achievement among children who are vulnerable to poor reading outcomes. Models to understand vulnerability have been applied in the social sciences and public health to identify population disparities and design interventions to improve outcomes. Vulnerability is multifaceted and governed by context. Using a vulnerability framework for the science of reading provides an innovative approach for acknowledging multilevel factors contributing to disparities. The ecological considerations of both individual differences in learners and conditions within and outside of schools ensures that scientific advances are realized for learners who are more vulnerable to experiencing reading difficulty in school. K E Y W O R D S minority children, reading, risk, vulnerability INTRODUCTIONThe United States (US) has long been perplexed by persistent inequities in educational experiences and outcomes among school-age children. Whether characterized as achievement gaps or opportunity gaps (Coleman, 1968;Ladson-Billings, 2006;Reardon, 2013), significant differences are routinely observed on most indicators of school achievement and success. In particular, students growing up in poverty and low-income households and
BackgroundBy 2035, it is expected that older adults (aged 65 years and older) will outnumber children and will represent 78 million people in the US population. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research.ObjectiveThis study aimed to describe sociodemographic characteristics and health and information behaviors as factors that influence US adults’ interest in engaging in medical research, beyond participation as study subjects.MethodsNationally representative cross-sectional data from the 2014 Health Information National Trends Survey (N=3677) were analyzed. Descriptive statistics and weighted multivariable logistic regression analyses were performed to assess predictors of one’s interest in patient engagement in medical research. The independent variables included age, general health, income, race and ethnicity, education level, insurance status, marital status, and health information behaviors.ResultsWe examined the association between the independent variables and patient interest in engaging in medical research (PTEngage_Interested). Patient interest in engaging in medical research has a statistically significant association with age (adjusted P<.01). Younger adults (aged 18-34 years), lower middle-aged adults (aged 35-49 years), and higher middle-aged adults (aged 50-64 years) indicated interest at relatively the same frequency (29.08%, 29.56%, and 25.12%, respectively), but older adults (aged ≥65 years) expressed less interest (17.10%) than the other age groups. After the multivariate model was run, older adults (odds ratio 0.738, 95% CI 0.500-1.088) were found to be significantly less likely to be interested in engaging in medical research than adults aged 50 to 64 years. Regardless of age, the strongest correlation was found between interest in engaging in medical research and actively looking for health information (P<.001). Respondents who did not seek health information were significantly less likely than those who did seek health information to be interested in engaging in medical research.ConclusionsPatients’ interest in engaging in medical research vary by age and information-seeking behaviors. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. Interest in participatory research methods may reflect an opportunity for consumer health informatics technologies to improve the representation of older adults in future medical research.
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