Participatory Action Research in the Field of Neonatal Intensive Care: Developing An Intervention to Meet the Fathers’ Needs. A Case Study

Abstract

BackgroundIn neonatal intensive care units (NICUs) health care professionals typically give most of their attention to the infants and the mothers while many fathers feel uncertain and have an unmet need for support and guidance. This paper describes and discusses participatory action research (PAR) as a method to improve NICUs’ service for fathers. Our goal is to develop a father-friendly NICU where both the needs of fathers and mothers are met using an approach based on PAR that involves fathers, mothers, interdisciplinary healthcare professionals, and managers.Design and methodsThis PAR process was carried out from August 2011 to July 2013 and included participant observations, semi-structured interviews, multi sequential interviews, workshops, focus groups, group discussion, and a seminar. The theoretical framework of validity described by Herr and Anderson’s three criteria; process-, democratic-, and catalytic validity were used to discuss this PAR.ResultsTwelve fathers, 11 mothers, 48 health professionals and managers participated in the PAR process. The collaboration ensured the engagement for viable and constructive local changes to be used in designing the concept of the father friendly NICU.ConclusionsThis paper contributed new knowledge of how PAR can be used to ensure that participants engaged in the field are involved in the entire process; consequently, this will ensure that the changes are feasible and sustainable.Significance for public healthThis case study contributed insight into the role and importance of participatory action research (PAR) in clinical practice. By engaging the stakeholders in the process, the culture of the neonatal intensive care unit became open to reflection and action. It was very important to understand the purpose and context of the activities and to use them accordingly to the participants. By using the right activities in the right context, we gained an opportunity to promote participants’ creativity. This required the researchers to be flexible and to be aware of PAR as a time-consuming approach.

How might patient involvement in healthcare quality improvement efforts work—A realist literature review

“…Enabling patients, and/or their next of kin, to share their individual goals and concerns with health‐care professionals in a direct, real‐time way within the microsystem supports their involvement. All studies included in the review described such person‐specific and individualized interventions, where patients were actively involved and put in the lead—enabled to prioritize their needs and participate in an informed way through, for example, self‐management training, outpatient health‐care visits, patient safety issues or co‐design QI efforts …”

“…In an outpatient rheumatology service, “the process [allows] patients to directly contribute to shaping the services they receive long‐term and realizing their opinions were of value to clinical staff and hospital management.” QI priorities within a microsystem can be identified when patients and health‐care professionals exchange stories and experiences in face‐to‐face meetings, co‐design discussions and jointly prioritize improvement efforts. Such an approach indicates the importance of prioritizing and conducting QI, and, in turn, this reasoning may promote QI effort sustainability …”

“…Active patient involvement in health‐care QI requires continuous, organizational preparation and facilitation . Clarification of the rationale to all actors, the QI effort's purpose, as well as participant roles and responsibilities, must be outlined from the start .…”

“…In a successful example with cancer patients, the carefully tailored intervention led to a joint awareness of the connection between patients’ health‐care experiences and microsystem QI efforts, which furthermore led to shared responsibility and empowerment within the microsystem. In multiple studies, such shared responsibility and empowerment reasoning promoted the QI intervention development Theory 1: Tailoring patient involvement (resource and reasoning) to each QI effort (context) may lead to interaction and partnership within the microsystem (outcome). …”

“…Interaction and partnership between patients and health‐care professionals is an important resource mechanism for patient involvement in QI projects. For example, well‐facilitated face‐to‐face meetings, encouraging participants to listen to each other and to reflect, promote development of these relationships and co‐operation methods …”