Understanding genomic health information: how to meet the needs of the culturally and linguistically diverse community-a mixed methods study.
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ABSTRACT:
SUBMITTER: Uebergang E
PROVIDER: S-EPMC8554909 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:In Canada, people from culturally and linguistically diverse (CALD) backgrounds are at a greater risk of developing a chronic illness, and are more likely to experience adverse health effects and challenges in accessing high-quality care compared with Canadian-born individuals. This, in part, has been attributed to having inadequate access to information and resources needed to manage their illness(es). A qualitative descriptive design and inductive content analysis were used to explore the information needs of 24 CALD patients with chronic illnesses. Participants identified medical, lifestyle, and psychosocial information needs. How much information was needed depended on such antecedents as illness trajectory, severity, and perception. Most information needs remained unmet. A number of communication strategies were identified to bridge language barriers that go beyond translation and are based on effective health education strategies. Findings can help health care professionals better identify CALD patients' information needs and provide strategies that go beyond translation.
| S-EPMC9207989 | biostudies-literature
Project description:BackgroundAll individuals should have the right to engage meaningfully in occupations that meet their aspirations and life goals as well as promote their health and well-being. For individuals with disability, meaningful engagement in occupations is supported by timely, effective, and adaptive health and support services. However, research has revealed multiple barriers preventing utilization of these services by individuals with disability from culturally and linguistically diverse (CALD) backgrounds. This review aims to identify gaps and solutions in health and support services of individuals with disability from CALD backgrounds to meaningfully engage in occupations.MethodsA scoping review will be conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews. A detailed search strategy will be used to search CINAHL, PubMed, Embase, Scopus, PsycInfo, JBI, and Cochrane Library, as well as grey literature in Trove, Mednar, and OpenGrey from January 1974 onwards. Two reviewers will independently screen all citations and full-text articles for eligibility against specific inclusion and exclusion criteria. Potential conflicts will be resolved through discussion. Data will be extracted and presented in a diagrammatic or tabular form accompanied by a narrative summary.DiscussionThe scoping review will present the health and support service needs of individuals with disability from CALD backgrounds and will extend the current reviews as it focuses the engagement in meaningful occupation. Findings from this review have the potential to inform local policy discussions and practice-based disability care.Systematic review registrationOpen Science Framework ( 10.17605/OSF.IO/HW2FB ).
| S-EPMC7819343 | biostudies-literature
Project description:BackgroundOral healthcare is paramount and inextricably linked to well-being. Yet, the evidence indicates that culturally and linguistically diverse (CALD) migrant communities have unequal access to mainstream dental services due to several barriers. The purpose of this study was to investigate the oral healthcare experiences, attitudes and barriers to oral healthcare utilisation in CALD mothers.MethodsA qualitative study with semi-structured interviews was conducted within a social constructivism epistemology. CALD mothers who identified as non-English speaking, foreign country born, with a child under 12, were recruited though purposive snowball sampling. Questions probed oral healthcare experiences, barriers, enablers, and attitudes. Verbatim typed transcripts were thematically analysed using grounded methodology.ResultsThirty-three CALD mothers participated; twenty from India, five from Fiji, four from China, two from Nepal and one each from Israel and Macedonia. Languages included Cantonese, Fiji-Hindi, Gujrati, Hebrew, Hindi, Kannada, Mandarin, Maharashtrian, Macedonian, Nepalese, Punjabi, Sanskrit, Telegu and Urdu. Cost was the foremost barrier to oral healthcare services, followed by Confidence in quality care for the provision of services and treatment. Confusion in navigating a public and private healthcare system was highlighted and Competing priorities took precedence. Complacency referred to 'no need' or lack of urgency in dental care. Subsequently, dental hesitancy (superordinate theme) described the patterning of data as comprising the five 'C' factors and was theorised as the dental hesitancy phenomenon to explain the occurrence of delay or avoidance in utilising dental care.ConclusionFindings highlight the utility of the dental hesitancy phenomenon unearthed within this study. CALD mothers explained five 'C' dimensions: cost, confidence, confusion, competing priorities and complacency as barriers to accessing timely dental care. Multisectoral collaboration between healthcare systems, universal health coverage and primary sector support is required to address dental hesitancy in CALD mothers. Further, this study contributes to the field of behavioural and social sciences in oral health and augments the literature on dental avoidance.
| S-EPMC9703727 | biostudies-literature
Project description:ObjectiveDescribe COVID-19 information-seeking experiences for culturally and linguistically diverse groups in Sydney, Australia.MethodsCross-sectional survey, translated into 11 languages; participants recruited from March 21 to July 9, 2021. Regression models identified factors associated with difficulty finding easy-to-understand COVID-19 information.ResultsAcross 708 participants (88% born overseas, 31% poor English proficiency), difficulty finding easy-to-understand COVID-19 information was rated 4.13 for English (95%CI: 3.85-4.41) and 4.36 for non-English language materials (95%CI: 4.07-4.66) (1 easy to 10 hard). Participants who were older (p < 0.001), had inadequate health literacy (p < 0.001), or poor English proficiency (p < 0.001) found it harder to find easy-to-understand English-language COVID-19 information. Those who had greater difficulty finding easy-to-understand non-English COVID-19 information were younger (p = 0.004), had poor English proficiency (p < 0.001), were university-educated (p = 0.05), and had spent longer living in Australia (p = 0.001). They were more likely to rely on friends and family for COVID-19 information (p = 0.02). There was significant variation in information-seeking experiences across language groups (p's < 0.001).ConclusionsEasy-to-understand and accessible COVID-19 information is needed to meet the needs of people in culturally and linguistically diverse communities.Practice implicationsCOVID-19 communication efforts must involve working alongside these communities to leverage existing communication channels and tailor messages.
| S-EPMC8966120 | biostudies-literature
Project description:BACKGROUND:Current medical professions involve an extensive knowledge of the latest validated scientific data to implement disease diagnosis, therapeutic strategies, and patient care. Although clinicians can refer to a growing number and type of information sources to keep current with new scientific achievements, there are still various concerns about medical information validity, quality, and applicability into clinical practice. Novel strategies are required to identify physicians' real-life needs with the final aim to improve modern medical information delivery. OBJECTIVE:Our research used an innovative tool to collect real-time physician queries in order to investigate information needs and seeking behavior of Italian neurologists treating patients with multiple sclerosis (MS) and migraine. METHODS:The study was designed as an exploratory mixed methods (ie, qualitative and quantitative) study involving 15 consecutive days of observation. A total of 50 neurologists (n=25 MS and n=25 migraine specialists) were recruited. Data were collected using an instant messaging mobile app designed for this research. At each information-seeking event, moderators triggered a computer-assisted personal interview including both semistructured interview and close-ended questions. Interactions and physician queries collected using the mobile app were coded into emerging themes by content analysis. RESULTS:Neurologist queries were relevant to the following major themes: therapy management (36/50, 71%) and drug-related information (34/50, 67%), followed by diagnostic strategies and procedures (21/50, 42%). Quantitative analysis indicated online resources were preferentially used by clinicians (48/50, 96%) compared with offline sources (24/50, 47%). A multichannel approach, in which both online and offline sources were consulted to meet the same need, was adopted in 33% (65/198) of information-seeking events. Neurologists more likely retrieved information from online relative to offline channels (F=1.7; P=.01). MS specialists were 53% more likely to engage in one information-seeking event compared with migraine neurologists (risk ratio 1.54; 95% CI 1.16-2.05). MS specialists tended to be more interested in patient-related content than migraine clinicians (28% [7/25] vs 10% [2/25], P=.06), who conversely more likely sought information concerning therapy management (85% [21/25] vs 60% [15/25], P=.05). Compared with MS clinicians, migraine specialists had a harder time finding the required information, either looking at online or offline channels (F=12.5; P=.01) and less frequently used offline channels (30% [8/25] vs 60% [15/25] of information-seeking events, P=.02). When multiple sources needed to be consulted to retrieve an information item, a reduced satisfaction rate was observed both among migraine and MS specialists (single source vs multiple sources P=.003). CONCLUSIONS:This study provides a detailed description of real-life seeking behavior, educational needs, and information sources adopted by Italian MS and migraine neurologists. Neurologist information needs and seeking behavior reflect the specific characteristics of the specialty area in which they operate. These findings suggest identification of time- and context-specific needs of clinicians is required to design an effective medical information strategy.
| S-EPMC7177431 | biostudies-literature
Project description:A systematic review of research published in English was conducted across seven electronic databases in psychology, health and social sciences. The aim was to ascertain the nature of mental health care workers' constructions about culturally and linguistically diverse individuals in order to facilitate provision of culturally appropriate service delivery and multicultural training. The constructs and perspectives of 5,870 mental health workers with regards to minority populations are represented across the 38 studies included. Key themes comprised: Aetiology of Constructions; Content of Constructions, Factors that Influence Constructions; Implications for Cultural Competence, Implications for the Therapeutic Alliance, Recommendations for Training, Recommendations for Practice and Recommendations for Research. The therapeutic alliance was most at risk when practitioners displayed low levels of cultural competency and high levels of racial and ethnic blindness. The changing and increasingly multicultural context within most countries means that mental health systems and workers need to prepare for an increasing range of culturally and linguistically diverse clients in need of support. Recommendations are explored for training, practice and research.
| S-EPMC6053145 | biostudies-literature
Project description:BackgroundTo investigate whether culturally and linguistically diverse (CALD) communities in Western Sydney have experienced any positive effects during the COVID-19 pandemic, and if so, what these were.MethodsA cross-sectional survey with ten language groups was conducted from 21st March to 9th July 2021 in Sydney, Australia. Participants were recruited through bilingual multicultural health staff and health care interpreter service staff and answered a question, 'In your life, have you experienced any positive effects from the COVID-19 pandemic?' Differences were explored by demographic variables. Free-text responses were thematically coded using the Content Analysis method.Results707 people completed the survey, aged 18 to >70, 49% males and 51% females. Only 161 (23%) of those surveyed reported any positive impacts. There were significant differences in the proportion of those who reported positives based on age (p = 0.004), gender (p = 0.013), language (p = 0.003), health literacy (p = 0.014), English language proficiency (p = 0.003), education (p = <0.001) and whether participants had children less than 18 years at home (p = 0.001). Content Analysis of open-ended responses showed that, of those that did report positives, the top themes were 'Family time' (44%), 'Improved self-care' (31%) and, 'Greater connection with others' (17%).DiscussionFew surveyed participants reported finding any positives stemming from the COVID-19 pandemic. This finding is in stark contrast to related research in Australia with participants whose native language is English in which many more people experienced positives. The needs of people from CALD backgrounds must inform future responses to community crises to facilitate an equitable effect of any collateral positives that may arise.
| S-EPMC9733867 | biostudies-literature
Project description:ObjectiveThe research examined complementary and alternative medicine (CAM) information-seeking behaviors and preferences from short- to long-term cancer survival, including goals, motivations, and information sources.MethodsA mixed-methods approach was used with cancer survivors from the "Assessment of Patients' Experience with Cancer Care" 2004 cohort. Data collection included a mail survey and phone interviews using the critical incident technique (CIT).ResultsSeventy survivors from the 2004 study responded to the survey, and eight participated in the CIT interviews. Quantitative results showed that CAM usage did not change significantly between 2004 and 2015. The following themes emerged from the CIT: families' and friends' provision of the initial introduction to a CAM, use of CAM to manage the emotional and psychological impact of cancer, utilization of trained CAM practitioners, and online resources as a prominent source for CAM information. The majority of participants expressed an interest in an online information-sharing portal for CAM.ConclusionPatients continue to use CAM well into long-term cancer survivorship. Finding trustworthy sources for information on CAM presents many challenges such as reliability of source, conflicting information on efficacy, and unknown interactions with conventional medications. Study participants expressed interest in an online portal to meet these needs through patient testimonials and linkage of claims to the scientific literature. Such a portal could also aid medical librarians and clinicians in locating and evaluating CAM information on behalf of patients.
| S-EPMC5764598 | biostudies-literature
Project description:BackgroundPregnancy apps are a booming global industry, with most pregnant women in high-income countries now using them. From the perspective of health care and health information provision, this is both encouraging and unsettling; the demand indicates a clear direction for the development of future resources, but it also underscores the importance of processes ensuring access, reliability, and quality control.ObjectiveThis review provides an overview of current literature on pregnancy apps and aims at describing (1) the ways in which apps are used by women, in general, and by those of a culturally and linguistically diverse (CALD) background; (2) the utility and quality of information provided; and (3) areas where more research, development, and oversight are needed.MethodsWe chose a narrative review methodology for the study and performed a structured literature search including studies published between 2012 and 2017. Searches were performed using MEDLINE, EMBASE, and CINAHL databases. Studies were identified for inclusion using two separate search criteria and strategies: (1) studies on pregnancy apps and pregnant women's use of these apps and (2) studies on CALD pregnant women and their use of technology for accessing information on and services for pregnancy. Overall, we selected 38 studies.ResultsWe found that pregnancy apps were principally used to access pregnancy health and fetal development information. Data storage capability, Web-based features or personalized tools, and social media features were also popular app features sought by women. Lower rates of the pregnancy app uptake were indicated among lower-income and non-English-speaking women. Preliminary evidence indicates that a combination of technological, health literacy, and language issues may result in lower uptake of pregnancy apps by these groups; however, further investigation is required. A marked limitation of the health app industry is lack of regulation in a commercially dominated field, making it difficult for users to assess the reliability of the information being presented. Health professionals and users alike indicate that given the choice, they would prefer using pregnancy apps that are relevant to their local health care context and come from a trusted source. Evidence indicates a need for greater health professional and institutional engagement in the app development, as well as awareness of and guidance for women's use of these resources.ConclusionsThis is the first review of pregnancy app use, types of information provided, and features preferred by pregnant women in general and by those of a CALD background in particular. It indicates the demand for access to accurate information that is relevant to users, their community, and their associated health services. Given the popularity of pregnancy apps, such apps have enormous potential to be used for the provision of accurate, evidence-based health information.
| S-EPMC6269626 | biostudies-literature
Project description:BackgroundHealth care systems have become increasingly more reliant on patients' ability to navigate the digital world. However, little research has been conducted on why some communities are less able or less likely to successfully engage with digital health technologies (DHTs), particularly among culturally and linguistically diverse (CaLD) populations.ObjectiveThis systematic review aimed to determine the barriers to and facilitators of interacting with DHTs from the perspectives of CaLD population groups, including racial or ethnic minority groups, immigrants and refugees, and Indigenous or First Nations people.MethodsA systematic review and thematic synthesis of qualitative studies was conducted. Peer-reviewed literature published between January 2011 and June 2022 was searched across 3 electronic databases. Terms for digital health were combined with terms for cultural or linguistic diversity, ethnic minority groups, or Indigenous and First Nations people and terms related to barriers to accessing digital technologies. A qualitative thematic synthesis was conducted to identify descriptive and analytical themes of barriers to and facilitators of interacting with DHTs. Quality appraisal was performed using the Mixed Methods Appraisal Tool.ResultsOf the 1418 studies identified in the electronic search, a total of 34 (2.4%) were included in this review. Half of the included studies (17/34, 50%) were conducted in the United States. There was considerable variation in terms of the CaLD backgrounds of the participants. In total, 26% (9/34) of the studies focused on Indigenous or First Nations communities, 41% (14/34) were conducted among ethnic minority populations, 15% (5/34) of the studies were conducted among immigrants, and 18% (6/34) were conducted in refugee communities. Of the 34 studies, 21 (62%) described the development or evaluation of a digital health intervention, whereas 13 (38%) studies did not include an intervention but instead focused on elucidating participants' views and behaviors in relation to digital health. From the 34 studies analyzed, 18 descriptive themes were identified, each describing barriers to and facilitators of interacting with DHTs, which were grouped into 7 overarching analytical themes: using technology, design components, language, culture, health and medical, trustworthiness, and interaction with others.ConclusionsThis study identified several analytic and descriptive themes influencing access to and uptake of DHTs among CaLD populations, including Indigenous and First Nations groups. We found that cultural factors affected all identified themes to some degree and that cultural and linguistic perspectives should be considered in the design and delivery of DHTs, with this best served through the inclusion of the target communities at all stages of development. This may improve the potential of DHTs to be more acceptable, appropriate, and accessible to population groups currently at risk of not obtaining the full benefits of digital health.
| S-EPMC10015358 | biostudies-literature