Understanding Decision-making in Motor Neuron Disease Patients: A Qualitative Synthesis of Evidence on Gastrostomy Placement and Ventilation Choices

Swetlana Wary^*
*Correspondence: Swetlana Wary, Department of Gastroenterology, University of Alberta, Edmonton, Canada, Email:

Introduction

This synthesize qualitative findings from existing literature to gain a deeper understanding of how various factors influence the decisions of individuals with Motor Neuron Disease (MND) regarding two important interventions: gastrostomy feeding tube placement and ventilation. The study focuses on individuals who have been diagnosed with Motor Neuron Disease (MND). This is important as it sets the context for the research and specifies the target group of participants. The two interventions under investigation are gastrostomy feeding tube placement and ventilation. These interventions are commonly offered to MND to address functional decline associated with the disease. The study employs a qualitative research approach. This means it seeks to understand the experiences, perspectives, and decision-making processes of MND through methods like interviews, focus groups, or the analysis of existing qualitative studies.

Description

The primary aim is to synthesize existing qualitative literature on this topic. In other words, the researchers are gathering and analysing findings from previous qualitative studies to draw broader conclusions and insights. The study aims to understand how various factors influence the decisionmaking process. The study intends to synthesize the qualitative evidence from various sources to identify common themes, patterns, and insights related to how these factors interact and impact the decisions of MND regarding gastrostomy and ventilation. The findings from this research can have practical implications for healthcare providers, policymakers, and individuals living with MND. Understanding the factors that influence decision-making can lead to improved support and care for MND as they navigate complex choices about their treatment and care. The study followed the ENTREQ statement, which is a set of guidelines designed to enhance the transparency and reporting of qualitative research synthesis. Following established guidelines like ENTREQ is important in ensuring the rigor and reliability of the review process.

The findings from each of the 27 included studies were synthesized using a thematic synthesis approach. Thematic synthesis involves identifying common themes, patterns, and key insights across the collected qualitative data. It helps in summarizing and interpreting the rich qualitative information in a systematic and structured manner. The researchers conducted a comprehensive search across five bibliography databases. This step is crucial for identifying relevant studies that have explored the experiences of individuals with Motor Neuron Disease (MND), caregivers, and Healthcare Professionals (HCPs) related to decisions about gastrostomy and ventilation. In addition to the database search, the study also employed an extensive supplementary search strategy. This supplementary approach may include searching grey literature, conference abstracts, and other sources beyond traditional academic databases to ensure that no relevant studies are missed. The search process resulted in the identification of 27 papers that met the inclusion criteria. These papers contained qualitative accounts of the experiences and perspectives of MND, caregivers, and HCPs regarding decisions about gastrostomy and ventilation.

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Conclusion

The concept of a "tipping point" illustrates how individuals come to terms with the necessity of these interventions as their disease progresses. By following the ENTREQ statement and employing both database and supplementary searches, the researchers aimed to provide a comprehensive and robust analysis of the experiences and decision-making processes related to gastrostomy and ventilation in the context of Motor Neuron Disease. Thematic synthesis was used to distil the key findings and themes from the included studies, allowing for a deeper understanding of the subject matter. The importance of support from healthcare professionals and caregivers in facilitating informed choices while respecting the autonomy of the individuals.

Acknowledgement

We thank the anonymous reviewers for their constructive criticisms of the manuscript. The support from ROMA (Research Optimization and recovery in the Manufacturing industry), of the Research Council of Norway is highly appreciated by the authors.

Conflict of Interest

The Author declares there is no conflict of interest associated with this manuscript.

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