Presentation
DH6 - Exploring the telehealth experience of the children with medical complexity caregivers during the COVID-19 Pandemic: Sentiment Analysis
DescriptionIntroduction
Children with medical complexity (CMC) are children and youth having multiple health conditions that require extensive and specialized medical care and attention. The child of medical complexity aged 21 or below. They represent a unique and diverse patient group , ranging from congenital disorders and chronic illnesses to developmental disabilities and rare genetic conditions. Prior to the pandemic, CMC and their caregivers were having regular visits to healthcare facilities, where multiple healthcare providers managed their complex medical needs. In response to Covid-19 pandemic, a paradigm shift occurred, necessitating a transition to telehealth as a safer and more accessible mode of healthcare delivery. Telehealth enabled them to receive medical care, consultations, and support remotely to reduce the need for physical presence in healthcare settings. The study assists in understanding the experiences, challenges, and sentiments of using telehealth services for caregivers of children with complex medical conditions (CMC) during the COVID-19 pandemic. It provides insights into how telehealth impacted their lives and the care of CMC, highlighting both the positive aspects and the challenges they encountered. This understanding is valuable in improving telehealth services, addressing the unique needs of CMC and their caregivers.
Methods
We recruited 12 participants from the SPAN Parent Advocacy Network who worked with parents of children with medical complexity (CMC). SPAN Network was founded in New Jersey by parents of children with special needs to empower and supports families. Also, the participants were parents of children with special needs. Interviews were conducted on Zoom, lasted approximately 45 minutes, and were audio recorded. Semi-structured, in-depth individual interviews were performed with each participant. Participants were asked about their perspectives on the efficiency of telehealth for CMC patients during the pandemic. The results were reported anonymously.
After capturing the data, we performed a thematic analysis to extract insights from the Zoom interview transcripts. This approach facilitated the identification of patterns and key insights. We performed data cleaning, which included the removal of stop words (i.e., words that do not express any meaning, such as is, a, the, he, them, etc.). Also, we eliminated words that were inherently part of the text's topic, such as “patient”, “telehealth” “provider” and “pandemic” to ensure a more focused analysis. Additionally, we performed word counting to identify the top 10 most frequently occurring words. Also, we identify the ten most common bigrams within the dataset. We used Python’s Natural Language Toolkit (NLTK) for data analysis. In this research project, we aimed to provide a comprehensive assessment of telehealth by reporting both its advantages (pros) and disadvantages (cons) as perceived and experienced by caregivers and supporters during the COVID-19 pandemic.
Results
The results reveal that the occurrence of words such as "understand," "access," "good," and "helpful" highlights the importance of enhancing telehealth services. Additionally, the persistent mention of "language access" highlights the significance of overcoming language barriers. In analyzing the sentiments within the interviews, the distribution is as follows:
Positive sentiment is expressed in approximately 29.1% of the content. Negative sentiment is present in around 8.8% . The majority of the content, approximately 62.2%, conveys a neutral sentiment. The following are the challenges presented by participants while using telehealth services during the pandemic:
- Lack of Technology Training: There was uncertainty about what to expect when transitioning to telehealth services during the pandemic. The absence of clear guidelines and prior experience with telehealth resulted in confusion regarding how to effectively utilize this technology during the pandemic. A participant mentioned “Families were not provided with information about what to expect in terms of telehealth services”.
- Language Barrier: The interviews emphasize the significant challenges caused by language barriers for non-English-speaking parents of children with complex medical needs. Besides, ensuring that individuals with hearing impairments receive the same level of care and information. This challenge extends to using medical terminologies when communicating with parents. As noted by one of the participants, “Once you have a child with special needs, you have to be a doctor, a lawyer, a scientist, so many things you have to do, and so many things you have to learn that just hearing the doctor use a slang term can throw a parent off and or having them use a term that's really professional level, can take a parent from understanding what we were just talking about to not feeling like you haven't even been in the conversation”.
- Telehealth Limitations: The telehealth has its constraints, especially when it comes to medical interventions requiring physical presence. Treatments and procedures simply cannot be conducted remotely, which may leave some families feeling that their specific needs are not met through telehealth. The parents did encounter physical and technical limitations when it comes to participating in telehealth and virtual services.
On the other hand, despite the challenges we have previously introduced by caregivers, there are also some benefits introduced that are associated with telehealth. First, it assists in accessing medical services by allowing parents to receive care from home. Second, prevent the spread of covid-19, reducing the risk of exposure to illnesses in crowded waiting rooms. Third, it is especially helpful in rural areas. Lastly, it offers comfort and convenience to individuals who are uncomfortable with leaving home or face-to-face interactions, encouraging open discussions about health concerns.
Conclusion
The challenges voiced by participants offer areas for action and improvement. The results of the study examine telehealth experiences during the COVID-19 pandemic, as expressed by caregivers of children with complex medical conditions (CMC). The study reveals a distribution of sentiments, with positive sentiments expressed in approximately 29.1% of the content, negative sentiment in around 8.8%, and the majority of content (approximately 62.2%) present a neutral sentiment. These findings emphasize the potential for enhancement in telehealth services. First, addressing the challenge of "Technology Training" is crucial. Clear guidelines and comprehensive training programs are needed to help caregivers and families transition effectively to telehealth services. Participants' comments, such as "Families were not provided with information about what to expect in terms of telehealth services," highlight the need for better education and support for users. Second, "Language Barrier" issues demand attention. Overcoming language barriers and ensuring that individuals with hearing impairments receive equitable care is essential. This includes the use of medical terminologies that are easily understood by caregivers. Third, the "Telehealth Limitations" requires developing guidelines for determining when in-person care is necessary and ensuring that telehealth services are not only accessible but also effective for all CMC caregivers.
Children with medical complexity (CMC) are children and youth having multiple health conditions that require extensive and specialized medical care and attention. The child of medical complexity aged 21 or below. They represent a unique and diverse patient group , ranging from congenital disorders and chronic illnesses to developmental disabilities and rare genetic conditions. Prior to the pandemic, CMC and their caregivers were having regular visits to healthcare facilities, where multiple healthcare providers managed their complex medical needs. In response to Covid-19 pandemic, a paradigm shift occurred, necessitating a transition to telehealth as a safer and more accessible mode of healthcare delivery. Telehealth enabled them to receive medical care, consultations, and support remotely to reduce the need for physical presence in healthcare settings. The study assists in understanding the experiences, challenges, and sentiments of using telehealth services for caregivers of children with complex medical conditions (CMC) during the COVID-19 pandemic. It provides insights into how telehealth impacted their lives and the care of CMC, highlighting both the positive aspects and the challenges they encountered. This understanding is valuable in improving telehealth services, addressing the unique needs of CMC and their caregivers.
Methods
We recruited 12 participants from the SPAN Parent Advocacy Network who worked with parents of children with medical complexity (CMC). SPAN Network was founded in New Jersey by parents of children with special needs to empower and supports families. Also, the participants were parents of children with special needs. Interviews were conducted on Zoom, lasted approximately 45 minutes, and were audio recorded. Semi-structured, in-depth individual interviews were performed with each participant. Participants were asked about their perspectives on the efficiency of telehealth for CMC patients during the pandemic. The results were reported anonymously.
After capturing the data, we performed a thematic analysis to extract insights from the Zoom interview transcripts. This approach facilitated the identification of patterns and key insights. We performed data cleaning, which included the removal of stop words (i.e., words that do not express any meaning, such as is, a, the, he, them, etc.). Also, we eliminated words that were inherently part of the text's topic, such as “patient”, “telehealth” “provider” and “pandemic” to ensure a more focused analysis. Additionally, we performed word counting to identify the top 10 most frequently occurring words. Also, we identify the ten most common bigrams within the dataset. We used Python’s Natural Language Toolkit (NLTK) for data analysis. In this research project, we aimed to provide a comprehensive assessment of telehealth by reporting both its advantages (pros) and disadvantages (cons) as perceived and experienced by caregivers and supporters during the COVID-19 pandemic.
Results
The results reveal that the occurrence of words such as "understand," "access," "good," and "helpful" highlights the importance of enhancing telehealth services. Additionally, the persistent mention of "language access" highlights the significance of overcoming language barriers. In analyzing the sentiments within the interviews, the distribution is as follows:
Positive sentiment is expressed in approximately 29.1% of the content. Negative sentiment is present in around 8.8% . The majority of the content, approximately 62.2%, conveys a neutral sentiment. The following are the challenges presented by participants while using telehealth services during the pandemic:
- Lack of Technology Training: There was uncertainty about what to expect when transitioning to telehealth services during the pandemic. The absence of clear guidelines and prior experience with telehealth resulted in confusion regarding how to effectively utilize this technology during the pandemic. A participant mentioned “Families were not provided with information about what to expect in terms of telehealth services”.
- Language Barrier: The interviews emphasize the significant challenges caused by language barriers for non-English-speaking parents of children with complex medical needs. Besides, ensuring that individuals with hearing impairments receive the same level of care and information. This challenge extends to using medical terminologies when communicating with parents. As noted by one of the participants, “Once you have a child with special needs, you have to be a doctor, a lawyer, a scientist, so many things you have to do, and so many things you have to learn that just hearing the doctor use a slang term can throw a parent off and or having them use a term that's really professional level, can take a parent from understanding what we were just talking about to not feeling like you haven't even been in the conversation”.
- Telehealth Limitations: The telehealth has its constraints, especially when it comes to medical interventions requiring physical presence. Treatments and procedures simply cannot be conducted remotely, which may leave some families feeling that their specific needs are not met through telehealth. The parents did encounter physical and technical limitations when it comes to participating in telehealth and virtual services.
On the other hand, despite the challenges we have previously introduced by caregivers, there are also some benefits introduced that are associated with telehealth. First, it assists in accessing medical services by allowing parents to receive care from home. Second, prevent the spread of covid-19, reducing the risk of exposure to illnesses in crowded waiting rooms. Third, it is especially helpful in rural areas. Lastly, it offers comfort and convenience to individuals who are uncomfortable with leaving home or face-to-face interactions, encouraging open discussions about health concerns.
Conclusion
The challenges voiced by participants offer areas for action and improvement. The results of the study examine telehealth experiences during the COVID-19 pandemic, as expressed by caregivers of children with complex medical conditions (CMC). The study reveals a distribution of sentiments, with positive sentiments expressed in approximately 29.1% of the content, negative sentiment in around 8.8%, and the majority of content (approximately 62.2%) present a neutral sentiment. These findings emphasize the potential for enhancement in telehealth services. First, addressing the challenge of "Technology Training" is crucial. Clear guidelines and comprehensive training programs are needed to help caregivers and families transition effectively to telehealth services. Participants' comments, such as "Families were not provided with information about what to expect in terms of telehealth services," highlight the need for better education and support for users. Second, "Language Barrier" issues demand attention. Overcoming language barriers and ensuring that individuals with hearing impairments receive equitable care is essential. This includes the use of medical terminologies that are easily understood by caregivers. Third, the "Telehealth Limitations" requires developing guidelines for determining when in-person care is necessary and ensuring that telehealth services are not only accessible but also effective for all CMC caregivers.
Event Type
Poster Presentation
TimeMonday, March 254:45pm - 6:15pm CDT
LocationSalon C
Digital Health
Simulation and Education
Hospital Environments
Medical and Drug Delivery Devices
Patient Safety Research and Initiatives