Factors guiding gastrostomy tube decision-making for caregivers of children with cystic fibrosis: a scoping review protocol.

INTRODUCTION

While ensuring appropriate growth is essential for all children, optimising nutritional status in children with cystic fibrosis (CF) is critical for improving health outcomes. Nutritional challenges in CF are multifactorial and malnutrition is common. While gastrostomy tubes (G-tubes) can improve weight status in individuals with CF, they also have common and chronic complications resulting in clinical equipoise. To date, factors influencing G-tube decision-making among caregivers of children with CF have not been systematically explored. This review aims to chart existing knowledge about caregivers' decisional needs related to G-tube placement, with a focus on caregivers of children with CF, as well as known medical and psychosocial benefits and risks of G-tube feedings in paediatric care.

METHODS AND ANALYSIS: This scoping review will follow the JBI methodological framework. We will include articles published between 1 January 1985 and 1 November 2023 in English and Spanish from MEDLINE (Ovid), Embase, CINAHL, PsycInfo, Cochrane Database of Systematic Reviews and Web of Science related to G-tube decision-making. Articles published in languages besides English and Spanish will be excluded. Articles will be screened for final eligibility and inclusion according to title and abstract, followed by full texts. Articles will be independently reviewed by two reviewers and any disagreements discussed with a third reviewer for consensus. We will map themes and concepts, and data extracted will be presented in tabular, diagrams and descriptive summaries.

ETHICS AND DISSEMINATION: As a form of secondary analysis, scoping reviews do not require ethics approval. This review will inform future research with caregivers involved in G-tube decision-making for children with CF. The final review will be submitted to a peer-reviewed scientific journal, disseminated at relevant academic conferences and will be shared with patients and clinicians.

TRIAL REGISTRATION NUMBER: Center for Open Science. https://osf.io/g4pdb.