Quality Appraisal of Quality of Life Research in Children and Adolescents with Food Allergy: A Systematic Review.

INTRODUCTION: Quality of life (QOL) and health-related quality of life (HRQOL) in children and adolescents with food allergies have been an important and steadily growing field of research for the past 20 years. There seem to be conceptual and methodological challenges that might influence the face validity of QOL and HRQOL research in general health research, but this has not been investigated in pediatric and adolescent food allergy research up until now. The aim of this study was to perform a systematic review of the QOL and HRQOL studies on food allergy in children and adolescents under the age of 18. METHODS: The systematic review was conducted on studies purporting to measure QOL or HRQOL in children and adolescents with food allergies. The literature search was developed in Ovid MEDLINE and databases used in the review were Embase, Cochrane Database of Systematic Reviews, CINAHL, and Scopus. Studies were evaluated based on a set of face validity criteria developed by Gill and Feinstein in 1994 and refined by Moons et al. in 2004. RESULTS: Out of 61 studies eligible for the review, 11 (18%) defined QOL or HRQOL and two distinguished QOL from HRQOL. The Food Allergy Quality of Life (FAQLQ) instrument series is the most frequently used HRQOL measurement among the studies included. QOL and HRQOL were employed interchangeably in half of the studies, some of them also using a third term in addition. CONCLUSION: Our findings lead to the conclusion that the research field investigated contains methodological and conceptual shortcomings regarding QOL and HRQOL. An increased awareness toward the terminology as well as consideration of points to reflect upon will be beneficial, as this will also improve the validity of future studies.

Use of active learning classrooms in health professional education: A scoping review.

Background: Active learning approaches, such as the use of active learning classrooms, can be an important measure to prepare health professional students for work-life. In addition to teaching approaches, the design of the classroom or learning spaces could facilitate learning. Although active learning classrooms are used in health professional education, no previous scoping review has investigated their use and associated outcomes. Objective: A scoping review was conducted to provide an overview of existing studies on the use of active learning classrooms in health professionals' education. Design: Scoping review using the framework of Arksey and O'Malley. Methods: A systematic search was performed in ERIC, CINAHL, PsycINFO, Ovid MEDLINE, and Ovid EMBASE for papers published between January 2012 and January 2023. Hand searches of the reference lists of the included studies were also conducted. Inclusion criteria were as follows: studies using qualitative, quantitative, or mixed methods; studies including undergraduate, graduate, or postgraduate health professional students or teachers; studies that investigated students' and teachers' use of active learning classrooms or similar concepts in higher education; and studies published in English, Swedish, Danish, Norwegian, Spanish, or Portuguese in peer-reviewed journals. Pairs of authors independently assessed the eligibility of the studies and extracted the data, which were thematically grouped. The scoping review protocol was published with the Open Science Framework prior to the study selection process. Results: The review included 11 papers from 10 studies. Most studies were published between 2018 and 2022, exploring students' perspectives. Three thematic groups were identified, suggesting that active learning classrooms (1) enhance a positive atmosphere and engagement but can be challenging; (2) facilitate students' interactions; and (3) have the potential to stimulate active learning and co-construction. Conclusions: The use of active learning classrooms in health professional education can facilitate interactions among students, between students and teachers, and between students and class content. However, the design of active learning classrooms can both enhance and challenge students' engagement and active participation. Teachers do not necessarily change their teaching approaches when compared to teaching in a traditional classroom. Future research should explore how to facilitate teachers' use of the opportunities in active learning classrooms in health professional education and students' learning outcomes, as well as the effect of high-technology active learning classrooms versus low-technology active learning classrooms on the intended learning outcome. Tweetable abstract: The use of active learning classrooms can facilitate active learning, but teachers do not necessarily change their teaching methods.

Critical care nurses' role in rapid response teams: A qualitative systematic review.

AIM: To analyse the qualitative evidence on the role of critical care nurses in rapid response teams. DESIGN: Qualitative systematic review. METHODS: This qualitative systematic review employed Bettany-Saltikov and McSherry's guidelines and is reported according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research checklist. Two pairs of blinded researchers screened the articles. The data were synthesised using a thematic analysis approach. DATA SOURCES: A systematic literature search was conducted using the CINAHL, Embase and MEDLINE databases. RESULTS: Seven studies were included, and three main roles were identified: (1) balancing between confidence and fear in clinical encounters, (2) facilitating collaboration and (3) managing challenging power dynamics in decision-making. CONCLUSION: Critical care nurses possess extensive knowledge and skills in providing critical care to patients experiencing deterioration on general wards. They play a vital role in facilitating collaboration between team members and ward staff. Furthermore, within the rapid response team, critical care nurses assume leadership responsibilities by overseeing the comprehensive coordination of patient care and actively engaging in the decision-making process concerning patient care. IMPLICATIONS FOR THE PROFESSION: Highlighting the central role of critical care nurses in rapid response teams as well such a team's benefits in healthcare organisations can promote applications for funding to support further quality assurance of rapid response teams and thus enhance patient safety. IMPACT: Health care organisations can assure the quality of rapid response team by providing economical resources and training. The education providers should facilitate and standardise curriculum for critical care nursing students to achieve necessary knowledge and skills as members in rapid response teams. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Comparison of Glasgow Coma Scale and Full Outline of UnResponsiveness score to assess the level of consciousness in patients admitted to intensive care units and emergency departments: A quantitative systematic review.

OBJECTIVES: We aimed to investigate the reliability and validity of the Glasgow Coma Scale (GCS) and the Full Outline of UnResponsiveness (FOUR) score used by nurses and physicians to assess the level of consciousness in patients admitted to intensive care units (ICUs) and emergency departments (EDs). REVIEW METHOD USED: This systematic review was guided by the Cochrane Handbook for Systematic Reviews of Interventions and followed the reporting standards of the Preferred Reporting Items for Systematic Review and Meta-Analysis Statement. DATA SOURCES: A systematic search was conducted using the following databases: CINAHL, MEDLINE, and EMBASE. REVIEW METHODS: All authors performed the study selection process, data collection, and assessment of quality. The following psychometric properties were addressed: inter-rater reliability, internal consistency, and construct validity. RESULTS: Six articles were included. The GCS and the FOUR scores demonstrated excellent reliability and very strong validity when used by nurses and physicians to assess the level of consciousness in patients admitted to the ICU and ED. The FOUR score demonstrated slightly higher overall reliability and validity than the GCS. CONCLUSION: This systematic review indicates that the FOUR score is especially suitable for assessing the level of consciousness in patients admitted to the ICU and ED. The FOUR score demonstrated higher reliability and validity than the GCS, making it a promising alternative assessment scale, despite the GCS's longstanding use in clinical practice.

Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review.

BACKGROUND: Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients' ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). METHODS: This review was conducted following the framework of Arksey and O'Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies' eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. RESULTS: This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a 'life buoy' to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. CONCLUSIONS: There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients.

Life after paediatric brain tumour; the perspectives of the survivors and their parents.

AIMS: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. DESIGN: A qualitative interview study using reflexive thematic analysis. METHODS: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9-52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. RESULTS: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors' future, including the risk of late effects, relapse or other complications. CONCLUSION: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. REPORTING METHOD: We used the COREQ guidelines when reporting the study. PATIENT OR PUBLIC CONTRIBUTION: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.

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).

Empowerment interventions designed for persons living with chronic disease - a systematic review and meta-analysis of the components and efficacy of format on patient-reported outcomes.

BACKGROUND: Empowerment approaches are essential for building the capacity of individuals with chronic disease to be in control of their health. Reviews of empowerment interventions have been focused on specific chronic diseases, thereby limiting the scope of findings. This study had three aims: 1) to describe the characteristics of empowerment interventions covering a broad range of chronic diseases, 2) to clarify consistency with the World Health Organization`s (WHO) definition of empowerment as a process composed of four fundamental components and 3) to summarize outcome measures and estimate the effects in group and individual intervention formats. METHODS: Systematic literature review and meta-analysis. CINAHL, Medline, Embase, PsycINFO, Web of Science, COCHRANE and Central Register of Controlled Trials were searched using Chronic Disease, NCD, Empowerment, as MeSH terms. Eligible randomized and quasi randomized controlled trials were included. Review Manager 5.4 was used to conduct the meta-analysis. Risk of bias was assessed with the Cochrane risk-of-bias tool (ROB 2). RESULTS: Thirty-nine articles representing 8,011 participants were included in the review. A majority (82%) of studies reported robust evidence for changes on study-defined outcome measures in favor of interventions. Intervention content was assessed against WHO's four fundamental components of empowerment, showing that all studies incorporated one component, but none targeted all components. Components reflecting knowledge acquisition, patient engagement with their health care providers and facilitating environment were scarcely reported. Meta-analyses found evidence for positive effects of group-format interventions measuring empowerment, HbA1c, and self-efficacy. Effects on empowerment were also found in some individual-format interventions. High levels of heterogeneity and variability among the conceptual frameworks were identified. CONCLUSION: Empowerment interventions in group-format were most efficient, however, considerable conceptual inconsistencies were identified. Future studies should consolidate conceptual understandings by using WHO's empowerment framework to ensure that fundamental components of empowerment are explicitly included in intervention design. Furthermore, there is a need to clarify the role of empowerment through pathways that include patient activation, self- management, and clinical outcomes. This systematic review will inform the clinicians and researchers who aim to develop novel empowerment interventions to assist patients in the process of gaining control of their health. TRIAL REGISTRATION: PROSPERO: International Prospective register of systematic reviews ID=CRD42020178286.

Critical care nurses' role in the decision-making process of withdrawal of life-sustaining treatment: A qualitative systematic review.

AIM: To synthesise the qualitative evidence regarding the role of critical care nurses in the decision-making process of withdrawing life-sustaining treatment in critically ill adults. DESIGN: Qualitative systematic review. REVIEW METHODS: This qualitative systematic review employed the guidelines of Bettany-Saltikov and McSherry. The review was reported according to the ENTREQ checklist. Pairs of authors independently assessed eligibility, appraised methodological quality and extracted data. Data were synthesised using thematic synthesis. DATA SOURCES: CINAHL, MEDLINE and EMBASE were searched for studies published between January 2001 and November 2021. RESULTS: Twenty-three studies were included. Three analytical themes were synthesised: performing ethical decision-making to safeguard patients' needs rights, and wishes; tailoring a supporting role to guide the family's decision-making process; and taking on the role of the middleman by performing coordination. CONCLUSION: The role of the critical care nurses in the decision-making process in withdrawal of life-sustaining treatment requires experience and the development of the clinical perspective of critical care nurses. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Enhanced knowledge of the decision-making process of withdrawing life-sustaining treatment can prepare critical care nurses to be more equipped to master this role and enhance their ability to handle the emotional and moral stress associated with this part of the critical care unit. IMPACT: The literature reveals the complex and challenging role of critical care nurses during the decision-making process of withdrawing life-sustaining treatment. Critical care nurses perform ethical decision-making to safeguard patients' concerns, guide the family's decision-making process and take on the role of the middleman. The findings have implications for critical nurses working in critical care units in hospitals and for educators and students in training in critical care nursing. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was included.

Simulation-based learning in palliative care in postgraduate nursing education: a scoping review.

BACKGROUND: Nurses require advanced competence in palliative care, but they face wide variations in education and a shortage in opportunities for clinical placement. Simulation-based learning (SBL) can enable students to develop clinical skills, critical thinking and confidence. No scoping reviews to date have mapped the use of SBL in palliative care within postgraduate nursing education. METHODS: The aim of this scoping review was to systematically map published studies on the use of SBL in palliative care in postgraduate nursing education. A scoping review was conducted using Arksey and O'Malley's (Int J Soc Res Meth 8(1):19-32, 2005) methodological framework. A systematic and comprehensive search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Education Resources Information Center (ERIC), Ovid MEDLINE, Ovid EMBASE, Allied and Complementary Medicine and PsycINFO was performed for studies published between January 2000 and April 2022. Two authors independently assessed papers for inclusion and extracted data. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. The protocol was registered on the Open Science Framework. RESULTS: This review includes 10 studies. Three thematic groupings were identified: enhanced understanding of the importance of teamwork, interdisciplinarity and interpersonal skills; preparedness and confidence in one's ability to communicate during emotionally challenging situations; and impact and relevance to one's own clinical practice. CONCLUSIONS: The use of SBL in palliative care in postgraduate nursing education seems to enhance students' understanding of the importance of teamwork and interdisciplinarity. The review shows contradictory results regarding whether SBL in palliative care increases students' confidence in their communication skills. Postgraduate nursing students experienced personal growth after participating in SBL. Because our findings indicate that limited research has been conducted within this field, future research should (1) explore postgraduate nursing students' experiences with SBL in palliative care with a focus on more practical content such as symptom management, (2) examine the relevance and application of SBL in clinical practice, and (3) be reported in line with recommendations on the reporting of simulation research.

Welfare technology interventions among older people living at home-A systematic review of RCT studies.

The main goal of health services is for the elderly to maintain their mental and physical health and live at home independently for as long as possible. Various technical welfare solutions have been introduced and tested to support an independent life. The aim of this systematic review was to examine different types of interventions and assess the effectiveness of welfare technology (WT) interventions for older people living at home. This study was prospectively registered in PROSPERO (CRD42020190316) and followed the PRISMA statement. Primary randomized control trial (RCT) studies published between 2015 and 2020 were identified through the following databases: Academic, AMED, Cochrane Reviews, EBSCOhost, EMBASE, Google Scholar, Ovid MEDLINE via PubMed, Scopus, and Web of Science. Twelve out of 687 papers met the criteria for eligibility. We used risk-of-bias assessment (RoB 2) for the included studies. Based on the RoB 2 outcomes that showed a high risk of bias (>50%) and high heterogeneity of quantitative data, we decided to narratively summarize the study characteristics, outcome measures, and implications for practice. The included studies were conducted in six countries, namely the USA, Sweden, Korea, Italy, Singapore, and the UK. One was conducted in three European countries (the Netherlands, Sweden, and Switzerland). A total of 8437 participants were sampled, and individual study sample sizes ranged from 12 to 6742. Most of the studies were two-armed RCTs, except for two that were three-armed. The duration of the welfare technology tested in the studies ranged from four weeks to six months. The employed technologies were commercial solutions, including telephones, smartphones, computers, telemonitors, and robots. The type of interventions were balance training, physical exercise and function, cognitive training, monitoring of symptoms, activation of emergency medical systems, self-care, reduction of death risk, and medical alert protection systems. The latter studies were the first of their kind and suggested that physician-led telemonitoring could reduce length of hospital stay. In summary, welfare technology seems to offer solutions to supporting elderly people at home. The results showed a wide range of uses for technologies for improving mental and physical health. All studies showed encouraging results for improving the participants' health status.

Health Care Professionals' Experiences of Facilitating Patient Activation and Empowerment in Chronic Illness using a Person-Centered and Strengths-Based Self-Management Program.

OBJECTIVE: Patients with chronic illness who are empowered and activated are more likely to engage in self-management in order to stabilise their condition and enhance their quality of life. This study aimed to explore Health Care Professional's (HCP) assessment of a person-centered intervention called 'The Bodyknowledging Program' (BKP) for the facilitation of empowerment and patient activation in the context of chronic illness. METHODS: This study employed a qualitative process evaluation after programme completion. Data was collected through focus-groups and individual interviews with HCPs and content analysis was used in the analysis. RESULTS: Four themes were identified: 1) Shifts towards the patient-perspective, 2) The value of a patient-centered conceptual framework, 3) Patient activation through dialogue based support and 4) Challenging competencies. Discussion: This study introduces 'The Bodyknowledging Program' as a useful tool to uncover patients' needs and to activate and empower them to take more responsibility for their health through self-care management. The usability of the new intervention depends on HCP's ability to develop their counselling skills and changing their approach towards utilising patients' individual resources in the promotion of their health.

Exploring reported distress before and pain during needle insertion into a venous access port in children with cancer.

BACKGROUND: Venous access port is commonly used during cancer treatment in children, yet little is known about how children experience such needle insertion procedures. AIM: To study distress before and pain after venous access port needle insertion among children and adolescents with cancer. A second aim was to explore associations between their self-report of procedure-related distress and pain with proxy reports by parents and nurses. METHOD: The sample included 43 children/adolescents, aged 1-16 years with cancer, treated at two Norwegian university hospitals. The patient, parent(s), and the nurse performing the procedure completed developmentally appropriate 11-point distress and pain scales before and immediately after the venous access port procedure. Data were analysed using descriptive statistics and non-parametric correlations. ETHICAL ISSUES: The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Regional Committee for Medicine and Health Research and the data protector officer at the hospitals. RESULTS: For the youngest children (1-5 years), the median distress proxy score was 8 (range 0-9) and pain proxy score 4 (range 0-10). Median distress and pain scores for children aged 6-12 years were 3 (range 0-9) and 1 (range 0-10), respectively, and for the adolescents (age 13-16) 0 (range 0-6) and 1 (range 0-5), respectively. Patients' self-reported distress and pain correlated highly with parents' (distress: rho = 0.83, p < 0.001, pain: rho = 0.92, p < 0.001) and with nurses' proxy ratings (distress: rho = 0.89, p < 0.001, pain: rho = 0.88, p < 0.001). CONCLUSION: There were individual age differences in experienced distress/pain associated with venous access port needle insertion, with a trend for younger children to experience higher levels of distress/ pain than the older children. Children's self-report of distress/ pain concurred with both parental and nurse proxy reports.

Perceived barriers and facilitators to physical activity in childhood cancer survivors and their parents: A large-scale interview study from the International PACCS Study.

BACKGROUND: Physical activity (PA) may reduce risks of late effects in childhood cancer survivors, yet many have low activity levels. Using the WHO's International Classification of Functioning, Disability, and Health for Children and Youths (ICF-CY) as a conceptual framework, we aimed to identify perceived barriers and facilitators to PA in young survivors and their parents. DESIGN/METHODS: We conducted individual, semi-structured interviews with 63 survivors, aged 9-18 years, ≥1-year off treatment, and 68 parents, recruited from three pediatric oncology departments in Norway and Denmark. Interviews were analyzed inductively using thematic analysis to identify barriers and facilitators to PA, which were mapped onto the ICF-CY model components; body function/structures, activities, participation, and environmental and personal factors. RESULTS: Two-thirds of the survivors described how treatment-related impairments of bodily functions (e.g., fatigue, physical weakness, reduced lung capacity) caused physical limitations, reducing opportunities to participate in PA, especially team sports and school physical education. This resulted in a perceived ability gap between survivors and peers, reducing motivation for PA. These PA barriers were moderated by environmental factors that facilitated or further hindered PA participation (family, peer, and school support). Similarily, personal factors also facilitated (acceptance, motivation, goal setting) or hindered (anxiety, low motivation, and lack of trust) PA participation. CONCLUSION: Treatment-related long-term or late effects represented significant barriers to PA as their functional consequences reduced survivors' capacities and capabilities to be active. Environmental and personal factors acting as facilitators or further barriers to PA were identified. Applying the ICF-CY framework in clinical practice could help to enable PA participation.

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.

The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study.

OBJECTIVE: In this sub-study from the 'PACCS' study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences. METHODS: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. RESULTS: Two main themes were identified: 'The post-treatment gap between expectations and reality' comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, 'Managing the gap', comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. CONCLUSION: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study.

BACKGROUND: Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. OBJECTIVE: The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). METHODS: The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ≥1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. RESULTS: Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. CONCLUSIONS: The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35838.

Definitions and measurement of health literacy in health and medicine research: a systematic review.

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.

Nursing interventions to cover patients' basic needs in the intensive care context - A systematic review.

AIM: To examine the content, theoretical frameworks and effectiveness of nursing interventions utilizing patient-reported outcome measures (PROMs) in the intensive care unit (ICU). DESIGN: A systematic review and narrative synthesis following the guidelines of the preferred reporting items for systematic reviews and meta-analysis checklist. METHODS: We searched the MEDLINE, CINAHL, PsycINFO, SweMed and Cochrane controlled trials register (CENTRAL) databases for studies evaluating interventions primarily delivered by nurses in the ICU. Two independent reviewers performed study selection, data extraction and risk of bias. RESULTS: Twenty-two studies were included, whereas only seven studies used a theoretical framework. The interventions were heterogeneous in content, duration and choice of PROMs. Outcomes were related to covering patients' and families' basic needs, described by Henderson as essential functions of nursing. Several studies reported positive intervention effects, and nurses' communication and psychosocial care were considered essential components of nursing interventions in the ICU.

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol.

INTRODUCTION: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. METHODS AND ANALYSIS: This scoping review will employ the framework of Arksey and O'Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies' eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. ETHICS AND DISSEMINATION: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research.