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

• Published in: Child : care, health & development health & development, 2018-03, Vol.44 (2), p.278-284
• Main Authors: Bratt, E. L., Burström, Å., Hanseus, K., Rydberg, A., Berghammer, M.
• Format: Article
• Language: English
• Subjects: Activities of daily living; adolescence; Adolescent; Adolescents; Adults; Attitude to Health; Cardiology; Cardiovascular disease; Cardiovascular diseases; chronic (health) condition; Congenital diseases; Congenital heart disease; Consumer Health Informatics - standards; Content analysis; Female; Heart Defects, Congenital - therapy; Humans; Interviews; Interviews as Topic; Male; Medical personnel; Medicin och hälsovetenskap; Middle Aged; Nursing; Nursing science; Omvårdnad; Parent-Child Relations; parenting; parents; Parents & parenting; Parents - psychology; Patient Education as Topic; Pediatrics; Professional-Family Relations; Qualitative Research; Relatives; Semi Structured Interviews; Sweden; Teams; Teenagers; transition; Transition to Adult Care - organization & administration; Vårdvetenskap
• ISSN: 0305-1862; 1365-2214; 1365-2214
• DOI: 10.1111/cch.12529

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.