Exploring the Experiences of Children Living with a Skin-Tunnelled Catheter or a Totally Implanted Port, With a Focus on Quality of Life

Background: A central venous access device is an intravascular catheter, such as skin-tunnelled catheters or a totally implanted port, which terminates at or close to the heart and provides intravenous access to paediatric patients presenting with cancer, haematological diseases and cystic fibrosis for example. However, evidence looking at the effects of these devices on the daily living and quality of life of young patients is lacking. Despite the great benefits central catheters provide to patients, there is little understanding of the lived experience of its use during the illness experience. Aim: This research aims to address the existing gap by exploring the experiences of twenty participants, five young participants with a totally implanted port and five with a skin-tunnelled catheter, each accompanied by one of their parents. Methodology: A qualitative descriptive phenomenological approach was adopted in this study. Findings: The findings of the study show that despite central venous access devices being described to considerably ease the process of treatment, the type mattered, with totally implanted ports reportedly impacting less negatively on the young persons’ everyday lives and aspects of their quality of life than skin-tunnelled catheters. Totally implanted ports require a needle to access them, although the participants in this study minimised the pain caused by it. Data also indicate that at least for older children, the benefits of totally implanted ports in terms of freedom to engage in everyday life outweigh the perceived disadvantage of the needle required to gain access. Discussion: Despite the findings, a choice of device was not given to the study participants, and the decision was made by the healthcare professionals. By exposing the perceived advantages and disadvantages of both devices, this dissertation aims to highlight that in the paediatric population, the type of device may have a pervasive and important impact on everyday life and on quality of life, and this needs to be given appropriate weight in formal guidelines for clinicians. Conclusion: Young patients and their families should be involved in choosing the central venous access device type. This research provides a novel insight into the implications of having one device over the other during the illness process. Its valuable knowledge would inform future practice in Irish paediatric hospitals in terms of choice and patient involvement, which in turn would positively affect the patient's quality of life.