Exploring Longterm Gastrostomy Use in Adults With Cystic Fibrosis

Gastrostomies are used to support nutritional adequacy, growth and lung function in people with Cystic Fibrosis (CF). Adults with CF living with a gastrostomy face unique challenges due to the time and length of placement often being inserted in childhood and extending through to adulthood. In the era of CF modulator therapies removal of gastrostomies is increasingly being contemplated, and our aim was to understand experiences and perspectives of adults with CF who have lived with a gastrostomy.

This was a single-centre qualitative study in adults with CF who have lived with a gastrostomy. All semi-structured interviews were audio recorded, transcribed and analyzed inductively using grounded theory methodology. Data saturation was reached when no new codes emerged. Findings were summarized into major conceptual themes. Participant demographics and medical history were obtained.

In total, thirteen participants completed semi-structured interviews. Analyzes revealed four main themes in adults with CF who have lived with a gastrostomy (1) Psychological (i.e. body image, embarrassment, isolating/social stigma, acceptance/adjustment), (2) Pain & physical concerns (i.e. general pain, hyper granulation, leaking), (3) Social (i.e. relationships and navigating social conversations), and (4) Functionality.

Our study explored lived experiences of adults with CF and a gastrostomy. We found there was significant psychological and social impact of growing up with a gastrostomy, highlighting the need for clinicians to provide holistic support that addresses both physical and mental challenges of long-term gastrostomy care for adults with CF.