Nursing lived experience: Critical care ethics and intellectual developmental disabilities

Abstract

Background

Patients with intellectual developmental disabilities (IDDs), as members of a vulnerable population, require specialized care that many ICU nurses feel inadequately prepared to provide. The complexity of caring for IDD patients often leads to feelings of moral distress, self-doubt, and a struggle to maintain resilience among ICU nurses.

Research question/aim/objectives

This study aims to explore ICU nurses’ lived experiences caring for patients with IDD.

Research design

A descriptive, phenomenological qualitative approach was used along with inductive analysis to explore the meanings ICU nurses attribute to experiences caring for IDD patients.

Participants and research context

ICU nurses (N = 20) who met inclusion criteria were purposively sampled.

Ethical considerations

The study received ethical approval from an institutional review board. Informed consent was obtained from all participants.

Findings/results

Three main themes emerged from the analysis. First, in main theme 1, If Only I Had Known More, nurses reported insufficient training specific to IDD care, expressing shame about their knowledge gaps. Second, in main theme 2, They Deserve Better, nurses highlighted the lack of resources and institutional support, complicating efforts to deliver appropriate care. Finally, in main theme 3, It Weighs on My Soul, nurses reflected on the emotional toll of caring for IDD patients, discussing subthemes such as self-doubt, emotional detachment, coping efforts, witnessing isolation, and moral distress.

Discussion

These findings highlight personal, educational, and systemic gaps shaping ICU nurses’ experiences with IDD patients. Limited training and insufficient resources intensified moral distress. There is an urgent need for IDD-oriented education, institutional support, and policies that promote compassionate, tailored care.

Conclusions

Findings suggest there is a strong alignment with the ethics of care framework. Such a connection emphasizes the need for systemic changes to empower ICU nurses to deliver compassionate, individualized care to IDD patients and enhance professional resilience and patient outcomes.