Using Research to Support Caregivers of Children With Cancer
Summary
My internship is in the Division of Pediatric Hematology-Oncology at Riley Hospital for Children with Dr. Emily Mueller and her research assistant, Anneli Cochrane. One of the major projects we have been working on is the development of an mHealth (mobile Health) tool, Cope 360, for caregivers of children with cancer to manage their child’s condition from home. Alongside this, we worked on two other projects. These included taking a second shot at a medical publication and writing a survey designed for primary caregivers of children with cancer. Some of the work I have done is abstract data from patient medical records, perform and write reviews of the medical literature, read medical publications to gather ideas, and code interviews that occurred with caregivers of children with cancer using the app during the alpha-testing phase. Currently, the app is about to undergo it’s second phase of testing, results for the publication are being written, and final edits to the survey are being made before it is distributed. All of the work we have done pertains to caregivers of children with cancer to better understanding the obstacles they face so we can make this life-changing event more manageable.
Objectives
Before I started my internship, my goals were to 1) apply skills that I have learned in my coursework and past research experience to the tasks that I will be completing at this worksite, 2) learn how to coordinate and participate in professional interviews comfortably and confidently, and 3) demonstrate mastery of skills like abstracting data conducting literature reviews with limited supervision. As I got more involved with the work I was doing, I was able to expand my goals so that they fit my overarching goal of attending medical school. Having the skills to abstract data, apply previous research/work experience, and interact with potential research participants is crucial. I will most likely utilize all of these skillsets in medical school, and for the rest of my career, so these were important goals for me to reach while I was at my internship with Dr. Mueller.
Background
Dr. Mueller’s research program is dedicated to understanding the experience of children with cancer and their caregivers as they navigate the healthcare system. She is specifically interested in finding ways in which to support caregivers with the medical management of their child with cancer in the home or community setting. Dr. Mueller’s team primary project is to co-design and create an mHealth tool to support caregivers of children with cancer.
When facing a cancer diagnosis, children and their caregivers undergo many mental and emotional burdens. Children rely heavily on their caregivers throughout their cancer journey for medical treatment and management and emotional/physical support. Because caregivers of children with cancer have other responsibilities like work, finances, and the possibility of taking care of other family members, they can experience a decline in mental and physical health. This could make it difficult for them to juggle the care that their child needs during this life-changing event. For these reasons, the work that is being done by Dr. Mueller and her team pertains to lightening the burden that caregivers of children face in their everyday lives.
Through the development of an mHealth tool, Cope 360, caregivers of children with cancer will be able to monitor their child’s medical needs from home. This will include symptom tracking, medication reminders, and creating a plan for emergency room visits. By having everything in one location on their digital device, our hypothesis is that caregivers of children with cancer will see an increase in their self-efficacy and reduction in stress when caring for their child with cancer.
Materials and Methods
Overall Research Focus
The primary goal of Dr. Mueller’s research is to understand the experience that children with cancer and their caregivers face as they work through this life-changing journey. To do this, Dr. Mueller and her team are creating an app for caregivers of children with cancer to use at home to help manage their child’s condition. Dr. Mueller and her team are also writing a survey for caregivers of children with cancer to better understand what they are going through so that we can help they as needed. Another project that we worked on was the revision of a publication on children with cancer who went to the E.D. with the chief complain of a fever, including an evaluation of those who were discharged home. At this point, I have been a part of qualitative data evaluation, survey design and development, and medical data abstraction from the electronic medical record (EMR).
Co-Design and Creation of the Cope 360 App
Dr. Mueller used the Van Houtven framework as a guide to help develop Cope 360 app. The Van Houtven framework states that “interventions to improve a caregiver’s clinical skills/knowledge, psychosocial (self-efficacy and coping) competency, support seeking (organizational and coordination), and/or quantity of caregiving will lead to benefits for both them and the patient with cancer.” The intention of the app is to support caregivers with the medical management of their child with cancer through symptom tracking, medication reminders, and emergency care planning. The app had undergone prototyping and alpha testing after which the interviews were transcribed. We used Nvivo qualitative software to assess for common themes and topics within the interviews. These themes and topics were relayed to the app design company to use for refining the app. We are currently drafting the manuscript outlining our findings to be submitted for peer review at a medical journal focused on mHealth technology. We utilized the EMR to ascertain eligibility criteria for the next phase of the research project, beta testing the app among caregivers for one week with a survey and interview at completion of their testing.
Survey of Caregivers of Children With Cancer
This survey was written by Dr. Mueller and her research team to better understand how we can be of help to caregivers of children with cancer. The survey covers multiple topics including 1) demographics, 2) caregiving experience, 3) caregiver team composition, 4) caregiver team communication, and 5) technology questions.
Caregiving experience allows us to understand how many individuals the primary caregiver is also providing direct care for (excluding the child with cancer). Caregiver team composition gives us an idea of how many individuals were involved in providing direct care for the child with cancer alongside the primary caregiver. Caregiver team communication informs us on the different ways (text messages, phone calls, video calls, etc.) that caregivers communicate within their teams on medical and non-medical topics concerning the child. The last section covers technology, which provides us with an understanding of what kind of devices caregivers us and if they face any barriers while using that technology (example: inconsistent internet access).
Medical Data Collection from Electronic Medical Record
The research team was also working on revising a manuscript that investigated children with cancer who presented with a chief complaint of fever to the Riley Emergency Department. We used the EMR to abstract further details about their clinical outcomes including the date, time, and location of their next healthcare visit after discharge. This was then included in the original dataset for further analysis. We are working on revising the manuscript in preparation for submission to a peer reviewed medical journal focused on emergency medical experiences.
Results
Cope 360 Prototyping and Alpha-Testing Manuscript
Through this qualitative endeavor, we found valuable information regarding alpha-testing of the Cope 360 app. The information to be included in the manuscript will include caregiver demographics, app set up and caregiver team creation, emergency action planning, logging symptoms, and app functions. Generalizations about each of these sections and the corresponding sub-sections will be discussed in the results portion of the publication.
Some of the generalizations that were made include:
3 out of 8 caregivers were confused if port is considered a central line when inserting patient information.
All caregivers stated that the virtual card would be helpful if they ever had to go to an ED outside of Riley Hospital.
Caregivers said it was easy to track headache pain. They appreciated the different faces showing levels of pain/discomfort.
Some caregivers thought the poop scale was not self-explanatory. A description or definition of “normal” would make it easier to gauge.
` Memorable quotes from interviews:
“Yeah, it is, and I really like that because when you’re in that moment, it’s hard to remember everything, and if you don’t have a bag just packed and waiting, which some things you don’t have extras of like cords and stuff like that to just have everything ready. Yeah, that’s cool.”
About the virtual ED card: “Yeah, and we have utilized two emergency room departments, one where her dad lives, and one’s here, and both of them have been disastrous. We’ve not had a good experience with either one of them. So, just as I’m reading this, I’m like oh my gosh. If I had something like this, I could be like look, this is what has to happen. I think it would be huge.”
About logging symptoms: “I think it’s a very convenient, very easy, very helpful because we may not write down as much as what we should, and this would be very easy to just pull up and push the buttons and say okay, this is what’s going on.”
Survey of Caregivers of Children With Cancer
This survey has yet to be distributed, so results are unavailable right now. However, our primary interest in the survey is receiving information on what individuals compose the caregiver team, as this is something that is not discussed in medical literature.
Some questions in the survey that can help us answer this question include:
“Please list the type of relationships of the individuals who were part of your child's caregiving team and provided direct care to your child with cancer: For example, if you are the child’s mother and your best friend helped provide direct care, then please list “Mother’s best friend.” Use as many boxes as you need.”
“Do you have any comments about who was part of the caregiver team providing care to your child with cancer?”
Fever ED Chief Complaint Publication
After gathering the necessary medical information from Cerner, our new results revealed the following details about healthcare utilization. For those patient encounters for children with cancer who presented with a chief complaint of fever that were discharged from the ED, we further evaluated their healthcare utilization after discharge. Amongst the 130 encounters with follow up information available, we found that 30% (N=39) had a return visit within 2 days and 97.7% (N=127) had a visit within 30 days. When evaluating unplanned return visits, we found that 15.4% (N=20) had an unplanned return visit within 2 days with 13 encounters resulted in an unplanned admission within 2 days (10% of discharged visits, see Figure 1). The locations of all unplanned return visits included 21 visits to the ED (16% of discharged encounters) and 9 visits to the outpatient clinic/setting (6.9% of discharged encounters).
Fever CC Discharge Figure 1_Semifinal.docxConclusion
Throughout the course of this internship, I learned that there are multiple research methods that can be used to understand and impact the way in which caregivers of children with cancer navigate their journey through the healthcare system. We have utilized a variety of methods including retrospective chart review with medical data abstraction, quantitative surveys, and qualitative semi-structured interviews.
By doing chart reviews, we were able to take patient information from the EMR to abstract details about clinical outcomes. This information included time, location, and date of the next clinical visit after discharge. Quantitative surveys were helpful in gathering information about caregivers of children with cancer about how caregiver teams primarily communicate with one another and how many members the caregiving team consists of. These details allow us to better understand how we can support caregivers of children with cancer. Qualitative semi-structured interviews were used as part of the creation and testing of the Cope 360 app. These interviews gave us the opportunity to test the app with caregivers of children with cancer to obtain information on any changes they wanted to see and what they liked and disliked about the app. Combining all of these different research methods together allows us to find actionable insights about how we can further support caregivers of children with cancer as they work through their child’s diagnosis and the healthcare system.
Works Cited
1. Mueller EL, Cochrane AR, Bennett WE, Carroll AE. A Survey of Mobile
Technology Usage and Desires by Caregivers of Children with Cancer. Pediatr Blood Cancer 2018 Nov;65(11):e27359.
2. Burcham M, Cochrane A, Carroll AE, Mueller EL. Emergency Department Chief Complaints Among Children with Cancer. J Pediatr Hematol Oncol 2018 Aug; 40(6):445-449.
3. Mueller EL, Cochrane AR, Lynch D, Cockrum BP, Wiehe S. “Identifying patient-centered outcomes for children with cancer and their caregivers when they seek care in the emergency department. Pediatr Blood Cancer 2019 Oct;66(10):e27903.
4. Mueller EL, Cochrane AR, Wiehe S. “Children with Cancer and Their Caregivers Perspectives on Planning for Urgent Medical Needs at Home.” J Pediatr Hematol Oncol. 2020 Nov;42(8):e723-e729.
5. Mueller EL, Jacob SA, Cochrane AR, Carroll AE, Bennett WE. “Variation of Emergency Department Admission Rates Among Children with Cancer at Children’s Hospitals in the United States.” Pediatr Blood Cancer. 2020 Jun;67(6):e28140.
Acknowledgements
I would like to acknowledge Dr. Emily Mueller and the LHSI program for providing me with the opportunity to take part in research to better understand the burdens that caregivers of children with cancer face when navigating the healthcare system. Dr. Mueller is currently supported as the Principle Investigator on an NCI K08 Mentored Clinical Scientist Research Career Development Award entitled “Utilizing mHealth Technology to Support Caregivers in the Medical Management of their Child with Cancer.”