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'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition.

ABSTRACT: The role of one's social network in the process of becoming health literate is not well understood. We aim to explain the 'distributed' nature of health literacy and how people living with a long-term condition draw on their social network for support with health literacy-related tasks such as managing their condition, interacting with health professionals and making decisions about their health.This paper reports a longitudinal qualitative interview and observation study of the development and practice of health literacy in people with long-term health conditions, living in South Wales, UK. Participants were recruited from health education groups (n = 14) and community education venues (n = 4). The 44 interview transcripts were analysed using the 'Framework' approach.Health literacy was distributed through family and social networks, and participants often drew on the health literacy skills of others to seek, understand and use health information. Those who passed on their health literacy skills acted as health literacy mediators and supported participants in becoming more health literate about their condition. The distribution of health literacy supported participants to manage their health, become more active in health-care decision-making processes, communicate with health professionals and come to terms with living with a long-term condition. Participants accessed health literacy mediators through personal and community networks.Distributed health literacy is a potential resource for managing one's health, communicating with health professionals and making health decisions.

SUBMITTER: Edwards M

PROVIDER: S-EPMC5060848 | biostudies-other | 2015 Oct

REPOSITORIES: biostudies-other

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'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition.

Edwards Michelle M Wood Fiona F Davies Myfanwy M Edwards Adrian A

Health expectations : an international journal of public participation in health care and health policy 20130617 5

<h4>Background</h4>The role of one's social network in the process of becoming health literate is not well understood. We aim to explain the 'distributed' nature of health literacy and how people living with a long-term condition draw on their social network for support with health literacy-related tasks such as managing their condition, interacting with health professionals and making decisions about their health.<h4>Design</h4>This paper reports a longitudinal qualitative interview and observa ...[more]

PMID: 23773311

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Project description:BACKGROUND:Health literacy is strongly associated with health outcomes and is important for health policy and service delivery. Low health literacy was reported in 59% of Australian adults, however, there is no national data on the health literacy of Aboriginal and Torres Strait Islander (ATSI) peoples. The ATSI population in Australia experience a notable gap in health outcomes compared with non-Indigenous Australians which is due, in part to a higher prevalence of chronic diseases. The health outcome gap is more pronounced in rural and remote locations. This study aims to establish the health literacy profile of ATSI adults with chronic disease living in remote North-West Queensland Australia, and to investigate associations between the Health Literacy Questionnaire (HLQ) domains and self-reported chronic disease and demographic characteristics. METHODS:Using a cross-sectional design, 200 ATSI adults with a diagnosis of chronic disease/s (cardiovascular disease, diabetes, respiratory disease and/or chronic kidney disease) were recruited from two sites with the assistance of Aboriginal Health Workers. Data were collected using the HLQ, a multidimensional 44 item instrument to assess nine domains of health literacy. Demographic and health data were also collected. Analysis of variance using backwards modelling was used to determine predictors of health literacy. RESULTS:Participants were mostly male (53.5%) and aged between 19 and 89 years. The most prevalent chronic disease was cardiovascular disease (74%) followed by diabetes (67.5%). More than half (62%) had two or more chronic diseases. There was at least one independent predicator for each of the nine health literacy domains. Age, number of chronic diseases, gender, and level of education were all highly significant predictors of health literacy. CONCLUSION:Improved health literacy will enable individuals to take an active role in their health. Understanding the health literacy of ATSI adults is a crucial first step. Our findings can assist Australian healthcare organisations to review their health literacy responsiveness and examine ways to improve patients' needs and health capabilities to better support people to engage in effective self-management for chronic diseases.

Project description:Background:Previous health literacy research has often focused on individual functional health literacy, ignoring the cultural contexts through which many people experience health care. Objective:We aimed to explore the nature of maternal health literacy among ethnic minority women in a low-resource setting in Vietnam. Methods:Using a qualitative approach, we conducted focus groups with 42 pregnant women, mothers, and grandmothers of children younger than age 5 years from the Thai and Hmong ethnic groups. Semi-structured interviews were conducted with key informants and thematic analysis was performed. Key Results:The findings of our thematic analysis aligned well with the concept of distributed health literacy. We found that ethnic minority women drew upon family and social networks of health literacy mediators to share knowledge and understanding, assess and evaluate information, communicate with health professionals, and support decision-making. Family members were also involved in making health decisions that had the potential to negatively affect women and children's health. Conclusions:Family members are an important source of information for ethnic minority women, and they influence decision-making. Relatives and husbands of pregnant women could be included in maternal health education programs to potentially strengthen the health literacy of the whole community. The distributed health literacy concept can be used to strengthen health promotion messages and to reduce the risk of negative health outcomes. [HLRP: Health Literacy Research and Practice. 2019;3(1):e31-e42.]. Plain Language Summary:Distributed health literacy refers to how health literacy skills and practices are distributed through social networks. This concept applies well to the maternal health context in Vietnam. Older women are trusted sources of information, and family influences decision-making during pregnancy. Women's limited autonomy increases the importance of family involvement. Distributed health literacy could be used to strengthen health promotion messages.

Project description: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.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.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).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.

Dataset Information

'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition.

Publications

'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition.

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