Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy-A qualitative study.

Childhood epilepsy is often complicated by neurobehavioral comorbidities, and parents are expected to actively engage in managing the condition. Insufficient parental health literacy (HL) has been associated with reduced health outcomes for children with epilepsy. Little is known about the parents' experiences of information seeking, social support, navigating the healthcare system, and interactions with healthcare professionals and how these skills may contribute to the development of sufficient HL. This study explored parents' experiences of their caregiver responsibility and the development of their HL in relation to caring for their child with epilepsy. Ten parents of children under 12 years of age with epilepsy were purposedly sampled and interviewed individually, using semi-structured interviews. The interviews were analyzed using qualitative content analysis, in line with Graneheim & Lundman. The analyses resulted in three themes, each comprising two sub-themes. The themes were: (1) Alone with the responsibility, (2) The combat for information and support, and (3) Developing vigilance and distrust in system competence. Lack of flexibility in healthcare services, insufficient multidisciplinary collaboration, and unclear treatment provider responsibility made the parents feel alone in the caregiver's responsibility. Poor local provider competence related to childhood epilepsy was a barrier to developing sufficient HL. A trusting relationship with professionals and timely access to competent health services were facilitators for developing HL. Higher HL made the parents more critical for the healthcare services, which triggered vigilance and reduced their trust in the professionals' information. For the parents, developing and maintaining HL was a continuous emotional, cognitive, and social process. Health information and care support need to be adjusted to the severity of the child's condition, the resources are available, and the parent's HL. The results of this study may contribute to the development of future interventions for strengthening parental HL in the childhood epilepsy context.

eHealth literacy among hospital health care providers: a systematic review.

BACKGROUND: eHealth literacy is a key concept in the implementation of eHealth resources. However, most eHealth literacy definitions and frameworks are designed from the perceptive of the individual receiving eHealth care, which do not include health care providers' eHealth literacy or acceptance of delivering eHealth resources. AIMS: To identify existing research on eHealth literacy domains and measurements and identify eHealth literacy scores and associated factors among hospital health care providers. METHODS: This systematic review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 checklist. A systematic literature search was conducted in MEDLINE, Cinahl, Embase, Scopus, PEDro, AMED and Web of Science. Quantitative studies assessing eHealth literacy with original research, targeting hospital health care providers were included. Three eHealth literacy domains based on the eHealth literacy framework were defined a priori; (1) Individual eHealth literacy, (2) Interaction with the eHealth system, and (3) Access to the system. Pairs of authors independently assessed eligibility, appraised methodological quality and extracted data. RESULTS: Fourteen publications, of which twelve publications were conducted in non-Western countries, were included. In total, 3,666 health care providers within eleven different professions were included, with nurses being the largest group. Nine of the included studies used the eHealth literacy scale (eHEALS) to measure eHealth literacy, representing the domain of individual eHealth literacy. A minority of the studies covered domains such as interaction with the eHealth system and access to the system. The mean eHEALS score in the studies ranged from 27.8 to 31.7 (8-40), indicating a higher eHealth literacy. One study reported desirable eHealth literacy based on the Digital Health Literacy Instrument. Another study reported a relatively high score on the Staff eHealth literacy questionnaire. eHealth literacy was associated with socio-demographic factors, experience of technology, health behaviour and work-related factors. CONCLUSIONS: Health care providers have good individual eHealth literacy. However, more research is needed on the eHealth literacy domains dependent on interaction with the eHealth system and access to the system. Furthermore, most studies were conducted in Eastern and Central-Africa, and more research is thus needed in a Western context. TRIAL REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews (CRD42022363039).

Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy.

Parents of children with epilepsy play a key role in the management of their child's condition. Their level of health literacy (HL), which refers to their ability to seek, understand, assess, remember, and utilize health information, is essential for handling the child optimally. The aim of this study was to investigate characteristics associated with high and low levels of different dimensions of HL in parents. HL was assessed with the multidimensional Health Literacy Questionnaire (parents' version) and the electronic Health Literacy Scale, using data from a cohort of 254 parents of children <12 years. Bivariate correlation and multiple hierarchal linear regression (STATA version 16 SE) were used to investigate variables associated with HL. Self-efficacy (St. ß = 0.14-0.34) was the only variable that predicted higher scores on every HL scale. Being older than 35 years (St. ß = 0.18-0.21), level of education (St. ß = 0.16-0.27), and the child having a coordinator of services (St. ß = 0.16-0.28) were associated with higher scores, while sick leave due to the child's epilepsy (St. ß = -0.13 to -0.16), child comorbidities (St. ß = -0.15 to -0.19), and higher levels of mental distress (St. ß = -0.13 to -0.19) were associated with lower scores in several of the different HL dimensions. A total of 44.8% of the parents scored over the cutoff (≥1.85) predicting a mental disorder on the Hopkins symptom checklist. This is the first study to investigate multidimensional parental HL in a childhood epilepsy context. Our results highlight the need to investigate multiple variables, especially mental distress, to determine characteristics that may predict low parental HL. Further qualitative studies are needed to explore the underlying reasons for the parents' HL scores and to develop inventions tailored to meet different HL needs.

The Parent Health Literacy Questionnaire (HLQ-Parent). Adaptation and validity testing with parents of children with epilepsy.

AIMS: The aim of this study was to adapt the Health Literacy Questionnaire (HLQ) in English and Norwegian for use with parents. METHODS: The research group evaluated all HLQ items and, where relevant, modified them to refocus the attribution of care to that of a child by a parent. Five cognitive interviews with parents were undertaken to gain a detailed depiction of the meanings and processes they used to respond to the HLQ items. Assessment of the psychometric properties of the revised HLQ was undertaken using data from a cross-sectional survey of 254 parents of children with epilepsy. Analysis included internal consistency (Cronbach's alpha) and confirmatory factor analysis (CFA). RESULTS: Some 22 out of 44 items and the names of three domains were modified (e.g. attribution changed from 'me' to 'my child'). Cognitive interviews indicated that parents interpreted the HLQ-Parent items in the way intended. All but three factor loadings were high to acceptable. All nine HLQ scales showed satisfactory to good internal consistency (Cronbach's alpha 0.70 to 0.87). When fitting one-factor CFA models, correlated residuals were required for four scales to generate an acceptable fit. One scale, '8. Ability to find good health information', required inclusion of two correlated residuals to generate an acceptable CFA model fit, indicating that further work on this scale is warranted. CONCLUSIONS: The results from both the adaptation process and the CFA analysis supported the relevance, understanding and theoretical structure of the instrument in a parental context.

A validation study of the Norwegian version of the Health Literacy Questionnaire: A robust nine-dimension factor model.

Objective: This study aimed to undertake a rigorous psychometric evaluation of the nine-scale Norwegian version of the Health Literacy Questionnaire (HLQ) based on data from a sample of people with psoriasis. Methods: Cross-sectional survey data were collected from 825 adults with psoriasis who previously participated in the Norwegian Climate Heliotherapy programme. To investigate the factorial validity of the Norwegian HLQ, confirmatory factor analyses were carried out using Stata. Results: A highly restricted model fit with no cross-loadings or correlated residuals was acceptable for three of the nine scales ('Feeling understood and supported by health-care providers', 'Appraisal of health information' and 'Ability to find good health information'). After minor model adjustments of the other scales, one-factor models were acceptable. All scales showed acceptable internal consistency, with Cronbach's alpha ranging from 0.71 to 0.87. Except for three items, all items had high to acceptable factor loadings. Conclusions: This study of the Norwegian HLQ replicates the original factor structure of the Australian HLQ, indicating the questionnaire has cogent and independent scales with good reliability. Researchers, programme implementers and policymakers could use the Norwegian version of the HLQ with confidence to generate reliable information on health literacy for different purposes.

Alexithymia, Illness Perception and Self-management Competency in Psoriasis.

Alexithymia, defined as difficulty in describing or recognizing emotions, has been shown to be connected with psoriasis, but its relationship with self-management of psoriasis has not been explored. The aim of this study was to assess the frequency of alexithymia and its relationship with self-management and illness perception in the context of psoriasis. A total of 163 patients participating in 3 weeks of climate heliotherapy (CHT) at Gran Canaria were assessed for alexithymia using the Toronto Alexithymia Scale (TAS-20) at baseline. Self-reported measures for self-management (Health Education Impact Questionnaire; heiQ), and disease severity and illness perception (Brief Illness Perception Questionnaire; BIPQ) were assessed twice. Of all patients, 14.1% were characterized as alexithymic and 22.1% scored in the intermediate range. Alexithymic patients scored significantly worse in all heiQ domains, and reported worse illness perception. However, there were no between-group differences in heiQ or BIPQ change from baseline to after CHT. In conclusion, this study shows that alexithymia indicates inferior self-management and reaffirms the associations with illness perception. Further research is required into these relationships.

Fluctuating patterns in quality of life outcomes among patients with moderate and severe stages of chronic obstructive pulmonary disease.

PURPOSE: How changes in depression and anxiety and well-being may fluctuate with changes in disease-specific quality of life (QOL), and further how changes in well-being may fluctuate with changes in depression and anxiety among patients with moderate and severe chronic obstructive pulmonary disease (COPD). METHODS: In a longitudinal study (as part of a randomized controlled trial), we investigated 150 patients with moderate and severe COPD at baseline, 143 at 4 weeks, and 130 at 4 months. Lung function was tested, and a questionnaire was completed at all appointments. The questions captured demographic variables, disease-specific QOL (St. George's Respiratory Questionnaire), anxiety and depression (Hospital Anxiety and Depression Scale), and well-being (World Health Organization-5 Well-being Index). Multiple regression analyses were performed. RESULTS: At 4 weeks and 4 months, changes in disease-specific QOL (st. ß = -0.35, p < 0.001, partial (p) R (2) = 11-12 %), depression (st. ß = -0.32 to -0.36, p < 0.001, pR (2) = 9-12 %), and anxiety (st. ß = -0.21 to -0.40, p < 0.02-0.001, pR (2) = 4-15 %) were significantly associated with changes in well-being. Changes in disease-specific QOL were significantly associated with changes in anxiety at 4 months (st. ß = 0.21, p = 0.02, pR (2) = 4 %), but not with changes in depression. CONCLUSIONS: Changes in disease-specific QOL, depression, and anxiety were associated with changes in well-being. Changes in disease-specific QOL contributed slightly to changes in anxiety, but not to changes in depression. Well-being may capture some aspects of mental QOL in COPD patients better than depression and anxiety.

Cost-utility Analysis of Supported Self-management with Motiva-tional Interviewing for Patients with Psoriasis.

There are few studies evaluating the cost-effectiveness of self-management interventions for patients with psoriasis. Motivational interviewing (MI) as a telephone follow-up after climate-heliotherapy was effective on several clinical parameters, but its cost-effectiveness is unknown. A cost-utility analysis was conducted alongside a randomized controlled trial (RCT) comparing MI with usual care. A total of 169 Norwegian patients were included. A within-trial analysis compared the costs and quality-adjusted life years (QALYs). Utilities were measured with the 15D instrument, supplemented with Dermatological Life Quality Index (DLQI). A time-integrated summary score defined the clinical effects. QALYs were adjusted for baseline differences. MI provided equivalent quality of life and utility (15D: -0.0022 QALYs (95% Cl -0.02, 0.01), p = 0.77, and DLQI: -0.62 QALYs (95%CI -0.65, 0.41), p = 0.24, at lower costs €-1103 (-2293, 87), p = 0.058, compared with treatment-as-usual. The MI intervention was thus cost-effective. This result was more evident when using the DLQI as outcome measure compared with 15D.

Positive changes in self-management and disease severity following climate therapy in people with psoriasis.

The aim of this study was to investigate the impact of climate therapy on self-management in people with psoriasis. This was a prospective study of 254 adults with chronic psoriasis who participated in a 3-week climate therapy (CT) programme. The 8-scale Health Education Impact Questionnaire (heiQ) was completed at baseline, after 3 weeks of CT, and 3 months later. Change was assessed using paired sample t-tests mean (95% confidence interval) change scores (range 1-4). All heiQ scales showed statistically significant improvement after 3 weeks of CT. The greatest improvement was in Health-directed activity, followed by Emotional distress, and Skill and technique acquisition. At the 3-month follow-up, only the Emotional distress scale remained improved. In addition, disease severity (self-administered PASI; SAPASI) improved significantly from before CT to 3 weeks and 3 months after CT. This study suggests that CT provides a range of benefits that are important to people with psoriasis, particularly in the short term. A challenge is how to achieve long-term benefits.

Clinical characteristics associated with illness perception in psoriasis.

Knowledge of illness perception may aid the identification of groups of patients with a higher risk of coping poorly with the demands of their illness. This study aims to investigate associations between illness perception, clinical characteristics, patient knowledge, quality of life and subjective health in persons with psoriasis. The present study was based on cross-sectional data from patients awaiting climate therapy in Gran Canaria. We included 254 eligible patients (74%) who completed a questionnaire including the revised Illness Perception Questionnaire, the Psoriasis Knowledge Questionnaire, and the Dermatological Life Quality Index. Disease severity was measured using the Psoriasis Area and Severity Index. Several statistically significant associations between clinical characteristics, knowledge and various illness perception dimensions were found. Illness perception was also significantly related to disease-specific quality of life and subjective health. These findings contradict previous findings, which suggested that objective disease factors are not relevant to illness perception in psoriasis.

Effectiveness of a health communication intervention on health literacy in the first year following kidney transplantation - A randomized controlled study.

OBJECTIVE: This study aimed to evaluate the effect of a new health communication intervention focusing on knowledge management skills on health literacy and medication adherence during the first year following kidney transplantation. METHODS: We randomized 195 patients during 2020-2021, to either intervention- or control group. Questionnaires were completed at baseline and at 12 months post-transplantation with a 12-month response rate of 84%. Health literacy was measured by the multidimensional Health Literacy Questionnaire (HLQ) instrument. Medication adherence was measured by the self-reported questionnaire (BAASIS©). RESULTS: Results showed that the intervention group had a significant increase in 2 HLQ domains compared to the control group capturing the "ability to appraise health information" Domain 5, (p-value = 0.002) and the "ability to navigate the healthcare system" Domain 7, (p-value <0.04). The effect sizes of SRM were 0.49 (Domain 5) and 0.33 (Domain 7). Medication adherence was comparable in the groups at any measure points. CONCLUSIONS: This study contributes to important knowledge about how a health communication intervention focusing on knowledge translation using motivational interviewing techniques positively strengthens health literacy in kidney transplant recipients. PRACTICAL IMPLICATIONS: Current patient education practice may benefit from focusing on knowledge translation in combination with motivational interview technique.

Impacts of a health literacy-informed intervention in people with chronic obstructive pulmonary disease (COPD) on hospitalization, health literacy, self-management, quality of life, and health costs - A randomized controlled trial.

OBJECTIVE: To compare the effect of motivational interviewing (MI) and tailored health literacy (HL) follow-up with usual care on hospitalization, costs, HL, self-management, Quality of life (QOL), and psychological stress in people with chronic obstructive pulmonary disease (COPD). METHODS: A RCT was undertaken in Norway between March 2018-December 2020 (n = 127). The control group (CG, n = 63) received usual care. The intervention group (IG, n = 64) received tailored HL follow-up from MI-trained COPD nurses with home visits for eight weeks and phone calls for four months after hospitalization. Primary outcomes were hospitalization at eight weeks, six months, and one year from baseline. The trial was registered with ClinicalTrials.gov (NCT03216603) and analysed per protocol. RESULTS: Compared with the IG, the CG had 2.8 higher odds (95% CI [1.3 to 5.8]) of hospitalization and higher hospital health costs (MD=€ -6230, 95% CI [-6510 to -5951]) and lower QALYs (MD=0.1, 95% CI [0.10 to 0.11]) that gives an ICER = - 62,300. The IG reported higher QOL, self-management, and HL (p = 0.02- to <0.01). CONCLUSION: MI-trained COPD nurses using tailored HL follow-up is cost-effective, reduces hospitalization, and increases QOL, HL, and self-care in COPD. PRACTICE IMPLICATION: Tailored HL follow-up is beneficial for individuals with COPD and the healthcare system.

Improvement in Psoriasis Area and Severity Index score predicts improvement in skin pain over time in patients with psoriasis.

Pain and discomfort are common and often severe skin symptoms in patients with psoriasis. However, no studies have investigated skin pain and discomfort over time, or factors that explain changes in these symptoms. The aims of the present study were to describe the changes in skin pain, skin discomfort and Psoriasis Area and Severity Index (PASI) over time, and to investigate whether change in PASI predicted change in skin pain intensity. A total of 129 patients participated in this exploratory, longitudinal study. Data were obtained through interviews and questionnaires. The results indicated reduction in skin symptoms and psoriasis severity over a period of 3 months. However, a majority of patients with skin pain at baseline reported also skin pain at follow-up. Furthermore, changes in PASI predicted changes in skin pain intensity. In conclusion, improvement in psoriasis severity predicts improvement in skin pain.

The effect of an educational intervention for renal recipients: a randomized controlled trial.

AIM: The purpose of this randomized controlled trial was to test the efficacy of an educational intervention on renal recipient's knowledge, compliance, self-efficacy, and quality of life. METHODS: In total, 159 renal recipients were randomized to the intervention (N = 77) or control group (N = 82). A total of 139 participants reached second measure point (7-8 wk post-Tx), and 120 participants reached third measure point (six months post-Tx). The intervention consisted of five tailored one-to-one sessions. Primary outcome was measured by a knowledge questionnaire. Secondary outcomes were measured by "The General- Self-efficacy Scale," SF-12 and by number of patient observations (Compliance). RESULTS: Significantly higher levels of knowledge were found in the experimental group compared with the control group at both measure points (p = 0.002 and p = 0.004). Compliance was significantly higher in the experimental group at second measure point (p = 0.000). At third measure point, the experimental group reported significantly better scores on self-efficacy (p = 0.036) and mental score of quality of life (p = 0.001). CONCLUSIONS: This structured, tailored educational intervention, applied in a 7-8 wk post-transplant period, increased renal recipients' levels of knowledge on both short and long terms. Furthermore, the intervention was beneficial for patients' compliance, self-efficacy, and mental quality of life.

Renal recipients' educational experiences in the early post-operative phase--a qualitative study.

Renal recipients need to acquire significant amount of knowledge for their life post-transplantation. More knowledge on kidney recipients' experiences after transplantation with regard to the patient education provided is needed. Sixteen renal recipients were interviewed 4-6 weeks post-transplantation about content and methods in the patient education programme. Data were analysed in the hermeneutic tradition. The patients experienced barriers towards learning in the early post-operative phase. Kidney transplantation was expressed as a 'turning point in life', causing learning difficulties because of both physical and mental stress. Survival knowledge was the label for topics concerning medication and rejection as they were experienced as essential for life. Situational knowledge, that is, knowledge related to recipients' individual life situations, requires further details in the main topics provided. The difference between knowing and practising what was taught was experienced as troublesome. The recipients expressed that a supportive learning atmosphere characterized by patience, respect, continuity and active participation was essential. This study revealed new knowledge about renal recipients' need for individual application of the educational content, as well as cognitive difficulties, and other factors impacting on learning in the early post-operative phase. The patients' perspective is an important and useful aid in creating effective interventions in this field.

Relevant associations between alexithymia and health-literacy in persons with psoriasis.

OBJECTIVE: To explore possible associations between alexithymia and health literacy (HL) in persons with psoriasis. METHODS: We conducted a cross-sectional study, including 825 persons with moderate to severe psoriasis, using the Toronto Alexithymia Scale, and the Health Literacy Questionnaire. Descriptive statistics compare HL means between alexithymic and not alexithymic participants. Associations between alexithymia and HL are analyzed using a linear multiple regression model. RESULTS: Twenty-six percent of the participants were characterized as alexithymic, and 26.8% had borderline alexithymia. Higher alexithymia scores were associated with lower education, biological medicines, and more comorbidities, together with lower self-efficacy. The HL domains with the strongest associations with alexithymia were those focusing on managing and getting support for health, as well as the ability to find health information. CONCLUSION: A more elevated alexithymia score is associated with lower HL. Further studies of these associations may contribute to a more comprehensive perspective of psoriasis. To know a patient's alexithymia level and HL needs may guide health care personnel's understanding of possible associations between health status, clinical presentation, behavior, and response to treatment.

The importance of shared meaning-making for sustainable knowledge translation and health literacy.

The aim of the present paper is to describe and discuss how recent theories about translation, bridging medical and humanistic understandings of knowledge translation, in the medical humanities can bring about a new understanding of health literacy in the context of patient education. We argue that knowledge translation must be understood as active engagement with contextual meaning, considering the understandings, interpretation, and expertise of both patient and health care provider (deconstruction of the distinction between biomedical and cultural knowledge). To illustrate our points, we will describe the case of Jim, a kidney transplant recipient who received standard patient education but lost the graft (the new kidney). If we apply Kristeva's view to this context, graft function is not merely biology but a complex biocultural fact. In this perspective, graft function is seen as a phenomenon that embraces translation between health as a biomedical phenomenon and healing as lived experience, and that opens for shared meaning-making processes between the patient and the health care provider. In Jim's case, this means that we need to rethink the approach to patient education in a way that encourages the patient's idiosyncratic way of thinking and experiencing, and to transform health information into a means for sustaining Jim's singular life - not biological life "in general." The patient education programme did not take into consideration the singularities of Jim's biographical temporality, with its changes in everyday life, priorities, attitudes, and values. Hence, we claim that health literacy should involve a simultaneous interrogation of the patients and the health professional's constructions of knowledge.

How to co-design a health literacy-informed intervention based on a needs assessment study in chronic obstructive pulmonary disease.

OBJECTIVE: To develop a co-designed health literacy (HL)-informed intervention for people with chronic obstructive pulmonary disease (COPD) that enables them to find, understand, remember, use and communicate the health information needed to promote and maintain good health. DESIGN: This study used a co-design approach informed by the programme logic of the Ophelia (Optimising Health Literacy and Access) process. The co-design included workshops where possible solutions for an HL-informed intervention were discussed based on an HL needs assessment study. SETTINGS: Five workshops were performed in a local community setting in the specialist and municipality healthcare services in Oslo, Norway. PARTICIPANTS: People with COPD, multidisciplinary healthcare professionals (HCPs) from the municipality and specialist healthcare services, and researchers (n=19) participated in the workshops. The co-designed HL-informed intervention was based on seven focus groups with people with COPD (n=14) and HCPs (n=21), and a cross-sectional study of people with COPD using the Health Literacy Questionnaire (n=69). RESULTS: The workshop co-design process identified 45 action points and 51 description points for possible intervention solutions to meet the HL needs of people with COPD. The final recommendation for an HL-informed intervention focused on tailored follow-up after hospitalisation, which uses motivational interviewing techniques, is based on the individual's HL, self-management and quality of life needs and is implemented in cooperation with HCPs in both the specialist and municipality healthcare services. CONCLUSION: During the codesign process, the workshop group generated several ideas for how to help patients find, understand, remember, use and communicate health information in order to promote and maintain good health. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them for self-management tasks and help them to improve their quality of life (QOL) and decrease hospitalisation.

Exploring patients' and health professionals' perspectives on health literacy needs in the context of chronic obstructive pulmonary disease.

OBJECTIVE: Persons with chronic obstructive pulmonary disease (COPD) require complex follow-up by healthcare professionals (HCPs) and may experience several health literacy (HL) needs. This study aimed to explore such needs in people with COPD and the HCPs who care for them. METHODS: From October 2016 to August 2017 a qualitative study with four focus groups (FG) were performed in people with COPD (n = 14) and three in multidisciplinary HCPs (n = 21). An inductive thematic analysis was used to investigate HL needs. RESULTS: Four HL needs emerged: 1) strengthening the feeling of security; 2) combating the burden of insufficient knowledge on COPD and lack of informational flow; 3) supporting motivation for endurance and self-management; and 4) strengthening dignity. DISCUSSION: This study highlights a gap between people with COPD who express important HL needs and HCPs' capabilities to care for these needs. For HCPs to increase HL in such cases, HCPs need to improve their own HL. It is essential to find solutions on how to improve HL in HCPs who care for people with COPD and to increase the availability of interventions that increase HL in COPD. Education programs, health organizations, and governments should be aware of HL needs in such situations.