Organizational Factors Affecting Parents’ Participation in Decision-Making for Neonates With Life-threatening Conditions: A Grounded Theory Study

Background and Aims:Parental participation in decision-making for neonates with life-threatening conditions is morally and ethically approved. The health care team in the neonatal intensive care units is not prepared to involve parents in these decisions. Identifying factors affecting parental participation in decision-making can lead to removing the barriers and improving parents’ participation. The present study aimed to identify organizational factors affecting parents’ participation in decision-making for neonates with life-threatening conditions. Methods & Materials: This study is part of a comprehensive project based on Corbin and Straus’s approach to grounded theory (GT) methodology (Corbin & Strauss, 2015) explored the process of parental participation in DM for neonates with LTC. Participants included 23 people (10 parents, 10 healthcare providers, 1 official in the Neonatal Health Office of the Ministry of Health and Medical Education, 1 professor of Jurisprudence and Principles of Islamic Law, and 1 insurance agent).  The study field included level III neonatal intensive care units of 4 teaching hospitals. Data were collected using in-depth, semi-structured interviews and observation and simultaneously were analyzed through constant comparison using the approach of Corbin and Strauss, 2015. The core category and the related categories reflecting contextual and structural factors, parents’ strategies, and the outcome of the adopted strategies were identified. The contextual and structural category reflected a wide range of factors affecting parents’ participation in DM. Since it was not possible to publish all findings in one article the current study focused on the organizational factors affecting parents’ participation in DM. Results: Organizational factors affecting the process of parental participation in decision-making consisted of 5 main categories including 1) power imbalances, 2) ethics committees’ deficiencies, 3) hospital regulations deficiencies, 4) resource constrains, and 5) ongoing hospitalization the only choice. Conclusion: Organizational factors play an important role in parental participation in decision-making. Providing parents of neonates with life-threatening conditions with accommodation and developing instructions to encourage the presence of parents in the hospital, developing rules for selecting NICU nurses is necessary. Employing an interdisciplinary team of psychologists, social workers, and trained individuals to provide parents with spiritual care is recommended. Appointing hospital ethics committees to investigate cases of critically ill infants, and employing experienced and knowledgeable ethicists about the end-of-life issues in these committees are also recommended.