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1.  Understanding critical health literacy: a concept analysis 
BMC Public Health  2013;13:150.
Background
Interest in and debates around health literacy have grown over the last two decades and key to the discussions has been the distinction made between basic functional health literacy, communicative/interactive health literacy and critical health literacy. Of these, critical health literacy is the least well developed and differing interpretations of its constituents and relevance exist. The aim of this study is to rigorously analyse the concept of critical health literacy in order to offer some clarity of definition upon which appropriate theory, well grounded practice and potential measurement tools can be based.
Method
The study uses a theoretical and colloquial evolutionary concept analysis method to systematically identify the features associated with this concept. A unique characteristic of this method is that it practically combines an analysis of the literature with in depth interviews undertaken with practitioners and policy makers who have an interest in the field. The study also analyses how the concept is understood across the contexts of time, place, discipline and use by health professionals, policy makers and academics.
Results
Findings revealed a distinct set of characteristics of advanced personal skills, health knowledge, information skills, effective interaction between service providers and users, informed decision making and empowerment including political action as key features of critical health literacy. The potential consequences of critical health literacy identified are in improving health outcomes, creating more effective use of health services and reducing inequalities in health thus demonstrating the relevance of this concept to public health and health promotion.
Conclusions
While critical health literacy is shown to be a unique concept, there remain significant contextual variations in understanding particularly between academics, practitioners and policy makers. Key attributes presented as part of this concept when it was first introduced in the literature, particularly those around empowerment, social and political action and the existence of the concept at both an individual and population level, have been lost in more recent representations. This has resulted in critical health literacy becoming restricted to a higher order cognitive individual skill rather than a driver for political and social change. The paper argues that in order to retain the uniqueness and usefulness of the concept in practice efforts should be made to avoid this dilution of meaning.
doi:10.1186/1471-2458-13-150
PMCID: PMC3583748  PMID: 23419015
Critical health literacy; Health literacy; Empowerment; Concept analysis
2.  A critical review of population health literacy assessment 
BMC Public Health  2015;15:215.
Background
Defining health literacy from a public health perspective places greater emphasis on the knowledge and skills required to prevent disease and for promoting health in everyday life. Addressing health literacy at the community level provides great potential for improving health knowledge, skills and behaviours resulting in better health outcomes. Yet there is a notable absence of discussion in the literature of what a health literate population looks like, or how this is best assessed.
Discussion
The emphasis in assessing health literacy has predominantly focused on the functional health literacy of individuals in clinical settings. This review examines currently available health literacy assessment tools to identify how well suited they are in addressing health literacy beyond clinical care settings and beyond the individual. Although public health literature appears to place greater emphasis on conceptualizing critical health literacy, the focus continues to remain on assessing individuals, rather than on health literacy within the context of families, communities and population groups. When a population approach is adopted, an aggregate of individual health literacy assessment is generally used. Aggregation of individual health literacy fails to capture the dynamic and often synergistic relationships within communities, and fails to reflect societal influences on health knowledge, beliefs and behaviours.
We hypothesise that a different assessment framework is required to adequately address the complexities of community health literacy. We assert that a public health approach, founded on health promotion theories provides a useful scaffold to assess the critical health literacy of population groups. It is proposed that inclusion of community members in the research process is a necessary requirement to coproduce such an appropriate assessment framework.
Summary
We contend that health literacy assessment and potential interventions need to shift to promoting the knowledge and skills essential for critical health literacy at a societal level. The challenge for researchers is to negotiate the myriad of complexities associated with each concept and component required for this task.
doi:10.1186/s12889-015-1551-6
PMCID: PMC4351936  PMID: 25885742
Critical health literacy; Community health literacy assessment
3.  Which providers can bridge the health literacy gap in lifestyle risk factor modification education: a systematic review and narrative synthesis 
BMC Family Practice  2012;13:44.
Background
People with low health literacy may not have the capacity to self-manage their health and prevent the development of chronic disease through lifestyle risk factor modification. The aim of this narrative synthesis is to determine the effectiveness of primary healthcare providers in developing health literacy of patients to make SNAPW (smoking, nutrition, alcohol, physical activity and weight) lifestyle changes.
Methods
Studies were identified by searching Medline, Embase, Cochrane Library, CINAHL, Joanna Briggs Institute, Psychinfo, Web of Science, Scopus, APAIS, Australian Medical Index, Community of Science and Google Scholar from 1 January 1985 to 30 April 2009. Health literacy and related concepts are poorly indexed in the databases so a list of text words were developed and tested for use. Hand searches were also conducted of four key journals. Studies published in English and included males and females aged 18 years and over with at least one SNAPW risk factor for the development of a chronic disease. The interventions had to be implemented within primary health care, with an aim to influence the health literacy of patients to make SNAPW lifestyle changes. The studies had to report an outcome measure associated with health literacy (knowledge, skills, attitudes, self efficacy, stages of change, motivation and patient activation) and SNAPW risk factor.
The definition of health literacy in terms of functional, communicative and critical health literacy provided the guiding framework for the review.
Results
52 papers were included that described interventions to address health literacy and lifestyle risk factor modification provided by different health professionals. Most of the studies (71%, 37/52) demonstrated an improvement in health literacy, in particular interventions of a moderate to high intensity.
Non medical health care providers were effective in improving health literacy. However this was confounded by intensity of intervention. Provider barriers impacted on their relationship with patients.
Conclusion
Capacity to provide interventions of sufficient intensity is an important condition for effective health literacy support for lifestyle change. This has implications for workforce development and the organisation of primary health care.
doi:10.1186/1471-2296-13-44
PMCID: PMC3515410  PMID: 22639799
Health literacy; Lifestyle risk factor modification; Primary health care
4.  The Effectiveness of Mobile-Health Technologies to Improve Health Care Service Delivery Processes: A Systematic Review and Meta-Analysis 
PLoS Medicine  2013;10(1):e1001363.
Caroline Free and colleagues systematically review controlled trials of mobile technology interventions to improve health care delivery processes and show that current interventions give only modest benefits and that high-quality trials measuring clinical outcomes are needed.
Background
Mobile health interventions could have beneficial effects on health care delivery processes. We aimed to conduct a systematic review of controlled trials of mobile technology interventions to improve health care delivery processes.
Methods and Findings
We searched for all controlled trials of mobile technology based health interventions using MEDLINE, EMBASE, PsycINFO, Global Health, Web of Science, Cochrane Library, UK NHS HTA (Jan 1990–Sept 2010). Two authors independently extracted data on allocation concealment, allocation sequence, blinding, completeness of follow-up, and measures of effect. We calculated effect estimates and we used random effects meta-analysis to give pooled estimates.
We identified 42 trials. None of the trials had low risk of bias. Seven trials of health care provider support reported 25 outcomes regarding appropriate disease management, of which 11 showed statistically significant benefits. One trial reported a statistically significant improvement in nurse/surgeon communication using mobile phones. Two trials reported statistically significant reductions in correct diagnoses using mobile technology photos compared to gold standard. The pooled effect on appointment attendance using text message (short message service or SMS) reminders versus no reminder was increased, with a relative risk (RR) of 1.06 (95% CI 1.05–1.07, I2 = 6%). The pooled effects on the number of cancelled appointments was not significantly increased RR 1.08 (95% CI 0.89–1.30). There was no difference in attendance using SMS reminders versus other reminders (RR 0.98, 95% CI 0.94–1.02, respectively). To address the limitation of the older search, we also reviewed more recent literature.
Conclusions
The results for health care provider support interventions on diagnosis and management outcomes are generally consistent with modest benefits. Trials using mobile technology-based photos reported reductions in correct diagnoses when compared to the gold standard. SMS appointment reminders have modest benefits and may be appropriate for implementation. High quality trials measuring clinical outcomes are needed.
Please see later in the article for the Editors' Summary
Editors’ Summary
Background
Over the past few decades, computing and communication technologies have changed dramatically. Bulky, slow computers have been replaced by portable devices that can complete increasingly complex tasks in less and less time. Similarly, landlines have been replaced by mobile phones and other mobile communication technologies that can connect people anytime and anywhere, and that can transmit text messages (short message service; SMS), photographs, and data at the touch of a button. These advances have led to the development of mobile-health (mHealth)—the use of mobile computing and communication technologies in health care and public health. mHealth has many applications. It can be used to facilitate data collection and to encourage health-care consumers to adopt healthy lifestyles or to self-manage chronic conditions. It can also be used to improve health-care service delivery processes by targeting health-care providers or communication between these providers and their patients. So, for example, mobile technologies can be used to provide clinical management support in settings where there are no specialist clinicians, and they can be used to send patients test results and timely reminders of appointments.
Why Was This Study Done?
Many experts believe that mHealth interventions could greatly improve health-care delivery processes, particularly in resource-poor settings. The results of several controlled trials (studies that compare the outcomes of people who do or do not receive an intervention) of mHealth interventions designed to improve health-care delivery processes have been published. However, these data have not been comprehensively reviewed, and the effectiveness of this type of mHealth intervention has not been quantified. Here, the researchers rectify this situation by undertaking a systematic review and meta-analysis of controlled trials of mobile technology-based interventions designed to improve health-care service delivery processes. A systematic review is a study that uses predefined criteria to identify all the research on a given topic; a meta-analysis is a statistical approach that is used to pool the results of several independent studies.
What Did the Researchers Do and Find?
The researchers identified 42 controlled trials that investigated mobile technology-based interventions designed to improve health-care service delivery processes. None of the trials were of high quality—many had methodological problems likely to affect the accuracy of their findings—and nearly all were undertaken in high-income countries. Thirty-two of the trials tested interventions directed at health-care providers. Of these trials, seven investigated interventions providing health-care provider education, 18 investigated interventions supporting clinical diagnosis and treatment, and seven investigated interventions to facilitate communication between health-care providers. Several of the trials reported that the tested intervention led to statistically significant improvements (improvements unlikely to have happened by chance) in outcomes related to disease management. However, two trials that used mobile phones to transmit photos to off-site clinicians for diagnosis reported significant reductions in correct diagnoses compared to diagnosis by an on-site specialist. Ten of the 42 trials investigated interventions targeting communication between health-care providers and patients. Eight of these trials investigated SMS-based appointment reminders. Meta-analyses of the results of these trials indicated that using SMS appointment reminders significantly but modestly increased patient attendance compared to no reminders. However, SMS reminders were no more effective than postal or phone call reminders, and texting reminders to patients who persistently missed appointments did not significantly change the number of cancelled appointments.
What Do These Findings Mean?
These findings indicate that some mHealth interventions designed to improve health-care service delivery processes are modestly effective, but they also highlight the need for more trials of these interventions. Specifically, these findings show that although some interventions designed to provide support for health-care providers modestly improved some aspects of clinical diagnosis and management, other interventions had deleterious effects—most notably, the use of mobile technology–based photos for diagnosis. In terms of mHealth interventions targeting communication between health-care providers and patients, the finding that SMS appointment reminders have modest benefits suggests that implementation of this intervention should be considered, at least in high-income settings. However, the researchers stress that more trials are needed to robustly establish the ability of mobile technology-based interventions to improve health-care delivery processes. These trials need to be of high quality, they should be undertaken in resource-limited settings as well as in high-income countries, and, ideally, they should consider interventions that combine mHealth and conventional approaches.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001363.
A related PLOS Medicine Research Article by Free et al. investigates the effectiveness of mHealth technology-based health behavior change and disease management interventions for health-care consumers
Wikipedia has a page on mHealth (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
mHealth: New horizons for health through mobile technologies is a global survey of mHealth prepared by the World Health Organization’s Global Observatory for eHealth (eHealth is health-care practice supported by electronic processes and communication)
The mHealth in Low-Resource Settings website, which is maintained by the Netherlands Royal Tropical Institute, provides information on the current use, potential, and limitations of mHealth in low-resource settings
The US National Institutes of Health Fogarty International Center provides links to resources and information about mHealth
doi:10.1371/journal.pmed.1001363
PMCID: PMC3566926  PMID: 23458994
5.  The OPtimising HEalth LIterAcy (Ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform 
BMC Public Health  2014;14:694.
Background
Health literacy is a multi-dimensional concept comprising a range of cognitive, affective, social, and personal skills and attributes. This paper describes the research and development protocol for a large communities-based collaborative project in Victoria, Australia that aims to identify and respond to health literacy issues for people with chronic conditions. The project, called Ophelia (OPtimising HEalth LIterAcy) Victoria, is a partnership between two universities, eight service organisations and the Victorian Government. Based on the identified issues, it will develop and pilot health literacy interventions across eight disparate health services to inform the creation of a health literacy response framework to improve health outcomes and reduce health inequalities.
Methods/Design
The protocol draws on many inputs including the experience of the partners in previous co-creation and roll-out of large-scale health-promotion initiatives. Three key conceptual models/discourses inform the protocol: intervention mapping; quality improvement collaboratives, and realist synthesis. The protocol is outcomes-oriented and focuses on two key questions: ‘What are the health literacy strengths and weaknesses of clients of participating sites?’, and ‘How do sites interpret and respond to these in order to achieve positive health and equity outcomes for their clients?’. The process has six steps in three main phases. The first phase is a needs assessment that uses the Health Literacy Questionnaire (HLQ), a multi-dimensional measure of health literacy, to identify common health literacy needs among clients. The second phase involves front-line staff and management within each service organisation in co-creating intervention plans to strategically respond to the identified local needs. The third phase will trial the interventions within each site to determine if the site can improve identified limitations to service access and/or health outcomes.
Discussion
There have been few attempts to assist agencies to identify, and respond, in a planned way, to the varied health literacy needs of their clients. This project will assess the potential for targeted, locally-developed health literacy interventions to improve access, equity and outcomes.
doi:10.1186/1471-2458-14-694
PMCID: PMC4105165  PMID: 25002024
Health literacy; Equity; Chronic illness; Access; Implementation; Intervention development; Intervention mapping; Participatory research; Health Literacy Questionnaire (HLQ); Co-creation
6.  The development of health literacy in patients with a long-term health condition: the health literacy pathway model 
BMC Public Health  2012;12:130.
Background
Inadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes. However, little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Our objectives were to describe how patients with a long-term condition practice health literacy in the management of their health and communication with health professionals, how they become more health literate over time and their experience of using health services. We also sought to identify and describe the motivations, facilitators and barriers in the practice of health literacy in healthcare consultations.
Methods
We designed a longitudinal qualitative study using serial interviews with 18 participants to explore their experiences of learning to manage their condition and their experiences of health literacy when participating in healthcare processes. Participants were recruited from patient education programmes and were interviewed three times over a period of 9 months. A framework approach was used to analyse data.
Results
A model is presented that illustrates the development of health literacy along a trajectory that includes the development of knowledge, health literacy skills and practices, health literacy actions, abilities in seeking options and informed and shared decision making opportunities. Motivations and barriers to developing and practising health literacy skills partly reflected participants' characteristics but were also influenced by health professionals. Some participants developed their health literacy to a point where they became more involved in healthcare processes (including informed and shared decision-making).
Conclusions
Patients with a long-term condition can develop health literacy skills over time and put their skills into practice in becoming more active in healthcare consultations. Our findings have implications for developing health literacy interventions aimed at patient involvement in healthcare processes and improved self-management of long-term conditions.
doi:10.1186/1471-2458-12-130
PMCID: PMC3305618  PMID: 22332990
7.  Community Participation in Health Systems Research: A Systematic Review Assessing the State of Research, the Nature of Interventions Involved and the Features of Engagement with Communities 
PLoS ONE  2015;10(10):e0141091.
Background
Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research.
Objective
To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries.
Methodology
We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out of the remaining 160 articles with rich community participation, we further examined 64 articles focused on service delivery and governance within health systems research.
Results
Most articles were led by authors in high income countries and many did not consistently list critical aspects of study quality. Articles were most likely to describe community participation in health promotion interventions (78%, 202/260), even though they were less participatory than other health systems areas. Community involvement in governance and supply chain management was less common (12%, 30/260 and 9%, 24/260 respectively), but more participatory. Articles cut across all health conditions and varied by scale and duration, with those that were implemented at national scale or over more than five years being mainstreamed by government. Most articles detailed improvements in service availability, accessibility and acceptability, with fewer efforts focused on quality, and few designs able to measure impact on health outcomes. With regards to participation, most articles supported community’s in implementing interventions (95%, n = 247/260), in contrast to involving communities in identifying and defining problems (18%, n = 46/260). Many articles did not discuss who in communities participated, with just over a half of the articles disaggregating any information by sex. Articles were largely under theorized, and only five mentioned power or control. Majority of the articles (57/64) described community participation processes as being collaborative with fewer describing either community mobilization or community empowerment. Intrinsic individual motivations, community-level trust, strong external linkages, and supportive institutional processes facilitated community participation, while lack of training, interest and information, along with weak financial sustainability were challenges. Supportive contextual factors included decentralization reforms and engagement with social movements.
Conclusion
Despite positive examples, community participation in health systems interventions was variable, with few being truly community directed. Future research should more thoroughly engage with community participation theory, recognize the power relations inherent in community participation, and be more realistic as to how much communities can participate and cognizant of who decides that.
doi:10.1371/journal.pone.0141091
PMCID: PMC4619861  PMID: 26496124
8.  Measuring oral health literacy: a scoping review of existing tools 
BMC Oral Health  2014;14:148.
Background
This article presents findings from a scoping review of tools used to measure oral health literacy. Internationally, interest in oral health literacy is driven by oral health disparities, particularly for disadvantaged groups, with conditions such as dental caries and periodontal disease contributing substantially to the global burden of disease. The increasing focus on measuring oral health literacy aligns with reasons for measuring broader health literacy, that is, by assessing oral health literacy, decisions can be made about instigating interventions at policy and practice level to improve individual and population level oral health. There are numerous tools available that measure oral health literacy using a range of indicators.
Methods
A scoping review was designed to map the existing tools designed to measure oral health literacy (OHL). Key search terms were developed and mapped. Selected databases were used that identified 32 relevant studies reporting a range of OHL tools.
Results
We identified 32 articles that reported a range of oral health literacy tools. Many of the studies used the Rapid Estimate of Adult Literacy in Dentistry (REALD) and/or the Test of Functional Health Literacy in Dentistry (ToFHLiD) that were developed from earlier tools designed to measure broader health literacy. These tools have been widely criticised for providing only an approximate measure of OHL based mainly on word recognition. A number of newer tools have included new measures of oral health literacy including numeracy and oral health conceptual knowledge however tools that measure important indicators of oral health literacy such as service navigation are rare.
Conclusions
Findings from this scoping exercise confirm our findings from preliminary scans that the majority of tools are heavily biased towards word recognition, numeracy and reading skills, rather than what this means in terms of health behaviours and service utilisation. More recent developments have attempted to incorporate other aspects considered important, including decision making and service navigation. The incorporation of these aspects into newer tools will provide oral health researchers and policy makers with further evidence of the importance of oral health literacy when designing interventions to improve oral health.
doi:10.1186/1472-6831-14-148
PMCID: PMC4417207  PMID: 25472659
Oral health literacy tools; Oral health; Dental health literacy; Health literacy; Scoping review
9.  Professional Uncertainty and Disempowerment Responding to Ethnic Diversity in Health Care: A Qualitative Study 
PLoS Medicine  2007;4(11):e323.
Background
While ethnic disparities in health and health care are increasing, evidence on how to enhance quality of care and reduce inequalities remains limited. Despite growth in the scope and application of guidelines on “cultural competence,” remarkably little is known about how practising health professionals experience and perceive their work with patients from diverse ethnic communities. Using cancer care as a clinical context, we aimed to explore this with a range of health professionals to inform interventions to enhance quality of care.
Methods and Findings
We conducted a qualitative study involving 18 focus groups with a purposeful sample of 106 health professionals of differing disciplines, in primary and secondary care settings, working with patient populations of varying ethnic diversity in the Midlands of the UK. Data were analysed by constant comparison and we undertook processes for validation of analysis. We found that, as they sought to offer appropriate care, health professionals wrestled with considerable uncertainty and apprehension in responding to the needs of patients of ethnicities different from their own. They emphasised their perceived ignorance about cultural difference and were anxious about being culturally inappropriate, causing affront, or appearing discriminatory or racist. Professionals' ability to think and act flexibly or creatively faltered. Although trying to do their best, professionals' uncertainty was disempowering, creating a disabling hesitancy and inertia in their practice. Most professionals sought and applied a knowledge-based cultural expertise approach to patients, though some identified the risk of engendering stereotypical expectations of patients. Professionals' uncertainty and disempowerment had the potential to perpetuate each other, to the detriment of patient care.
Conclusions
This study suggests potential mechanisms by which health professionals may inadvertently contribute to ethnic disparities in health care. It identifies critical opportunities to empower health professionals to respond more effectively. Interventions should help professionals acknowledge their uncertainty and its potential to create inertia in their practice. A shift away from a cultural expertise model toward a greater focus on each patient as an individual may help.
From a qualitative study, Joe Kai and colleagues have identified opportunities to empower health professionals to respond more effectively to challenges in their work with patients from diverse ethnic communities.
Editors' Summary
Background.
Communities are increasingly diverse in terms of ethnicity (belonging to a group of people defined by social characteristics such as cultural tradition or national origin) and race (belonging to a group identified by inherited physical characteristics). Although health professionals and governments are striving to ensure that everybody has the same access to health care, there is increasing evidence of ethnic inequalities in health-care outcomes. Some of these inequalities reflect intrinsic differences between groups of people—Ashkenazi Jews, for example, often carry an altered gene that increases their chance of developing aggressive breast cancer. Often, however, these differences reflect inequalities in the health care received by different ethnic groups. To improve this situation, “cultural competence” has been promoted over recent years. Cultural competence is the development of skills by individuals and organizations that allow them to work effectively with people from different cultures. Health professionals are now taught about ethnic differences in health beliefs and practices, religion, and communication styles to help them provide the best service to all their patients.
Why Was This Study Done?
Numerous guidelines aim to improve cultural competency but little is known about how health professionals experience and perceive their work with patients from diverse ethnic groups. Is their behavior influenced by ethnicity in ways that might contribute to health care disparities? For example, do doctors sometimes avoid medical examinations for fear of causing offence because of cultural differences? If more were known about how health professionals handle ethnic diversity (a term used here to include both ethnicity and race) it might be possible to reduce ethnic inequalities in health care. In this qualitative study, the researchers have explored how health professionals involved in cancer care are affected by working with ethnically diverse patients. A qualitative study is one that collects nonquantitative data such as how doctors “feel” about treating people of different ethnic backgrounds; a quantitative study might compare clinical outcomes in different ethnic groups.
What Did the Researchers Do and Find?
The researchers enrolled 106 doctors, nurses, and other health-related professionals from different health-service settings in the Midlands, an ethnically diverse region of the UK. They organized 18 focus groups in which the health professionals described their experiences of caring for people from ethnic minority backgrounds. The participants were encouraged to recall actual cases and to identify what they saw as problems and strengths in their interactions with these patients. The researchers found that the health professionals wrestled with many challenges when providing health care for patients from diverse ethnic backgrounds. These challenges included problems with language and with general communication (for example, deciding when it was acceptable to touch a patient to show empathy). Health professionals also worried they did not know enough about cultural differences. As a result, they said they often felt uncertain of their ability to avoid causing affront or appearing racist. This uncertainty, the researchers report, disempowered the health professionals, sometimes making them hesitate or fail to do what was best for their patient.
What Do These Findings Mean?
These findings reveal that health professionals often experience considerable uncertainty when caring for ethnically diverse patients, even after training in cultural competency. They also show that this uncertainty can lead to hesitancy and inertia, which might contribute to ethnic health care inequalities. Because the study participants were probably already interested in ethnic diversity and health care, interviews with other health professionals (and investigations of patient experiences) are needed to confirm these findings. Nevertheless, the researchers suggest several interventions that might reduce health care inequalities caused by ethnic diversity. For example, health professionals should be encouraged to recognize their uncertainty and should have access to more information and training about ethnic differences. In addition, there should be a shift in emphasis away from relying on knowledge-based cultural information towards taking an “ethnographic” approach. In other words, health professionals should be helped to feel able to ask their patients about what matters most to them as individuals about their illness and treatment.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0040323.
Information on cultural competence and health care is available from the US National Center for Cultural Competence (in English and Spanish) and DiversityRx
PROCEED (Professionals Responding to Cancer in Ethnic Diversity) is a multimedia training tool for educators within the health and allied professions developed from the results of this study; a press release on PROCEED is available from the University of Nottingham
Transcultural Health Care Practice: An educational resource for nurses and health care practitioners is available on the web site of the UK Royal College of Nursing
doi:10.1371/journal.pmed.0040323
PMCID: PMC2071935  PMID: 18001148
10.  eHealth Literacy Among College Students: A Systematic Review With Implications for eHealth Education 
Background
eHealth literacy refers to the ability of individuals to seek, find, understand, and appraise health information from electronic resources and apply such knowledge to addressing or solving a health problem. While the current generation of college students has access to a multitude of health information on the Internet, access alone does not ensure that students are skilled at conducting Internet searches for health information. Ensuring that college students have the knowledge and skills necessary to conduct advanced eHealth searches is an important responsibility particularly for the medical education community. It is unclear if college students, especially those in the medical and health professions, need customized eHealth literacy training for finding, interpreting, and evaluating health- and medical-related information available on the Internet.
Objective
The objective of our review was to summarize and critically evaluate the evidence from existing research on eHealth literacy levels among college students between the ages of 17 and 26 years attending various 4-year colleges and universities located around the world.
Methods
We conducted a systematic literature review on numerous scholarly databases using various combinations of relevant search terms and Boolean operators. The records were screened and assessed for inclusion in the review based on preestablished criteria. Findings from each study that met inclusion criteria were synthesized and summarized into emergent themes.
Results
In the final review we analyzed 6 peer-reviewed articles and 1 doctoral dissertation that satisfied the inclusion criteria. The number of participants in each reviewed study varied widely (from 34 to 5030). The representativeness of the results from smaller studies is questionable. All studies measured knowledge and/or behaviors related to college student ability to locate, use, and evaluate eHealth information. These studies indicated that many college students lack eHealth literacy skills, suggesting that there is significant room for improvement in college students’ ability to obtain and evaluate eHealth information.
Conclusion
Although college students are highly connected to, and feel comfortable with, using the Internet to find health information, their eHealth literacy skills are generally sub par. College students, especially in the health and medical professions, would be well served to receive more customized college-level instruction that improves general eHealth literacy.
doi:10.2196/jmir.1703
PMCID: PMC3278088  PMID: 22155629
eHealth literacy; college students; health occupations; professional preparation
11.  Conceptualising patient empowerment: a mixed methods study 
Background
In recent years, interventions and health policy programmes have been established to promote patient empowerment, with a particular focus on patients affected by long-term conditions. However, a clear definition of patient empowerment is lacking, making it difficult to assess effectiveness of interventions designed to promote it. The aim in this study was to develop a conceptual map of patient empowerment, including components of patient empowerment and relationships with other constructs such as health literacy, self-management and shared decision-making.
Methods
A mixed methods study was conducted comprising (i) a scoping literature review to identify and map the components underpinning published definitions of patient empowerment (ii) qualitative interviews with key stakeholders (patients, patient representatives, health managers and health service researchers) to further develop the conceptual map. Data were analysed using qualitative methods. A combination of thematic and framework analysis was used to integrate and map themes underpinning published definitions of patient empowerment with the views of key UK stakeholders.
Results
The scoping literature review identified 67 articles that included a definition of patient empowerment. A range of diverse definitions of patient empowerment was extracted. Thematic analysis identified key underpinning themes, and these themes were used to develop an initial coding framework for analysis of interview data. 19 semi-structured interviews were conducted with key stakeholders. Transcripts were analysed using the initial coding framework, and findings were used to further develop the conceptual map. The resulting conceptual map describes that patient empowerment can be conceived as a state ranging across a spectrum from low to high levels of patient empowerment, with the level of patient empowerment potentially measurable using a set of indicators. Five key components of the conceptual map were identified: underpinning ethos, moderators, interventions, indicators and outcomes. Relationships with other constructs such as health literacy, self-management and shared decision-making are illustrated in the conceptual map.
Conclusion
A novel conceptual map of patient empowerment grounded in published definitions of patient empowerment and qualitative interviews with UK stakeholders is described, that may be useful to healthcare providers and researchers designing, implementing and evaluating interventions to promote patient empowerment.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-015-0907-z) contains supplementary material, which is available to authorized users.
doi:10.1186/s12913-015-0907-z
PMCID: PMC4488113  PMID: 26126998
Patient empowerment; Definition; Conceptual map; Scoping study; Framework analysis; Thematic analysis
12.  Low Health Literacy and Evaluation of Online Health Information: A Systematic Review of the Literature 
Background
Recent years have witnessed a dramatic increase in consumer online health information seeking. The quality of online health information, however, remains questionable. The issue of information evaluation has become a hot topic, leading to the development of guidelines and checklists to design high-quality online health information. However, little attention has been devoted to how consumers, in particular people with low health literacy, evaluate online health information.
Objective
The main aim of this study was to review existing evidence on the association between low health literacy and (1) people’s ability to evaluate online health information, (2) perceived quality of online health information, (3) trust in online health information, and (4) use of evaluation criteria for online health information.
Methods
Five academic databases (MEDLINE, PsycINFO, Web of Science, CINAHL, and Communication and Mass-media Complete) were systematically searched. We included peer-reviewed publications investigating differences in the evaluation of online information between people with different health literacy levels.
Results
After abstract and full-text screening, 38 articles were included in the review. Only four studies investigated the specific role of low health literacy in the evaluation of online health information. The other studies examined the association between educational level or other skills-based proxies for health literacy, such as general literacy, and outcomes. Results indicate that low health literacy (and related skills) are negatively related to the ability to evaluate online health information and trust in online health information. Evidence on the association with perceived quality of online health information and use of evaluation criteria is inconclusive.
Conclusions
The findings indicate that low health literacy (and related skills) play a role in the evaluation of online health information. This topic is therefore worth more scholarly attention. Based on the results of this review, future research in this field should (1) specifically focus on health literacy, (2) devote more attention to the identification of the different criteria people use to evaluate online health information, (3) develop shared definitions and measures for the most commonly used outcomes in the field of evaluation of online health information, and (4) assess the relationship between the different evaluative dimensions and the role played by health literacy in shaping their interplay.
doi:10.2196/jmir.4018
PMCID: PMC4468598  PMID: 25953147
health information seeking; online health information; information quality; health literacy
13.  Details for Manuscript Number SSM-D-06-01826R1 “Assessing the Oral Literacy Burden in Genetic Counseling Dialogue” 
Social science & medicine (1982)  2007;65(7):1442-1457.
Health literacy deficits affect half the American patient population and are linked to poor health, ineffective disease management and high rates of hospitalization. Restricted literacy has also been linked with less satisfying medical visits and communication difficulties, particularly in terms of the interpersonal and informational aspects of care. Despite growing attention to these issues by researchers and policy makers, few studies have attempted to conceptualize and assess those aspects of dialogue that challenge persons with low literacy skills, i.e., the oral literacy demand within medical encounters.
The current study uses videotapes and transcripts of 152 prenatal and cancer pretest genetic counseling sessions recorded with simulated clients to develop a conceptual framework to explore oral literacy demand and its consequences for medical interaction and related outcomes. Ninety-six prenatal and 81 genetic counselors – broadly representative of the US National Society of Genetic Counselors – participated in the study. Key elements of the conceptual framework used to define oral literacy demand include: (1) use of unfamiliar technical terms; (2) general language complexity, reflected in the application of Microsoft Word grammar summary statistics to session transcripts; and, (3) structural characteristics of dialogue, including pacing, density, and interactivity. Genetic counselor outcomes include self-ratings of session satisfaction, informativeness, and development of rapport. The simulated clients rated their satisfaction with session communication, the counselor’s effective use of nonverbal skills, and the counselor’s affective demeanor during the session.
Sessions with greater overall technical term use were long and used more complex language reflected in readability indices and multi-syllabic vocabulary (measures averaging p<.05). Sessions with a high proportionate use of technical terms were characterized by shorter visits, high readability demand, slow speech speed, fewer and more dense counselor speaking turns and low interactivity (p<.05). The higher the use of technical terms, and the more dense and less interactive the dialogue, the less satisfied the simulated clients were and the lower their ratings were of counselors’ nonverbal effectiveness and affective demeanor (all relationships p<.05). Counselors’ self-ratings of informativeness were also inversely related to use of technical terms (p< .05).
Just as print material can be made more reader-friendly and effective following established guidelines, the medical dialogue may also be made more patient-centered and meaningful by having providers monitor their vocabulary and language, as well as the structural characteristics of interaction, thereby lowering the literacy demand of routine medical dialogue. These consequences are important for all patients but may be even more so for patients with restricted literacy.
doi:10.1016/j.socscimed.2007.05.033
PMCID: PMC2084361  PMID: 17614177
health literacy; oral literacy; patient-provider; communication; genetic counseling; USA
14.  A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary 
Objective
to provide Canadian health professionals with a network of information and recommendations regarding Aboriginal health.
Options
health professionals working with Aboriginal individuals and communities in the area of women’s health care.
Outcomes
improved health status of Aboriginal peoples in Canada.
Appropriateness and accessibility of women’s health services for Aboriginal peoples.
Improved communication and clinical skills of health professionals in the area of Aboriginal health.
Improved quality of relationship between health professionals and Aboriginal individuals and communities.
Improved quality of relationship between health care professionals and Aboriginal individuals and communities.
Evidence
recommendations are based on expert opinion and a review of the literature. Published references were identified by a Medline search of all review articles, randomized clinical control trials, meta-analyses, and practice guidelines from 1966 to February 1999, using the MeSH headings “Indians, North American or Eskimos” and “Health.”* Subsequently published articles were brought to the attention of the authors in the process of writing and reviewing the document. Ancillary and unpublished references were recommended by members of the SOGC Aboriginal Health Issues Committee and the panel of expert reviewers.
Values
information collected was reviewed by the principal author. The social, cultural, political, and historic context of Aboriginal peoples in Canada, systemic barriers regarding the publication of information by Aboriginal authors, the diversity of Aboriginal peoples in Canada, and the need for a culturally appropriate and balanced presentation were carefully considered in addition to more traditional scientific evaluation. The majority of information collected consisted of descriptive health and social information and such evaluation tools as the evidence guidelines of the Canadian Task Force on the Periodic Health exam were not appropriate.
Benefits, costs, and harms
utilization of the information and recommendations by Canadian health professionals will enhance understanding, communication, and clinical skills in the area of Aboriginal health. The resulting enhancement of collaborative relationships between Aboriginal peoples and their women’s health providers may contribute to health services that are more appropriate, effective, efficient, and accessible for Aboriginal peoples in Canada. The educational process may require an initial investment of time from the health professional.
Recommendations
Recommendations were grouped according to four themes: sociocultural context, health concerns, cross-cultural understanding, and Aboriginal health resources. Health professionals are encouraged to learn the appropriate names, demographics, and traditional geographic territories and language groups of the various Aboriginal groups in Canada. In addition, sensitivity to the impact of colonization and current socioeconomic challenges to the health status of Aboriginal peoples is warranted. Health services for Aboriginal peoples should take place as close to home as possible. Governmental obligations and policies regarding determination are recognized. With respect to health concerns, holistic definitions of health, based on Aboriginal perspectives, are put forward. Aboriginal peoples continue to experience a disproportionate burden of health problems. Health professionals are encouraged to become familiar with several key areas of morbidity and mortality. Relationships between Aboriginal peoples and their care providers need to be based on a foundation of mutual respect. Gaps and barriers in the current health care system for Aboriginal peoples are identified. Health professionals are encouraged to work with Aboriginal individuals and communities to address these gaps and barriers. Aboriginal peoples require culturally appropriate health care, including treatment in their own languages when possible. This may require interpreters or Aboriginal health advocates. Health professionals are encouraged to recognize the importance of family and community roles, and to respect traditional medicines and healers. Health professionals can develop their sensitivities towards Aboriginal peoples by participating in workshops, making use of educational resources, and by spending time with Aboriginal peoples in their communities. Aboriginal communities and health professionals are encouraged to support community-based, community-directed health services and health research for Aboriginal peoples. In addition, the education of more Aboriginal health professionals is essential. The need for a preventative approach to health programming in Aboriginal communities is stressed.
Validation
recommendations were reviewed and revised by the SOGC Aboriginal Health Issues Committee, a panel of expert reviewers, and the SOGC Council. In addition, this document was also reviewed and supported by the Assembly of First Nations, Canadian Institute of Child Health, Canadian Paediatric Society, College of Family Physicians of Canada, Congress of Aboriginal Peoples, Federation of Medical Women of Canada, Inuit Tapirisat of Canada, Metis National Council, National Indian and Inuit Community Health Representatives Organization, and Pauktuutit Inuit Women’s Association.
Sponsor
Society of Obstetricians and Gynaecologists of Canada.
PMCID: PMC3653835  PMID: 23682204 CAMSID: cams2752
15.  eHealth Literacy: Extending the Digital Divide to the Realm of Health Information 
Background
eHealth literacy is defined as the ability of people to use emerging information and communications technologies to improve or enable health and health care.
Objective
The goal of this study was to explore whether literacy disparities are diminished or enhanced in the search for health information on the Internet. The study focused on (1) traditional digital divide variables, such as sociodemographic characteristics, digital access, and digital literacy, (2) information search processes, and (3) the outcomes of Internet use for health information purposes.
Methods
We used a countrywide representative random-digital-dial telephone household survey of the Israeli adult population (18 years and older, N = 4286). We measured eHealth literacy; Internet access; digital literacy; sociodemographic factors; perceived health; presence of chronic diseases; as well as health information sources, content, search strategies, and evaluation criteria used by consumers.
Results
Respondents who were highly eHealth literate tended to be younger and more educated than their less eHealth-literate counterparts. They were also more active consumers of all types of information on the Internet, used more search strategies, and scrutinized information more carefully than did the less eHealth-literate respondents. Finally, respondents who were highly eHealth literate gained more positive outcomes from the information search in terms of cognitive, instrumental (self-management of health care needs, health behaviors, and better use of health insurance), and interpersonal (interacting with their physician) gains.
Conclusions
The present study documented differences between respondents high and low in eHealth literacy in terms of background attributes, information consumption, and outcomes of the information search. The association of eHealth literacy with background attributes indicates that the Internet reinforces existing social differences. The more comprehensive and sophisticated use of the Internet and the subsequent increased gains among the high eHealth literate create new inequalities in the domain of digital health information. There is a need to educate at-risk and needy groups (eg, chronically ill) and to design technology in a mode befitting more consumers.
doi:10.2196/jmir.1619
PMCID: PMC3374546  PMID: 22357448
eHealth literacy; digital literacy; health literacy; digital divide; health information search
16.  The Effect of Individual Factors on Health Behaviors Among College Students: The Mediating Effects of eHealth Literacy 
Background
College students’ health behavior is a topic that deserves attention. Individual factors and eHealth literacy may affect an individual’s health behaviors. The integrative model of eHealth use (IMeHU) provides a parsimonious account of the connections among the digital divide, health care disparities, and the unequal distribution and use of communication technologies. However, few studies have explored the associations among individual factors, eHealth literacy, and health behaviors, and IMeHU has not been empirically investigated.
Objective
This study examines the associations among individual factors, eHealth literacy, and health behaviors using IMeHU.
Methods
The Health Behavior Scale is a 12-item instrument developed to measure college students’ eating, exercise, and sleep behaviors. The eHealth Literacy Scale is a 12-item instrument designed to measure college students’ functional, interactive, and critical eHealth literacy. A nationally representative sample of 525 valid college students in Taiwan was surveyed. A questionnaire was administered to collect background information about participants’ health status, degree of health concern, major, and the frequency with which they engaged in health-related discussions. This study used Amos 6.0 to conduct a confirmatory factor analysis to identify the best measurement models for the eHealth Literacy Scale and the Health Behavior Scale. We then conducted a multiple regression analysis to examine the associations among individual factors, eHealth literacy, and health behaviors. Additionally, causal steps approach was used to explore indirect (mediating) effects and Sobel tests were used to test the significance of the mediating effects.
Results
The study found that perceptions of better health status (t520=2.14-6.12, P<.001-.03) and greater concern for health (t520=2.58-6.95, P<.001-.003) influenced college students’ development of 3 dimensions of eHealth literacy and adoption of healthy eating, exercise, and sleep behaviors. Moreover, eHealth literacy played an intermediary role in the association between individual factors and health behaviors (Sobel test=2.09-2.72, P<.001-.03). Specifically, higher levels of critical eHealth literacy promoted students’ health status and their practice of multiple positive health behaviors, including eating, exercise, and sleep behaviors.
Conclusions
Because this study showed that eHealth literacy mediates the association between individual factors and health behaviors, schools should aim to enhance students’ eHealth literacy and promote their health behaviors to help them achieve high levels of critical eHealth literacy. Although some of the study’s hypotheses were not supported in this study, the factors that influence health behaviors are complex and interdependent. Therefore, a follow-up study should be conducted to further explore how these factors influence one another.
doi:10.2196/jmir.3542
PMCID: PMC4275503  PMID: 25499086
demographic; health behavior; mediation; eHealth literacy; quantitative evaluation
17.  Self-rated literacy level does not explain educational differences in health and disease 
Archives of Public Health  2014;72(1):14.
Background
Although literacy is increasingly considered to play a role in socioeconomic inequalities in health, its contribution to the explanation of educational differences in health has remained unexplored. The aim of this study was to investigate the contribution of self-rated literacy to educational differences in health.
Methods
Data was collected from the Healthy Foundation and Lifestyle Segmentation Dataset (n = 4257). Self-rated literacy was estimated by individuals’ self-reported confidence in reading written English. We used logistic regression analyses to assess the association between educational level and health (long term conditions and self-rated health). Self-rated literacy and other potential explanatory variables were separately added to each model. For each added variable we calculated the percentage change in odds ratio to assess the contribution to the explanation of educational differences in health.
Results
People with lower educational attainment level were more likely to report a long term condition (OR 2.04, CI 1.80-2.32). These educational differences could mostly be explained by age (OR decreased by 27%) and could only minimally be explained by self-rated literacy, as measured by self-rated reading skills (OR decreased by 1%). Literacy could not explain differences in cardiovascular condition or diabetes, and only minimally contributed to mental health problems and depression (OR decreased by 5%). The odds of rating ones own health more negatively was higher for people with a low educational level compared to those with a higher educational level (OR 1.83, CI 1.59-2.010), self-rated literacy decreased the OR by 7%.
Conclusion
Measuring self-rated reading skills does not contribute significantly to the explanation of educational differences in health and disease. Further research should aim for the development of objective generic and specific instruments to measure health literacy skills in the context of health care, disease prevention and health promotion. Such instruments are not only important in the explanation of educational differences in health and disease, but can also be used to identify a group at risk of poorer health through low basic skills, enabling health services and health information to be targeted at those with greater need.
doi:10.1186/2049-3258-72-14
PMCID: PMC4036107  PMID: 24872884
Literacy; Health literacy; Literacy measures; Self-rated health; Long term condition; Socio-economic inequalities; Educational inequalities
18.  A Framework for Characterizing eHealth Literacy Demands and Barriers 
Background
Consumer eHealth interventions are of a growing importance in the individual management of health and health behaviors. However, a range of access, resources, and skills barriers prevent health care consumers from fully engaging in and benefiting from the spectrum of eHealth interventions. Consumers may engage in a range of eHealth tasks, such as participating in health discussion forums and entering information into a personal health record. eHealth literacy names a set of skills and knowledge that are essential for productive interactions with technology-based health tools, such as proficiency in information retrieval strategies, and communicating health concepts effectively.
Objective
We propose a theoretical and methodological framework for characterizing complexity of eHealth tasks, which can be used to diagnose and describe literacy barriers and inform the development of solution strategies.
Methods
We adapted and integrated two existing theoretical models relevant to the analysis of eHealth literacy into a single framework to systematically categorize and describe task demands and user performance on tasks needed by health care consumers in the information age. The method derived from the framework is applied to (1) code task demands using a cognitive task analysis, and (2) code user performance on tasks. The framework and method are applied to the analysis of a Web-based consumer eHealth task with information-seeking and decision-making demands. We present the results from the in-depth analysis of the task performance of a single user as well as of 20 users on the same task to illustrate both the detailed analysis and the aggregate measures obtained and potential analyses that can be performed using this method.
Results
The analysis shows that the framework can be used to classify task demands as well as the barriers encountered in user performance of the tasks. Our approach can be used to (1) characterize the challenges confronted by participants in performing the tasks, (2) determine the extent to which application of the framework to the cognitive task analysis can predict and explain the problems encountered by participants, and (3) inform revisions to the framework to increase accuracy of predictions.
Conclusions
The results of this illustrative application suggest that the framework is useful for characterizing task complexity and for diagnosing and explaining barriers encountered in task completion. The framework and analytic approach can be a potentially powerful generative research platform to inform development of rigorous eHealth examination and design instruments, such as to assess eHealth competence, to design and evaluate consumer eHealth tools, and to develop an eHealth curriculum.
doi:10.2196/jmir.1750
PMCID: PMC3222196  PMID: 22094891
eHealth; health literacy; cognition; Bloom’s taxonomy; cognitive task analysis; consumer health
19.  What Do Health Literacy and Cultural Competence Have in Common? Calling for a Collaborative Pedagogy 
Journal of health communication  2012;17(0 3):13-22.
Limited health literacy is recognized as contributing to racial/ethnic and other health disparities through mechanisms of poor understanding and adherence, and limited access to health care. Recent studies have focused on interventions to address literacy gaps between patients and healthcare providers, focusing on communication techniques and redefining the responsibility for closing gaps. Cultural differences between patient and provider, if left unaddressed, have been shown to contribute to poor health outcomes through misunderstanding, value conflicts and disparate concepts of health and illness. The dual challenges of limited health literacy and cultural differences are likely to increase with an expanding, increasingly diverse and older population. There is evidence that training providers to attend to both issues can reduce medical errors, improve adherence, patient-provider-family communication and outcomes of care at both individual and population levels. The two fields continue to have separate trajectories, vocabularies and research agendas, competing for limited curricular resources. We present a conceptual framework for health professions education that attends simultaneously to limited health literacy and cultural differences as a coherent way forward in training culturally competent providers with a common skill-set to deliver patient-centered care that focuses on health disparities reduction.
doi:10.1080/10810730.2012.712625
PMCID: PMC4263028  PMID: 23030558
20.  An oral health literacy intervention for Indigenous adults in a rural setting in Australia 
BMC Public Health  2012;12:461.
Background
Indigenous Australians suffer substantially poorer oral health than their non-Indigenous counterparts and new approaches are needed to address these disparities. Previous work in Port Augusta, South Australia, a regional town with a large Indigenous community, revealed associations between low oral health literacy scores and self-reported oral health outcomes. This study aims to determine if implementation of a functional, context-specific oral health literacy intervention improves oral health literacy-related outcomes measured by use of dental services, and assessment of oral health knowledge, oral health self-care and oral health- related self-efficacy.
Methods/design
This is a randomised controlled trial (RCT) that utilises a delayed intervention design. Participants are Indigenous adults, aged 18 years and older, who plan to reside in Port Augusta or a nearby community for the next two years. The intervention group will receive the intervention from the outset of the study while the control group will be offered the intervention 12 months following their enrolment in the study. The intervention consists of a series of five culturally sensitive, oral health education workshops delivered over a 12 month period by Indigenous project officers. Workshops consist of presentations, hands-on activities, interactive displays, group discussions and role plays. The themes addressed in the workshops are underpinned by oral health literacy concepts, and incorporate oral health-related self-efficacy, oral health-related fatalism, oral health knowledge, access to dental care and rights and entitlements as a patient. Data will be collected through a self-report questionnaire at baseline, at 12 months and at 24 months. The primary outcome measure is oral health literacy. Secondary outcome measures include oral health knowledge, oral health self-care, use of dental services, oral health-related self-efficacy and oral health-related fatalism.
Discussion
This study uses a functional, context-specific oral health literacy intervention to improve oral health literacy-related outcomes amongst rural-dwelling Indigenous adults. Outcomes of this study will have implications for policy and planning by providing evidence for the effectiveness of such interventions as well as provide a model for working with Indigenous communities.
doi:10.1186/1471-2458-12-461
PMCID: PMC3416720  PMID: 22716205
21.  Non-Specialist Psychosocial Interventions for Children and Adolescents with Intellectual Disability or Lower-Functioning Autism Spectrum Disorders: A Systematic Review 
PLoS Medicine  2013;10(12):e1001572.
In a systematic review, Brian Reichow and colleagues assess the evidence that non-specialist care providers in community settings can provide effective interventions for children and adolescents with intellectual disabilities or lower-functioning autism spectrum disorders.
Please see later in the article for the Editors' Summary
Background
The development of effective treatments for use by non-specialists is listed among the top research priorities for improving the lives of people with mental illness worldwide. The purpose of this review is to appraise which interventions for children with intellectual disabilities or lower-functioning autism spectrum disorders delivered by non-specialist care providers in community settings produce benefits when compared to either a no-treatment control group or treatment-as-usual comparator.
Methods and Findings
We systematically searched electronic databases through 24 June 2013 to locate prospective controlled studies of psychosocial interventions delivered by non-specialist providers to children with intellectual disabilities or lower-functioning autism spectrum disorders. We screened 234 full papers, of which 34 articles describing 29 studies involving 1,305 participants were included. A majority of the studies included children exclusively with a diagnosis of lower-functioning autism spectrum disorders (15 of 29, 52%). Fifteen of twenty-nine studies (52%) were randomized controlled trials and just under half of all effect sizes (29 of 59, 49%) were greater than 0.50, of which 18 (62%) were statistically significant. For behavior analytic interventions, the best outcomes were shown for development and daily skills; cognitive rehabilitation, training, and support interventions were found to be most effective for improving developmental outcomes, and parent training interventions to be most effective for improving developmental, behavioral, and family outcomes. We also conducted additional subgroup analyses using harvest plots. Limitations include the studies' potential for performance bias and that few were conducted in lower- and middle-income countries.
Conclusions
The findings of this review support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or lower-functioning autism spectrum disorders. Given the scarcity of specialists in many low-resource settings, including many lower- and middle-income countries, these findings may provide guidance for scale-up efforts for improving outcomes for children with developmental disorders or lower-functioning autism spectrum disorders.
Protocol Registration
PROSPERO CRD42012002641
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Newborn babies are helpless, but over the first few years of life, they acquire motor (movement) skills, language (communication) skills, cognitive (thinking) skills, and social (interpersonal interaction) skills. Individual aspects of these skills are usually acquired at specific ages, but children with a development disorder such as an autism spectrum disorder (ASD) or intellectual disability (mental retardation) fail to reach these “milestones” because of impaired or delayed brain maturation. Autism, Asperger syndrome, and other ASDs (also called pervasive developmental disorders) affect about 1% of the UK and US populations and are characterized by abnormalities in interactions and communication with other people (reciprocal socio-communicative interactions; for example, some children with autism reject physical affection and fail to develop useful speech) and a restricted, stereotyped, repetitive repertoire of interests (for example, obsessive accumulation of facts about unusual topics). About half of individuals with an ASD also have an intellectual disability—a reduced overall level of intelligence characterized by impairment of the skills that are normally acquired during early life. Such individuals have what is called lower-functioning ASD.
Why Was This Study Done?
Most of the children affected by developmental disorders live in low- and middle-income countries where there are few services available to help them achieve their full potential and where little research has been done to identify the most effective treatments. The development of effective treatments for use by non-specialists (for example, teachers and parents) is necessary to improve the lives of people with mental illnesses worldwide, but particularly in resource-limited settings where psychiatrists, psychologists, and other specialists are scarce. In this systematic review, the researchers investigated which psychosocial interventions for children and adolescents with intellectual disabilities or lower-functioning ASDs delivered by non-specialist providers in community settings produce improvements in development, daily skills, school performance, behavior, or family outcomes when compared to usual care (the control condition). A systematic review identifies all the research on a given topic using predefined criteria; psychosocial interventions are defined as therapy, education, training, or support aimed at improving behavior, overall development, or specific life skills without the use of drugs.
What Did the Researchers Do and Find?
The researchers identified 29 controlled studies (investigations with an intervention group and a control group) that examined the effects of various psychosocial interventions delivered by non-specialist providers to children (under 18 years old) who had a lower-functioning ASD or intellectual disability. The researchers retrieved information on the participants, design and methods, findings, and intervention characteristics for each study, and calculated effect sizes—a measure of the effectiveness of a test intervention relative to a control intervention—for several outcomes for each intervention. Across the studies, three-quarters of the effect size estimates were positive, and nearly half were greater than 0.50; effect sizes of less than 0.2, 0.2–0.5, and greater than 0.5 indicate that an intervention has no, a small, or a medium-to-large effect, respectively. For behavior analytic interventions (which aim to improve socially significant behavior by systematically analyzing behavior), the largest effect sizes were seen for development and daily skills. Cognitive rehabilitation, training, and support (interventions that facilitates the relearning of lost or altered cognitive skills) produced good improvements in developmental outcomes such as standardized IQ tests in children aged 6–11 years old. Finally, parental training interventions (which teach parents how to provide therapy services for their child) had strong effects on developmental, behavioral, and family outcomes.
What Do These Findings Mean?
Because few of the studies included in this systematic review were undertaken in low- and middle-income countries, the review's findings may not be generalizable to children living in resource-limited settings. Moreover, other characteristics of the included studies may limit the accuracy of these findings. Nevertheless, these findings support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or a lower-functioning ASD, and indicate which interventions are likely to produce the largest improvements in developmental, behavioral, and family outcomes. Further studies are needed, particularly in low- and middle-income countries, to confirm these findings, but given that specialists are scarce in many resource-limited settings, these findings may help to inform the implementation of programs to improve outcomes for children with intellectual disabilities or lower-functioning ASDs in low- and middle-income countries.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001572.
This study is further discussed in a PLOS Medicine Perspective by Bello-Mojeed and Bakare
The US Centers for Disease Control and Prevention provides information (in English and Spanish) on developmental disabilities, including autism spectrum disorders and intellectual disability
The US National Institute of Mental Health also provides detailed information about autism spectrum disorders, including the publication “A Parent's Guide to Autism Spectrum Disorder”
Autism Speaks, a US non-profit organization, provides information about all aspects of autism spectrum disorders and includes information on the Autism Speaks Global Autism Public Health Initiative
The National Autistic Society, a UK charity, provides information about all aspects of autism spectrum disorders and includes personal stories about living with these conditions
The UK National Health Service Choices website has an interactive guide to child development and information about autism and Asperger syndrome, including personal stories, and about learning disabilities
The UK National Institute for Health and Care Excellence provides clinical guidelines for the management and support of children with autism spectrum disorders
The World Health Organization provides information on its Mental Health Gap Action Programme (mhGAP), which includes recommendations on the management of developmental disorders by non-specialist providers; the mhGAP Evidence Resource Center provides evidence reviews for parent skills training for management of children with intellectual disabilities and pervasive developmental disorders and interventions for management of children with intellectual disabilities
PROSPERO, an international prospective register of systematic reviews, provides more information about this systematic review
doi:10.1371/journal.pmed.1001572
PMCID: PMC3866092  PMID: 24358029
22.  Teaching critical health literacy in the US as a means to action on the social determinants of health 
In spite of improvements in global health over the 20th century, health inequities are increasing. Mounting evidence suggests that reducing health inequities requires taking action on the social determinants of health (SDOH), which include income, education, employment, political empowerment and other factors. This paper introduces an alternative health education curriculum, developed by the US-based non-profit organization Just Health Action, which teaches critical health literacy as a step towards empowering people to achieve health equity. Critical health literacy is defined as an individual's understanding of the SDOH combined with the skills to take action at both the individual and the community level. Prior to describing our curricular framework, we connect the recommendations of the World Health Organization Commission on the SDOH with the objectives of the Ottawa Charter for Health Promotion by arguing that achieving them is reliant on critical health literacy. Then we describe our four-part curricular framework for teaching critical health literacy. Part 1, Knowledge, focuses on teaching the SDOH and the paradigm of health as a human right. Part 2, Compass, refers to activities that help students find their own direction as a social change agent. Part 3, Skills, refers to teaching specific advocacy tools and strategies. Part 4, Action, refers to the development and implementation of an action intended to increase health equity by addressing the SDOH. We describe activities that we use to motivate, engage and empower students to take action on the SDOH and provide examples of advocacy skills students have learned and actions they have implemented.
doi:10.1093/heapro/daq049
PMCID: PMC3218635  PMID: 20729240
social determinants of health; health equity; advocacy; health education
23.  Measuring conceptual health knowledge in the context of oral health literacy: preliminary results 
Objectives
Health literacy encompasses several abilities including word recognition, reading comprehension, communication skills, and conceptual knowledge. To date, conceptual knowledge has not been included in oral health literacy research. This study assesses the validity and reliability of a new instrument and describes conceptual oral health knowledge among a sample of low-income adults.
Methods
One hundred Baltimore adults were administered the Rapid Estimate of Adult Literacy in Medicine (REALM), Short Test of Functional Health Literacy in Adults (Short-TOFHLA), and a new survey of conceptual oral health knowledge. Respondents were also asked about sociodemographics, dental health, and utilization.
Results
Psychometric analysis was used to identify a subset of oral health knowledge questions from the new survey instrument. The resulting Comprehensive Measure of Oral Health Knowledge (CMOHK) was categorized into three levels of knowledge (poor, fair, good). Nearly one-third of Baltimore adults exhibited the lowest level. CMOHK scores were significantly associated with age, education level, and word recognition (REALM). CMOHKs cores were not associated with reading comprehension (Short-TOFHLA) or dental care visits. Instrument reliability was good (Cronbach alpha = 0.74).
Conclusions
This preliminary study yielded a new measure of oral health conceptual knowledge, available for use in future oral health literacy studies. The author presents a conceptual framework of oral health literacy that separates health literacy into four unique components and places decision-making at the center. Future studies are needed to determine whether this framework is supported by empirical data and leads to improvements in oral health and reductions in health disparities.
doi:10.1111/j.1752-7325.2010.00165.x
PMCID: PMC3612930  PMID: 20337901
adult; dental caries; health knowledge, attitudes, practice; mouth neoplasms; oral health; periodontal diseases; questionnaires
24.  Organizing workplace health literacy to reduce musculoskeletal pain and consequences 
BMC Nursing  2015;14:46.
Background
Despite numerous initiatives to improve the working environment for nursing aides, musculoskeletal disorders (pain) is still a considerable problem because of the prevalence, and pervasive consequences on the individual, the workplace and the society. Discrepancies between effort and effect of workplace health initiatives might be due to the fact that pain and the consequences of pain are affected by various individual, interpersonal and organizational factors in a complex interaction. Recent health literacy models pursue an integrated approach to understanding health behavior and have been suggested as a suitable framework for addressing individual, organizational and interpersonal factors concomitantly. Therefore, the aim of the trial is to examine the effectiveness of an intervention to improve health literacy (building knowledge, competences and structures for communication and action) at both the organizational and individual level and reduce pain among nursing aides.
Methods/design
The intervention consists of 2 steps: 1) Courses at the workplace for employees and management in order to organize a joint fundament of knowledge and understanding, and a platform for communication and action about pain prevention in the organization. 2) Organizing a fixed 3-weekly structured dialogue between each employee and her/his supervisor, with particular focus on developing specific plans to prevent and reduce pain and its consequences. This enables the workplace to generate knowledge about employee resources and health challenges and to act and convey this knowledge into initiatives at the workplace.
Discussion
Previous studies to improve health literacy have primarily targeted patients or specific deprived groups in health care or community settings. Recently the idea of the workplace as an arena for improving health literacy has developed emphasizing the organizational responsibility in facilitating and supporting that employees obtain basic knowledge and information needed to understand and take action on individual and occupational health concerns. The literature about workplace health literacy is very limited but points at the importance of educating employees to be able to access, appraise and apply health information and of organizing the infrastructure and communication in the organization. This study suggests a concrete operationalization of health literacy in a workplace setting. Results are expected published in 2016.
doi:10.1186/s12912-015-0096-4
PMCID: PMC4574516  PMID: 26388697
25.  Correlates of health and financial literacy in older adults without dementia 
BMC Geriatrics  2012;12:30.
Background
Recent research has begun to recognize the important influence of literacy levels and how they affect health and wellbeing, especially in older adults. Our study focuses on health and financial literacy, two domains of literacy which previous research has suggested may be significantly related to health and wellbeing. Our study examines the relation of health and financial literacy with health promoting behaviors and health status among community-based older persons.
Methods
We conducted a cross-sectional study using data from the Rush Memory and Aging Project, a community-based cohort study of aging in northeastern Illinois. The study consisted of 556 older persons without dementia, each determined by a clinical evaluation. Health and financial literacy were measured using a series of questions designed to assess the ability to understand and process health and financial information, concepts, and numeracy; the two scores were averaged to yield a total literacy score. Health promoting behaviors, including engagement in cognitive, physical, and social activities, were assessed using self report measures. Indicators of heath status, including cognition (global cognition and five specific cognitive abilities), functional status (basic and instrumental activities of daily living, mobility disability), and mental health (depressive symptoms, loneliness) were assessed.
Results
In a series of regression models adjusted for age, sex, and education, higher total literacy scores were associated with more frequent participation in health promoting behaviors, including cognitive, physical and social activities (all p values <0.05). Higher total literacy scores were associated with higher cognitive function, less disability, and better mental health (all p values < 0.05). Literacy remained associated with health promoting behaviors and health status in fully adjusted models that also controlled for income and the number of chronic medical conditions. Most of the findings were similar for health and financial literacy except that health literacy was more strongly associated with health promoting behaviors whereas financial literacy was more strongly associated with mental health.
Conclusions
Health and financial literacy are associated with more frequent engagement in health promoting behaviors and better health status in older persons without dementia.
doi:10.1186/1471-2318-12-30
PMCID: PMC3459814  PMID: 22691341
Health literacy; Financial literacy; Older adults; Dementia

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