Merete Kristin Tschamper

• Borge, Christine Råheim; Eik, Hedda; Wahl, Astrid Klopstad; Bragstad, Line Kildal; Sylwander, Charlotte & Hjorthaug, Kristin [Vis alle 26 forfattere av denne artikkelen] (2026). Health literacy research in primary healthcare services – A scoping review. Patient Education and Counseling. ISSN 0738-3991. 149, s. 109675–109675. doi: 10.1016/j.pec.2026.109675. Fulltekst i vitenarkiv Vis sammendrag

  Objective To systematically map existing evidence on health literacy among people with non-communicable diseases (NCDs) in primary healthcare. Methods An interdisciplinary research group conducted a scoping review following the Arksey and O’Malley framework, refined by Levac and Peters, and reported according to PRISMA-ScR. The review was registered in OSF and applied the Population–Concept–Context framework to define inclusion criteria. Searches were conducted in Medline, APA PsycInfo, Scopus, and Cochrane for studies published between 2000–2025. Peer-reviewed studies were screened in Rayyan, and data were charted and thematically analyzed through team-based consensus. Results The search identified 7952 studies, of which 106 studies met the inclusion criteria. Participants’ mean age was 59 years; 56% were female. Studies originated from 29 countries, mainly the USA, China, and Canada, with an increase after 2013. Three main themes were identified: (1) health literacy, social status, and ethnicity, (2) health literacy, disease, and health outcomes, and (3) health literacy, NCD knowledge, and self-management. Many studies reported associations between health literacy, and self-management, quality of life, and some clinical outcomes, but findings across designs and outcomes were heterogeneous and not consistently positive. Conclusions Improved communication, greater cultural competence, and tailored health literacy interventions are associated with better self-management and disease outcomes in non-communicable diseases, but most evidence is associative rather than causal, intervention effects are mixed, and research on health literacy experiences remains limited. Practice Implications More rigorously designed intervention studies and broader conceptualization and measurement of health literacy with multidimensional instruments are needed to strengthen the evidence and clarify how health literacy relates to social status, disease outcomes, and self-management in primary healthcare. Training healthcare professionals to assess and address health literacy is essential to promote equity and effective patient engagement.

• Karterud, Hilde Nordahl; Tschamper, Merete Kristin Bustetun; Bækkelund, Siv; Henning, Oliver Johannes & Lossius, Morten Ingvar (2025). What contributes to recovery in the long term? Young people's experiences with psychogenic non-epileptic seizures (PNES). Epilepsy & Behavior. ISSN 1525-5050. 164. doi: 10.1016/j.yebeh.2025.110281. Fulltekst i vitenarkiv
• Tschamper, Merete Kristin Bustetun; Wahl, Astrid Klopstad; Jakobsen, Rita & Larsen, Marie Hamilton (2025). Meeting Parents' Health Literacy Needs—Designing and Feasibility Testing of a Three-Step Intervention in the Childhood Epilepsy Context. Journal of Clinical Nursing (JCN). ISSN 0962-1067. doi: 10.1111/jocn.17652. Fulltekst i vitenarkiv
• Søreide, Ragnhild Makhotso Egenberg; Larsen, Marie Hamilton; Wahl, Astrid Klopstad; Tschamper, Merete Kristin Bustetun & Urstad, Kristin Hjorthaug (2025). Health Literacy and Self-Efficacy in Parents of Toddlers—A Cross-Sectional Study. Nursing Open. 12(2). doi: 10.1002/nop2.70078. Fulltekst i vitenarkiv
• Karterud, Hilde Nordahl; Nakken, Karl Otto; Lossius, Morten Ingvar; Tschamper, Merete Kristin; INGEBRIGTSEN, TRINE & Henning, Oliver Johannes (2024). Young people diagnosed with psychogenic nonepileptic seizures (PNES) years ago − How are they now? Epilepsy & Behavior. ISSN 1525-5050. 157. doi: 10.1016/j.yebeh.2024.109874. Fulltekst i vitenarkiv
• Henning, Oliver Johannes; Ystad, Yngve; Molteberg, Ellen; Bjørnvold, Marit; Tschamper, Merete Kristin & Almåsbak, Grete [Vis alle 7 forfattere av denne artikkelen] (2024). Undervisning om epilepsi til pasienter og pårørende. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. 144(2). doi: 10.4045/tidsskr.23.0794. Fulltekst i vitenarkiv
• Tschamper, Merete Kristin; Larsen, Marie Hamilton; Wahl, Astrid Klopstad & Jakobsen, Rita (2023). Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy—A qualitative study. Epilepsy & Behavior. ISSN 1525-5050. 142. doi: 10.1016/j.yebeh.2023.109222. Fulltekst i vitenarkiv
• Wahl, Astrid Klopstad; Hermansen, Åsmund; Tschamper, Merete Kristin; Osborne, Richard H.; Helseth, Sølvi & Jakobsen, Rita [Vis alle 7 forfattere av denne artikkelen] (2022). The Parent Health Literacy Questionnaire (HLQ-Parent). Adaptation and validity testing with parents of children with epilepsy. Scandinavian Journal of Public Health. ISSN 1403-4948. doi: 10.1177/14034948221123436. Fulltekst i vitenarkiv Vis sammendrag

  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.

• Tschamper, Merete Kristin; Wahl, Astrid Klopstad; Hermansen, Åsmund; Jakobsen, Rita & Larsen, Marie Hamilton (2022). Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy. Epilepsy & Behavior. ISSN 1525-5050. 130(108658), s. 1–8. doi: 10.1016/j.yebeh.2022.108658. Fulltekst i vitenarkiv Vis sammendrag

  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. β = 0.14–0.34) was the only variable that predicted higher scores on every HL scale. Being older than 35 years (St. β = 0.18–0.21), level of education (St. β = 0.16–0.27), and the child having a coordinator of services (St. β = 0.16–0.28) were associated with higher scores, while sick leave due to the child’s epilepsy (St. β = −0.13 to −0.16), child comorbidities (St. β = −0.15 to −0.19), and higher levels of mental distress (St. β = −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.

• Larsen, Marie Hamilton; Mengshoel, Anne Marit; Andersen, Marit Helen; Borge, Christine Råheim; Ahlsen, Birgitte & Dahl, Kari Gire [Vis alle 15 forfattere av denne artikkelen] (2022). “A bit of everything”: Health literacy interventions in chronic conditions – a systematic review. Patient Education and Counseling. ISSN 0738-3991. 105(10), s. 2999–3016. doi: 10.1016/j.pec.2022.05.008. Fulltekst i vitenarkiv Vis sammendrag

  Objective: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness. Method: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed. The study includes a descriptive summary of the included papers. Results: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor. Conclusions: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions’ complexity. Practice implications: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.

• Tschamper, Merete Kristin & Systad, Silje (2021). Rare, epilepsy-related disorder including intellectual disability – A scoping review of caregivers’ identified information needs. Journal of Intellectual Disabilities. ISSN 1744-6295. 26(3), s. 704–717. doi: 10.1177/17446295211002348. Fulltekst i vitenarkiv
• Tschamper, Merete Kristin Bustetun & Jakobsen, Rita (2019). Parents’ experiences of videoconference as a tool for multidisciplinary information exchange for children with epilepsy and disability Journal: Journal of Clinical Nursing. Journal of Clinical Nursing (JCN). ISSN 0962-1067. 28(9-10), s. 1506–1516. doi: 10.1111/jocn.14755. Fulltekst i vitenarkiv Vis sammendrag

  Aims and objectives The aim for this study was to explore the parents' experiences with the multidisciplinary information exchange between different levels of the health‐ social and school services using videoconference (VC). Background Children with epilepsy and disability are in need of long‐term multidisciplinary help and support. The information exchange between the child's providers of support is challenging. Scant attention has been paid to the parents' experiences of the information exchange. Design A qualitative study with a phenomenological‐ hermeneutical research approach. Method Children with epilepsy and disability had undergone a multidisciplinary assessment in a hospital in the tertiary health service followed by information exchange with each child's local support service using VC. Five parents were interviewed individually within a week after the VC. The COREQ checklist was used in the process of reporting on the empirical material. Results The increased local participation in the VC and the knowledge translation between the professionals made the parents save time, as they did not have to explain the written reports to each provider locally. The impact of technology created an emotional distance to the person on the screen and the information exchanged that some enjoyed while others disliked. The quality of the relationships to the professionals seemed to be crucial for the parents to feel safe talking about sensitive tasks. Conclusion The parents prefer VC as a tool for information exchange to traditional face‐to‐face meetings as it enables discussions between professionals that might prevent treatment misunderstandings. They experience the method as timesaving and patient centred. Relevance to clinical practice Professionals should be aware of the possible side effects of the impact of technology that might affect the interaction and the information exchange in a negative way. The findings are likely to be transferable beyond the current context.

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• Tschamper, Merete Kristin Bustetun (2026). Exploring health literacy needs in parents of children with epilepsy: A co-designed intervention development. Universitetet i Oslo. ISSN 9788234808036. Fulltekst i vitenarkiv Vis sammendrag

  This thesis is conducted within the field of childhood epilepsy and addresses parents’ health literacy (HL) needs and how to address those needs. The study site was the tertiary health service hospital, the National Centre for Epilepsy, Oslo University Hospital. Childhood epilepsy is associated with neurological, psychological, cognitive, and social challenges, which can reduce the quality of life for both the child and the family. Children rely on parents to manage their complex condition, administering medications, responding to symptoms, handling uncertainty, and coordinating with multiple services. Parents’ HL, their ability to seek, understand, evaluate, remember, and use health information, can affect children’s health outcomes. Healthcare professionals therefore need to provide tailored information that supports parental HL. However, there is limited evidence on how services and interventions can be adapted to meet parents’ diverse needs. Guided by the Ophelia (Optimising HEalth LIteracy and Access) process for HL intervention development, this thesis had two overall aims: 1. To identify the health literacy needs of parents of children with epilepsy. 2. To co-design and feasibility test a new intervention to support parental health literacy. Methods: The project consisted of three studies: Study I (quantitative): Cross-sectional survey of parents using the Health Literacy Questionnaire - parent version (HLQ-p) and the electronic Health Literacy Scale (eHEALS). Analyses included bivariate correlations, multiple hierarchical linear regression, and cluster analysis to identify HL profiles. Study II: (qualitative) Individual semi-structured interviews with parents from the identified clusters to better understand how they develop HL in relation to managing their child’s condition. Data were analysed using qualitative content analysis. Study III: (co-design and feasibility) An intervention to address the identified parent HL needs was co-created using workshops with parents and multidisciplinary providers. The participants’ suggestions to enhance health services were analysed using thematic analysis. Feasibility was evaluated via interviews with parents and a focus group with study nurses (thematic analysis). Parents also completed pre/post questionnaires, and physicians completed a survey on the intervention’s impact on nurse–doctor communication about the child’s treatment. Results: Parents struggled most with navigating the healthcare system, obtaining sufficient information and receiving social support. Lower HL was associated with greater psychological strain, more absence from work, and children with comorbidities. Cluster analyses identified four parent profiles; parents in clusters 1 and 2, were more often younger, with lower education levels, whose children were more recently diagnosed, or children with comorbidities, had the lowest overall HLQ-p and eHEALS scores. Three main themes were identified from analysing the interviews: 1) Alone with the responsibility: Parents felt isolated due to low local provider epilepsy competence, unclear responsibilities, and insufficient multidisciplinary collaboration. 2) The fight for information and support: Many had to push for access to competent help and actionable guidance, especially in the vulnerable period following diagnosis. 3) Developing vigilance and distrust of the healthcare providers’ competence: As HL increased, some parents became more vigilant and less trusting when they encountered poor coordination or inadequate expertise. Trust in professionals and timely access to competent care were essential for HL development. The co-designed intervention aimed to strengthen parents’ functional and communicative HL. The target group was parents whose child was hospitalised for the first time at the National Centre for Epilepsy. Components: 1. Pre-hospitalisation: A telephone consultation to assess HL needs and develop a tailored education plan using the Conversational Health Literacy Assessment Tool (CHAT). 2. During hospitalisation: Delivery of the tailored plan through individual consultations; with consent, information was exchanged with local providers to increase tailored disease knowledge, enhance understanding, and provide support. 3. Post-discharge (3–4 weeks): A follow-up consultation with a study nurse to review key information and address questions about ongoing care. Feasibility findings: Parents found the intervention beneficial, especially the one-to-one conversations. Implementation was hindered by time constraints, staffing limitations, and nurses’ feelings of insufficient preparation. Further feasibility testing and organisational anchoring are needed before wider rollout. Conclusions and Implications: In particular, parents of newly diagnosed children with epilepsy, and/or children with additional comorbidities, need more structured support from their local healthcare services to navigate services, understand and use health information, and manage daily care. A co-designed, nurse-led intervention focused on personalised assessment, tailored education, information exchange with local providers to increase tailored disease knowledge, enhance understanding, provide support, and ensure structured local follow-up was positively received and perceived as useful by parents. Further testing is warranted to refine the intervention, assess effectiveness, and embed it within routine care.

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