Development of a conceptual model of cancer caregiver health literacy.

Caregivers play a vital role in caring for people diagnosed with cancer. However, little is understood about caregivers' capacity to find, understand, appraise and use information to improve health outcomes. The study aimed to develop a conceptual model that describes the elements of cancer caregiver health literacy. Six concept mapping workshops were conducted with 13 caregivers, 13 people with cancer and 11 healthcare providers/policymakers. An iterative, mixed methods approach was used to analyse and synthesise workshop data and to generate the conceptual model. Six major themes and 17 subthemes were identified from 279 statements generated by participants during concept mapping workshops. Major themes included: access to information, understanding of information, relationship with healthcare providers, relationship with the care recipient, managing challenges of caregiving and support systems. The study extends conceptualisations of health literacy by identifying factors specific to caregiving within the cancer context. The findings demonstrate that caregiver health literacy is multidimensional, includes a broad range of individual and interpersonal elements, and is influenced by broader healthcare system and community factors. These results provide guidance for the development of: caregiver health literacy measurement tools; strategies for improving health service delivery, and; interventions to improve caregiver health literacy.

Optimizing health literacy: improving health and reducing health inequities: a selection of information sheets from the health literacy toolkit for low- and middle-income countries

This series of information sheets introduces health literacy, its relevance to public policy, and the ways it can be used to inform the promotion of good health, the prevention and management of communicable and noncommunicable diseases, and the reduction of health inequities. It provides information and links to further resources to assist organizations and governments to incorporate health literaacy responses into practice, service delivery systems, and policy.

Health literacy toolkit for low and middle-income countries: a series of information sheets to empower communities and strengthen health systems

This series of information sheets introduces health literacy, its relevance to public policy, and the ways it can be used to inform the promotion of good health, the prevention and management of communicable and noncommunicable diseases, and the reduction of health inequities. It provides information and links to further resources to assist organizations and governments to incorporate health literacy responses into practice, service delivery systems, and policy.

Responses and relationship dynamics of men and their spouses during active surveillance for prostate cancer: health literacy as an inquiry framework

BACKGROUND: Early stage prostate cancer patients may be allocated to active surveillance, where the condition is observed over time with no intervention. Living with a cancer diagnosis may impose stress on both the men and their spouses. In this study we explore whether the scores of and verbal responses to a Health Literacy Questionnaire can be used to identify individuals in need of information and support and to reveal differences in perception and understanding in health related situations within couples. METHODS: We used the nine-domain Health Literacy Questionnaire (HLQ) as a framework to explore health literacy in eight couples where the men were on active surveillance for prostate cancer progression. Scores were calculated for each domain for both individuals. For each couple differences in scores were also calculated and related to the informants' self-reported experiences and reflections in relation to participating in an active surveillance program. Also an inductive analysis was performed to identify themes in the responses and these themes were compared to those of HLQ. RESULTS: The men tended to score higher than their spouses. There was no consistent relation between scores and the reported experiences and reflections. However, some interesting patterns emerged, e.g. in two of the three couples with the largest within couple differences in HLQ scores, responses revealed discrepancies in how the men and their spouses perceived their situation. Also, three themes emerged which related to six of the HLQ domains, i.e. involvement of spouses and other people around the men; support from and interaction with healthcare professionals; and use of the Internet for information retrieval. CONCLUSIONS: Using the HLQ as an interview framework provided insight into the differences within couples and provided new perspectives on their experiences, including their contact with health professionals and the patient-spouse interaction when dealing with prostate cancer. The HLQ used as a dialogue tool may be an adjunct to assist healthcare providers to understand the need for support and information of men with prostate cancer on active surveillance and the dynamics within couples.

Health literacy and the Internet: a study on the readability of Australian online health information

OBJECTIVE: Almost 80% of Australian Internet users seek out health information online so the readability of this information is important. This study aimed to evaluate the readability of Australian online health information and determine if it matches the average reading level of Australians. METHODS: Two hundred and fifty-one web pages with information on 12 common health conditions were identified across sectors. Readability was assessed by the Flesch-Kincaid (F-K), Simple Measure of Gobbledygook (SMOG) and Flesch Reading Ease (FRE) formulas, with grade 8 adopted as the average Australian reading level. RESULTS: The average reading grade measured by F-K and SMOG was 10.54 and 12.12 respectively. The mean FRE was 47.54, a 'difficult-to-read' score. Only 0.4% of web pages were written at or below grade 8 according to SMOG. Information on dementia was the most difficult to read overall, while obesity was the most difficult among government websites. CONCLUSIONS AND IMPLICATIONS: The findings suggest that the readability of Australian health websites is above the average Australian levels of reading. A quantifiable guideline is needed to ensure online health information accommodates the reading needs of the general public to effectively use the Internet as an enabler of health literacy.

Development of a measure of health literacy for caregivers of people with cancer

Caregivers play a key role in supporting people with cancer. Little is known about challenges that caregivers might have when finding and understanding health information, making health-related decisions, and navigating the healthcare system. Using an innovative mixed-methods approach, the study developed and evaluated a tool to measure cancer caregiver health literacy.

Short Assessment of Health Literacy for Portuguese-Speaking Adults

OBJECTIVE: To develop and validate a short health literacy assessment tool for Portuguese-speaking adults. METHODS: The Short Assessment of Health Literacy for Portuguese-speaking Adults is an assessment tool which consists of 50 items that assess an individual's ability to correctly pronounce and understand common medical terms. We evaluated the instrument's psychometric properties in a convenience sample of 226 Brazilian older adults. Construct validity was assessed by correlating the tool scores with years of schooling, self-reported literacy, and global cognitive functioning. Discrimination validity was assessed by testing the tool's accuracy in detecting inadequate health literacy, defined as failure to fully understand standard medical prescriptions. RESULTS: Moderate to high correlations were found in the assessment of construct validity (Spearman's coefficients ranging from 0.63 to 0.76). The instrument showed adequate internal consistency (Cronbach's alpha=0.93) and adequate test-retest reliability (intraclass correlation coefficient=0.95). The area under the receiver operating characteristic curve for detection of inadequate health literacy was 0.82. A version consisting of 18 items was tested and showed similar psychometric properties. CONCLUSIONS: The instrument developed showed good validity and reliability in a sample of Brazilian older adults. It can be used in research and clinical settings for screening inadequate health literacy.

Short Assessment of Health Literacy for Portuguese-speaking Adults

OBJECTIVE: To develop and validate a short health literacy assessment tool for Portuguese-speaking adults. METHODS: The Short Assessment of Health Literacy for Portuguese-speaking Adults is an assessment tool which consists of 50 items that assess an individual's ability to correctly pronounce and understand common medical terms. We evaluated the instrument's psychometric properties in a convenience sample of 226 Brazilian older adults. Construct validity was assessed by correlating the tool scores with years of schooling, self-reported literacy, and global cognitive functioning. Discrimination validity was assessed by testing the tool's accuracy in detecting inadequate health literacy, defined as failure to fully understand standard medical prescriptions. RESULTS: Moderate to high correlations were found in the assessment of construct validity (Spearman's coefficients ranging from 0.63 to 0.76). The instrument showed adequate internal consistency (Cronbach's alpha=0.93) and adequate test-retest reliability (intraclass correlation coefficient=0.95). The area under the receiver operating characteristic curve for detection of inadequate health literacy was 0.82. A version consisting of 18 items was tested and showed similar psychometric properties. CONCLUSIONS: The instrument developed showed good validity and reliability in a sample of Brazilian older adults. It can be used in research and clinical settings for screening inadequate health literacy.

Health literacy among young adults: a short survey tool for public health and health promotion research

Health literacy (HL) is context-specific. In public health and health promotion, HL in the private realm refers to individuals' knowledge and skills to prevent disease and to promote health in everyday life. However, there is a scarcity of measurement tools explicitly geared to private realm contexts. Our aim was to develop and test a short survey tool that captures different dimensions of HL in the context of family and friends. We used cross-sectional data from the Swiss Federal Surveys of Adolescents from 2010 to 2011, comprising 7983 males and 366 females between 18 and 25 years. HL was assessed through a set of eight items (self-reports). We used principal component analysis to explore the underlying factor structure among these items in the male sample and confirmatory factor analysis to verify the factor structure in the female sample. The results showed that the tested item set represented dimensions of functional, interactive and critical HL. Two sub-dimensions, understanding versus finding health-relevant information, denoted functional HL. Interactive and critical HL were each represented with two items. A sum score based on all eight items (Cronbach's α: 0.64) showed expected positive associations with own and parental education among males and females (p < 0.05). The short item set appears to be a feasible measurement tool to assess HL in the private realm. Its broader application in survey studies may help to improve our understanding of how this form of HL is distributed in the general population.