Living Well With a PICC at Home: What Patients Said They Actually Need (and the Booklet They Helped Build)

Study Overview

More adults are going home with a peripherally inserted central catheter (PICC) for treatments like antibiotics or cancer therapy. While clinicians often provide education about complications, many patients say the information is too technical and doesn’t help with the practical reality of living with a PICC day to day.

This mixed-methods study used a co-design approach to create a patient information booklet called “Living well with a PICC at home.” The team first interviewed 15 health consumers to capture real strategies and information preferences, then developed a prototype booklet and evaluated it with consumers and an external nurse panel. Readability was also assessed to ensure it was genuinely easy to understand.

Key Findings

• Patients described four main ways they cope and adapt at home
  • Their strategies clustered into: coping emotionally, taking responsibility and understanding information, modifying daily life, and accessing support.
• Practical life adjustments were a major theme
  • Showering and keeping dressings dry came up repeatedly, along with clothing choices, housework modifications, and managing family life (including tips from parents with young children).
• Patients wanted both practical and clinical information
  • Many wanted reassurance and clear explanations about insertion, tip position checks, dressing care, removal, and what to monitor at home, not just “go to ED if unwell.”
• The booklet was rated highly by both consumers and nurses
  • The prototype was rated as highly relevant and comprehensive, and reviewers liked the tone, clarity, and visual appeal.
• Readability was strong
  • The booklet scored well on readability testing, aiming for a level most adults can comfortably understand.

Implications

This study shows that the best PICC resources are not built for patients, they’re built with them. A co-designed booklet captures the real-world gaps that standard education often misses, especially the practical “how do I actually live with this?” advice that helps people feel confident at home.

It also reinforces a simple but important point: when patients are expected to manage risks at home, education needs to be clear, usable, and reassuring, with practical guidance that fits daily life.

Read more:https://doi.org/10.1111/jan.70146

Authors: Rebecca Sharp; Qunyan Xu; Robyn Pumpa; Nadia Corsini; Julie Marker; Jodie Altschwager; Alanna Ortmann; Lisa Turner; Lili Jin; Amanda Ullman; Adrian Esterman