‘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; Wood, Fiona; Davies, Malcolm; Edwards, Adrian

doi:10.1111/hex.12093

Cited by 291 publications

(236 citation statements)

References 25 publications

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“…However, measured diabetes knowledge was low, which is in keeping with findings from other studies [54]. This underscores the observation that experiential and distributed health literacy and peer-based education may be more beneficial in these populations than a traditional approach to diabetes education [55][56][57]. Both the context and content of diabetes related education should be tailored appropriately, and in a manner that facilitates the incorporation of this knowledge into the diabetes lived experience.…”

Section: Discussionsupporting

confidence: 82%

Diabetes Knowledge, Attitudes and Behaviors Among Somali and Latino Immigrants

Njeru

Formea

Osman³

et al. 2015

J Immigrant Minority Health

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Persons from Somalia constitute the largest group of immigrants and refugees from Africa among whom diabetes-related health disparities are well documented. As one of the first steps toward developing a behavioral intervention to address diabetes among Somali immigrants and refugees, we administered a face to face interview-based survey to Somali and Latino adults with diabetes in a single community to assess diabetes knowledge, attitudes and behaviors. Respondents (N = 78) reported several barriers to optimal diabetes management for physical activity and glucose self-monitoring, as well as a high burden of disease and negative perceptions of diabetes. High participant engagement in disease management, self-efficacy, and social support were important assets. Similarities suggest that the shared experiences of immigration and related systemic socioeconomic and linguistic factors play a significant role in the understanding and self-management of diabetes in these populations. Together with previously collected qualitative work, the survey findings will inform development of a behavioral intervention to improve outcomes and reduce diabetes-related health disparities among immigrant and refugee groups to the U.S.

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Section: Discussionsupporting

confidence: 82%

Diabetes Knowledge, Attitudes and Behaviors Among Somali and Latino Immigrants

Njeru

Formea

Osman³

et al. 2015

J Immigrant Minority Health

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“…Instrumental and emotional support provided by robust social networks and informal caregivers is likely to overcome such barriers [1516] by assisting asthmatics in obtaining, processing, understanding and applying basic health information and services needed to make appropriate health decisions and meet daily self-management demands [171819]. Improvements in asthma integrated care might thus be achieved through in-depth knowledge about how health literacy is dispersed through a group of individuals or a community is considered – distributed health literacy – as coined by Edwards et al [20]. It is particular critical for health literacy interventions in communities to identify health mediators and their roles in an asthmatic’s tasks related to health literacy, that is, anyone or anything which ‘ makes his, her or its literacy skills available to others, on a formal or informal basis, for them to accomplish specific literacy purposes ’ [21], such as the use of regular inhaled preventive or prophylactic medication namely, help to quit smoking, motivation to practice physical exercise and lost weight, and help in avoiding professionals risk environments [22].…”

Section: Introductionmentioning

confidence: 99%

“…Among patients living a long-term health condition, such as asthma, distributed health literacy emerges as a potential resource for managing one’s health, communicating with health professionals and making health decisions [20]. This approach epitomizes the current worldwide movement towards integrated, people-centred health services [27], co-production of knowledge, shared care and shared governance for health sustaining the provision of tailored health services that aim to synchronize care both with and around the needs of service users, their families and the communities, meeting an individual’s or group’s specific characteristics within the context of their lives [27].…”

Section: Introductionmentioning

confidence: 99%

The Role of Distributed Health Literacy in Asthma Integrated Care: A Public Medical Context from Portugal

Abreu¹,

Nunes²,

Taylor³

et al. 2018

International Journal of Integrated Care

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Background:Improvements in asthma integrated care might be achieved through in-depth knowledge about how health literacy is dispersed through a group. This study intends to map out health literacy mediators (those who makes his/her literacy skills available to others for them to accomplish specific literacy purposes) and how they enable self-management skills in patients with asthma.Methods:Twenty interviews were conducted in a Primary Care Center of Porto using the McGill Illness Narrative Interview. Data were thematically analyzed as case-based and process-tracing-oriented.Results:Interviewees with a dense network of mediators revealed a low impact of asthma on their lives, dependence on primary care physician for instrumental support and dependence on family members to provide emotional/pragmatic support. Interviewees who relied on a restricted network of mediators (belonging to formal sources of health services and providing informational support) described episodes of crisis as disruptive and demonstrated a reactive approach to self-management skills.Conclusions:The roles performed by core health mediators (health professionals, family/friends, media) in support of asthma management varied according to patients’ narratives of minimization/disruption, connected to dense/restricted social networks. To clarify the boundaries of responsibility-shifting and to enrich support provided by formal sources of health services and peer education groups is needed.

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“…how people rely on formal and informal mediators (e.g. health professionals, family members, friends and media) for support performing health related tasks, such as managing medications, 12,13 as well as how the medication information is presented. 14 In this issue, Joana Revés and colleagues 1 describe the rapid growth in so-called predatory journals (fake or fraudulent journals offering publication for payment without peer review or publishing services) and advise students on how to avoid the trap of publishing in them.…”

mentioning

confidence: 99%

Resposta à Carta ao Editor: “Prevalência de Literacia em Saúde Inadequada em Portugal Medida com o Newest Vital Sign”

et al. 2018

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suggest that the Portuguese version of the Newest Vital Sign (NVS) should not be used to assess older adults in clinical practice because of a floor effect. We disagree. A floor effect is a problem when the performance on the test does not reflect the true performance in the domain being assessed.1 This is not the case here. We are not classifying older people incorrectly by using the NVS. Another study using a different health literacy instrument, one that asks people questions about their perceived difficulty performing health-related tasks, has also documented a very high proportion of limited health literacy in the older Portuguese population. 2In addition, it is also not the case that the educational level of the population used to validate the instrument was very different from that of the Portuguese population. The subgroup of 101 people from the general population in our study included 30.7% of participants with less than five years of schooling (the oldest of whom was 86 years old). This figure is close to schooling estimates from the Portuguese population near the time the study was conducted.3 Furthermore, when we compared this subgroup with the other more literate groups (physicians, health researchers, engineering researchers) we were not testing divergent validity (i.e. assessing whether constructs that are not supposed to be related are actually unrelated) but known-groups validity, which relies on administering the instrument to different groups that logically should have different levels of the construct to confirm whether the hypothesised difference was reflected in the scores of the groups. 4 We do agree with the authors in that the NVS should not be used as a proxy for poor health outcomes or poor medication self-management capacity. Concerning outcomes, the NVS can and has been used successfully to study the association between health literacy and health outcomes in studies that included older persons, but as a determinant and not as a proxy.5 Moreover, the study by Schillinger et al 6 cited by the authors to illustrate this point used the short version of the TOFHLA, 7 an instrument composed of two short cloze passages (an exercise where key words are deleted from a text and respondents are asked to fill in the blanks) and four very easy numeracy questions, which is quite unlike the NVS, as findings from studies using both the instruments can confirm. 8,9 Regarding self-management capacity, we also agree that it should not be used alone in samples with very low expected health literacy. If it is important to assess the numeracy component of health literacy (to assess skills related to timing, scheduling, and dosing of medications as well as numeric concepts needed to understand and act upon directions and recommendations, such as in the assessment of risk perception of an intervention) 10 in elderly samples, the NVS could be used in combination with another very brief instrument such as the Medical Term Recognition Test (METER), which has not displayed a floor effect.11 Nevertheless we argu...

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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

Cited by 291 publications

References 25 publications

Diabetes Knowledge, Attitudes and Behaviors Among Somali and Latino Immigrants

Diabetes Knowledge, Attitudes and Behaviors Among Somali and Latino Immigrants

The Role of Distributed Health Literacy in Asthma Integrated Care: A Public Medical Context from Portugal

Resposta à Carta ao Editor: “Prevalência de Literacia em Saúde Inadequada em Portugal Medida com o Newest Vital Sign”

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