Parent-to-Child Transition in Managing Cystic Fibrosis: A Research Synthesis
Jennifer Leeman1, Margarete Sandelowski1, Nancy L Havill1
1School of Nursing, University of North Carolina at Chapel Hill.
Insights
This study synthesizes research on cystic fibrosis (CF) care transitions. It confirms existing theories and identifies new factors influencing the shift of CF management from parents to children over time.
Area of Science:
- Pediatric Pulmonology
- Health Services Research
- Mixed Methods Research
Background:
- Cystic Fibrosis (CF) management involves multiple treatments requiring adherence.
- Parental roles in CF care transition to children over time.
- Existing CF research often focuses narrowly on single treatments or age groups.
Purpose of the Study:
- To synthesize qualitative and quantitative findings on CF management transition from parent to child.
- To identify factors influencing adherence across treatments and over time.
- To integrate research on the evolving roles in pediatric CF care.
Main Methods:
- Mixed research synthesis of 17 reports from 16 studies.
- Utilized an existing grounded theory as a framework for synthesis.
- Integrated findings from both qualitative and quantitative research designs.
Main Results:
- Confirmed the existing grounded theory framework for CF care transition.
- Identified three additional factors influencing parent-to-child transition of CF management.
- Demonstrated the complexity of adherence across multiple CF treatments and developmental stages.
Conclusions:
- The transition of CF care management from parents to children is a complex, multi-faceted process.
- Understanding influencing factors is crucial for optimizing adherence and outcomes in pediatric cystic fibrosis.
- Further research should explore the identified factors to support successful care transitions.
Abstract:
Although parents and children must adhere to five primary treatments for cystic fibrosis (CF), and their roles transition over time, the scope of CF studies often has been limited to one treatment regimen or to children within a specified age range. The purpose of this mixed research synthesis study is to integrate findings from qualitative and quantitative studies addressing the transition of CF management from parent to child, as well as factors related to adherence across treatments and over time. An existing grounded theory was used as a framework to synthesize findings in 17 reports from 16 studies. The results confirm the theory and posit three additional factors that may influence parent-to-child transition of care management.
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