Challenges and Experiences of Gastrostomy Patients and Their Caregivers: Systematic Review and Meta-Synthesis

Abstract

Background:

Percutaneous endoscopic gastrostomy (PEG) tubes are vital for providing long-term nutritional support to individuals unable to sustain sufficient oral intake. The use of PEG tubes causes significant difficulties for patients and their caregivers.

Objectives:

This systematic review and meta-synthesis investigated the challenges and experiences of patients with PEG tubes and their caregivers.

Methods:

A systematic review and meta-synthesis were conducted across databases including CINAHL, Scopus, Web of Science, MEDLINE, PubMed, TUBITAK-ULAKBIM, Dergipark, and TR Dizin. This study focused on studies published from 2004 to 2024. Twenty qualitative and mixed methods studies met the inclusion criteria. Thematic analysis has been used to identify significant themes and patterns within the selected studies.

Results:

Three main themes and 6 subthemes emerged from the analysis: (1) Clinical challenges and support needs, including problems with the PEG tube and support and training needs; (2) psychological and emotional challenges, including perception of the PEG as a burden and stigma and social isolation; and (3) personal and social life, including impact on quality of life and economic challenges. These results revealed the complex nature of PEG care and illustrate the experiences and challenges of patients and carers.

Conclusion:

The management of gastrostomy care requires a comprehensive strategy that addresses the clinical, economic, emotional, and psychosocial needs of patients and caregivers. Planning such as comprehensive education, emotional support, and financial assistance can improve the quality of life of patients and carers. Future research should focus on developing customized strategies to handle the specific caregiving challenges in this context.