Quality Improvement in a Maternity Ward and Neonatal Intensive Care Unit : What are staff and patients´ experiences of Experience-based Co-design? Part 1: A qualitative study

Background: Recent focus on quality and patient safety has underlined the need to involve patients in improving healthcare. “Experience-based Co-design” (EBCD) is an approach to capture and understand patient and staff (i. e. users) experiences, identifying so called “touch points” and then working together equally in improvement efforts. Purpose: This article elucidates patient (defined as the mother-newborn couple with next of kin) and staff experiences following improvement work carried out according to EBCD in a maternity ward and neonatal intensive care unit (NICU) in a small, acute hospital in Sweden. Method: An experience questionnaire, derived from the EBCD approach tool set, was used for continuously evaluating each event of the EBCD improvement project. Furthermore, a focus group interview with staff and in-depth interviews with mother-father couples were held in order to collect and understand the experiences of working together according to EBCD. The analysis and interpretation of the interview data was carried through using qualitative, problem-driven content analysis. Themes, categories and sub-categories presented in this study constitute the manifest and latent content of the participants’ experiences of Experience-based Co-design. Results: The analysis of the experience questionnaires, prior to the interviews, revealed mostly positive experiences of the participation. Both staff and patient participants stated generally happy, involved, safe, good and comfortable experiences following each event of the improvement project so far. Two themes emerged during the analysis of the interviews. For staff participants the improvement project was a matter of learning within the microsystem through managing practical issues, moving beyond assumptions of improvement work and gaining a new way of thinking. For patients, taking part of the improvement project was expressed as the experience of involvement in healthcare through their participation and through a sense of improving for the future. Discussion: This study confirms that, despite practical obstacles for participants, the EBCD approach to improvement work provided an opportunity for maternity ward /NICU care being explored respectfully at the experience level, by assuring the sincere sharing of useful information within the microsystem continuously, and by encouraging and supporting the equal involvement of both staff and patients. Staff and patients wanted and were able to contribute to the EBCD process of gathering information about their experiences, analyzing and responding to collected data, and engaging themselves in improving the same. Furthermore, the EBCD approach provided staff and patients the opportunity of learning within the microsystem. Nevertheless, the responsibility of the improvement work remained the responsibility of the healthcare professionals. Keywords: Quality Improvement, Maternity Care, Neonatal Intensive Care, Experience-based Co-desig