Does the healthcare system support family-centred service?: linking structural issues in healthcare service delivery to parents’ relational experiences of care

PURPOSE: To examine parents' experiences with healthcare services for their children with disabilities. METHOD: In a cross-sectional observational study, 131 parents provided written comments about their healthcare experiences in response to an open-ended question included in the newly updated Measure of Processes of Care 2.0 questionnaire. These comments were analyzed thematically using an inductive qualitative approach. RESULTS: Four themes pertaining to relational aspects of care (i.e., experiences with service providers) and six themes pertaining to structural aspects (i.e., how healthcare services are organized and delivered) were generated. Three meta-themes were generated to capture associations between these themes. First, when there are high turnover and inexperienced providers, parents can have difficulty building rapport and trust. Second, when it is hard to access services and there are long wait times, parents can feel stressed and burdened. Third, when organizations are not transparent about services and internal communication is poor, parents can feel frustrated and unable to make good decisions. CONCLUSIONS: This study empirically links system-level issues to parents' experience of family-centred service. Implications for healthcare services and organizations include (i) training providers to have relevant knowledge and skills, (ii) reducing excessive waiting times for services, and (iii) improving the transparency of communication.