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ABSTRACT
Objective
This study aims to explore the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema. The findings will provide a basis for developing targeted and effective nursing interventions.
Methods
A phenomenological research approach was employed. From October 2022 to January 2023, semi-structured in-depth interviews were conducted with 12 caregivers of infants with congenital megacolon undergoing home reflux enema in a tertiary paediatric hospital in Fujian Province. The collected data were analysed and organized using the Colaizzi’s 7-step analysis method, leading to the identification of key themes.
Results
The analysis yielded three major themes concerning the caregiver burden experience in the care of infants with congenital megacolon undergoing home reflux enema: inadequate disease-related knowledge, presence of multiple pressures during the caregiving process, and a desire for greater support.
Conclusions
This study employed qualitative interviews with the caregivers of 12 children with congenital Hirschsprung’s disease undergoing home reflux enema, and the feelings of caregivers of children with reflux enema at home after discharge were deeply understood. It is recommended to implement positive psychological interventions based on the PERMA model and incorporate “Internet + collaborative nursing” to provide caregivers with professional knowledge, address their pressures and needs, and promote their well-being while enhancing nursing abilities.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Availability of data and materials
The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.
Author contributions
Yuanyuan Fang, the first author, contributed to brainstorming and the design of the experiment, the implementation of the experiments, the collection and analysis of the data, and the drafting of the manuscript. Yuanyuan Fang and Lingjing Teng, Nurse-in-charge; Yulan Kang, Associate professor; Lifang Lin, Nurse practitioner; They all works in Fujian Children’s Hospital (Fujian Branch of Shanghai Children’s Medical Center), College of Clinical Medicine for Obstetrics & Gynaecology and Paediatrics, Fujian Medical University.
Pingping Qiu, corresponding author, contributed to brainstorming and the design of the experiment, the implementation of the experiment, and the drafting of the manuscript. Yulan Kang, the second author, contributed to brainstorming and the design of the experiment and the critical reviewing of the speciality knowledge related to the manuscript. Lingjing Teng, the third author, contributed to brainstorming and the design of the experiment and guided the manuscript revision. Pingping Qiu is the corresponding author, Associate Professor, MSc; She works in School of Nursing in Fujian Medical University.
Ethics approval and consent to participate
This study was approved by the ethics committee of Fujian Children’s Hospital (2022ETKLR08032) and strictly adhered to the tenets of the Declaration of Helsinki. Informed consent has been obtained from legal guardian(s) of all participates.
Consent for publication
The manuscript is approved by all authors for publication.
Additional information
Funding
Notes on contributors
Yuanyuan Fang
Yuanyuan Fang, Registered Nurse, the master’s student at the School of Nursing, Fujian Medical University. She is good at qualitative research, and has been working in the pediatric surgery department of Fujian Children’s Hospital for more than ten years, with research areas including the care of pediatric digestive tract and pediatric tumor diseases, as well as interventions for the psychological health and quality of life of related populations.
Yulan Kang
Yulan Kang, Deputy Chief Nurse, Chief Nurse of Fujian Children’s Hospital, a member of the Teaching and Research Office of Fujian Medical University. Her research areas include children intensive care, psychological care, nursing safety, and nursing education.
Lingjing Teng
Lingjing Teng, Registered Nurse, the head nurse of the Department of General Surgery at Fujian Children’s Hospital. Her research areas include neonatal intensive care, nursing of pediatric surgical diseases, and psychological care for children and their families.
Lifang Lin
Lifang Lin, Registered Nurse at pediatric surgery department of Fujian Children’s Hospital. She is good at qualitative research, with research areas including the care of pediatric digestive tract and pediatric tumor diseases.
Pingping Qiu
Pingping Qiu, MSc, Associate Professor in Maternity Wellbeing and Nursing Quality. Qiu’s research has focus on the factors of maternity wellbeing, such as fear of childbirth, and factors of nurses work, such as emotional labor.