Exploring Longterm Gastrostomy Use in Adults With Cystic Fibrosis

Area of Science:

• Medical research
• Qualitative health research
• Cystic Fibrosis research

Background:

• Gastrostomies are crucial for nutritional support, growth, and lung function in Cystic Fibrosis (CF) patients.
• Adults with CF often have long-term gastrostomies, facing unique challenges, especially with new modulator therapies.
• This study investigates the lived experiences of adults with CF who have a gastrostomy.

Purpose of the Study:

• To explore the experiences and perspectives of adults with Cystic Fibrosis (CF) who have lived with a gastrostomy.
• To understand the challenges associated with long-term gastrostomy use in adults with CF.
• To inform clinical practice regarding holistic support for this population.

Main Methods:

• A qualitative, single-centre study involving adults with CF and a gastrostomy.
• Semi-structured interviews were conducted, audio-recorded, transcribed, and analyzed using grounded theory.
• Data saturation was achieved, and findings were synthesized into major conceptual themes.

Main Results:

• Four primary themes emerged from thirteen participants: Psychological (body image, stigma, adjustment), Pain & physical concerns (pain, granulation, leaking), Social (relationships, conversations), and Functionality.
• Significant psychological impacts include body image issues, embarrassment, social isolation, and stigma.
• Physical concerns encompass pain, stoma site issues like hypergranulation and leaking, affecting daily life.

Conclusions:

• Growing up with a gastrostomy has profound psychological and social effects on adults with CF.
• Clinicians must provide comprehensive support addressing both the physical and mental health aspects of long-term gastrostomy care.
• This research underscores the need for integrated care models for adults with CF managing gastrostomies.