Do not forget the parents-Parents' concerns during transition to adult care for adolescents with congenital heart disease.

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. 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. 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. 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.

Bratt EL ，Burström Å ，Hanseus K ，Rydberg A ，Berghammer M ，On behalf on the STEPSTONES-CHD consortium ... -  《-》

"They're kept in a bubble": Healthcare professionals' views on transitioning young adults with congenital heart disease from paediatric to adult care.

Due to medical advances, growing numbers of adolescents with congenital heart disease (CHD) survive into adulthood and transferring from paediatric to adult healthcare. This transfer is significant step in a young person's life, and this study examines the views of Irish healthcare professionals' on how best to manage this transition. Purposeful sampling was used to invite participation by healthcare professionals (HCPs) from a variety of disciplines whose caseloads include adolescents and young adults with CHD. Fourteen professionals participated in semistructured interviews regarding their experiences of the transition process and their recommendations. Data were collected during Spring 2016 and analysed using thematic analysis. Results indicated that the current approach to transition and transfer could be improved. Professionals identified barriers hindering the transition process such as cultural and attitudinal differences between HCPs dealing with child and adult patients, inadequate preparation and education of patients about their condition, parental reluctance to transfer, and concern about parents' role in on-going treatment. Measures such as better support and education for both the patients and their parents were recommended, in order to facilitate a smoother transition process for all parties involved. Additionally, HCPs identified the need for better collaboration and communication, both between paediatric and adult healthcare professionals and between hospitals, to ensure greater continuity of care for patients. Action is required in order to improve the current transition process. Measures need to be taken to address the barriers that currently prevent a smooth transition process for young adult CHD patients. Professionals recommended the implementation of a structured transition clinic to deal with the wide variety of needs of transitioning adolescent patients and their families. Recommendations for future research are also made.

McLoughlin A ，Matthews C ，Hickey TM 《-》

[Adolescents' with congenital heart disease and their parents' experiences of a nurse-led transition program. An interpretive phenomenological study].

Thomet C ，Lindenberg C ，Schwerzmann M ，Spichiger E ... -  《Pflege》

Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care.

Burström Å ，Bratt EL ，Frenckner B ，Nisell M ，Hanséus K ，Rydberg A ，Öjmyr-Joelsson M ... -  《-》

Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals' experiences.

To examine the needs and perspectives regarding healthcare transition for adolescents and young adults (AYAs) with the following long-term conditions: diabetes, cystic fibrosis and congenital heart disease. Transition of AYAs within healthcare services has become increasingly important as more children are surviving into adulthood with long-term conditions. Yet, limited empirical evidence exists regarding transition experiences. Qualitative study fulfilling the completed consolidated criteria for reporting qualitative studies criteria (see Appendix S1). Semi-structured interviews with AYAs aged 14-25 years (n = 47), parents (n = 37) and health professionals (n = 32), which was part of a larger mixed-methods study. Sample was recruited from two children's hospitals and four general hospitals in Ireland. Transfer occurred between the ages of 16-early 20s years depending on the service. None of the hospitals had a transition policy, and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self-management. The transition process was smooth for some young adults, while others experienced a very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses reported following-up adolescents who struggled with treatment adherence and clinic attendance, whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young adults' prerogative. The amount of preparation and the degree to which the shift in responsibility had occurred prior to transition appeared to influence successful transition for AYAs and their parents. Nurses in collaboration with the multidisciplinary team can help AYAs develop their self-management skills and guide parents on how to relinquish responsibility gradually prior to transition.

Coyne I ，Sheehan A ，Heery E ，While AE ... -  《-》