| 1. |
- 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.
|
|
| 2. |
- 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)
|
|
| 3. |
- 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.
|
|
| 4. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
-
Gothenburg Empowerment Scale (GES): psychometric properties and measurement invariance in adults with congenital heart disease from Belgium, Norway and South Korea
- 2022
-
Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 20:1
-
Tidskriftsartikel (refereegranskat)abstract
- Background Patient empowerment is associated with improvements in different patient-reported and clinical outcomes. However, despite being widely researched, high quality and theoretically substantiated disease-generic measures of patient empowerment are lacking. The few good instruments that are available have not reported important psychometric properties, including measurement invariance. The aim of this study was to assess the psychometric properties of the 15-item Gothenburg Empowerment Scale (GES), with a particular focus on measurement invariance of the GES across individuals from three countries. Methods Adults with congenital heart disease from Belgium, Norway and South Korea completed the GES and other patient-reported outcomes as part of an international, cross-sectional, descriptive study called APPROACH-IS II. The scale's content (missing data) and factorial validity (confirmatory factor analyses), measurement invariance (multi-group confirmatory factor analyses), responsiveness (floor and ceiling effects) and reliability (internal consistency) were assessed. Results Content validity, responsiveness and reliability were confirmed. Nonetheless, metric but not scalar measurement invariance was supported when including the three countries, possibly because the scale performed differently in the sample from South Korea. A second set of analyses supported partial scalar invariance for a sample that was limited to Norway and Belgium. Conclusion Our study offers preliminary evidence that GES is a valid and reliable measure of patient empowerment in adults with congenital heart disease. However, cross-country comparisons must be made with caution, given the scale did not perform equivalently across the three countries.
|
|
| 5. |
|
|
| 6. |
- 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.
|
|
| 7. |
- Arnaert, Stijn, et al.
(författare)
-
Heart failure related to adult congenital heart disease: prevalence, outcome and risk factors.
- 2021
-
Ingår i: ESC heart failure. - : Wiley. - 2055-5822. ; 8:4, s. 2940-2950
-
Tidskriftsartikel (refereegranskat)abstract
- Information on the prevalence, outcome and factors associated with heart failure in patients with adult congenital heart disease (CHD) (ACHD-HF) is lacking. We aimed at assessing the prevalence and outcome of ACHD-HF, the variables associated with ACHD-HF, and the differences between major anatomical/pathophysiological ACHD subgroups.We included 3905 patients (age 35.4±13.2years) under active follow-up in our institution (last visit >2010). Outcome of ACHD-HF cases was compared with sex- and age-matched cases. Univariable and multivariable binary logistic regression with ACHD-HF diagnosis as a dependent variable was performed. Overall prevalence of ACHD-HF was 6.4% (mean age 49.5±16.7years), but was higher in patients with cyanotic CHD (41%), Fontan circulation (30%), and a systemic right ventricle (25%). All-cause mortality was higher in ACHD-HF cases when compared with controls (mortality rate ratio 4.67 (2.36-9.27); P=0.0001). In multivariable logistic regression analysis, age at latest follow-up [per 10years; odds ratio (OR) 1.52; 95% confidence interval (CI) 1.31-1.77], infective endocarditis (OR 4.11; 95%CI 1.80-9.38), history of atrial arrhythmia (OR 3.52; 95%CI 2.17-5.74), pacemaker implantation (OR 2.66; 95% CI 1.50-4.72), end-organ dysfunction (OR 2.41; 95% CI 1.03-5.63), New York Heart Association class (OR 9.28; 95% CI 6.04-14.25), heart rate (per 10bpm; OR 1.27; 95% CI 1.08-1.50), ventricular dysfunction (OR 3.62; 95% CI 2.54-5.17), and pulmonary hypertension severity (OR 1.66; 95% CI 1.21-2.30) were independently related to the presence of ACHD-HF. Some variables (age, atrial arrhythmia, pacemaker, New York Heart Association, and ventricular dysfunction) were related to ACHD-HF in all anatomical/physiological subgroups, whereas others were not.ACHD-HF is prevalent especially in complex CHD and is associated with poor prognosis. Our data provide insight in the factors related to ACHD-HF including differences between specific anatomical and physiological subgroups.
|
|
| 8. |
|
|
| 9. |
|
|
| 10. |
|
|
