Living with a Central Line: Tips and Resources

In a previous blog, I worked with a central venous catheter (CVC) specialist to discuss proper care and hygiene of a central line, and how to troubleshoot problems that can occur. I now want to share what I have learned from caregivers who work with central lines. In addition, I will share the expertise of my colleagues from Social Work and Child Life to offer resources and tips on how to live with central lines.

I teach an advanced class for central line care at Children’s Hospital Los Angeles, in which parents share ideas, discuss problems and find solutions for helping their child live with central lines at home. However, not every parent or caretaker has the time to come to class. So, I partnered with Manisha Parikh, LCSW, from Social Work and Amanda Brown, CLS, from Child Life at CHLA to pull together the following information.

Child Life

Amanda Brown provides the following tips:

• When a child is hospitalized with a CVC, families should know that it’s okay and in fact, helpful that they try to maintain their home routine for dressing changes. Of course, most of the time it’s necessary for the RNs to do the dressing change while in the hospital, but parents are welcome to recreate the right setting for the patient to help cope with the procedure. Families should consider their home routines and replicate the distraction, sequence of events or location, such as the couch or bed. Making sure that the parent still feels like a parent is so important and helpful when hospitalized.
• I believe that one of the biggest challenges for families going home with a CVC is adapting to the “new normal.” But establishing guidelines and routines for all family members involved with the CVC can be helpful. For example, families can allow the patient to do something messy on the day of the dressing change—like finger painting or water play—and let siblings help collect necessary items for the dressing change.
• Setting limits for both patient and siblings, such as when it’s OK to be in the room or when it’s necessary to wear a mask, can help to establish that the CVC has to be taken care of and that it can be dangerous not to listen to the caregiver. The messages can be serious, but fun as well.
• Having constant discussions about germs and keeping hands clean can be a fun family activity.
• The patient and siblings should be allowed to medical roleplay so that they can feel part of the work of caring for the line. They should be told, “It’s OK to play with a line on a doll, but not OK to touch the line on the patient.”

Social Work

Manisha Parikh offers the following resources, solutions and insights for families being discharged with central lines.

• Social workers give families support and resources to live life to the fullest. When first leaving the hospital, families may feel mixed emotions—excitement and nervousness. They may be excited and happy to finally have their child at home after an extended hospital stay, but the responsibility of taking care of a central line at home may seem overwhelming. After all, parents are now full-time nurses at home. Families have learned, practiced, and feel mostly confident to care for the lines. Yet we understand that the thought that something can go wrong is always in the back of their minds.
• At home, families may realize that taking care of their medically complex child will take a lot of skill and patience. Some parents recount that they no longer have time for anything else and that they are scared to go anywhere with a child who has a central line. They express feelings of loneliness and isolation and many even experience depressive symptoms. Some of them need to be referred to see therapists for support and some may just need more social opportunities so that they can vent and feel connected to people who understand.
• Families have many questions about how life will be. They may want to know if their kids can go to school, if they can travel together, or if they can play sports safely. As some children will grow older and remain on central lines, the question of family and relationships often comes up as well.
• Sometimes families have basic needs and low resources. The biggest task of a social worker is to assess the barriers to safe line practices. Housing, food and social stability are all key factors in caring for a child with a line. When basic needs aren’t met, focusing on keeping a child’s line safe may sometimes become secondary. It is the job of the team to see how they can assist with resources so that families can focus on safely caring for their child’s line.
• Our clinic will follow the child regularly to build relationships with the family, to help understand the needs of their growing child, to assess how things are going at home, and to determine what resources could help. One of the most useful resources is the Oley Foundation. This is a national foundation that provides online support and annual conferences for families to learn about the latest medical research, technology and tools to help treat their children. They also have tips, tricks and a network of other people who may be going through some of the same issues.
• When children start school or daycare, families should have an open and honest conversation with teachers and school staff about their child’s needs. The child may not be able to play some contact sports, but for the most part, his or her experience will be the same at school. Many children will need IEPs and 504 plans to keep the school up to date on the child’s educational and developmental progress. Families can also help school staff understand the particular needs of a child with a central line. We want to support all children so they can have the best educational experience as possible.
• It is also important that families try to build a network of local support. Through support groups such as our “Supper Club,” children and parents connect with one another and share stories and tips on how to keep the lines safe. The parents also bond with one another, and new families see that other families do live their lives normally. Some children swim, play sports, attend school functions, and have active social lives. As time goes on, the fear starts to fade as long as the lines are safe and infection-free.

Some patients may be hospitalized more frequently than others. For kids who are diagnosed with frequent line infections, their caregivers feel stress and guilt. It becomes even more important that we find ways to help them that go beyond basic care teaching. Some families devise solutions for problems. For example, one mom created protective vests that snap on and keep the line secure for toddlers. We make sure families can get a vest if needed. Our new advanced CVC class can help parents connect to one another as well so that they can meet and talk with other parents who live with central lines. As long as we do not accept that line infections are normal or acceptable, we can continuously work towards preventing them, therefore lessening major disruptions in the family’s quality of life. We want to help families have fun and feel safe at the same time!

I hope these tips have helped you and your family to have fun and feel safe at the same time!

If you want to learn more about the advance care class mentioned above, please contact our Family Resource Center at 323-361-7698.