Extending the concept of moral distress to parents of infants hospitalized in the NICU: A Greek qualitative study

Abstract

Abstract Background Having an infant hospitalized in the neonatal intensive care unit (NICU) involves ethically challenging situations. A limited number of studies extend the concept of moral distress to parents of infants hospitalized in the NICU. It remains to be further endorsed. Methods The present prospective qualitative study was conducted from February 2023 to May 2023. Data were collected through semi-structured in-depth interviews conducted in person with fifteen parents of infants hospitalized in the NICU at the time of interviews. A purposive sampling was used. Data were classified and analyzed using the thematic analysis approach. For the purposes of this study, parental moral distress was conceptualized as the powerlessness of parents to deal with an ethically troubling situation. Results Three themes and six subthemes emerged from data analysis in this study. First, parental moral distress has an other-regarding intrapersonal dimension, related to parents feeling overwhelmed by caregiving demands. Second, parental moral distress has a self-regarding intrapersonal dimension, related to parents’ mental anguish mainly driven by their inner world. The following three subthemes emerged under this theme. Objectively unjustified parental feelings of guilt or failure, moral schism experienced by parents because of a tough moral dilemma which although it was not truly irresolvable parents perceived it as such, and fear of self-harm emerged as situations that are similar to those experienced by healthcare professionals and which prevent them from acting on what they believe to be the right. The same holds for situations threatening the parenting role. Third, parental moral distress has an interpersonal dimension. It refers to the relationship between parents and healthcare professionals, including the parents’ involvement in decisions about their infants’ care. The following three subthemes emerged under this theme. Parents expressed mild and minor concerns about the physicians’ choices, which ultimately disappeared. Furthermore, well-informed parents developed better relationships with physicians. Moreover, medical paternalism and institutional factors emerged as sources of parental moral distress. Conclusions The findings of this study advocate for an integrated concept of parental moral distress which overlaps with the previously offered integrated definition offered by Mooney-Doyle and Ulrich. While the findings of this study are partly consistent with prior literature, this study identified some nuances that are of clinical importance and might contribute to further exploring the phenomenon of parental moral distress.