| 1. |
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| 2. |
- 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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| 3. |
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| 4. |
- Vallmark, Mikaela, 1988, et al.
(författare)
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Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.
- 2023
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Ingår i: Journal of patient-reported outcomes. - : Springer. - 2509-8020. ; 7:1
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Tidskriftsartikel (refereegranskat)abstract
- During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes.Initial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n=163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness.Combining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach's alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach's alpha approximated to 0.8 for all factors respectively.TEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults' experiences of preparation for transition and transfer.
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| 7. |
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| 8. |
- Acuña Mora, Mariela, et al.
(författare)
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Definitions, instruments and correlates of patient empowerment : A descriptive review
- 2021
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Ingår i: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134.
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Forskningsöversikt (refereegranskat)abstract
- Objective: This review aimed to: (i) inventory the definitions and measurements of patient empowerment in healthcare literature; (ii) appraise the conceptual and methodological rigor of included studies; and (iii) identify correlates of patient empowerment in persons with chronic conditions.Methods: Four databases were searched to identify articles measuring patient empowerment in persons with chronic conditions, used a quantitative design and provided evidence on correlates of patient empowerment. Seventy-six articles were included and analyzed by descriptive statistics and summative content analysis.Results: The articles used a range of definitions (n = 35) and instruments (n = 38), evaluating a range of correlates in four categories: sociodemographic characteristics, clinical outcomes, patient-reported outcomes and patient-reported experiences. The most frequent associations were between patient empowerment and age (n = 21), sex (n = 15), educational level (n = 15) and quality of life (n = 18). However, they were not always significant.Conclusion: The broad variation of definitions and instruments highlights the lack of consensus on how to interpret and measure patient empowerment. Although several covariates have been evaluated, there are few studies assess the same relationships.Practice implications: Consensus on a definition and measurement of patient empowerment is needed to improve the quality of future research and to provide a more cohesive body of knowledge.
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| 9. |
- 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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| 10. |
- 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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| 11. |
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| 12. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Hybrid experimental design: A suitable design to tackle contamination of control groups
- 2016
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Ingår i: Nordic Conference in Nursing Research: Methods and Networks for the Future, June 15-17, Stockholm.
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Konferensbidrag (refereegranskat)abstract
- Background: Randomized controlled trials (RCTs) are considered to be the “gold standard” to assess the effectiveness of interventions. Because nursing interventions are most likely complex, multicomponent interventions, RCTs are often not suitable due to the risk of contamination of the control group. Such contamination can lead to a lower point estimate of the intervention’s effect and to underestimate the difference between both groups. Objective: To describe an innovative study design aiming to verify the contamination in the control group when testing the effectiveness of a person-centered transition program for adolescents with congenital heart disease (ConHD). Design: A hybrid experimental design is developed, in which a longitudinal, observational study is embedded in a RCT, resulting in a 3-arms design. The study will be conducted in 4 ConHD-centers in Sweden. Two centers will perform the RCT, by randomly assigning patients to either the experimental group (60 patients) or the comparison group (60 patients). This latter group may be subject of contamination. Two other centers are “intervention-naïve” and therefore comprise a contamination-free control group (120 patients). The occurrence of contamination will be investigated by comparing the comparison group and control group. Participants and setting: Participants are literate, Swedish-speaking adolescents with ConHD, aged 16 years and their parents. Discussion: This hybrid experimental design will give us the opportunity to investigate potential contamination of the comparison group, by studying differences with the control group from intervention-naïve centers. If this design is successful, it can be employed in the evaluation of complex nursing interventions.
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| 14. |
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| 15. |
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| 16. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Patient empowerment and its correlates in young persons with congenital heart disease
- 2019
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 18:5, s. 389-398
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The objective of this study was to measure the level of empowerment and identify its correlates in young persons with congenital heart disease. Study design: Patients aged 14–18 years with congenital heart disease, and under active follow-up in one of four paediatric cardiology centres in Sweden were invited to participate in a cross-sectional study. A total of 202 young persons returned the questionnaires. Patient empowerment was measured with the Gothenburg Young Persons Empowerment Scale that allows the calculation of total and subscale scores. Univariate and multivariate linear regression analyses were undertaken to analyse possible correlates, including: sex, age, health behaviours, knowledge of congenital heart disease, quality of life, patient-reported health, congenital heart disease complexity, transition readiness and illness perception. Results: The mean empowerment score was 54.6±10.6 (scale of 15–75). Univariate analyses showed that empowerment was associated with age, quality of life, transition readiness, illness perception, health behaviours and patient-reported health (perceived physical appearance, treatment anxiety, cognitive problems and communication issues). However, multivariable linear regression analyses identified that only transition readiness (β=0.28, P<0.001) and communication (β=0.36, P<0.001) had a positive association with patient empowerment. These variables were also significantly associated with the subscale scores of the empowerment scale of knowledge and understanding (P<0.001), shared decision-making (P<0.001) and enabling others (P<0.01). The overall models’ explained variance ranged from 8% to 37%. Conclusion: Patient empowerment was associated with transition readiness and fewer problems communicating. While it is not possible to establish the directionality of the associations, interventions looking to increase empowerment could benefit from using these variables (or measurements) for evaluation purposes.
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| 17. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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Patient empowerment in young persons with chronic conditions: Psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES).
- 2018
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 13:7
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Tidskriftsartikel (refereegranskat)abstract
- Empowerment in patients can lead to a higher participation in care and self-management skills. However, there are a limited number of high-quality instruments to assess empowerment and its various dimensions in young persons. The aim was to develop and assess the psychometric properties of the Gothenburg Young Persons Empowerment Scale (GYPES).The GYPES is a 15-item questionnaire designed to measure patient empowerment in young persons with chronic conditions. Three studies were conducted to evaluate the psychometric properties of the scale. Studies I and II assessed face, content and factorial validity, as well as responsiveness and reliability in young persons with congenital heart disease and diabetes. After these studies problematic items were identified and reworded and the final version of the GYPES was tested in young persons with diabetes in study III.The content and face validity of the scale was confirmed in study I. Confirmatory factor analyses (CFA) in study II supported the five-factor structure of the GYPES. However, one item had a low factor loading. The scale was revised and evaluated in study III. CFA of this version supported adequate model fit with factor loadings ranging from 0.385-0.941. A second-order model had an adequate fit to the data. Cronbach's alpha for the overall scale was 0.858 and for each subscale, alphas range from 0.609-0.858.GYPES was developed to measure patient empowerment in young persons with chronic conditions. Preliminary evidence supports that the GYPES may be a valid and reliable tool for assessing young persons' empowerment.
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| 18. |
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| 19. |
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| 20. |
- Acuña Mora, Mariela, et al.
(författare)
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Taking Charge of Your Health : Enabling Patient Empowerment in Cardiovascular Care
- 2024
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press. - 1474-5151 .- 1873-1953.
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Tidskriftsartikel (refereegranskat)abstract
- Guidelines and consensus in cardiovascular care in recent years have called for patients to be more involved in their care, which can be achieved by becoming more empowered. Yet, there is little clarity on how healthcare professionals can help the patients achieve this goal. The present paper defines patient empowerment, its benefits and the different strategies that can be used in healthcare to empower them. Moreover, potential barriers in the empowering process are also discussed.
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| 21. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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The longitudinal association between patient empowerment and patient-reported outcomes: What is the direction of effect?
- 2022
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 17:11
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Tidskriftsartikel (refereegranskat)abstract
- Theoretical literature and cross-sectional studies suggest empowerment is associated with other patient-reported outcomes (PROs). However, it is not known if patient empowerment is leading to improvements in other PROs or vice versa.The present study aimed to examine the direction of effects between patient empowerment and PROs in young persons with congenital heart disease (CHD).As part of the STEPSTONES-CHD trial, adolescents with CHD from seven pediatric cardiology centers in Sweden were included in a longitudinal observational study (n = 132). Data were collected when patients were 16 (T0), 17 (T1) and 18 ½ years old (T2). The Gothenburg Young Persons Empowerment Scale (GYPES) was used to measure patient empowerment. Random intercepts cross-lagged panel models between patient empowerment and PROs (communication skills; patient-reported health; quality of life; and transition readiness) were undertaken.We found a significant cross-lagged effect of transition readiness over patient empowerment between T1 and T2, signifying that a higher level of transition readiness predicted a higher level of patient empowerment. No other significant cross-lagged relationships were found.Feeling confident before the transition to adult care is necessary before young persons with CHD can feel in control to manage their health and their lives. Clinicians interested in improving patient empowerment during the transitional period should consider targeting transition readiness.
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| 22. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
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The Scope of Research on Transfer and Transition in Young Persons With Chronic Conditions
- 2019
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Ingår i: Journal of Adolescent Health. - : Elsevier BV. - 1054-139X .- 1879-1972. ; 65:5, s. 581-589
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Tidskriftsartikel (refereegranskat)abstract
- Purpose To determine the amount, type, and evidence level of published literature on transfer and/or transition of young people with chronic conditions (CCs) and to describe the characteristics of such studies. Methods Databases including PubMed, CINAHL, Web of Science, and Scopus were searched for publications in English, French, Spanish, Dutch, or Swedish. Included publications were related to transfer and/or transition of young persons (10–25 years) with a CC. Grey literature was excluded. Region and country where the study was performed, type of study design, study population (i.e., type of CC, sample size, group), and data collection methods were extracted from the studies. Results We included 952 publications for data analysis, of which 790 were quantitative, 128 qualitative, and 34 multimethods or mixed methods studies. Only seven studies were experimental designs, and the majority (n = 341) were categorized as expert opinion or narrative reviews. Endocrinology and neurology were the most common medical specialties involved in the studies, and young persons were the most represented group, while health-care providers were involved the least. Conclusions The majority of publications are categorized at the lowest evidence level. Furthermore, evidence is limited to a certain group of medical specialties.
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| 23. |
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| 24. |
- Asp, Ann, et al.
(författare)
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Transfer to adult care : experiences of young adults with congenital heart disease
- 2015
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Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 30:5, s. e3-e10
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Tidskriftsartikel (refereegranskat)abstract
- Mer än 90 % av barn med medfödda hjärtfel överlever upp i vuxen ålder tack vare utveckling av hjärtkirurgi och medicinsk behandling. Intervjuer med 16 unga vuxna med medfödda hjärtfel i syfte att undersöka deras upplevelser av hur överföringen från barnsjukvård till vuxenvård genomfördes. Analysen identifierade fem tema: Att känna trygghet i överföringen, Att känna tillit till vården, Att förväntas bli delaktig i vården, Att ta över ansvaret för sin hälsa är en process, och Att sakna kunskap leder till osäkerhet. Sammanfattningsvis, en strukturerad och gradvis överföring är nödvändig för att få informanterna att axla ansvaret för sin egenvård.
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| 27. |
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| 28. |
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| 29. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Adolescents with congenital heart disease - Parent’s perceptions and expectations about transition and transfer to adult care
- 2016
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Ingår i: 46th Nordic Meeting in Paediatric Cardiology. 21-23 September 2016. Båstad, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: People with congenital heart disease (CHD) might need life-long medical follow-up and transfer to adult care (ACHD). An optimal transition process involves collaboration where parents and other family members are integrated, along with the patient and healthcare providers. The active role might be difficult for parents. Aim: Explore parent’s perceptions and expectations about transition and transfer to adult care. Method: Semi-structured interviews with 18 parents to adolescents with CHD, 14-18 years of age, were conducted in four pediatric cardiology settings in Sweden. Results: Three different categories were formulated: Need of knowledge; information addressed to the adolescent regarding the CHD, coming treatment and late-effects, but also general information about the ACHD-organization and future follow-up was emphasized. Other important aspects were smoking, alcohol, contraceptives, sex and pregnancy. Information given in a group and face-to face information was preferred included a visit to ACHD-outpatient clinic before transfer. Mixed feelings; the parents knew that transfer was a natural step, but were concerned and worried due to lack of knowledge about the process and new caregivers. Being involved made them feel secure. Timing; the parents expressed concerns over when and how the process should start. The majority considered the age of 11-12 year too early, while 15-16 years were considered more appropriate to start the transition process, depending of the adolescent’s maturity. Most parents had started handing over the responsibility for the medical treatment, but none the contact with the health care providers. Conclusion: The parents’ plea for involvement in the transition planning, being aware of the shift in roles and gradually giving the responsibility to the adolescent. One important aspect was to inform about the new caregiver and future follow-up. Parents considered disease specific information given by the nurse or physician as optimal using different learning methods.
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| 30. |
- Bratt, Ewa-Lena, 1970
(författare)
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Att vänta barn med hjärtfel
- 2015
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Ingår i: Hjärtebarnet. - 1104-8654. ; 2015:4
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 31. |
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| 32. |
- Bratt, Ewa-Lena, 1970
(författare)
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Challenges in Parenting a Child with Heart Disease
- 2017
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Ingår i: 7th World Congress of Pediatric Cardiology and Cardiac Surgery (WCPCCS), July 16 - 21, 2017, Barcelona, Spain.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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| 36. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Continuing pregnancy following a prenatal diagnosis of a cardiac defect: What support do parents need?
- 2015
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Ingår i: Cardiology 2015. 18th Annual Update on Pediatroc and Congenital Cardiovascular Disease. Challenges and Dilemmas. Feb 11-15, 2015. Scottsdale, Arizona, US..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Purpose To explore pregnant women´s/couples’ experiences of counseling and need for support during continued pregnancy following a prenatal diagnosis of congenital heart disease (CHD). Conceptual framework Couples choosing continued pregnancy need support from the time of prenatal diagnosis until delivery. Method Design: Qualitative study, using in-depth interviews 4-8 weeks after prenatal diagnosis. Setting: A tertiary center fetal cardiology unit in Sweden Sample: 12 pregnant women and their partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect in their fetus. Data analysis: Qualitative content analysis. Major findings The analysis resulted in four themes: Making the decision: Short waiting time for specialist evaluation together with clear, honest and straightforward information was essential. The importance of knowledge: Parents called for written information together with a high-quality regulated website with information about CHD. The importance of support: Continued and easy access, throughout pregnancy, to health care professionals, including a pediatric specialist nurse, was important. Other parents with similar experiences and social media were also valuable sources of support. Future and daily life: Practical and economical issues during the hospital stay and the initial period after the hospital stay were common concerns. Conclusion The results provided valuable knowledge of how to improve information and support during pregnancy. Short waiting time from first suspicion to definitive diagnosis and continued support throughout pregnancy emphasizing the role of the pediatric cardiology specialist nurse was important. Web-based information was warranted Clinical implications These results provide important information for a future intervention study of a structured follow-up program in collaboration between antenatal- and pediatric cardiac caregivers.
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| 37. |
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| 38. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Do not forget the parents : Parents' concerns during transition to adult care for adolescents with congenital heart disease
- 2018
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Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862 .- 1365-2214. ; 44:2, s. 278-284
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care.METHOD: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.RESULTS: The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.CONCLUSION: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.
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| 39. |
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| 40. |
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| 41. |
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| 42. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease : A Randomized Controlled Trial
- 2023
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Ingår i: Journal of Adolescent Health. - : Elsevier. - 1054-139X .- 1879-1972.
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Adolescents with congenital heart disease transition from childhood to adulthood and transfer from pediatric-oriented to adult-oriented care. High-level empirical evidence on the effectiveness of transitional care is scarce. This study investigated the empowering effect (primary outcome) of a structured person-centered transition program for adolescents with congenital heart disease and studied its effectiveness on transition readiness, patient-reported health, quality of life, health behaviors, disease-related knowledge, and parental outcomes e.g., parental uncertainty, readiness for transition as perceived by the parents (secondary outcomes). Methods: The STEPSTONES-trial comprised a hybrid experimental design whereby a randomized controlled trial was embedded in a longitudinal observational study. The trial was conducted in seven centers in Sweden. Two centers were allocated to the randomized controlled trial-arm, randomizing participants to intervention or control group. The other five centers were intervention-naïve centers and served as contamination check control group. Outcomes were measured at the age of 16 years (baseline), 17 years, and 18.5 years. Results: The change in empowerment from 16 years to 18.5 years differed significantly between the intervention group and control group (mean difference = 3.44; 95% confidence interval = 0.27–6.65; p = .036) in favor of intervention group. For the secondary outcomes, significant differences in change over time were found in parental involvement (p = .008), disease-related knowledge (p = .0002), and satisfaction with physical appearance (p = .039). No differences in primary or secondary outcomes were detected between the control group and contamination check control group, indicating that there was no contamination in the control group. Discussion: The STEPSTONES transition program was effective in increasing patient empowerment, reducing parental involvement, improving satisfaction with physical appearance, and increasing disease-related knowledge. © 2023 Society for Adolescent Health and Medicine
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| 43. |
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| 44. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Effects of lifestyle changes and high-dose β-blocker therapy on exercise capacity in children, adolescents, and young adults with hypertrophic cardiomyopathy
- 2015
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Ingår i: Cardiology in the Young. - 1047-9511 .- 1467-1107. ; 25:3, s. 501-510
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The use of β-blocker therapy in asymptomatic patients with hypertrophic cardiomyopathy is controversial. This study evaluates the effect of lifestyle changes and high-dose β-blocker therapy on their exercise capacity. Methods and results: A total of 29 consecutive newly diagnosed asymptomatic patients with familial hypertrophic cardiomyopathy, median age 15 years (range 7–25), were recruited. In all, 16 patients with risk factors for sudden death were treated with propranolol if no contraindications, or equivalent doses of metoprolol; 13 with no risk factors were randomised to metoprolol or no active treatment. Thus, there were three treatment groups, non-selective β-blockade (n=10, propranolol 4.0–11.6 mg/kg/day), selective β-blockade (n=9, metoprolol 2.7–5.9 mg/kg/day), and randomised controls (n=10). All were given recommendations for lifestyle modifications, and reduced energetic exercise significantly (p=0.002). Before study entry, and after 1 year, all underwent bicycle exercise tests with a ramp protocol. There were no differences in exercise capacity between the groups at entry, or follow-up, when median exercise capacity in the groups were virtually identical (2.4, 2.3, and 2.3 watt/kg and 55, 55, and 55 watt/(height in metre)2 in control, selective, and non-selective groups, respectively. Maximum heart rate decreased in the selective (−29%, p=0.04) and non-selective (−24%, p=0.002) groups. No patient developed a pathological blood-pressure response to exercise because of β-blocker therapy. Boys were more frequently risk-factor positive than girls (75% versus 33%, p=0.048) and had higher physical activity scores than girls at study-entry (p=0.011). Conclusions: Neither selective nor non-selective β-blockade causes significant reductions in exercise capacity in patients with hypertrophic cardiomyopathy above that induced by lifestyle changes.
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| 45. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Forty Years of Quality-of-Life Research in Congenital Heart Disease: Temporal Trends in Conceptual and Methodological Rigor
- 2015
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273. ; 195, s. 1-6
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Forskningsöversikt (refereegranskat)abstract
- Background: The first study on quality of life (QoL) in patients with congenital heart disease was published 40 years ago. Since then, the number of QoL articles on these patients has grown exponentially. We conducted a systematic literature review of all empirical studies on QoL in patients with congenital heart disease published since 1974, with the aim of determining the range of conceptual and methodological rigor of studies and identifying temporal trends in these parameters. Methods: PubMed, Embase, and Cinahl were searched for empirical studies addressing QoL in children, adolescents, or adults with congenital heart disease, published between January 1, 1974, and December 31, 2014. We applied 10 review criteria that were previously developed by Gill and Feinstein in 1994 and further refined by Moons et al. in 2004. Overall, 234 articles were reviewed. Results: We found slight but non-significant temporal improvements in conceptual and methodological rigor and in use of assessment methods. This indicates a trend toward a more professional and exacting approach in QoL assessments. However, the majority of articles still had substantial conceptual and methodological deficits. Furthermore, we observed that citation of the publications of Gill and Feinstein and Moons et al. in published QoL research is associated with higher quality scores, suggesting that these articles have a positive impact on conceptual and methodological caliber. Conclusion: Despite 40 years of QoL research in this field, this review shows that major weaknesses in methodological rigor remain highly prevalent, which may make QoL studies inconclusive.
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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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New kid on the block? Community nurses' experiences of caring for sick children at home
- 2014
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Ingår i: American Academy of Nursing 2014 Transforming Health, Driving Policy Conference held from October 16 - 18 2014. Washington, USA.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Aim: To investigate the experiences of community nurses regarding caring for sick children at home, since this is a growing population of patients in community care, and most community nurses do not have an extensive experience in caring for sick children. Methods: Using a qualitative, descriptive design, in-depth interviews were conducted with twelve nurses working in community healthcare in Sweden. Qualitative content analysis was used. Results: “To feel confident in order to create confidence” was key in nurses’ experiences. Two main themes emerged: ”to build a trusting relationship with the family" and "to feel confident in the role as caregivers". Nurses aimed at creating a trusting nursing relationship and working closely with parents. The feeling of confidence in their role as caregivers depended of the support that nurses received and the knowledge that they have. Six subthemes emerged: “the importance of adequate knowledge”; “to handle the emotional reactions”; “need for support and guidance”; “collaborating with family”; “thoroughly planned visits”; and “communicating with the whole family”. Conclusion: Many community nurses felt insecure to care for children at home. However, they experienced this as manageable when receiving peer support and when there is a distinct collaboration with the pediatric clinic/hospital. A need for guidance and education was expressed. Policy implications: The ongoing shift from hospital to home urges pediatric clinics/hospitals and community healthcare to develop formal policies of transmural collaboration to train and support home nurses for delivering adequate care to sick children and their families at home, and safeguard good outcomes.
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