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“I think we know more than our doctors”: How primary caregivers manage care teams with limited disease-related expertise

Maia Jacobs
Oct 2, 2019 · 6 min read

This post summarizes our research paper “I think we know more than our doctors”: How primary caregivers manage care teams with limited disease-related expertise by Maia Jacobs, Galina Gheihman, Krzysztof Z. Gajos, and Anoopum S. Gupta. The paper will be presented at the ACM Conference on Computer-Supported Cooperative Work and Social Computing.

There are an estimated 400 million people in the world managing a rare disease, a population larger than the United States¹. For these millions of people, finding sufficient medical expertise can be challenging, if not impossible.

What happens when working with healthcare providers who have never heard of your disease? One parent, whose son was diagnosed with a rare neurodegenerative condition, explained that these situations completely change the medical encounter:

“When we were given the diagnosis one of the things that the immunologist told us was, ‘you are going to be the primary leading expert on your kid.’ Because most doctors you come into contact with are either never going to have heard of the disease or have treated anybody with it.”

Few studies have explored how patients and primary caregivers cope with difficulties related to accessing disease-related expertise. As part of a larger project developing support tools for individuals with neurological conditions, we conducted qualitative interviews with the primary caregivers of children with a rare neurodegenerative disorder, ataxia-telangiectasia (A-T), to better understand care coordination practices and challenges.

We partnered with the Ataxia-Telangiectasia Children’s Project (A-TCP), a non-profit organization that raises funds to support the development of life-improving treatments for A-T and develops resources for families coping with A-T. Events organized by the A-TCP provided us with the opportunity to meet with families caring for children with A-T who live across the United States, and who work with different healthcare systems.


We found that participants took on a number of care coordination tasks in response to their care team’s limited experience with A-T. Care teams include healthcare workers with different backgrounds and goals. In the context of A-T, these care teams often included neurologists, immunologists, therapists, primary care providers, as well as school nurses, teachers, and aides.

Task 1: Educating care teams

When working with healthcare professionals who had no prior knowledge of A-T, primary caregivers took on the role of educating team members. Educating the care team included sharing details about the disease’s symptoms, treatments, and ongoing research:

“The A-TCP booklets have been huge. They have the caregivers manual which is very helpful for the doctors and the teachers. It’s a big read so they really have to be committed. So I went through it and just made copies, like this is for occupational therapy, this is relevant for physical therapy. Because as a teacher I know when a parent comes in with a mountain of paperwork it can be overwhelming. And you want them to get the most important things quickly. And then they can ask me questions from there.”

Educating care team members was an ongoing responsibility. As a result, participants regularly expressed the need for more resources to help them educate their large, and frequently changing, care teams.

Task 2: Initiating care changes

Participants were often responsible for initiating changes to their child’s care as the disease progressed and their needs changed. This meant that primary caregivers needed to recognize changes in their child’s health and when these changes required adjustments in their care routines:

“The big task [as a caregiver] is seeing the change. One day it seems like everything is normal, and then it progresses. Every few months you’re adjusting to the decline.”

“Educating yourself is really important for parents. To not sit back and wait for a doctor to tell them what they should be doing. You have to be proactive.”

Primary caregivers served as the experts about the disease when interacting with their child’s care teams, but this expertise would decline over time as the disease progressed. Being proactive was considered critical by many participants, and yet they did not always know what they were preparing for, how to prepare, and how to adapt their child’s care.

Task 3: Preventing adverse events

Notably, almost all of the participants shared examples of adverse events that occurred due to a lack of understanding of how to care for a child diagnosed with A-T:

We go to the ER, and the doctor wanted to put Lidocaine in his throat. They wanted to just numb his throat. And I said, ‘oh no no no, you can’t do that.’ He goes, ‘what do you mean I can’t do that?’ I said, ‘you can’t do that, he’s got ataxia, he already has swallowing issues. You numb his throat we might lose the ability to swallow.

The above example shows how participants took an active role in monitoring treatment decisions and advocating for proper care. Many participants commented that while opposing a healthcare provider’s decision can be difficult, this became a common and necessary part of caregiving for a child with a rare disease.

The Role of Online Community Support

When describing these care coordination tasks and challenges, participants frequently brought up their use of an online health community:

“I had a concern because she tends to cry a lot in the night complaining that her leg hurts. So I didn’t know if that was something specific to her, or something that other A-T kids have in common. And it tends to be that they do get a lot of pain in their body. It makes total sense because I think her muscle are always contracting and moving on their own. It’s like she’s working out all the time. And that was something I didn’t see in Google or the doctors said. So we’ll find more interesting data [on Facebook].”

These communities provide an important space where caregivers can share resources related to care coordination tasks, see how resources among community members are adapted to the specific needs of each child, and learn how other families have operationalized these resources to help them manage their care teams.

Despite the benefits, a number of barriers limited participants’ use of the online health community, including the emotional consequences of participation and information overload:

“It does get to me a lot that every time a child dies it’s put out there. It’s really hard because you get to know them. Every time that happens you put yourself in that position because you’re like, that could have been my child. Then you start thinking, when will it be time for you to post that? The things that I’ve seen lately, they’re too harsh. So I try to look away, for now.”

Primary caregivers with young children who had not yet experienced much disease progression found these posts especially distressing and too emotionally burdensome. Unfortunately, due to the design of the group, community members could only opt to view all content shared within the community, or none. Thus, parents must decide between community participation and their own emotional well-being

Based on these findings, we believe important research agendas include: 1) creating tools to support these care coordination tasks and 2) increasing access to, and control over, online community knowledge. In the paper, we expand on these research opportunities, considering how technologies may be used to develop materials for care teams, encourage the explicit sharing of adverse clinical events, provide personalized information recommendation, and increase control over content topics. We believe such research is a critical step in supporting communities who experience barriers accessing medical expertise.

Ethical Considerations

In writing this manuscript, we faced a tension between bringing awareness to the disease that was the focus of our study and increasing the risk of participant identification due to the rarity of the disease. Based on conversations with the research team, research participants, and our collaborators at the A-TCP, we have decided to share the disease name. Therefore, in both this post and the research paper, we purposefully omit demographics about participants and their children, such as age, location, and years since diagnosis, to reduce the risk of re-identification.


Research from the ACM conference on computer-supported…

Maia Jacobs

Written by

Postdoctoral Fellow at Harvard University. I study how health technology can support people’s changing needs and goals.



Research from the ACM conference on computer-supported cooperative work and social computing

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