| 1. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Empowering young persons during the transition to adulthood
- 2020
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Ingår i: Transition from Pediatric to Adult Healthcare Services for Young Adults with Long-Term Conditions: An International Perspective on Nurses Roles and Interventions. - Cham : Springer International Publishing. - 9783030233839 ; , s. 19-46
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 2. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Empowering young persons with congenital heart disease: Using intervention mapping to develop a transition program - the STEPSTONES project.
- 2020
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Ingår i: Journal of pediatric nursing. - : Elsevier BV. - 1532-8449 .- 0882-5963. ; 50
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Tidskriftsartikel (refereegranskat)abstract
- Describe the implementation of intervention mapping in the development of a transition program that aims to empower adolescents with congenital heart disease.To gain a better understanding of the problem, we conducted a literature review, focus group and individual interviews, and a cross-sectional survey. This information helped us decide on the scope of the intervention, relevant theories, determinants, formulate performance and change objectives and identify adequate evidence-based change methods. Once the transition program had been designed, effectiveness and process evaluation studies were planned.Young persons with congenital heart disease have insufficient disease-related knowledge, self-management skills and high parental involvement. The transition program involves three meetings with a trained transition coordinator over a two-and-a-half-year period and targets young persons with congenital heart disease and their parents. The transition coordinators use change techniques such as goal-setting, modeling and active learning in order to target three personal determinants (knowledge, self-efficacy and self-management).The use of intervention mapping may lead to designing interventions tailored to the needs of the targeted population. The transition program described in this paper is currently being evaluated in a hybrid experimental design with simultaneous undertaking of the process evaluation.This transition program can lead to the empowerment of young persons with congenital heart disease and help them in the process of becoming more responsible for their care. If proven effective, it can be implemented for other chronic conditions.
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| 3. |
- Brorsson, Anna Lena, 1964, et al.
(författare)
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Randomised controlled trial of a person-centred transition programme for adolescents with type 1 diabetes (STEPSTONES-DIAB): a study protocol
- 2020
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:4
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Adolescence is a critical period for youths with chronic conditions, when they are supposed to take over the responsibility for their health. Type 1 diabetes (T1D) is one of the most common chronic conditions in childhood and inadequate self-management increases the risk of short-term and long-term complications. There is a lack of evidence regarding the effectiveness of transition programmes. As a part of the Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS research programme, the objective of this study is to evaluate the effectiveness and experiences of different transitional care models, including a person-centred transition programme aiming to empower adolescents with T1D to become active partners in their health and care. Methods and analysis In this randomised controlled trial, patients are recruited from two paediatric diabetes clinics at the age of 16 years. Patients are randomly assigned to either the intervention group (n=70) where they will receive usual care plus the structured transition programme, or to the control group (n=70) where they will only receive usual care. Data will be collected at 16, 17 and 18.5 years of age. In a later stage, the intervention group will be compared with adolescents in a dedicated youth clinic in a third setting. The primary outcome is patient empowerment. Secondary outcomes include generic, diabetes-specific and transfer-specific variables. Ethics and dissemination The study has been approved by the Ethical Review Board in Stockholm (Dnr 2018/1725-31). Findings will be reported following the Consolidated Standards of Reporting Trials statement and disseminated in peer-reviewed journals and at international conferences.
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| 4. |
- Chiang, Yueh-Tao, et al.
(författare)
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Emergence of a butterfly: the life experiences of type 1 diabetes Taiwanese patients during the 16-25 years old transition period.
- 2020
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Ingår i: International journal of qualitative studies on health and well-being. - : Informa UK Limited. - 1748-2631. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To explore the life experiences of patients with type 1 diabetes transition from adolescence into adulthood in Taiwan.Methods: Descriptive phenomenological design was used. Fourteen participants were individually interviewed using a semi-structured interview.Results: The life experiences of patients with type 1 diabetes transition from adolescence into adulthood experience a metamorphosis from awareness of responsibility to figuring out a way to care for themselves. Six themes emerged: (1) hibernation: awareness of responsibility; (2) emergence: attempts to take responsibility; (3) perseverance: encountering difficulties; (4)anxiety: multiple worries; (5) hesitation: back-and-forth," and (6) exit: finding a way out."Conclusions: During the transition phase, the participants experienced the trials of various situations. Regardless of whether they are able to independently bear the responsibilities of self-management, they all hope to turn around the challenges of disease control and take ownership of their disease. Like a butterfly that emerges from a cocoon, they hoped to overcome the dangers of taking flight through trial and error and navigating the world. The results of this study can serve as a reference for clinical care and developing localized intervention strategies targeted to the transition period between adolescence and young adulthood.
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| 5. |
- Danielsen, Stein Ove, et al.
(författare)
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Facilitators of and barriers to reducing thirty-day readmissions and improving patient-reported outcomes after surgical aortic valve replacement: a process evaluation of the AVRre trial.
- 2020
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Ingår i: BMC health services research. - : Springer Science and Business Media LLC. - 1472-6963. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- The Aortic Valve Replacement Readmission (AVRre) randomized control trial tested whether a telephone intervention would reduce hospital readmissions following surgical aortic valve replacement (SAVR). The telephone support provided 30days of continuous phone-support (hotline) and two scheduled phone-calls from the hospital after discharge. The intervention had no effect on reducing 30-day all-cause readmission rate (30-DACR) but did reduce participants' anxiety compared to a control group receiving usual care. Depression and participant-reported health state were unaffected by the intervention. To better understand these outcomes, we conducted a process evaluation of the AVRre trial to gain insight into the (1) the dose and fidelity of the intervention, (2) mechanism of impacts, and (3) contextual factors that may have influenced the outcomes.The process evaluation was informed by the Medical Research Council framework, a widely used set of guidelines for evaluating complex interventions. A mix of quantitative (questionnaire and journal records) and qualitative data (field notes, memos, registration forms, questionnaire) was prospectively collected, and retrospective interviews were conducted. We performed descriptive analyses of the quantitative data. Content analyses, assisted by NVivo, were performed to evaluate qualitative data.The nurses who were serving the 24/7 hotline intervention desired to receive more preparation before intervention implementation. SAVR patient participants were highly satisfied with the telephone intervention (58%), felt safe (86%), and trusted having the option of calling in for support (91%). The support for the telephone hotline staff was perceived as a facilitator of the intervention implementation. Content analyses revealed themes: "gap in the care continuum," "need for individualized care," and "need for easy access to health information" after SAVR. Differences in local hospital discharge management practices influenced the 30-DACR incidence.The prospective follow-up of the hotline service during the trial facilitated implementation of the intervention, contributing to high participant satisfaction and likely reduced their anxiety after SAVR. Perceived less-than-optimal preparations for the hotline could be a barrier to AVRre trial implementation. Integrating user experiences into a mixed-methods evaluation of clinical trials is important for broadening understanding of trial outcomes, the mechanism of impact, and contextual factors that influence clinical trials.ClinicalTrials.gov, NCT02522663. Registered on 11 August 2015.
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| 6. |
- Danielsen, Stein Ove, et al.
(författare)
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Impact of telephone follow-up and 24/7 hotline on 30-day readmission rates following aortic valve replacement -A randomized controlled trial.
- 2020
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Ingår i: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 300, s. 66-72
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Tidskriftsartikel (refereegranskat)abstract
- Thirty-day all-cause readmissions are high after aortic valve replacement (AVR). We aimed to assess the effectiveness of a structured telephone follow-up (TFU) and a 24/7 hotline on reducing 30-day all-cause readmission (30-DACR) after AVR, on reducing symptoms of anxiety and depression and on improving perceived health state.A prospective randomized controlled trial was conducted. Patients (n=288) were randomly allocated to either post-discharge usual care or to care that provided TFU and access to a 24/7 hotline after AVR. Ancillary endpoints were time-to-event (readmission), proportion of avoidable versus unavoidable readmissions after AVR, and predictors of 30-DACR after AVR.30-DACR was 22.3%. The structured TFU and 24/7 hotline intervention failed to reduce 30-DACR rates after AVR (P=0.274). Symptoms of anxiety were significantly reduced 30days after surgery (P=0.031), an effect that did not persist one year after surgery (P=0.108). Most readmissions occurred before 15days post-discharge, and 75% of them were deemed to be unavoidable. Pleural drainage before hospital discharge (P=0.027) and symptoms of anxiety before surgery (P=0.003) were predictors of 30-DACR after AVR.The TFU and 24/7 hotline had no effect on reducing 30-DACR after AVR. However, we did measure reduced symptoms of anxiety the first month after AVR. Anxiety reduction appeared to be an important target for intervention, because we found it to be a risk factor for readmission. Future research should focus on the effectiveness of interventions to prevent avoidable unplanned readmissions.ClinicalTrial.gov, NCT02522663.
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| 7. |
- Ekman, Nina, et al.
(författare)
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A state-of-the-art review of direct observation tools for assessing competency in person-centred care
- 2020
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Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 109
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Forskningsöversikt (refereegranskat)abstract
- BACKGROUND: Direct observation is a common assessment strategy in health education and training, in which trainees are observed and assessed while undertaking authentic patient care and clinical activities. A variety of direct observation tools have been developed for assessing competency in delivering person-centred care (PCC), yet to our knowledge no review of such tools exists.OBJECTIVE: To review and evaluate direct observation tools developed to assess health professionals' competency in delivering PCC.DESIGN: State-of-the-art review DATA SOURCES: Electronic literature searches were conducted in PubMed, ERIC, CINAHL, and Web of Science for English-language articles describing the development and testing of direct observation tools for assessing PCC published until March 2017.REVIEW METHODS: Three authors independently assessed the records for eligibility. Duplicates were removed and articles were excluded that were irrelevant based on title and/or abstract. All remaining articles were read in full text. A data extraction form was developed to cover and extract information about the tools. The articles were examined for any conceptual or theoretical frameworks underlying tool development and coverage of recognized PCC dimensions was evaluated against a standard framework. The psychometric performance of the tools was obtained directly from the original articles.RESULT: 16 tools were identified: five assessed PCC holistically and 11 assessed PCC within specific skill domains. Conceptual/theoretical underpinnings of the tools were generally unclear. Coverage of PCC domains varied markedly between tools. Most tools reported assessments of inter-rater reliability, internal consistency reliability and concurrent validity; however, intra-rater reliability, content and construct validity were rarely reported. Predictive and discriminant validity were not assessed.CONCLUSION: Differences in scope, coverage and content of the tools likely reflect the complexity of PCC and lack of consensus in defining this concept. Although all may serve formative purposes, evidence supporting their use in summative evaluations is limited. Patients were not involved in the development of any tool, which seems intrinsically paradoxical given the aims of PCC. The tools may be useful for providing trainee feedback; however, rigorously tested and patient-derived tools are needed for high-stakes use.
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| 8. |
- Holbein, Christina E., et al.
(författare)
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Health behaviours reported by adults with congenital heart disease across 15 countries
- 2020
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Ingår i: European Journal of Preventive Cardiology. - : Oxford University Press (OUP). - 2047-4873 .- 2047-4881. ; 10, s. 1077-1087
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Tidskriftsartikel (refereegranskat)abstract
- Background: Health behaviours are essential to maintain optimal health and reduce the risk of cardiovascular complications in adults with congenital heart disease. This study aimed to describe health behaviours in adults with congenital heart disease in 15 countries and to identify patient characteristics associated with optimal health behaviours in the international sample. Design: This was a cross-sectional observational study. Methods: Adults with congenital heart disease (n = 4028, median age = 32 years, interquartile range 25–42 years) completed self-report measures as part of the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS). Participants reported on seven health behaviours using the Health Behaviors Scale-Congenital Heart Disease. Demographic and medical characteristics were assessed via medical chart review and self-report. Multivariate path analyses with inverse sampling weights were used to investigate study aims. Results: Health behaviour rates for the full sample were 10% binge drinking, 12% cigarette smoking, 6% recreational drug use, 72% annual dental visit, 69% twice daily tooth brushing, 27% daily dental flossing and 43% sport participation. Pairwise comparisons indicated that rates differed between countries. Rates of substance use behaviours were higher in younger, male participants. Optimal dental health behaviours were more common among older, female participants with higher educational attainment while sports participation was more frequent among participants who were younger, male, married, employed/students, with higher educational attainment, less complex anatomical defects and better functional status. Conclusions: Health behaviour rates vary by country. Predictors of health behaviours may reflect larger geographic trends. Our findings have implications for the development and implementation of programmes for the assessment and promotion of optimal health behaviours in adults with congenital heart disease. © The European Society of Cardiology 2019.
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| 9. |
- Lévesque, Valérie, et al.
(författare)
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Implantable Cardioverter-Defibrillators and Patient-Reported Outcomes in Adults with Congenital Heart Disease : an International Study
- 2020
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Ingår i: Heart Rhythm. - : Elsevier BV. - 1547-5271 .- 1556-3871. ; 17:5, s. 768-776
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are increasingly used to prevent sudden deaths in the growing population of adults with congenital heart disease (CHD). Yet, little is known about their impact on patient-reported outcomes (PROs).OBJECTIVE: We assessed and compared PROs in adults with CHD with and without ICDs.METHODS: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents.RESULTS: A total of 3,188 patients were included: 107 with ICDs and 3,081 weight-matched controls without ICDs. ICD recipients averaged 40.1±12.4 years of age, with >95% having moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviours did not differ significantly in patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56, P=0.011). Those with secondary compared to primary prevention indications had a significantly lower quality of life score (linear analogue scale 72.0±23.1 versus 79.2±13.0, P=0.047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (versus controls) from Switzerland, Argentina, Taiwan, and USA.CONCLUSIONS: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.
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| 10. |
- Moons, Philip, 1968
(författare)
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APPROACH-IS II
- 2020
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Ingår i: 30th International symposium on Adult Congenital Heart Disease. Cincinnati Children’s Hospital – Virtual.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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