| 1. |
|
|
| 2. |
- Acuña Mora, Mariela, 1990, et al.
(författare)
-
Patient empowerment and its correlates in young persons with congenital heart disease
- 2019
-
Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 18:5, s. 389-398
-
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.
|
|
| 3. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
-
Adolescents with congenital heart disease - Parent’s perceptions and expectations about transition and transfer to adult care
- 2016
-
Ingår i: 46th Nordic Meeting in Paediatric Cardiology. 21-23 September 2016. Båstad, Sweden.
-
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.
|
|
| 4. |
- Burström, Åsa, et al.
(författare)
-
Adolescents with congenital heart disease : their opinions about the preparation for transfer to adult care
- 2017
-
Ingår i: European Journal of Pediatrics. - : Springer. - 0340-6199 .- 1432-1076. ; 176:7, s. 881-889
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease. Conclusion: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process.
|
|
| 5. |
- Burström, Åsa, et al.
(författare)
-
Adolescents With Congenital Heart Disease and Their Parents: Needs Before Transfer to Adult Care
- 2016
-
Ingår i: Journal of Cardiovascular Nursing, Vol. 31, No. 5, pp 399-404. - 0889-4655 .- 1550-5049.
-
Konferensbidrag (refereegranskat)abstract
- BACKGROUND: Patients with congenital heart disease (CHD) are in need of lifelong healthcare. For adolescents with CHD, this transfer to adult-care clinic can be difficult. OBJECTIVE: The aim was to identify and describe the needs of adolescents with CHD and their parents during the transition before transfer to adult cardiologic healthcare. METHODS: This study has an exploratory design with a qualitative approach, where 13 adolescents with CHD and their parents (n = 12) were individually interviewed. The interviews were analyzed with content analysis. RESULTS: The analysis of the adolescents' interviews resulted in 3 categories: change of relationships, knowledge and information, and daily living. The theme that emerged depicting the meaning of the categories found was Safety and control, indicating needs of continuity, knowledge, and taking responsibility. Analysis of the parents' answers gave 2 categories: change of relationship and daily living. The theme that emerged was safety and trust, indicating needs of continuity and shifting responsibility. CONCLUSIONS: The transition must be carefully planned to ensure that adolescents can master new skills to manage the transfer to adult cardiologic healthcare. A structured program may facilitate and fulfill the needs of the adolescents and their parents, taking into consideration the aspects of trust, safety, and control. However, the content and performance of such a program must also be examined. We plan to undertake an extensive research project in the area, and this study will be a baseline for further research.
|
|
| 6. |
|
|
| 7. |
|
|
| 8. |
- Burström, Åsa, et al.
(författare)
-
Parental uncertainty about transferring their adolescent with congenital heart disease to adult care
- 2019
-
Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 75:2, s. 380-387
-
Tidskriftsartikel (refereegranskat)abstract
- Aims: To study parent's levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. Background: Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well-prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility. Design: A cross-sectional study. Methods: Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0-100). Data were collected between January - August 2016. Potential correlates were assessed using the readiness for transition questionnaire and sociodemographic data. Results: The mean parental uncertainty score was 42.5. Twenty-four percent of the parents had a very low level of uncertainty (score 0-10) and 7% had a very high level (score 91-100). Overall, 26% of the mothers and 36% of the fathers indicated that they had not started thinking of the transfer yet. The level of uncertainty was negatively associated with the level of perceived overall readiness. Adolescents' age, sex, CHD complexity, and parental age were not related to uncertainty. Conclusion: A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care.
|
|
| 9. |
|
|
| 10. |
|
|
