Parents' perspectives on centralized cleft services for children: the development of a DCE questionnaire

Objective: Incorporating user's perspectives in healthcare delivery is important. Simple questionnaires may not capture these as well as a discrete choice experiment (DCE) which enables the exploration of users' trade-offs between different service attributes. Qualitative methods are increasingly used to improve a DCE's face validity, but few studies adequately describe them. This paper describes the qualitative investigations in the development of a DCE questionnaire to elicit parents' perspectives on centralized services for children with cleft lip and palate.

Methods: Semi-structured telephone interviews were conducted with 16 parents from across the UK, except Wales. Data analysis was carried out by the constant comparative method.

Results: Five attributes and their levels were inductively identified: usefulness and amount of information (four levels); staff attitude at cleft centres (two levels); continuity of care (two levels); personal costs of attending appointments (four levels); and cleft centres facilities (two levels). An unexpected finding was that parents' sense of responsibility towards their child made a 'willingness-to-travel' attribute unacceptable to them, but they were receptive to a 'willingness-to-pay' attribute.

Conclusion: Using qualitative methods with service users in attribute development for a DCE helps to uncover issues that may not be apparent to researchers or health service staff.