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The experiences of pediatric nurses caring for children in a persistent vegetative state
Barbara A Montagnino1, Angela M Ethier
1Progressive Care Unit, Texas Children's Hospital, Houston, TX, USA. bamontag@texaschildrenshospital.org
Insights
Caring for children in a persistent vegetative state (PVS) is challenging for pediatric nurses, involving emotional stress and ethical dilemmas. Nurses adapt their patient relationships to cope with the complex demands of PVS care.
Area of Science:
- Pediatric Nursing
- Neurology
- Bioethics
Background:
- Advances in medical technology increase the survival of children in a persistent vegetative state (PVS).
- Caring for neurologically devastated children presents unique, previously undescribed challenges.
- Understanding the pediatric nurse's experience is crucial for improving care.
Purpose of the Study:
- To explore and understand the experiences of pediatric nurses caring for children in a persistent vegetative state.
- To identify the challenges and coping mechanisms employed by nurses in this specialized care setting.
Main Methods:
- Qualitative phenomenologic study utilizing in-depth interviews.
- Conducted in a monitored step-down care unit of an academic children's hospital.
- Eight registered nurses participated in the study.
Main Results:
- Nurses described caring for children in PVS as a dynamic process with both negative and positive aspects.
- Six emergent themes: focusing on parents, delivering offensive physical care, enduring conflicting emotions, moral distress, finding relief, and gaining perspective.
- The experience was emotionally stressful and ethically challenging.
Conclusions:
- Caring for children in a persistent vegetative state is a difficult and demanding role for pediatric nurses.
- Nurses modified the traditional pediatric nurse-patient relationship to cope with care demands.
- Further support and understanding are needed for nurses providing PVS care.
Objective:
The number of children surviving in a persistent vegetative state is increasing with advances in medical technology. Caring for a neurologically devastated child presents unique challenges not previously described. Our objective was to gain an understanding of the pediatric nurse's experience of caring for children in a persistent vegetative state.
Design:
Qualitative phenomenologic study using in-depth interviews.
Setting:
Monitored step-down care unit of an academic children's hospital.
Participants:
Eight registered nurses employed at a step-down care unit.
Interventions:
None.
Measurements And Main Results:
Nurses in this study described caring for children in a persistent vegetative state as a dynamic process with negative and positive aspects. Six themes emerged from this study: focusing on the parents, delivering sensorially offensive physical care, enduring conflicting emotions, suffering moral distress, finding relief and comfort, and gaining perspective.
Conclusions:
Our qualitative study suggests that caring for a child in a persistent vegetative state is difficult. Pediatric nurses described the experience as emotionally stressful and ethically challenging. To cope with the demands of caring for the child in a persistent vegetative state, the nurses in this study modified the traditional concept of the pediatric nurse-patient relationship.
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