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Keywords:

  • parent decision making;
  • trust;
  • provider communication;
  • theory;
  • NICU;
  • ethics

ABSTRACT

Objective

To synthesize the existing qualitative literature about parent ethical decision making in the neonatal intensive care unit (NICU) and to investigate the potential impact of culture on parents’ decision making experiences.

Data Sources

PubMed, CINAHL plus, and PsychInfo using the search terms parental decision making, culture, race, decision making, and parental decisions.

Study Selection

Qualitative research studies investigating decision making for infants in the NICU from the parents’ perspective were included. Studies involving older pediatric populations were excluded.

Data Extraction

Ten primary qualitative research articles were included. The primary author read all manuscripts and tabulated themes related to parents’ ethical decision making.

Data Synthesis

Study findings were synthesized using meta-ethnography involving translating concepts of separate studies into one another, exploring contradictions, and organizing these concepts into new theories. Key themes included parent involvement in decision making, parental role, necessity of good information, need for communication, desire for hope and compassion conveyed by providers, decision making satisfaction, and trust in caregiving team. A preliminary theoretical framework of ethical parent decision making was modeled based on the proposed relationships between the themes.

Conclusions

Parent preferences for their involvement in decision making, their perceptions of communication with providers, and their relationships with providers are all important factors in the experience of making decisions for their infants. Needs of parents were the same regardless the ethnic or racial diversity of study participants.