Adapting a Cancer Literacy Measure for Use Among Navajo Women.
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ABSTRACT:
SUBMITTER: Yost KJ
PROVIDER: S-EPMC4985513 | biostudies-other | 2017 May
REPOSITORIES: biostudies-other
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Project description:Lesbian, bisexual and queer (LBQ) women experience pervasive sexual stigma that harms wellbeing. Stigma is a multi-dimensional construct and includes perceived stigma, awareness of negative attitudes towards one's group, and enacted stigma, overt experiences of discrimination. Despite its complexity, sexual stigma research has generally explored singular forms of sexual stigma among LBQ women. The study objective was to develop a scale to assess perceived and enacted sexual stigma among LBQ women. We adapted a sexual stigma scale for use with LBQ women. The validation process involved 3 phases. First, we held a focus group where we engaged a purposively selected group of key informants in cognitive interviewing techniques to modify the survey items to enhance relevance to LBQ women. Second, we implemented an internet-based, cross-sectional survey with LBQ women (n=466) in Toronto, Canada. Third, we administered an internet-based survey at baseline and 6-week follow-up with LBQ women in Toronto (n=24) and Calgary (n=20). We conducted an exploratory factor analysis using principal components analysis and descriptive statistics to explore health and demographic correlates of the sexual stigma scale. Analyses yielded one scale with two factors: perceived and enacted sexual stigma. The total scale and subscales demonstrated adequate internal reliability (total scale alpha coefficient: 0.78; perceived sub-scale: 0.70; enacted sub-scale: 0.72), test-retest reliability, and construct validity. Perceived and enacted sexual stigma were associated with higher rates of depressive symptoms and lower self-esteem, social support, and self-rated health scores. Results suggest this sexual stigma scale adapted for LBQ women has good psychometric properties and addresses enacted and perceived stigma dimensions. The overwhelming majority of participants reported experiences of perceived sexual stigma. This underscores the importance of moving beyond a singular focus on discrimination to explore perceptions of social judgment, negative attitudes and social norms.
| S-EPMC4332631 | biostudies-other
Project description:Introduction The aim of this study was to improve upon the Modified Dental Anxiety Scale (MDAS) by developing the empathy-based International-Modified Dental Anxiety Scale (I-MDAS). This new measure was then utilized to compare the dental anxiety of patients cross-culturally. Methodology. This study was a descriptive cross-sectional study adapting the MDAS into the I-MDAS by adding the International scale. The study surveyed 465 participants from a dental clinic, SurveySwap, and distributed flyers. Data was collected through Qualtrics through the self-administered I-MDAS and analyzed through the SPSS computer software version 28. Participants were categorized into two subgroups where 41.3% received dental care only within the United States and are termed the domestic population, and 58.7% received dental care outside of the United States and are labeled the nondomestic population. Information about demographics, past negative dental experiences, and current dental anxiety was collected. The conducted analyses utilized an independent sample t-test to compare the subgroups' anxiety levels, a bivariate correlation to find the Pearson correlation, a Cronbach's coefficient α, and a one way ANOVA test to compare the genders' I-MDAS scores. Results There was no significant difference in dental anxiety levels between the domestic population (M = 12.73, SD = 5.13) and the nondomestic population (M = 12.76, SD = 5.06); t (463) = −0.58, p = 0.95). The I-MDAS shows evidence of validity and reliability. There was a significant and positive relationship between the International scale items and the MDAS scale items (r (463) = 0.60, p < 0.001), indicating the criterion validity of the I-MDAS. Content validity was strengthened by expanding the inquired topics in the new measure. The Cronbach's α value of 0.85 shows that the I-MDAS is reliable for clinical applications. Conclusions The I-MDAS improves upon the MDAS by providing dentists with a tool for encouraging empathy. Dental clinicians across nations can use the I-MDAS to combat the vicious cycle of dental anxiety.
| S-EPMC10228219 | biostudies-literature
Project description:BACKGROUND AND PURPOSE:Low levels of health literacy are prevalent worldwide. This report details development and psychometric properties of a health literacy measure for oral medications based on design of the Newest Vital Sign. METHODS:The measure was completed during the baseline interview. A principal components analysis evaluated dimensionality of the measure. Cronbach's alpha assessed subscale internal consistencies. RESULTS:Internal consistencies and reliability for the subscales were acceptable for a new instrument (alpha = .661, alpha = .686, alpha = .400). A 3-factor structure explained 65.34% of the total variance. Divergent validity with the Rapid Estimate of Adult Literacy in Medicine (REALM) was established. CONCLUSIONS:Our data indicates that the medication health literacy tool is multidimensional, valid, and reliable. This information is important in light of emerging evidence of the impact of health literacy on medication adherence and health.
| S-EPMC4580338 | biostudies-literature
Project description:To explore a multidimensional measure of health literacy that incorporates skills necessary to manage one's health environment.We designed a questionnaire to assess variation in an expanded understanding of health literacy among publicly insured adolescents in California (N = 1208) regarding their health care experiences and insurance.Factor loading and item clustering patterns reflected in the exploratory principal components factor analysis suggest that the data are parsimoniously described by 6 domains.This multidimensional measure becomes relevant in an era of health care reform in which many will for the first time have health insurance requiring them to navigate a system that uses a managed care model.
| S-EPMC5546315 | biostudies-other
Project description:BackgroundDespite bearing the largest HIV-related burden, little is known of the Health-Related Quality of Life (HRQoL) among people living with HIV in sub-Saharan Africa. One of the factors contributing to this gap in knowledge is the lack of culturally adapted and validated measures of HRQoL that are relevant for this setting.AimsWe set out to adapt the Functional Assessment of HIV Infection (FAHI) Questionnaire, an HIV-specific measure of HRQoL, and evaluate its internal consistency and validity.MethodsThe three phase mixed-methods study took place in a rural setting at the Kenyan Coast. Phase one involved a scoping review to describe the evidence base of the reliability and validity of FAHI as well as the geographical contexts in which it has been administered. Phase two involved in-depth interviews (n = 38) to explore the content validity, and initial piloting for face validation of the adapted FAHI. Phase three was quantitative (n = 103) and evaluated the internal consistency, convergent and construct validities of the adapted interviewer-administered questionnaire.ResultsIn the first phase of the study, we identified 16 studies that have used the FAHI. Most (82%) were conducted in North America. Only seven (44%) of the reviewed studies reported on the psychometric properties of the FAHI. In the second phase, most of the participants (37 out of 38) reported satisfaction with word clarity and content coverage whereas 34 (89%) reported satisfaction with relevance of the items, confirming the face validity of the adapted questionnaire during initial piloting. Our participants indicated that HIV impacted on their physical, functional, emotional, and social wellbeing. Their responses overlapped with items in four of the five subscales of the FAHI Questionnaire establishing its content validity. In the third phase, the internal consistency of the scale was found to be satisfactory with subscale Cronbach's α ranging from 0.55 to 0.78. The construct and convergent validity of the tool were supported by acceptable factor loadings for most of the items on the respective sub-scales and confirmation of expected significant correlations of the FAHI subscale scores with scores of a measure of common mental disorders.ConclusionThe adapted interviewer-administered Swahili version of FAHI questionnaire showed initial strong evidence of good psychometric properties with satisfactory internal consistency and acceptable validity (content, face, and convergent validity). It gives impetus for further validation work, especially construct validity, in similar settings before it can be used for research and clinical purposes in the entire East African region.
| S-EPMC5381886 | biostudies-literature
Project description:The COVID-19 pandemic has led to extraordinary changes in family literacy instruction, forcing face-to-face programmes to shift rapidly (or "on the fly") to online, remote instruction. This study is one of the few on online teaching and learning in family literacy and, to the knowledge of the authors, the first on emergency remote instruction in a family literacy programme during the COVID-19 pandemic. This article examines how the Goodling Institute for Research in Family Literacy at The Pennsylvania State University in the United States has responded to the pandemic by converting its face-to-face family literacy classes into emergency remote instruction using online platforms. Serving eight immigrant families in 2019-2020 who live in the State College area in central Pennsylvania, the Family Pathways programme includes adult education, parent education and interactive parent-child literacy activities. The article discusses how teachers created online learning opportunities for parents and children to learn together, the strategies and resources instructors used to teach remotely, how challenges such as discomfort with technology were addressed, and what has been learned from the experience. Although COVID-19 presents unprecedented challenges for educators and learners in family literacy programmes more broadly, it has also compelled instructors in this particular programme to use remote instruction creatively and has revealed the critical importance of family literacy programmes as an educational support system for low-income and immigrant families.
| S-EPMC7554294 | biostudies-literature
Project description:BackgroundSelf-administration of patient-reported outcomes measures (PROMs) by patients with low literacy is a methodologic and implementation challenge. There is an increasing emphasis on patient-centered care and wider adoption of PROMs to understand outcomes and measure healthcare quality. However, there is a risk that the use of PROMs could perpetuate health disparities unless they are implemented in an inclusive fashion. We present a protocol to adapt validated, text-based PROMs to a multimedia format (mPROMs) to optimize self-administration in populations with limited literacy. We describe the processes used to develop the protocol and the planned protocol implementation.Methods/designOur study protocol development was guided by the International Quality of Life Assessment (IQOLA) protocol for translating and culturally adapting PROMs to different languages. We used the main components of IQOLA's protocol to generate a conceptual framework to guide development of a Multimedia Adaptation Protocol (MAP). The MAP, which incorporates human-centered design (HCD) and takes a community-engaged research approach, includes four stages: forward adaptation, backward adaptation, qualitative evaluation, and validation. The MAP employs qualitative and quantitative methods including observation, cognitive and discovery interviews, ideation workshops, prototyping, user testing, co-creation interviews, and psychometric testing. An iterative design is central to the MAP and consistent with both the IQOLA protocol and HCD processes. We will pilot test and execute the MAP to adapt the Patient Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Short Form for use in a mixed literacy hand and upper extremity patient population in Baltimore, Maryland.DiscussionThe MAP provides an approach for adapting PROMs to a multimedia format. We encourage others to evaluate and test this approach with other questionnaires and patient populations. The development and use of mPROMs has the potential to expand our ability to accurately capture PROs in limited literacy populations and promote equity in PRO measurement.
| S-EPMC8177453 | biostudies-literature
Project description:BackgroundHealth literacy refers to personal competencies for the access to, understanding of, appraisal of and application of health information in order to make sound decisions in everyday life. The aim of this study was to develop and evaluate the psychometric properties of an instrument for the measurement of health literacy among adolescents (the Health Literacy Measure for Adolescents-HELMA).MethodsThis study was made up of two phases, qualitative and quantitative, which were carried out in 2012-2014 in Tehran, Iran. In the qualitative part of the study, in-depth interviews with 67 adolescents aged 15-18 were carried out in 4 high schools to generate the initial item pool for the survey. The content validity of the items was then assessed by an expert panel review (n = 13) and face validity was assessed by interviewing adolescents (n = 16). In the quantitative part of the study, in order to describe the psychometric properties of the scale, validity, reliability (internal consistency and test-retest) and factor analysis were assessed.ResultsAn item pool made up of 104 items was generated at the qualitative stage. After content validity was considered, this decreased to 47 items. In the quantitative stage, 582 adolescents aged 15-18 participated in the study with a mean age of 16.2 years. 51.2% of participants were females. In principal component factor analysis, 8 factors were loaded, which accounted for 53.37% of the variance observed. Reliability has been approved by α = 0.93 and the test-retest of the scale at two-week intervals indicated an appropriate stability for the scale (ICC = 0.93). The final questionnaire was approved with 44 items split into eight sections. The sections were titled: gain access to, reading, understanding, appraise, use, communication, self-efficacy and numeracy.ConclusionThe Health Literacy Measure for Adolescents (HELMA) is a valid and reliable tool for the measurement of the health literacy of adolescents aged 15-18 and can be used to evaluate different levels of functional, interactive, and critical health literacy in adolescents.
| S-EPMC4755574 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic has resulted in unprecedented challenges for people living with cancer, impacting not only physical health but psychological well-being. The psychological response affects the individual as well as the community and can persist long after the outbreak. We aim to assess coping strategies employed by women with ovarian cancer during the COVID-19 pandemic.MethodsWomen with a current or prior diagnosis of ovarian cancer completed an online survey which included a query about coping strategies during the COVID-19 pandemic. The survey was distributed from March 30th through April 13, 2020 through survivor networks and social media.ResultsSix hundred and three women visited the survey website during the study period and 555 (92.0%) completed the survey. Four hundred and eight (73.5%) provided information on coping strategies utilized during COVID-19. Among those who responded, the median age was 58 years (range 20-85) and 150 participants (40.8%) were undergoing active cancer treatment. Commonly utilized adaptive coping strategies included emotional support (159, 39.0%), self care (148, 36.3%), hobbies (139, 34.1%), planning (87, 21.3%), positive reframing (54, 13.2%), religion (50, 12.3%) and instrumental support (38, 9.3%). Many participants also relied on avoidance coping strategies including self distraction (111, 27.2%) and substance use (19, 4.7%).ConclusionsMost ovarian cancer survivors are using adaptive, problem-focused coping strategies during the COVID-19 pandemic, however many are practicing avoidance strategies as well. As coping mechanisms profoundly impact quality of life, oncology providers must assist patients in identifying coping strategies that optimize physical and psychological well-being.
| S-EPMC7676369 | biostudies-literature
Project description:We sought to develop and evaluate a health literacy measure in a multi-national study and to examine demographic characteristics associated with health literacy. Data were obtained from Demographic Health Surveys conducted between 2006-15 in 14 countries in Sub-Saharan Africa. Surveys were the same in all countries but translated to local languages as appropriate. We identified eight questions that corresponded to the National Academy of Medicine (NAM) definition of health literacy. Factor analysis was used to extract one measure of health literacy. Logistic regression was employed to examine the relationship between demographic characteristics and health literacy. A total of 224 751 individuals between the ages of 15 and 49 years were included. The derived health literacy measure demonstrated good internal consistency (Cronbach's α = 0.72) and good content validity. The prevalence of high health literacy overall was 35.77%; females 34.08% and males 39.17%; less than or equal to primary education 8.93%, some secondary education 69.40% and ≥complete secondary 84.35%. High health literacy varied across nations, from 8.51% in Niger to 63.89% in Namibia. This is the first known study to evaluate a measure of health literacy relying on the NAM definition utilizing a large sample from 14 countries in Sub-Saharan Africa. Our study derived a robust indicator of NAM-defined health literacy. This indicator could be used to examine determinants and outcomes of health literacy in additional countries.
| S-EPMC7821704 | biostudies-literature