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The Lived Experiences of Children Who Have Undergone Kidney Replacement Therapy and Their Families: Protocol for a
Kenji Takao1, Maki Fujitsuka2, Shingo Ueki2
1Department of Nursing, Faculty of Nursing, Osaka Dental University, 11-8 Kuzuha Hanazono-cho, Hirakata, 573-1121, Japan, 1 72864 ext 3658.
Insights
This review synthesizes children's experiences with kidney replacement therapy (KRT) to create a home self-care program. The goal is to improve quality of life for pediatric patients undergoing dialysis or kidney transplantation and their families.
Area of Science:
- Pediatric Nephrology
- Qualitative Research Synthesis
- Health Services Research
Background:
- Kidney replacement therapy (KRT), including dialysis and kidney transplantation (KT), is initiated by 5-10 children per million annually in high-income countries.
- Home-based self-care becomes central post-dialysis initiation or post-KT for pediatric patients.
- Effective support across developmental stages and treatment transitions is crucial for children on KRT.
Purpose of the Study:
- To synthesize the lived experiences of children undergoing KRT and their families.
- To identify themes from qualitative studies to inform the development of a targeted self-care program.
- To address the life tasks and challenges faced by pediatric KRT patients and their families.
Main Methods:
- Systematic review following Joanna Briggs Institute (JBI) methodology.
- Comprehensive literature search across MEDLINE, CINAHL Plus, and PsycINFO without date or language restrictions.
- Data synthesis using the ConQual approach for qualitative research synthesis.
Main Results:
- The review will focus on physical, mental, and social aspects of pediatric KRT experiences.
- Identified themes will encompass challenges in hygiene, diet, medication adherence, infection prevention, growth, and social participation.
- Preliminary searches identified 1003 studies for screening, with completion anticipated by April 2026.
Conclusions:
- This systematic review will synthesize qualitative evidence on the daily lives of children and families managing KRT.
- Findings will contribute to developing a practical self-care program.
- The ultimate aim is to enhance the quality of life for pediatric patients on KRT and their families.
Background:
In many high-income countries, 5 to 10 children per million of the age-related population start kidney replacement therapy (KRT), which includes both dialysis (peritoneal dialysis and hemodialysis) and kidney transplantation (KT) for end-stage kidney disease. After peritoneal dialysis is introduced, or after KT, self-care at home typically becomes the main focus. Providing support for each developmental stage and transition period in the treatment process from dialysis to KT is an urgent issue.
Objective:
This review aims to synthesize the lived experiences of children undergoing KRT and their families. We will use identified themes to develop a self-care program aimed at solving the life tasks of children and their families.
Methods:
A search strategy will follow the Joanna Briggs Institute methodology and will be conducted in 3 steps: an initial limited search, a comprehensive database search, and a reference search of the included articles. MEDLINE (EBSCO), CINAHL Plus, and PsycINFO will be searched with no restriction on language or publication dates. The study selection, critical appraisal, data extraction, and data synthesis will be performed according to Joanna Briggs Institute guidelines for systematic reviews of qualitative research. Final synthesis will be assessed using the ConQual (confidence in the output of qualitative research synthesis) approach.
Results:
The review will include studies focusing on the experiences of children with KRT and their families. These experiences include physical, mental, and social issues, hygiene care, diet, fluid intake, medication, strict infection prevention, delays in growth and development, restrictions on social life, and a lack of social resources. This is an important issue because after starting dialysis, or after KT, many children are treated at home and experience these issues in their local communities and homes. As of May 2025, the authors have conducted 2 pilot searches to test and refine keywords of results with the help of the librarian and have identified 1003 studies for screening in MEDLINE. This systematic review is scheduled to be completed by April 2026.
Conclusions:
This systematic review synthesizes qualitative evidence regarding the daily life experiences of children and their families after initiating KRT, contributing to the development of a self-care program that enhances their quality of life.
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