Patient empowerment and its correlates in young persons with congenital heart disease

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.

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

“…Such interventions should focus on empowering patients and enhancing their feelings of comprehensibility, manageability and meaningfulness. They can do this by providing information, making patients aware of available resources, and supporting patients to play an active role in their care .…”

“…Furthermore, most studies only evaluated the role of demographic and medical factors in predicting QoL. However, there has been a set of relatively new factors that have been reported to have predictive value for QoL in CHD, such as a sense of coherence , general self‐efficacy , empowerment , how the patient perceives their illness , personality , parental support and loneliness . These novel predictors of a psychological or contextual nature should be included in future studies, in order to capture the entire spectrum of variations in QoL.…”

Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital Heart Disease (WG ACHD), the Association for European Paediatric and Congenital Cardiology (AEPC), the Pan-African Society of Cardiology (PASCAR), the Asia-Pacific Pediatric Cardiac Society (APPCS), the Inter-American Society of Cardiology (IASC), the Cardiac So

“… 48 In CHD, empowerment is associated with transition readiness and improved communication with healthcare providers. 49 Therefore, empowerment can be a target for intervention in transition, and it can be seen as an intermediate outcome, which indirectly improves the ultimate transition outcomes ( Figure 2 ).…”

Soyo Practice: Revitalization of Local Wisdom Values in The Community Empowerment of The Modern Management Era

“…Empowerment was interpreted by two schools of thought, where the first was based on community agency and the ability to control their lives, and the second was founded on political and economic ideas in making institutions more responsive to local societies [10]. The dimensions that form this process consist of knowledge and understanding, personal control, identity, joint decision making, as well as the involvement of others [2]. An example of how this concept is implemented involves the transfer of top-down power from a more to a less empowered person or people [4].…”