CLINICAL PROJECT

Create a task aid to help parents safely perform important central line care tasks at home

Services

  • Design strategy

  • Information architecture

  • User and stakeholder research

  • Copy editing

  • Creative direction

  • Production coordination

Outcomes

  • Developed two use-specific task guides, produced in three languages, for use with in a quality improvement project

  • Preliminary data suggest that parents and nurses view the materials as acceptable


Background

Pediatric oncology and hematology patients often have a central venous catheter (also called a "central line") inserted in their chests to make it easier to deliver medications or nutrients. This allows the kids to spend most of their time outside the hospital during treatment, but having a central line increases the risk of getting a serious blood infection. Meticulous care of the line is required, both in and out of the hospital.

Situation

A team from Dana-Farber Cancer Institute and Boston Children's Hospital were working on an intervention to reduce blood infections in their pediatric oncology and hematology patients.

They thought it might be possible to lower the risk of infection by improving line care at home. Their solution included teaching parents good line care practices, encouraging parents to practice during a child's hospital stay, offering parents a tool kit with cognitive aids for use at home, and having a nurse provide follow-up coaching in a teach-back session in the clinic.

The planned tool kit would provide a washable surface, like a placemat, upon which parents could stage supplies. Images on the placemat would serve as visual prompts and sections were colored coded to correspond to separate checklists for each line care task. 

We were hired to help make the tool kit easy for people to use.

How we helped

We worked with the team on user research, content analysis, and strategic planning and designed two illustrated task aids that parents can follow while performing various central line care tasks at home: one larger and more detailed for inexperienced parents, and one smaller "reminder" guide for travel or quick reference.

The materials are currently in use in an ongoing quality improvement project. Although the data has yet to be published, preliminary indications suggest that user and nurse acceptance are positive. 

Links

Visit The Washington Post to read an article from September 2017 describing the project: Caring at home for a child with cancer can leave family members with risky tasks


Process notes

Discovery

After initial meetings to understand the proposed solution and get to know the team, we began by reviewing the existing educational materials about central line care from both institutions, including print materials and task videos. We grounded our understanding with a review of clinical research into central line – associated blood infections (CLABSI).

Process map of pediatric central line care between hospital, clinic, and home.

Next, we conducted interviews and an on-site discovery session with the team to clarify objectives and define success for the overall effort, map the process, identify user types and contexts, and distinguish facts from assumptions. Those findings, along with subsequent user research, created a foundation for our analysis and recommendations.

User Research

We interviewed nurses responsible for inpatient training and teach-backs, spoke with parents whose children had "graduated" (no longer needed the central line), observed new and experienced users performing key line care tasks, and observed and spoke with a limited number of parents of current patients.

Families are overwhelmed. It takes times for them to be in the right spot where they are far enough from the shock of diagnosis that they can concentrate on something else that is not just the diagnosis.
— Dr. Chris Wong Quiles

We knew that the clinical team served a population that was diverse in income, language, literacy, family structure, and home environment. Due to the limited number of appropriate families in treatment during the project, this diversity was not reflected in our user sample. Materials were produced in three languages (English, Spanish, and Arabic) and we hope that as families use these materials during trial, the team will learn whether differences within the population suggest changes or other approaches that could better serve their needs.

It's a physical world

The physicality of both the task and the environment are critical whenever creating task aids. Observing people in their actual environment is our preferred approach, but in this case we were unable to visit patient homes.

User research: it was helpful to ask parents of pediatric patients to draw their process.

Instead, we asked parents and nurses to draw a picture of how they staged supplies, to describe the places in which they performed line care, to demonstrate where they would stand or sit relative to the child, and to talk about things that were hard or went awry.

FROM INTERVIEW NOTES: One young teen was eager to talk about the "dog incident": One day, as they were heading out the door to the clinic, her dog ran by and tugged the line and the cap was pulled off. Thankfully it did not pull the line out, but they had to stop and immediately do a cap change for the first time since leaving the hospital.

What are the emotional implications?

Each family had come up with a unique way of organizing the supplies and getting ready for line care, and every person we interviewed expressed an attachment to their own way of storing and staging supplies. These findings suggest that by creating their own system, parents were able to gain a sense of control in a context that may otherwise feel out of control.

FROM INTERVIEW NOTES: When asked about how she stored supplies, the mom said she kept cap change supplies in the kitchen. When asked why, she said that she did not want to put supplies in a closet because “this is only temporary.”

How the care task is performed makes a difference for safety, but how parents organize supplies does not. The placemat as originally envisioned, we realized, would eliminate an opportunity for parental control without adding benefit. A placemat did remain as one element of the toolkit, but became an empty (therefore flexible) cleanable space.

What happens to a person's needs over time?

It is useful to distinguish between people who are new to a task and people who are experienced performing that task: those groups often have different needs. Over time, of course, if a person keeps performing the same task, they will transform from being inexperienced to experienced. Understanding how quickly this happens, and how much a person's needs change between those states, is a common design challenge.

Central lines must be flushed twice daily and the cap must be changed twice weekly, so families rapidly accumulate experience with those tasks.

FROM INTERVIEW NOTES: When asked whether she used an existing education sheet as a guide, the mom said that she did try to follow it as a checklist but had a hard time understanding the correct order. She wants quicker steps for use in the moment: "Once you learn to do it, you just need trigger items and simple pictures."

When parents first learn line care, they want a detailed tool they can refer to (and easily read) while performing the tasks. But after just a few weeks (sooner for some people), they want instead a simple version they can use occasionally to refresh their memory, or when they need to give guidance to a sitter or grandparent who may just need to perform one task one time.

Information architecture

Each family’s line care experience spans two facilities and their home: parents get training in the hospital before their child is discharged and later return to the clinic for treatment and a teach back session.

It was important to identify and understand any differences between the inpatient and clinic sides, so we interviewed nurses from each about how they perform and teach the line care tasks and analyzed the existing printed materials that parents might see.

By highlighting semantic and structural inconsistencies, we prompted the team to pick preferred wording, agree on task sequence and description, and identify any choices that the team felt should be tested with patients.

Design strategy and creative direction

Working with the team in an onsite workshop and follow-up remote meetings, we co-developed a plan to describe and guide the work. Here are a few highlights:

What are the "bedrock" ideas that underlie this work?

  1. Our #1 goal is always safety of the child

  2. Good line care at home helps reduce the child’s risk of infection

  3. Parents can competently perform line care tasks

What are our goals for improving home line care?

The tool kit should help parents:

  1. Be competent (essential)

  2. Feel confident (desired)

  3. Feel comfortable (bonus)

How will we define what competent looks like?

The team identified three actions — washing hands, scrubbing the hub at least 15 seconds, and limiting interruptions — as the most significant for risk reduction. Other steps are also important, but these are the actions that parents should always get right and that need to be emphasized in training and in the task aid in both pictures and words.

What requirements will limit (and therefore drive) our design exploration? 

Materials for home use by parents would need to:

  • Work for both inexperienced and experienced users

  • Be physically stable on uneven surfaces and usable while performing tasks

  • Be cleanable with disinfectant wipes

  • Visualize key tasks to help guide people with low literacy

  • Require minimal layout modification when translated into three languages, including Arabic (right to left reading direction)

  • Complement existing educational materials

Early design explorations ranged from placemats and small spiral notebooks to a monopoly-like game board. Ultimately, we created two options for initial testing: a higher-detail aid for novices and lower-detail aid for experienced users. The intent was to learn which approach best suited most users. Based on feedback from families and nurses, the team elected to prototype, test, and ultimately produce both tools so that families can choose the version they prefer.

The final tool kit produced for trial

The Family Guide for Central Line Care at Home (printed in three languages).

  • Family Guide for Central Line Care at Home
    Large, spiral-bound tented booklet with color-coded tabs, descriptive task instructions and detailed illustrations, printed on cleanable synthetic paper.

  • Line care supply mat
    Tabloid-size page that can be laser-printed on cleanable synthetic paper.

 The Central Line Home Care for Pediatric Patients quick guide is opened to show key safety tasks.

The Central Line Home Care for Pediatric Patients quick guide is opened to show key safety tasks.

  • Quick Guide: Central Line Home Care for Pediatric Patients
    Small, portable card set bound with a ring, with simplified task prompts and simple line art illustrations, printed on cleanable synthetic paper or laminated.

Production postscript

The original Quick Guide was an accordion-fold design that, when opened, allowed users to see at a glance either the general information about staging supplies or the step-by-step instructions for all three care tasks. Unfortunately, the synthetic paper recommended by the printer did not easily lie flat. After additional research and testing with other cleanable papers, we concluded that other options would not perform any better. To resolve the issue, we made minor revisions to the design and printed the content on a series of cards held together with a single ring. The revised solution still allowed for two cards to be viewed side by side, which was critical since each procedure had to span two cards to fit the minimum usable content at a readable size.

 

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