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| 2. |
- Bjørnnes, Ann Kristin, et al.
(author)
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Experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies.
- 2019
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In: BMJ open. - : BMJ. - 2044-6055. ; 9:11
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Journal article (peer-reviewed)abstract
- To provide a comprehensive synthesis of informal caregivers' experiences of caring for a significant other following discharge from cardiac surgery.Systematic integrated review without meta-analysis.A bibliographic search for publications indexed in six databases (Cochrane Library, CINAHL, MEDLINE, EMBASE, AMED and PsycINFO), including a scan of grey literature sources (GreyNet International, Google Scholar, Web of Science, WorldCat and the Clinical Trials Registry) was conducted in October 2018.Studies were included if they described views and perspectives of informal caregivers of cardiac surgery patients (non-intervention studies (qualitative and quantitative)), and the effectiveness of interventions to evaluate support programme for informal caregivers of cardiac surgery patients (intervention studies).Of the 4912 articles identified in searches, 42 primary research studies were included in a narrative synthesis with 5292 participants, including 3231 (62%) caregivers of whom 2557 (79%) were women. The median sample size across studies was 96 (range 6-734). Three major themes emerged from the qualitative study data: (1) caregiver information needs; (2) caregiver work challenges and (3) caregivers adaption to recovery. Across the observational studies (n=22), similar themes were found. The trend across seven intervention studies focused on caregiver information needs related to patient disease management and symptom monitoring, and support for caregivers to reduce symptoms of emotional distress.Informal caregivers want to assist in the care of their significant others after hospital discharge postcardiac surgery. However, caregivers feel insecure and overwhelmed and they lack clear/concise discharge information and follow-up support during the early at-home recovery period. The burden of caregiving has been recognised and reported since the early 1990s, but there remains a limited number of studies that assesses the effectiveness of caregiver interventions.CRD42018096590.
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| 3. |
- Brorsson, Anna Lena, 1964, et al.
(author)
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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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In: BMJ Open. - : BMJ. - 2044-6055. ; 10:4
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Journal article (peer-reviewed)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. |
- Cromhout, Pernille Fevejle, et al.
(author)
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Updating EuroSCORE by including emotional, behavioural, social and functional factors to the risk assessment of patients undergoing cardiac surgery: a study protocol.
- 2019
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In: BMJ open. - : BMJ. - 2044-6055. ; 9:7
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Journal article (peer-reviewed)abstract
- Conventional risk assessment in cardiac surgery focus on medical and physiological factors and have been developed to predict mortality. Other relevant risk factors associated with increased risk of poor outcomes are not included. Adding non-medical variables as potential prognostic factors to risk assessments direct attention away from specific diagnoses towards a more holistic view of the patients and their predicament. The aim of this paper is to describe the method and analysis plan for the development and validation of a prognostic screening tool as a supplement to the European System for Cardiac Operative Risk Evaluation (EuroSCORE) to predict mortality, readmissions and prolonged length of admission in patients within 90 days after cardiac surgery, as individual outcomes.The development of a prognostic screening tool with inclusion of emotional, behavioural, social and functional factors complementing risk assessment by EuroSCORE will adopt the methods recommended by the PROGnosis RESearch Strategy Group and report using the Transparent Reporting of a multivariable prediction model for Individual Prognosis Or Diagnosis statement. In the development stage, we will use data derived from three datasets comprising 1143, 3347 and 982 patients for a prospective cohort study of patients undergoing cardiac surgery, respectively. We will construct logistic regression models to predict mortality, prolonged length of admission and 90-day readmissions. In the validation stage, we will use data from a separate sample of 333 patients planned to undergo cardiac surgery to assess the performance of the developed prognostic model. We will produce validation plots showing the overall performance, area under the curve statistic for discrimination and the calibration slope and intercept.The study will follow the requirements from the Ethical Committee System ensuring voluntary participation in accordance with the Helsinki declarations. Data will be filed in accordance with the requirements of the Danish Data Protection Agency.
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| 5. |
- Ekman, Nina, et al.
(author)
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Are the content and usability of a new direct observation tool adequate for assessing competency in delivering person-centred care: a think-aloud study with patients and healthcare professionals in Sweden
- 2024
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In: BMJ OPEN. - : BMJ Publishing Group Ltd. - 2044-6055. ; 14:6
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Journal article (peer-reviewed)abstract
- Objective To evaluate the content and usability of a new direct observation tool for assessing competency in delivering person-centred care based on the Gothenburg Centre for Person-Centred Care (gPCC) framework. Design This is a qualitative study using think-aloud techniques and retrospective probing interviews and analyzed using deductive content analysis. Setting Sessions were conducted remotely via Zoom with participants in their homes or offices. Participants 11 participants with lengthy experience of receiving, delivering and/or implementing gPCC were recruited using purposeful sampling and selected to represent a broad variety of stakeholders and potential end-users. Results Participants generally considered the content of the four main domains of the tool, that is, person-centred care activities, clinician manner, clinician skills and person-centred care goals, to be comprehensive and relevant for assessing person-centred care in general and gPCC in particular. Some participants pointed to the need to expand person-centred care activities to better reflect the emphasis on eliciting patient resources/capabilities and psychosocial needs in the gPCC framework. Think-aloud analyses revealed some usability issues primarily regarding difficulties or uncertainties in understanding several words and in using the rating scale. Probing interviews indicated that these problems could be mitigated by improving written instructions regarding response options and by replacing some words. Participants generally were satisfied with the layout and structure of the tool, but some suggested enlarging font size and text spacing to improve readability. Conclusion The tool appears to satisfactorily cover major person-centred care activities outlined in the gPCC framework. The inclusion of content concerning clinician manner and skills was seen as a relevant embellishment of the framework and as contributing to a more comprehensive assessment of clinician performance in the delivery of person-centred care. A revised version addressing observed content and usability issues will be tested for inter-rater and intra-rater reliability and for feasibility of use in healthcare education and quality improvement efforts.
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| 6. |
- Ekman, Nina, et al.
(author)
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Observable indicators of person-centred care: an interview study with patients, relatives and professionals
- 2022
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In: BMJ Open. - : BMJ. - 2044-6055. ; 12:4
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Journal article (peer-reviewed)abstract
- Objective To identify key observable indicators of person-centred care (PCC) from interviews with patients, relatives and professionals with experience of receiving or working with PCC. Design A qualitative interview study using deductive content analysis. Setting Primary and hospital care settings in Western Sweden. Participants Twelve participants with extensive experience of receiving or working with PCC were interviewed: two patients, two patients representative with long-term conditions, one relative and informal carer, three registered nurses, one physician, two occupational therapists and one social worker/researcher. Results Nine observable indicators were identified and subsumed under three predetermined categories: initiating, working and safeguarding the partnership. The first category comprised three subcategories: welcoming, interested and courteous reception; agreeing on structure and aims of the conversation; and eliciting patients' wishes for involvement of significant others. The second category comprised four subcategories: attentive, empathic and encouraging manner; promoting mutual understanding; promoting patient engagement; and encouraging and friendly body language. The last category consisted of two subcategories: collaboration and transparency in documentation and verifying that patient's and professional's views, goals and wants are correctly documented. Conclusion Our results underline the need for health professionals to actively and conscientiously convey to patients their interest in and respect for the patient as a person and their willingness to collaborate as partners in their care from the very outset of the interaction. Non-verbal behaviours were seen to play a major role in shaping patients' impressions of health professionals. Given that patients' first impressions were considered to impact the content, course and outcomes of the interaction, more research attention should be given to their implications for the effective delivery of PCC.
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| 7. |
- Goossens, Godelieve Alice, et al.
(author)
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SecurAstaP trial: securement with SecurAcath versus StatLock for peripherally inserted central catheters, a randomised open trial.
- 2018
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In: BMJ open. - : BMJ. - 2044-6055. ; 8:2
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Journal article (peer-reviewed)abstract
- To assess the effect on needed nursing time for dressing change.A parallel-group, open-label, randomised controlled trial in patients who are in need for a peripherally inserted central catheter insertion in one teaching hospital in Belgium. The follow-up lasted 180 days or until catheter removal, whatever came first. A computer generated table was used to allocate devices. Randomised patients were 105 adults (StatLock, n=53; SecurAcath, n=52) and primary analysis was based on all patients (n=92) with time measurements (StatLock, n=43; SecurAcath, n=49).StatLock which has to be changed weekly versus SecurAcath which could remain in place for the complete catheter dwell time.Needed time for the dressing change at each dressing change (SecurAcath) or at each dressing change combined with the change of the securement device (StatLock).Median time needed for dressing change was 7.3min (95%CI 6.4min to 8.3min) in the StatLock group and in the SecurAcath group 4.3min (95%CI 3.8 min to 4.9min) (P<0.0001). The time in the SecurAcath group was reduced with 41% (95% CI 29% to 51%). Incidence rates of migration, dislodgement and catheter-related bloodstream infection were comparable across groups. Pain scores were higher with SecurAcath than with StatLock at insertion (P=0.02) and at removal (P<0.001) and comparable during dressing change (P=0.38) and during dwell time (P=0.995). User-friendliness was scored at insertion and removal. All statements regarding the user-friendliness were scored significantly higher for StatLock than for SecurAcath (P<0.05). Only for the statement regarding the recommending routine use of the device, which was asked at removal, no difference was found between the two devices (P=0.32).Use of SecurAcath saves time during dressing change compared with StatLock. Training on correct placement and removal of SecurAcath is critical to minimise pain.NCT02311127; Pre-results.
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| 8. |
- Højskov, Ida Elisabeth, et al.
(author)
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SheppHeartCABG trial-comprehensive early rehabilitation after coronary artery bypass grafting: a protocol for a randomised clinical trial.
- 2017
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In: BMJ open. - : BMJ. - 2044-6055. ; 7:1
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Journal article (peer-reviewed)abstract
- Patients undergoing coronary artery bypass graft surgery often experience a range of symptoms. Studies indicate that non-pharmacological interventions such as exercise training and psychoeducation have a positive physiological and psychological effect in early outpatient rehabilitation. The SheppHeartCABG trial will investigate the effect of early comprehensive rehabilitation in early phase rehabilitation versus usual care. The aim of this paper is to present the protocol for the SheppHeartCABG trial.SheppHeartCABG is an investigator-initiated randomised clinical superiority trial with blinded outcome assessment, employing 1:1 central randomisation to rehabilitation plus usual care versus usual care alone. On the basis of a sample size calculation, 326 patients undergoing coronary artery bypass grafting will be included from two clinical sites. All patients receive usual care and patients allocated to the experimental intervention follow 4weeks rehabilitation consisting of an exercise programme, psycho-educative consultations and a compact mindfulness programme. The primary outcome is physical function measured by the 6-min walk test. The secondary outcomes are mental health and physical activity measured by the Medical Outcome Study Short Form (SF-12), anxiety and depression measured by the Hospital Anxiety and Depression Scale questionnaire, physical, emotional and global scores by the HeartQoL questionnaire, sleep measured by the Pittsburgh Sleep Quality Index, pain measured by the Örebro Musculoskeletal Screening Questionnaire and muscle endurance measured by the sit-to-stand test. A number of explorative analyses will also be conducted.SheppHeartCABG is approved by the regional ethics committee (no. H-4-2014-109) and the Danish Data Protection Agency (no. 30-1309) and is performed in accordance with good clinical practice and the Declaration of Helsinki in its latest form. Positive, neutral and negative results of the trial will be submitted to international peer-reviewed journals. Furthermore, results will be presented at national and international conferences relevant to the subject fields.NCT02290262; pre-results.
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| 9. |
- Saarijärvi, Markus, 1988, et al.
(author)
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Transition program for adolescents with congenital heart disease in transition to adulthood : protocol for a mixed-method process evaluation study (the STEPSTONES project)
- 2019
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In: BMJ Open. - : BMJ. - 2044-6055. ; 9:8
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Journal article (peer-reviewed)abstract
- INTRODUCTION: Today, the majority of young persons living with chronic conditions in high-income countries survive into adulthood and will need life-long medical follow-up. Therefore, transition programmes have been developed to facilitate transfer to adult care, and to support self-management and independence during adulthood. The Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS (STEPSTONES) project aims to evaluate the effectiveness of a person-centred transition programme for empowering adolescents with congenital heart disease in transition to adulthood. To understand how the transition programme causes change and how outcomes are created, process evaluation is imperative to assess implementation, context and mechanisms of impact. This protocol aims to describe the process evaluation of the STEPSTONES transition programme.METHODS AND DESIGN: Medical Research Council guidance for process evaluation of complex interventions will be the guiding framework for this mixed-method study. The combination of qualitative and quantitative data will capture different aspects of programme delivery. The sample will consist of participants in the STEPSTONES randomised controlled trial (RCT), persons implementing the programme and healthcare professionals. Quantitative data will consist of protocols and routine monitoring documents from the RCT, data collected from patient registries and sociodemographic data to assess the implementation of the intervention. This data will be analysed with quantitative content analysis, along with descriptive and inferential statistics. Qualitative data will consist of participatory observations, logbooks and interviews with persons implementing the programme, participants and healthcare professionals. Analyses will be performed using qualitative content analysis to investigate mechanism of impact, context and delivery. Quantitative and qualitative data will be integrated in the final stage by using a triangulation protocol according to mixed-method guidelines.ETHICS AND DISSEMINATION: The study is approved by the Regional Ethical Review Board in Gothenburg, Sweden. Results will be presented in open access, peer-reviewed journals and at international scientific conferences.
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| 10. |
- Skogby, Sandra, 1989, et al.
(author)
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Qualitative study of facilitators and barriers for continued follow-up care as perceived and experienced by young people with congenital heart disease in Sweden
- 2021
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In: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 11:10
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Journal article (peer-reviewed)abstract
- In-depth understanding of factors perceived by young people with congenital heart disease (CHD) to affect continued follow-up care is needed to tailor preventive strategies for discontinuation of follow-up care. To identify facilitating factors, low-prevalence settings in terms of discontinuation should be investigated.Objective: This qualitative study describes factors affecting continued follow-up as perceived and experienced by young adults with CHD.Participants: Using a mixed purposive sampling technique, 16 young adults with CHD were included. Three participants had discontinued follow-up care and 13 had continued follow-up care after transfer.Setting: Participants were recruited from all seven university hospitals in Sweden, which is considered a low-prevalence setting in terms of discontinuation.Design: Individual interviews were performed and subjected to qualitative content analysis.Results: The analysis resulted in three main categories, illuminating factors affecting continued follow-up: (1) motivation for follow-up care; (2) participation in care and sense of connectedness with healthcare provider (HCP) and (3) care accessibility. The choice of continuing follow-up or not was multifactorial. Knowledge of your CHD and the importance of continuing follow-up care was a central factor, as well as experiencing CHD-related symptoms and having ongoing or planned medical treatment or interventions. Sensing a clear purpose with follow-up care was facilitating, as was feeling well treated and cared for by HCPs. Practical aspects, such as travel distance was also stressed, as well as active invitations and reminders for visits.Conclusion: Factors on both patient, hospital and healthcare system level were raised by participants, stressing the importance of holistic approaches when developing preventive strategies for discontinuation. There is a need for improved skills and competencies among HCPs, as well as a person-centred approach to follow-up care. In addition, specific healthcare needs and remaining transitional needs after transfer to adult care require careful consideration to prevent discontinuation.
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