| 1. |
- Brorsson, Anna Lena, 1964, et al.
(författare)
-
Randomised controlled trial of a person-centred transition programme for adolescents with type 1 diabetes (STEPSTONES-DIAB): a study protocol
- 2020
-
Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:4
-
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.
|
|
| 2. |
|
|
| 3. |
- Vallmark, Mikaela, 1988, et al.
(författare)
-
Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.
- 2023
-
Ingår i: Journal of patient-reported outcomes. - : Springer. - 2509-8020. ; 7:1
-
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.
|
|
| 4. |
- Acuña Mora, Mariela, et al.
(författare)
-
Definitions, instruments and correlates of patient empowerment : A descriptive review
- 2021
-
Ingår i: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134.
-
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.
|
|
| 5. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
-
Empowering young persons during the transition to adulthood
- 2020
-
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
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)
|
|
| 6. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
-
Empowering young persons with congenital heart disease: Using intervention mapping to develop a transition program - the STEPSTONES project.
- 2020
-
Ingår i: Journal of pediatric nursing. - : Elsevier BV. - 1532-8449 .- 0882-5963. ; 50
-
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.
|
|
| 7. |
|
|
| 8. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
-
The longitudinal association between patient empowerment and patient-reported outcomes: What is the direction of effect?
- 2022
-
Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 17:11
-
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.
|
|
| 9. |
|
|
| 10. |
|
|
