Understanding the experience of managing children on mechanical ventilation in pediatric intensive care unit: parents' and nurses' perspectives [EMBARGOED]

Abstract

The Paediatric Intensive Care Unit (PICU) aims to care for critically ill children. The unit is equipped with multiple sophisticated devices that enable Healthcare Providers (HCPs) to save children's lives. Despite the large number of parents affected by the hospitalization of their child in the PICU and the severity of their anguish, little is known about the complex environment in the PICU that affect their experience and well-being. The available reports were also based on western settings, which do not fit with the Malaysian setting. This makes it difficult for HCPs and researchers to establish evidence-based initiatives to support parents in managing the impact of PICU admission. Therefore, this study aimed to explore the experiences of managing children on mechanical ventilation support in Malaysia from perspectives of parents and nurses. Methods: This study was a generic qualitative research study design. In-depth interviews were conducted over one year in a tertiary public hospital in a district in Pahang, Malaysia, with 45 selected participants (18 mothers, 3 fathers, and 24 nurses). Data were analysed using ATLAS.ti software following thematic analysis. Findings: The study identified four main themes: (1) The unpleasant experiences in PICU, (2) Participation in the child's care, (3) The struggles, and (4) Navigating the parents through the ride. Based on the results, parents' experiences correspond with the Kubler-Ross theory of grief but may fluctuate between the phases. Their experience journey started with denial, anger, bargaining, and finally, accepting the new truth of their world. Besides, this study revealed that the dynamics of interpersonal relationships between nurses and parents could either promote or impede the parent's experience in caring for their child with mechanical ventilation in the PICU. Apart from that, the attitudes and professionalism of nurses notably influenced the parents' experience during their child's admission to PICU. Ultimately, adequate physical and psychological support for the parents from families, friends, and nurses was vital to help balance their emotional, psychological, and financial burdens. Many coping strategies were utilised by parents when they exited the ride. The results also demonstrated that nurses played a crucial role in assisting the parents towards their child's hospitalization by providing support from admission until the child was discharged. Conclusion: Parents experienced turmoil of emotion and faced several challenges throughout their child's hospitalization in PICU. The study showed that there is a necessity for proper policy and guidelines in supporting the parents during their child's admission into the healthcare system in Malaysia. Given the lack of support for parents with children on mechanical ventilation, there is an urgent requirement to support future parents in PICU to avoid more negative consequences. This research is the groundwork from the parents' or nurses' perspectives that addressed their experiences, challenges and coping measures throughout the admission.