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BACKGROUND: Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a beneficial tool to engage patients in self-care. METHODS: A randomised controlled trial with an embedded evaluation of intervention engagement and cost-effectiveness will be conducted to investigate the effect of eHealth intervention after hospital discharge on the self-efficacy of self-care. Eligible patients with HF or CRC will be recruited before discharge from two Norwegian university hospitals. The intervention group will use a nurse-assisted intervention-eHealth@Hospital-2-Home-for six weeks. The intervention includes remote monitoring of vital signs; patients' self-reports of symptoms, health and well-being; secure messaging between patients and hospital-based nurse navigators; and access to specific HF and CRC health-related information. The control group will receive routine care. Data collection will take place before the intervention (baseline), at the end of the intervention (Post-1), and at six months (Post-2). The primary outcome will be self-efficacy in self-care. The secondary outcomes will include measures of burden of treatment, health-related quality of life and 30- and 90-day readmissions. Sub-study analyses are planned in the HF patient population with primary outcomes of self-care behaviour and secondary outcomes of medication adherence, and readmission at 30 days, 90 days and 6 months. Patients' and nurse navigators' engagement and experiences with the eHealth intervention and cost-effectiveness will be investigated. Data will be analysed according to intention-to-treat principles. Qualitative data will be analysed using thematic analysis. DISCUSSION: This protocol will examine the effects of the eHealth@ Hospital-2-Home intervention on self-care in two prevalent patient groups, HF and CRC. It will allow the exploration of a generic framework for an eHealth intervention after hospital discharge, which could be adapted to other patient groups, upscaled, and implemented into clinical practice. TRIAL REGISTRATION: Clinical trials.gov (ID 301472).
Sujet(s)
Tumeurs colorectales , Défaillance cardiaque , Télémédecine , Humains , Sortie du patient , Autosoins/méthodes , Qualité de vie , Résultat thérapeutique , Défaillance cardiaque/thérapie , Hôpitaux , Tumeurs colorectales/thérapie , Essais contrôlés randomisés comme sujetRÉSUMÉ
INTRODUCTION: Colorectal cancer (CRC) creates elevated self-management demands and unmet support needs post-discharge. Follow-up care through eHealth post-primary surgery may be an effective means of supporting patients' needs. This integrative review describes the evidence regarding eHealth interventions post-hospital discharge focusing on delivery mode, user-interface and content, patient intervention adherence, impact on patient-reported outcomes and experiences of eHealth. METHODS: A university librarian performed literature searches in 2021 using four databases. After screening 1149 records, the authors read 30 full-text papers and included and extracted data from 26 papers. Two authors analysed the extracted data using the 'framework synthesis approach'. RESULTS: The 26 papers were published between 2012 and 2022. The eHealth interventions were mainly delivered by telephone with the assistance of healthcare professionals, combined with text messages or video conferencing. The user interfaces included websites, applications and physical activity (PA) trackers. The interventions comprised the monitoring of symptoms or health behaviours, patient information, education and counselling. Evidence showed a better psychological state and improved PA. Patients reported high satisfaction with eHealth. However, patient adherence was inadequately reported. CONCLUSIONS: eHealth interventions may positively impact CRC patients' anxiety and PA regardless of the user interface. Patients prefer technology combined with a human element.
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Tumeurs colorectales , Gestion de soi , Humains , Post-cure , Sortie du patient , Anxiété , Tumeurs colorectales/chirurgieRÉSUMÉ
INTRODUCTION: A growing number of patients with non-communicable diseases (NCDs), such as heart failure (HF) and colorectal cancer (CRC), are prone to comorbidity, a high rate of readmissions and complex healthcare needs. An eHealth intervention, however, could potentially ameliorate the increasing burdens associated with NCDs by helping to smoothen patient transition from hospital to home and by reducing the number of readmissions. This feasibility study therefore aims to assess the feasibility of a nurse-assisted eHealth intervention posthospital discharge among patients with HF and CRC, while also examining the preliminary clinical and behavioural outcomes of the intervention before initiating a full-scale randomised controlled trial. The recruitment ended in January 2023. METHODS AND ANALYSIS: Twenty adult patients with HF and 10 adult patients with CRC will be recruited from two university hospitals in Norway. Six hospital-based nurse navigators (NNs) will offer support during the transition phase from hospital to home by using a solution for digital remote care, Dignio Connected Care. The patients will use the MyDignio application uploaded to an iPad for 30 days postdischarge. The interactions between patients and NNs will then be assessed through direct observation and qualitative interviews in line with a think-aloud protocol. Following the intervention, semistructured interviews will be used to explore patients' experiences of eHealth support and NNs' experiences of eHealth delivery. The feasibility testing will also comprise a post-test of the Post-System Usability Questionnaire and pretesting of patient-reported outcomes questionnaires, as well as an inspection of user data collected from the software. ETHICS AND DISSEMINATION: The study has been approved by the Norwegian Centre for Research Data (ID.NO: 523386). All participation is based on informed, written consent. The results of the study will be published in open-access, peer-reviewed journals and presented at international and national scientific conferences and meetings.
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Maladies non transmissibles , Télémédecine , Humains , Adulte , Études de faisabilité , Sortie du patient , Post-cure , Maladies non transmissibles/thérapie , Essais contrôlés randomisés comme sujetRÉSUMÉ
BACKGROUND: Heart failure (HF) is a clinical syndrome with high incidence rates, a substantial symptom and treatment burden, and a significant risk of readmission within 30 days after hospitalization. The COVID-19 pandemic has revealed the significance of using eHealth interventions to follow up on the care needs of patients with HF to support self-care, increase quality of life (QoL), and reduce readmission rates during the transition between hospital and home. OBJECTIVE: The aims of this review are to summarize research on the content and delivery modes of HF posthospitalization eHealth interventions, explore patient adherence to the interventions, and examine the effects on the patient outcomes of self-care, QoL, and readmissions. METHODS: A restricted systematic review study design was used. Literature searches and reviews followed the (PRISMA-S) Preferred Reporting Items for Systematic Reviews and Meta-Analyses literature search extension checklist, and the CINAHL, MEDLINE, Embase, and Cochrane Library databases were searched for studies published between 2015 and 2020. The review process involved 3 groups of researchers working in pairs. The Mixed Methods Appraisal Tool was used to assess the included studies' methodological quality. A thematic analysis method was used to analyze data extracted from the studies. RESULTS: A total of 18 studies were examined in this review. The studies were published between 2015 and 2019, with 56% (10/18) of them published in the United States. Of the 18 studies, 16 (89%) were randomized controlled trials, and 14 (78%) recruited patients upon hospital discharge to eHealth interventions lasting from 14 days to 12 months. The studies involved structured telephone calls, interactive voice response, and telemonitoring and included elements of patient education, counseling, social and emotional support, and self-monitoring of symptoms and vital signs. Of the 18 studies, 11 (61%) provided information on patient adherence, and the adherence levels were 72%-99%. When used for posthospitalization follow-up of patients with HF, eHealth interventions can positively affect QoL, whereas its impact is less evident for self-care and readmissions. CONCLUSIONS: This review suggests that patients with HF should receive prompt follow-up after hospitalization and eHealth interventions have the potential to improve these patients' QoL. Patient adherence in eHealth follow-up trials shows promise for successful future interventions and adherence research. Further studies are warranted to examine the effects of eHealth interventions on self-care and readmissions among patients with HF.
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COVID-19 , Défaillance cardiaque , Télémédecine , Études de suivi , Défaillance cardiaque/thérapie , Humains , Pandémies , Qualité de vie , Essais contrôlés randomisés comme sujet , SARS-CoV-2 , Télémédecine/méthodesRÉSUMÉ
OBJECTIVES: The way health literacy is understood (conceptualised) should be closely linked to how it is measured (operationalised). This study aimed to gain insights into how health literacy is defined and measured in current health literacy research and to examine the relationship between health literacy definitions and instruments. DESIGN: Systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. DATA SOURCES: The MEDLINE, PsycINFO, ERIC and CINAHL databases were searched for articles published during two randomly selected months (March and October) in 2019. ELIGIBILITY CRITERIA: We included articles with a quantitative design that measured health literacy, were peer-reviewed and original, were published in the English language and included a study population older than 16 years. DATA EXTRACTION AND SYNTHESIS: Six researchers screened the articles for eligibility and extracted the data independently. All health literacy definitions and instruments were considered in relation to category 1 (describing basic reading and writing skills, disease-specific knowledge and practical skills) and category 2 (social health literacy competence and the ability to interpret and critically assess health information). The categories were inspired by Nutbeam's descriptions of the different health literacy levels. RESULTS: 120 articles were included in the review: 60 within public health and 60 within clinical health. The majority of the articles (n=77) used instruments from category 1. In total, 79 of the studies provided a health literacy definition; of these, 71 were in category 2 and 8 were in category 1. In almost half of the studies (n=38), health literacy was defined in a broad perspective (category 2) but measured with a more narrow focus (category 1). CONCLUSION: Due to the high degree of inconsistency between health literacy definitions and instruments in current health literacy research, there is a risk of missing important information about health literacy considered be important to the initial understanding of the concept recognised in the studies. PROSPERO REGISTRATION NUMBER: CRD42020179699.
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Compétence informationnelle en santé , Bases de données factuelles , HumainsRÉSUMÉ
BACKGROUND: Higher education is responsible for providing education that meets international benchmarks relevant to the needs of the international community. Due to the increase of digital tools in higher education, the possibility of sharing learning resources across nations has expanded. In the current project, a Norwegian university invited universities in Spain and the United Kingdom to adapt and translate e-learning resources originally developed for Norwegian nursing students for use within their respective Bachelor in Nursing programmes. AIM: The aim of the current study was to gain insights into the usability and value for learning of e-compendiums shared and implemented across three European universities. METHODS: The study adopted a descriptive cross-sectional design and included nursing students from the University of Nottingham, Valencia Catholic University, and the University of Stavanger. Data were collected in Autumn 2017 through a questionnaire adapted from the validated "Centre for Excellence in Teaching and Learning Reusable Learning Object evaluation questionnaire" The questionnaire consisted of 19 items that included two aspects: e-compendiums' value for learning and e-compendiums' usability. The different study sites were compared using a binary logistic regression analysis. Subgroups of students were compared based on their gender and age. RESULTS: A total of 480 nursing students participated in the study. The e -compendiums were overall positively rated, especially for reinforcing and retaining knowledge. Compared to the students from the University of Stavanger, students from Valencia Catholic University rated the e-compendiums more positively in most aspects of learning. Students from University of Nottingham found the e-compendiums to be more important for learning engagement compared to students at the Norwegian study site, and no differences were found in any other aspects of learning. Younger students rated the interactivity and visual components as more important compared to older students. CONCLUSIONS: Students from the University of Nottingham and Valencia Catholic University seem to accept the e-compendiums despite the fact that they were originally developed for use in another country. We argue that, when sharing e-learning resources across countries, an adaptation and translation process that includes a multicultural and multidisciplinary perspective should be carried out.
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BACKGROUND: Following an implementation plan based on dynamic dialogue between researchers and clinicians, this study implemented an evidence-based patient education program (tested in an RCT) into routine care at a clinical transplant center. The aim of this study was to investigate renal recipients' knowledge and self-efficacy during first year the after the intervention was provided in an everyday life setting. METHODS: The study has a longitudinal design. The sample consisted of 196 renal recipients. Measurement points were 5 days (baseline), 2 months (T1), 6 months (T2), and one-year post transplantation (T3). Outcome measures were post-transplant knowledge, self-efficacy, and self-perceived general health. RESULTS: No statistically significant changes were found from baseline to T1, T2, and T3. Participants' levels of knowledge and self-efficacy were high prior to the education program and did not change throughout the first year post transplantation. CONCLUSION: Renal recipients self-efficacy and insight in post-transplant aspects seem to be more robust when admitted to the hospital for transplantation compared to baseline observations in the RCT study. This may explain why the implemented educational intervention did not lead to the same positive increase in outcome measures as in the RCT. This study supports that replicating clinical interventions in real-life settings may provide different results compared to results from RCT's. In order to gain a complete picture of the impacts of an implemented intervention, it is vital also to evaluate results after implementing findings from RCT-studies into everyday practice.
Sujet(s)
Défaillance rénale chronique , Transplantation rénale , Éducation du patient comme sujet , Période périopératoire , Qualité de vie , Auto-efficacité , Adulte , Information en santé des consommateurs , Femelle , Compétence informationnelle en santé , Humains , Défaillance rénale chronique/psychologie , Défaillance rénale chronique/chirurgie , Transplantation rénale/enseignement et éducation , Transplantation rénale/psychologie , Études longitudinales , Mâle , Période périopératoire/enseignement et éducation , Période périopératoire/psychologieRÉSUMÉ
OBJECTIVES: The study aimed to identify changes in health literacy (HL) and associated variables during the first year following a kidney transplantation. METHODS: A total of 196 transplant recipients were included in a prospective follow-up study. The patients answered the Health Literacy Questionnaire (HLQ) at 5 days, 8 weeks, 6 and 12 months following the kidney transplantation. Mixed linear models were used to analyze changes in HL and backward elimination was used to identify variables associated with HL. RESULTS: Two main patterns of change were identified: a) HL increased during the first 8 weeks of close follow-up and b) in several domains, the positive increase from 5 days to 8 weeks flattened out from 5 days to 6 and 12 months. Self-efficacy, transplant-related knowledge, and general health were core variables associated with HL. CONCLUSIONS: Overall, HL increased during the 8 weeks of close follow-up following the kidney transplantation, while 6 months seem to be a more vulnerable phase. Furthermore, low self-efficacy, less knowledge, and low self-perceived health may represent vulnerable characteristics in patients. PRACTICAL IMPLICATIONS: Future kidney transplant care should take into account patients' access to and appraisal of health information and social support, and draw attention to potentially vulnerable groups.
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Compétence informationnelle en santé , Transplantation rénale , Études de suivi , Humains , Études prospectives , Enquêtes et questionnairesRÉSUMÉ
OBJECTIVE: To strengthen patients' health literacy and their role as active knowledge actors, we developed a health communication intervention including a film-viewing and counselling session for patients awaiting kidney transplantation. We aimed to explore processes of knowing in the translation of the intervention. METHODS: We applied an ethnographic research approach, observing nine intervention sessions with patients and dialysis nurses. Afterwards, the patients and the nurses were interviewed in-depth. Data were analysed using Engebretsen's modified version of Lonergans' four-step model of knowing. RESULTS: The following knowing processes were identified: i) Knowing as meaning-making; ii) Knowing as acquiring confidence; and iii) Accessing professionals' and peer experts' knowledge. Divergent considerations were taken by the different knowledge actors, which had a direct influence on the knowing processes and knowledge translation. CONCLUSIONS: The findings support active interactions between patients and healthcare providers in processes of knowing. These include self-conscious approaches and critical questioning in both parties. PRACTICE IMPLICATIONS: For transplant professionals, this study demonstrates knowing processes in a real-life context. It also spotlights professional skills and attitudes regarding the importance of self-conscious questioning and a critical interrogating position (for both patients and providers).
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Communication sur la santé , Compétence informationnelle en santé , Transplantation rénale , Communication , Personnel de santé/enseignement et éducation , Humains , Dialyse rénaleRÉSUMÉ
BACKGROUND: The Health Literacy Questionnaire (HLQ) is a multidimensional generic questionnaire developed to capture a wide range of health literacy needs. There is a need for validation evidence for the Norwegian version of the HLQ (N-HLQ). OBJECTIVE: The present study tested an initial version of the Norwegian HLQ by exploring its utility and construct validity among a group of nursing students. METHODS: A pre-test survey was performed in participants (N = 18) who were asked to consider every item in the N-HLQ (44 items across nine scales). The N-HLQ was then administered to 368 respondents. Scale consistency was identified and extracted in a series of factor analyses (principal component analysis [PCA] with oblimin rotation) demanding a nine-dimension solution performed on randomly drawn 50% of the samples obtained by bootstrapping. Correlations between the nine factors obtained in the 13-factor PCA and the scale scores computed by the scale scoring syntaxes provided by the authors of the original HLQ were estimated. KEY RESULTS: The pre-test survey did not result in the need to rephrase items. The internal consistency of the nine HLQ scales was high, ranging from 0.81 to 0.72. The best fit for reproduction of the scales from the original HLQ was found for these dimensions: "1. feeling understood and supported by health care providers," "2. having sufficient information to manage my health," and "3. actively managing my health." For the dimensions "7. navigating in the healthcare system" and "8. ability to find good health information," a rather high degree of overlap was found, as indicated by relatively low differences between mean highest correlations and mean next-highest correlations. CONCLUSIONS: Despite some possible overlap between dimensions 7 and 8, the N-HLQ appeared relatively robust. Thus, this study's results contribute to the evidence validation base for the N-HLQ in Norwegian populations. [HLRP: Health Literacy Research and Practice. 2020;4(4):e190-e199.] PLAIN LANGUAGE SUMMARY: This study tested the Norwegian version of the Health Literacy Questionnaire. The questionnaire (44 items across nine scales) was completed by 368 nursing students. Despite some overlap between scale 7 ("navigating in the health care system") and scale 8 ("ability to find good health information"), the questionnaire appears to serve as a good measurement for health literacy in the Norwegian population.
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Compétence informationnelle en santé/normes , Psychométrie/normes , Adolescent , Adulte , Femelle , Compétence informationnelle en santé/statistiques et données numériques , Humains , Mâle , Adulte d'âge moyen , Norvège , Psychométrie/instrumentation , Psychométrie/méthodes , Reproductibilité des résultats , Enquêtes et questionnairesRÉSUMÉ
BACKGROUND: Patients with chronic kidney disease make day-to-day decisions about how to self-manage their disease. Chronic kidney disease (CKD) includes a risk for progression towards end-stage renal disease and the development of comorbidities, such as cardiovascular disease, which represents the leading cause of death among these patients. To reduce these risks, CKD patients are recommended to follow a healthy lifestyle with physical activity, food and fluid restrictions, and adherence to complex medication regimes throughout all phases of the disease. To manage the complexity of this health situation, health literacy (HL) is considered essential. The current prevailing understanding is that HL is a multidimensional concept and comprises a range of cognitive, affective, social, and personal skills that determine the motivation and ability to gain access to, understand, and use health information. Recently, we investigated multiple aspects of HL in CKD patients in a quantitative cross-sectional study utilizing the Health Literacy Questionnaire (HLQ) and observed that finding good health information and appraising health information were the most challenging aspects of HL. This study aimed to explore CKD patients' lived experiences of different dimensions of HL presented in the HLQ. METHODS: This qualitative study utilized in-depth semistructured interviews. Twelve patients with different levels of HL were included. The interviews were analyzed using thematic analysis as described by Braun and Clarke. RESULTS: We identified three main themes that were significant for CKD patients' HL: 1. Variation in people's attitudes and behavior as health information seekers, 2. The problem of fragmented healthcare in the context of multimorbidity makes the healthcare system challenging to navigate, and 3. The value of a good relationship with healthcare providers. CONCLUSION: CKD patients take different approaches to health information. Limiting or avoiding health information may be a strategy used by some individuals to cope with the disease and does not necessarily mean that health information is inaccessible or difficult to understand. Comorbidity and a fragmented healthcare system can make the healthcare system challenging to navigate. A good and trusting relationship with healthcare providers seems to promote several aspects of HL and should be promoted to optimize CKD patients' HL.
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Compétence informationnelle en santé , Insuffisance rénale chronique , Gestion de soi , Adulte , Sujet âgé , Sujet âgé de 80 ans ou plus , Femelle , Humains , Mâle , Adulte d'âge moyen , Recherche qualitativeRÉSUMÉ
BACKGROUND: A kidney transplantation requires complex self-care skills and adequate follow-up from health-care providers. Identifying strengths and limitations in different aspects of health literacy (HL) and associated variables are central to being able to improve health care. The objective of this study was to identify core variables associated with independent domains of HL 8 weeks following a kidney transplantation. METHODS: A single-center cross-sectional study was conducted, wherein 159 kidney transplant recipients answered the Health Literacy Questionnaire (HLQ). Multivariable linear regression with backward elimination was used to investigate variables possibly associated with the 9 domains of HL. RESULTS: The transplant recipients had the lowest scores in "appraisal of health information" and "navigating the healthcare system." The highest scores were found in "feeling understood and supported by health-care providers" and "ability to actively engage with health-care provider." General perceived self-efficacy, transplant-specific knowledge, and general health were the driving variables in several of the HL domains. CONCLUSIONS: The HLQ provides a more complex picture of strengths and limitations related to HL, as well as important knowledge about vulnerable groups following a kidney transplantation. The study offers an important supplement to the field of HL in kidney transplant care.
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Connaissances, attitudes et pratiques en santé , Compétence informationnelle en santé , Transplantation rénale , Receveurs de transplantation , Adulte , Sujet âgé , Études transversales , Femelle , Humains , Mâle , Adulte d'âge moyen , Norvège , Enquêtes et questionnaires , Jeune adulteRÉSUMÉ
The main objective of this study was to explore how kidney transplant recipients find, understand, and use health information, and make decisions about their health-also known as health literacy. Kidney transplant recipients must take an active part in their health following the transplantation, since a new organ requires new medication and focus on lifestyle to prevent side-effects and signs of organ rejection. Consequently, it is of major clinical relevance to explore how kidney transplant recipients understand and relate to health literacy. Ten kidney transplant recipients were interviewed at three weeks and again at six months post-transplantation. Design and analysis were inspired by constructivist grounded theory. The results of the study are presented through a model consisting of three phases: the trigger phase, the information phase, and the response phase. The participants were influenced by context and personal factors as they moved between three phases, as information seekers, recipients, and sharers. This study illustrates health literacy as an active process. It gives new insight into what motivates kidney recipients to find, share, and receive information, and how a hierarchy of resources is built and used.
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Compétence informationnelle en santé , Transplantation rénale , Modèles théoriques , Adulte , Sujet âgé , Femelle , Enquêtes sur les soins de santé , Compétence informationnelle en santé/statistiques et données numériques , Humains , Mâle , Adulte d'âge moyenRÉSUMÉ
AIM: The aim of this study was to investigate health literacy in patients with chronic kidney disease in a multidimensional perspective. DESIGN: A descriptive, cross-sectional study. METHODS: Patients with chronic kidney disease at stages 3-5 were included in the study between February-August 2017 (N = 187). Health literacy was measured by the Health Literacy Questionnaire (HLQ). Multiple linear regression analysis was performed to identify associations between health literacy and demographic and clinical variables. Hierarchical cluster analysis was performed to identify characteristics of groups with high and low health literacy. RESULTS: Finding and critical appraise health information were the most challenging dimensions of health literacy. Female gender, lower level of education, greater number of prescribed medications and depressive symptoms were associated with lower health literacy. The group identified with lowest health literacy was further characterized by living alone and presence of comorbidity.
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BACKGROUND: Patient-centred education is a key element in the care of patients undergoing kidney transplantation. We implemented a tailored, evidence-based education programme for the post-transplant phase. OBJECTIVE: The aim of the study was to explore renal transplant recipients' experiences of participating in a new, tailored, evidence-based education programme. METHODS: An explorative qualitative design was chosen to elicit knowledge, insight and understanding of the renal transplant recipients' perspectives. Twelve renal transplant recipients participated in semi-structured interviews about eight weeks post-transplant. The interviews were audiotaped and analysed using thematic data analysis inspired by Kvale and Brinkmann's method for meaning condensation. FINDINGS: Two main themes emerged: 'Situated tailoring to the person's everyday life knowledge', and 'Tailoring as a standard procedure regardless of the person'. CONCLUSION: The findings of the present study indicate that the renal transplant recipients experienced the new education programme to be tailored to individual needs. Our study also revealed that the recipients experienced the health care personnel to take different considerations into account when educating. Viewing knowledge as continuously changing from controlled study contexts into clinical settings, we here demonstrate the need to evaluate new knowledge also after being implemented.
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Éducation pour la santé/normes , Transplantation rénale/méthodes , Receveurs de transplantation/psychologie , Adulte , Sujet âgé , Femelle , Éducation pour la santé/méthodes , Humains , Entretiens comme sujet/méthodes , Mâle , Adulte d'âge moyen , Soins centrés sur le patient/méthodes , Soins centrés sur le patient/normes , Recherche qualitativeRÉSUMÉ
OBJECTIVE: To understand how a new patient education programme for renal recipients becomes situated and adapted when implemented in daily hospital teaching practice. The analysis focuses in particular on how principles of individual tailoring and patient involvement are adapted. DESIGN: Ethnographic observation study. 19 teaching sessions were observed, resulting in 35 pages of data written observation notes. SETTING: A Norwegian University hospital. The study included the transplantation (TX) post, the medical post and the outpatient clinic. PARTICIPANTS: 10 newly transplanted patients receiving the education programme, and 13 nurses trained in the new programme participated in the study. RESULTS: We observed that the nurses attempted to implement the programme's core principles of individual tailoring and patient involvement as intended, but that patients found it difficult to formulate their knowledge needs and interest. Patients and nurses developed an approach to individual tailoring and patient involvement, which used knowledge about the patients' life and experiences as basis for translating generalised knowledge into knowledge that is individualised and meaningful for the patient. The individual tailoring was however also limited, as the nurses balanced between responsibilities for the programme's principles of individual adaption and patient involvement at the one hand, and responsibilities of safety and economy from a health systems perspective on the other hand. CONCLUSION: Individual tailoring is observed to be a comprehensive practice which includes verbal, practical and emotional involvement with the patient's life world. This extends the notion and practice of individual tailoring as selecting among predefined, generalised knowledge based on an initial mapping of the patients' knowledge. While the adaptions to individual tailoring could have been seen as inaccurate implementation, in-depth analyses discloses that the extended approach to individual tailoring is in fact what retains the programme's core principles in the implementation context.