With the onset of Covid19, community-based services have been impacted. Your client is a 7-year-old boy named Jason who is on a home ventilator for muscular dystrophy, uses an electric wheelchair and a variety of lifts for activities of daily living, and receives most of his nutrition through a permanent g-tube. You have been caring for Jason with home visiting for the last year, performing a range of responsibilities including assistance with suctioning as needed, ongoing assessment, and coordination of services. Jason’s family express concern about how they should make decisions about care and consultations that should be happening during this time. In particular, they are concerned about:

• Jason’s wheelchair has begun to lose power quickly and the battery pack heats up so that they are worried it will even start a fire if something combustible falls onto it by accident
• Jason and his family previously received consistent assistance daily from a PSW, but with the onset of Covid19, they no longer have one worker assigned to them. Instead their service schedule is no longer daily (once or twice per week instead) and almost every visit is performed by different caregivers.
• Jason is scheduled for an MRI in 2 weeks to monitor lung scarring from multiple previous bouts of pneumonia. His parents called the diagnostic department of the hospital and were told they were continuing to keep MRI appointments, but they are asking you if they should keep his appointment given his medical vulnerability
• Jason’s mom shares with you that she is “bone-weary” and “doesn’t know how to go on” with the very heavy added workload. She appears pale and her eyes are teary as she shares this with you.
• Jason was due to have his g-tube changed 3 weeks ago but the doctor’s office called to say they are not doing non-urgent procedures. Jason’s dad is concerned they may run into trouble and isn’t sure if this is right.
• Questions

1. Describe some of the tasks of the primary caregiver in relation to this medically complex child.
2. Identify 3 gaps in our current healthcare system when dealing with children medically complexity.
3. How would you modify your assessment when caring for this child with medical complexity?
4. Discuss at least three methods to improve communication among the IPP team.

ANSWER

Navigating Challenges in Caring for a Medically Complex Child During Covid-19

The Covid-19 pandemic has brought forth unprecedented challenges for families with medically complex children, such as 7-year-old Jason, who relies on a home ventilator for muscular dystrophy. As a primary caregiver, it is essential to address the unique concerns and gaps in our healthcare system while ensuring the well-being of Jason and his family. This essay explores the tasks of the primary caregiver, identifies gaps in the healthcare system, suggests modifications in assessment, and discusses methods to improve communication among the Interprofessional Practice and Patient (IPP) team.

Tasks of the Primary Caregiver

Caring for a medically complex child like Jason involves multifaceted tasks. The primary caregiver plays a crucial role in:

Medical Management: Ensuring proper functioning of medical equipment, administering medications, and addressing emergent medical needs, such as suctioning, to maintain stability and prevent complications.

Coordination of Services: Facilitating communication and collaboration among healthcare providers, therapists, and social services to ensure comprehensive care and timely interventions.

Daily Living Assistance: Assisting with activities of daily living, including transfers, hygiene, and nutrition, while adapting routines to accommodate Jason’s needs.

Emotional Support:Providing emotional support to both the child and family members, addressing their concerns and helping them cope with the challenges of a medically complex condition.

Gaps in Healthcare System for Children with Medical Complexity

The current healthcare system reveals several gaps when dealing with children with medical complexity:

Inconsistent Caregiver Support: Reduction in personal support worker (PSW) visits and frequent changes in caregivers disrupt continuity of care and compromise the quality of assistance needed by families like Jason’s.

Access to Medical Procedures: The postponement of non-urgent medical procedures, such as g-tube changes, raises concerns about potential complications and hinders the child’s well-being.

Communication and Decision-making: Lack of clear guidelines and communication regarding medical appointments, treatments, and changes in care during the pandemic leaves families uncertain and anxious about making informed decisions.

Modified Assessment for Medically Complex Children

When caring for a child like Jason, a modified assessment approach is essential:

Holistic Assessment: Conduct a thorough assessment that encompasses physical, emotional, and social aspects of Jason’s health. Consider the impact of the pandemic on family dynamics and mental well-being.

Telehealth Integration: Incorporate telehealth visits for routine follow-ups and assessments, allowing families to receive medical guidance while minimizing exposure to healthcare settings.

Risk Evaluation: Evaluate potential risks, such as the safety of medical equipment and the impact of delays in procedures, to provide informed recommendations and interventions.

Methods to Improve IPP Team Communication

Effective communication among the IPP team is crucial for comprehensive care:

Regular Meetings: Schedule regular virtual meetings involving all members of the IPP team, including caregivers, physicians, therapists, and social workers, to discuss care plans, address concerns, and ensure alignment of goals.

Shared Documentation: Utilize a shared electronic platform for documenting care plans, appointments, and interventions, allowing real-time updates and ensuring all team members are informed.

Designated Liaison: Appoint a designated liaison within the IPP team who serves as the point of contact for families, streamlining communication and providing a single source of information.

In conclusion, caring for a medically complex child like Jason during the Covid-19 pandemic requires a comprehensive approach that addresses the unique challenges faced by both the child and their family. By recognizing the tasks of the primary caregiver, identifying gaps in the healthcare system, modifying assessment techniques, and enhancing communication among the IPP team, we can strive to provide the best possible care for these vulnerable individuals.