Parents' views, experiences and expectations when the health care of adolescents with congenital heart disease is transferred from pediatric to adult care. results from a meta-synthesis

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background/Introduction International guidelines and research endorse collaboration with parents. However, parents of young people with congenital heart disease (CHD) face several challenges when the healthcare of their child at the age of 16 or 18 years is transferred from pediatric to adult care. Parents are expected to "step aside" but they have an unclear view of what to expect and are uncertain about their role in this process. Although there has been attention to the needs of parents during young peoples’ transfer in current guidelines, it is still vaguely how health care professionals can involve parents in this process. Purpose A qualitative systematic meta-synthesis was undertaken in order to inform health care professionals on how they can involve the parents in the transfer process. This review covers parents’ experiences, expectations and needs when the health care of young people is transferred from pediatric to adult care. Methods This review was conducted in accordance with the JBI’s methodology for systematic reviews of qualitative evidence. A science librarian was involved in searches at following databases: MEDLINE, PubMed, CINAHL (EBSCO), Embase, PsychInfo, SweMed+, and Scopus. Qualitative studies in English, German, Swedish, Norwegian and Danish were considered for this review. The methodological quality of the included studies was assessed independently by three reviewers using a standardized data extraction tool. Findings were assembled according to their quality and categorized based on their similarity in meaning. The categories were subjected to meta-synthesis in order to produce a single comprehensive set of synthesized findings. Results Six qualitative studies were included covering experiences from parents of young people with CHD. 40 findings were extracted and aggregated into seven categories and from these three synthesis were derived: i) Information is a prerequisite for being able to support young people ii) The transition process should be prepared, individualized, and based on the young people’s maturity iii) The role shift causes ambivalent feelings requiring a scaffolded transition process. Conclusion Information about organization and future follow up in adult care is a prerequisite for parents to be able to support their childs’ transfer. The transfer to adult care is a logic step, but parents fear to be excluded from future clinical discussions. Young peoples’ transfer to adult care should be decided on the basis of their maturity rather than a predefined age. Parents worry that the healthcare professionals are unaware that the young people are beginners. It causes ambivalent feelings when parents experience a role shift from being a full caregiver to become a supportive person. Parents grief because they are not needed anymore, however, it is a relief to hand over responsibility for the disease to the young people. A scaffolded transition process can help parents to adapt to their new role.