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- 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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- 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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- 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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