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Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences & Services".

Deadline for manuscript submissions: closed (31 January 2022) | Viewed by 36168

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Special Issue Editors

Dr. Marie-Luise Dierks

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Guest Editor

Hannover Medical School (MHH), Institute for Epidemiology, Social Medicine and Health Systems Research, 30625 Hannover, Germany
Interests: health literacy; self-management for people with chronic disease; patient empowerment; user needs

Dr. Jonas Lander

E-Mail Website
Guest Editor

Hannover Medical School (MHH), Institute for Epidemiology, Social Medicine and Health Systems Research, 30625 Hannover, Germany
Interests: digital health information development and analysis; user needs assessments; health literacy training tools; patient and public involvement in health research

Dr. Melanie Hawkins

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Guest Editor

Centre for Global Health and Equity, Faculty of Health, Arts and Design, Department of Health and Biostatistics, Swinburne University of Technology, Melbourne VIC 3122, Australia
Interests: health literacy; community co-design; validity testing theory and methodology; program evaluation

Special Issue Information

Dear Colleagues,

We are delighted to act as Guest Editors for this Special Issue on “Health Literacy Development among People with Chronic Disease” in the International Journal for Environmental Research and Public Health (Impact Factor: 2.849). Chronic diseases account for a considerable part of the strain on health care systems. They are also burdensome for each affected individual and their families. In recent years, the concept of health literacy has been substantially elaborated on, particularly with regard to its definition, its transfer into the digital world, the development and conduct of interventions, and efforts to improve its measurement.

While advancements are uncontested, the specific demands of chronically ill people for health literacy skills, health literate environments, and challenges attached to these demands remain unchanged. Furthermore, specific aspects of health literacy advancements are either still unresolved or emergent because of dynamic developments in health and health care.

Aspects of unresolved or emergent health literacy advancements include, but are not limited to:

1. thoroughly implementing a modern vision of health literacy that is not a matter of individual deficit, but of organizational and societal responsibility
2. developing, testing and evaluating strategies for organizational health literacy promotion
3. assessing the suitability and effectiveness of digital support tools for chronically ill persons
4. addressing the barriers of low uptake of health literacy interventions by vulnerable groups
5. reviewing the evidence of health literacy interventions for chronically ill people and drawing conclusions about what works and where
6. better describing how established health literacy frameworks and models apply in practice and which elements interact with each other
7. further refining measurement instruments, e.g. with a lesser focus on self-assessments
8. analyzing how health literacy calls to action and actions plans are currently implemented and how they affect chronically ill persons
9. learning from successful cases of chronic disease-specific health literacy training for health professionals
10. proposing and agreeing on universal quality criteria for digital interventions that aim to improve health literacy in people with chronic conditions
11. ethical assessments of facilitators and barriers to high-quality health literacy interventions

Acknowledging that the international health literacy and chronic disease research community is aware of further challenges that extend the above-mentioned aspects, we warmly welcome contributions to these and related aspects to develop health literacy in individuals and communities and advance health literacy research and practice. We also appreciate descriptions of promising and thoroughly tested novel approaches and innovations that aim to empower people with chronic diseases. We encourage authors to submit not only case studies, but moreover, for example, randomized control trials, rapid and systematic reviews, measurement validity testing studies, commentaries, and studies that combine quantitative and qualitative methods.

We are very happy to receive your contributions.

Prof. Dr. Marie-Luise Dierks
Dr. Jonas Lander
Dr. Melanie Hawkins
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

health literacy
chronic disease
health communication
co-creation
measurement validity testing
effectiveness
quality indicators
e-health literacy
ethics
empowerment
health literate organizations
health literate environments

Published Papers (11 papers)

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Editorial

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5 pages, 282 KiB

Open AccessEditorial

Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices

by Jonas Lander, Marie-Luise Dierks and Melanie Hawkins

Int. J. Environ. Res. Public Health 2022, 19(12), 7315; https://doi.org/10.3390/ijerph19127315 - 14 Jun 2022

Cited by 4 | Viewed by 2018 | Correction

Abstract

Chronic diseases account for a considerable part of the strain on health care systems [...] Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

Research

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36 pages, 482 KiB

Open AccessArticle

Health Literacy in the Context of Implant Care—Perspectives of (Prospective) Implant Wearers on Individual and Organisational Factors

by Constanze Hübner, Mariya Lorke, Annika Buchholz, Stefanie Frech, Laura Harzheim, Sabine Schulz, Saskia Jünger and Christiane Woopen

Int. J. Environ. Res. Public Health 2022, 19(12), 6975; https://doi.org/10.3390/ijerph19126975 - 7 Jun 2022

Cited by 3 | Viewed by 1726

Abstract

The continuous development of medical implants offers various benefits for persons with chronic conditions but also challenges an individual’s, and the healthcare system’s, ability to deal with technical innovation. Accessing and understanding new information, navigating healthcare, and appraising the role of the implant in body perceptions and everyday life requires health literacy (HL) of those affected as well as an HL-responsive healthcare system. The interconnectedness of these aspects to ethically relevant values such as health, dependence, responsibility and self-determination reinforces the need to address HL in implant care. Following a qualitative approach, we conducted group discussions and a diary study among wearers of a cochlear, glaucoma or cardiovascular implant (or their parents). Data were analysed using the documentary method and grounded theory. The data reveal the perceptions of implant wearers regarding the implant on (1) the ability to handle technical and ambiguous information; (2) dependence and responsibility within the healthcare system; and (3) the ethical aspects of HL. Knowing more about the experiences and values of implant wearers is highly beneficial to develop HL from an ethical perspective. Respective interventions need to initially address ethically relevant values in counselling processes and implant care. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

16 pages, 658 KiB

Open AccessArticle

Health Literacy-Sensitive Counselling on Early Childhood Allergy Prevention: Results of a Qualitative Study on German Midwives’ Perspectives

by Julia von Sommoggy, Eva-Maria Grepmeier and Janina Curbach

Int. J. Environ. Res. Public Health 2022, 19(7), 4182; https://doi.org/10.3390/ijerph19074182 - 31 Mar 2022

Cited by 6 | Viewed by 2070

Abstract

In Germany, midwives are involved in extensive antenatal and postnatal care. As health professionals, they can play a key role in strengthening health literacy (HL) of parents on how to prevent chronic allergic diseases in their children. The objective of this study is to explore midwives’ perspectives regarding HL-sensitive counselling in early childhood allergy prevention (ECAP). Twenty-four qualitative semi-structured interviews were conducted with midwives, and data were analyzed using qualitative content analysis. Only a small number of study participants were aware of HL as a concept. However, most of these use screening and counselling strategies which consider individual information needs and which support parental HL. HL sensitivity in counselling is largely based on the midwives’ “gut feelings” and counselling experience, rather than on formal education. The midwives were largely aware of evidence-based ECAP recommendations; however, allergy prevention was not seen as a stand-alone topic but as part of their general counselling on infant feeding and hygiene. They found parents to be more open to receiving complex prevention information during antenatal counselling. In order to strengthen midwives’ roles in HL-sensitive ECAP counselling, their formal education should provide them with explicit HL knowledge and counselling skills. ECAP should be an inherent part of antenatal care. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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13 pages, 652 KiB

Open AccessArticle

Patients’ Health Literacy in Rehabilitation: Comparison between the Estimation of Patients and Health Care Professionals

by Mona Voigt-Barbarowicz, Günter Dietz, Nicole Renken, Ruben Schmöger and Anna Levke Brütt

Int. J. Environ. Res. Public Health 2022, 19(6), 3522; https://doi.org/10.3390/ijerph19063522 - 16 Mar 2022

Cited by 5 | Viewed by 2404

Abstract

The term health literacy (HL) comprises the handling of health information and disease-specific and generic self-management skills, especially relevant for patients with chronic conditions. Health care professionals (HCPs) should correctly identify patients’ communication needs and their HL levels. Therefore, the aims of the study were (1) to determine inpatient medical rehabilitation patients’ HL based on self-assessment, (2) to evaluate changes from admission to discharge, (3) to identify HCPs estimation of patients’ HL, and (4) to compare the estimated patient HL by patients and HCPs. A combined cross-sectional and longitudinal study was conducted in an orthopedic rehabilitation center in Germany. The multidimensional Health Literacy Questionnaire (HLQ) was filled in by patients (admission, discharge). An adapted version was administered to HCPs (n = 32) in order to assess HL of individual patients. Data from 287 patients were used for the longitudinal analysis, and comparison was based on n = 278 cases with at least two HL estimations. The results showed a significant increase in HL in five of nine scales with small effect sizes. Moreover, HCPs mostly provided higher scores than patients, and agreement was poor to fair. Differences between the HL estimation might lead to communication problems, and communication training could be useful. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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14 pages, 361 KiB

Open AccessArticle

Use of the English Health Literacy Questionnaire (HLQ) with Health Science University Students in Nepal: A Validity Testing Study

by Shyam Sundar Budhathoki, Melanie Hawkins, Gerald Elsworth, Michael T. Fahey, Jeevan Thapa, Sandeepa Karki, Lila Bahadur Basnet, Paras K. Pokharel and Richard H. Osborne

Int. J. Environ. Res. Public Health 2022, 19(6), 3241; https://doi.org/10.3390/ijerph19063241 - 9 Mar 2022

Cited by 11 | Viewed by 4886

Abstract

Research evidence shows that health literacy development is a key factor influencing non-communicable diseases care and patient outcomes. Healthcare professionals with strong health literacy skills are essential for providing quality care. We aimed to report the validation testing of the Health Literacy Questionnaire (HLQ) among health professional students in Nepal. A cross-sectional study was conducted with 419 health sciences students using the HLQ in Nepal. Validation testing and reporting were conducted using five sources outlined by ‘the 2014 Standards for Educational and Psychological Testing’. The average difficulty was lowest (17.4%) for Scale 4. Social support for health, and highest (51.9%) for Scale 6. Ability to actively engage with healthcare providers. One factor Confirmatory Factor Analysis (CFA) model showed a good fit for Scale 2, Scale 7 and Scale 9 and a reasonable fit for Scale 3 and Scale 4. The restricted nine-factor CFA model showed a satisfactory level of fit. The use of HLQ is seen to be meaningful in Nepal and warrants translation into native Nepali and other dominant local languages with careful consideration of cultural appropriateness using cognitive interviews. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

9 pages, 325 KiB

Open AccessArticle

How Can Cardiac Rehabilitation Promote Health Literacy? Results from a Qualitative Study in Cardiac Inpatients

by Anna Isselhard, Laura Lorenz, Wolfgang Mayer-Berger, Marcus Redaélli and Stephanie Stock

Int. J. Environ. Res. Public Health 2022, 19(3), 1300; https://doi.org/10.3390/ijerph19031300 - 24 Jan 2022

Cited by 2 | Viewed by 2740

Abstract

After acute care of a cardiac event, cardiac rehabilitation helps future disease management. Patients with low health literacy have been shown to have fewer knowledge gains from rehabilitation and higher all-cause mortality after acute cardiac events. Cardiac rehabilitation may be the best channel to target population with low health literacy, yet research on this topic is limited. Consequently, the main aim of the current study was to identify patient perceptions about the health literacy domains that are needed for successful rehabilitation of patients attending German cardiac rehabilitation clinics after an acute cardiac event. Five focus group interviews with 25 inpatients (80% male, 20% female) were conducted at a cardiac rehabilitation clinic in Germany. Patients were eligible to participate if they had sufficient understanding of the German language and had no other debilitating diseases. Patients identified five domains of health literacy for rehabilitation success: knowledge about their health condition; being able to find and evaluate health-related information, being able to make plans and sticking to them, assumption of responsibility over one’s health and the ability to ask for and receive support. The results give an important insight into what patients perceive as important components of their cardiac rehabilitation, which can provide the basis for developing the health literacy of patients and how cardiac rehabilitation clinics respond to the recovery needs of their patients. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

16 pages, 1174 KiB

Open AccessArticle

Preferences and Experiences of People with Chronic Illness in Using Different Sources of Health Information: Results of a Mixed-Methods Study

by Svea Gille, Lennert Griese and Doris Schaeffer

Int. J. Environ. Res. Public Health 2021, 18(24), 13185; https://doi.org/10.3390/ijerph182413185 - 14 Dec 2021

Cited by 10 | Viewed by 3953

Abstract

Background: People with chronic illness are particularly dependent on adequate health literacy (HL), but often report difficulties in accessing, understanding, appraising, and applying health information. To strengthen the HL of people with chronic illness, in-depth knowledge about how they deal with health information is crucial. Methods: To this end, quantitative data from the Second Health Literacy Survey Germany (HLS-GER 2) and qualitative data from seven focus group discussions were used to examine the interest in health information, preferred sources of information as well as experiences and challenges with information management among people with chronic illness. Results: The results show that people with chronic illness have a great interest in health information and use very different sources of health information, preferring personal information from physicians most. The results also point to several challenges in health information management that seem to be influenced by the illness duration as well as by the experiences made with the respective sources. Conclusions: Overall, the study provides important starting points for intervention development for the provision and communication of health-related information, but also to research on health information behavior and HL. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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14 pages, 939 KiB

Open AccessArticle

Organizational Health Literacy in a Hospital—Insights on the Patients’ Perspective

by Johanna Sophie Lubasch, Mona Voigt-Barbarowicz, Nicole Ernstmann, Christoph Kowalski, Anna Levke Brütt and Lena Ansmann

Int. J. Environ. Res. Public Health 2021, 18(23), 12646; https://doi.org/10.3390/ijerph182312646 - 30 Nov 2021

Cited by 6 | Viewed by 2734

Abstract

Health literacy-sensitive communication has been found to be an important dimension of organizational health literacy measured from the patients’ perspective. Little is known about the role of health literacy-sensitive communication in complex care structures. Therefore, our aim was to assess which hospital characteristics (in terms of process organization) and patient characteristics (e.g., age, chronic illness, etc.) contribute to better perceptions of health literacy-sensitive communication, as well as whether better health literacy-sensitive communication is associated with better patient reported experiences. Data were derived from a patient survey conducted in 2020 in four clinical departments of a university hospital in Germany. Health literacy-sensitive communication was measured with the HL-COM scale. Data from 209 patients (response rate 24.2%) were analyzed with a structural equation model (SEM). Results revealed that no patient characteristics were associated with HL-COM scores. Better process organization as perceived by patients was associated with significantly better HL-COM scores, and, in turn, better HL-COM scores were associated with more patient-reported social support provided by physicians and nurses as well as fewer unmet information needs. Investing into good process organization might improve health literacy-sensitive communication, which in turn has the potential to foster the patient–provider relationship as well as to reduce unmet information needs of patients. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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11 pages, 887 KiB

Open AccessArticle

Electronic Health Literacy in Individuals with Chronic Pain and Its Association with Psychological Function

by Elena Castarlenas, Elisabet Sánchez-Rodríguez, Rubén Roy, Catarina Tomé-Pires, Ester Solé, Mark P. Jensen and Jordi Miró

Int. J. Environ. Res. Public Health 2021, 18(23), 12528; https://doi.org/10.3390/ijerph182312528 - 28 Nov 2021

Cited by 9 | Viewed by 2664

Abstract

Electronic health literacy skills and competences are important for empowering people to have an active role in making appropriate health care decisions. The aims of this cross-sectional study were to (1) examine the frequency of use of the Internet for seeking online information about chronic pain, (2) determine the level of eHealth literacy skills in the study sample, (3) identify the factors most closely associated with higher levels of eHealth literacy, and (4) examine self-efficacy as a potential mediator of the association between eHealth literacy and measures of pain and function in a sample of adults with chronic pain. One-hundred and sixty-one adults with chronic pain completed measures assessing internet use, eHealth literacy, pain interference, anxiety, depression, and pain-related self-efficacy. Results indicated that 70% of the participants are active users of the Internet for seeking information related to their health. The level of eHealth literacy skills was not statistically significantly associated with participants’ age or pain interference but was significantly negatively associated with both anxiety and depression. In addition, the findings showed that self-efficacy fully explained the relationship between eHealth literacy and depression and partially explained the relationship between eHealth literacy and anxiety. Self-efficacy should be considered as a treatment target in eHealth literacy interventions, due to its role in explaining the potential benefits of eHealth literacy. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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14 pages, 512 KiB

Open AccessArticle

Health Literacy Co-Design in a Low Resource Setting: Harnessing Local Wisdom to Inform Interventions across Fishing Villages in Egypt to Improve Health and Equity

by Wagida A. Anwar, Nayera S. Mostafa, Sally Adel Hakim, Dalia G. Sos, Christina Cheng and Richard H. Osborne

Int. J. Environ. Res. Public Health 2021, 18(9), 4518; https://doi.org/10.3390/ijerph18094518 - 24 Apr 2021

Cited by 12 | Viewed by 3655

Abstract

Fishermen in low resource settings have limited access to health services and may have a range of health literacy-related difficulties that may lead to poor health outcomes. To provide solutions and interventions based on their needs, co-design is considered best practice in such settings. This study aimed to implement a co-design process as a step towards developing health literacy interventions to improve health and equity in the Borollos Lake region of northern Egypt, a low resource setting with a high prevalence of chronic diseases. This study was guided by the Ophelia (Optimising Health Literacy and Access) process, a widely used and flexible co-design process that seeks to create local and fit-for-purpose health literacy solutions through genuine engagement and participation of community members and relevant stakeholders. Following a health literacy survey using the Health Literacy Questionnaire (HLQ), cluster analysis was conducted to identify the diverse health literacy profiles among the fishing communities. Seven health literacy profiles were identified. Vignettes, representing these profiles, were presented and discussed in ideas generation/co-design workshops with fishermen and health workers to develop intervention ideas. Seventeen fishermen, 22 wives of fishermen, and 20 nurses participated in four workshops. Fifteen key strategies across five themes, including ‘Enhancing education among fishing communities’, ‘Provide good quality health services’, ‘Financial support for health’, ‘Social support for health’, and ‘Promote better health-related quality of life among fishermen’, were generated. The ideas did not only target the individuals but also required actions from the government, non-government organizations, and fishermen syndicates. By harnessing local wisdom, the Ophelia process has created meaningful engagement with the local communities, leading to a wide range of practical and feasible solutions that match the special needs and environment of a low resource setting. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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Other

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13 pages, 2067 KiB

Open AccessStudy Protocol

The Health Literacy in Pregnancy (HeLP) Program Study Protocol: Development of an Antenatal Care Intervention Using the Ophelia Process

by Maiken Meldgaard, Rikke Damkjær Maimburg, Maiken Fabricius Damm, Anna Aaby, Anna Peeters and Helle Terkildsen Maindal

Int. J. Environ. Res. Public Health 2022, 19(8), 4449; https://doi.org/10.3390/ijerph19084449 - 7 Apr 2022

Cited by 5 | Viewed by 3177

Abstract

A pregnant woman needs adequate knowledge, motivation, and skills to access, understand, appraise, and apply health information to make decisions related to the health of herself and her unborn baby. These skills are defined as health literacy: an important factor in relation to the woman’s ability to engage and navigate antenatal care services. Evidence shows variation in levels of health literacy among pregnant women, but more knowledge is needed about how to respond to different health literacy profiles in antenatal care. This paper describes the development protocol for the HeLP program, which aims to investigate pregnant women’s health literacy and co-create health literacy interventions through a broad collaboration between pregnant women, partners, healthcare providers, professionals, and other stakeholders using the Ophelia (Optimising Health Literacy and Access) process. The HeLP program will be provided at two hospitals, which provide maternity care including antenatal care: a tertiary referral hospital (Aarhus University Hospital) and a secondary hospital (the Regional Hospital in Viborg). The Ophelia process includes three process phases with separate objectives, steps, and activities leading to the identification of local strengths, needs and issues, co-design of interventions, and implementation, evaluation, and ongoing improvement. No health literacy intervention using the Ophelia process has yet been developed for antenatal care. Full article

(This article belongs to the Special Issue Health Literacy Development among People with Chronic Diseases: Advancing the State of the Art and Learning from International Practices)

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