Taking a step back: Parents' experiences of the decision-making process for elective orthognathic surgery in cleft lip and palate (IPA)

Objective

This study explored parents' experiences of the transition of responsibility to their child for healthcare decisions relating to their cleft lip and/or palate (CL/P).

Methods

Online semi-structured interviews were conducted with 11 participants (six females and five males, aged 41 to 60 years). They were parents of young people who had decided whether to undergo orthognathic surgery. The data were transcribed and analysed using interpretative phenomenological analysis (IPA).

Results

A responsibility shift from participants to their children was identified in 2 main themes ‘A natural process (or not)’ and ‘It has to be their decision’.

Conclusion

The process of shifting responsibility for decision-making to the child comprised a spectrum of experiences from a relief to a shock and upset. Participants went through sometimes difficult negotiating of their ongoing involvement while supporting their child.

Innovation

The importance of addressing psychological aspects of the family system as well as the young person is highlighted here. Addressing the familial complexities of the transition may contribute to the success of the whole process. Clinicians need careful consideration of the potential emotional impact on parents which is not always shared.