A Parent's Perspective on Systemic Gaps in Supporting Complex Pediatric Care at Home

Abstract

Children with complex medical needs often require substantial medical care, including at home, where family members perform many procedures typically reserved for licensed nurses. This article presents a caregivers’ perspective of navigating the healthcare system while managing her daughter's care following a diagnosis of Ataxia-Telangiectasia, a rare neurodegenerative disease. It reflects on the systemic gaps in how we prepare and support family caregivers, particularly regarding end-of-life discussions. This article highlights how caregivers are uniquely positioned to identify inefficiencies, safety concerns, and innovative solutions both in hospital and home settings, often before they are recognized by the larger healthcare system. Recommendations include establishing formal caregiver feedback systems, standardizing caregiver training, and developing values-based communication training for clinicians. By integrating caregivers into formal processes, healthcare systems can become more responsive to the needs of children with complex needs and their families.

Introduction

In the United States, over 4 million children (ages 0-17) have complex medical needs, with approximately 500,000 requiring at home healthcare services.^1,2 As a parent, hearing medical professionals refer to my daughter as a child with complex medical needs was challenging. However, it became clear that my daughter's diagnosis was rare, complex, and required a substantial level of at-home care. What also became clear was that our experience reflected a systemic issue in that families are expected to perform medical care at home without standardized systems of support or oversight.

My daughter was diagnosed at 18 months with ataxia-telangiectasia, a rare neurodegenerative condition. I was told there was no cure, no treatments to slow the disease progression, only symptom management. ³ At age 3, my daughter's immune system was compromised, requiring weekly subcutaneous immunoglobulin infusions. I was informed I would be administering these infusions at home, despite only having basic first aid skills. Yet after a brief training, I took on this responsibility with fear, but without hesitation. This was my first glimpse into how quickly parents become medical caregivers and how training impacts care delivery.

Over time, new symptoms appeared, which meant I acquired new home health responsibilities. I was quickly trained by either a nurse or vendor on how to perform these new procedures or use the new medical product.

At age 6, my daughter underwent a procedure for a gastronomy tube (G-Tube) placement, during which time it was discovered she had MALT lymphoma, a rare form of non-Hodgkin lymphoma. Six months into receiving treatment, she experienced severe GI distress and was placed on total parenteral nutrition (TPN) via a central line. Although intended to be temporary, this became a long-term care routine, requiring 12-h daily infusions for over 4 years. Additional symptoms arose, including respiratory concerns, low white blood cell counts, and progressive loss of independent mobility.

I learned to manage G-Tubes, set up TPN infusions, perform central line care, and use various infusion pumps and other electronic healthcare equipment. Our daily schedule included a minimum of 2 h of medical care, split evenly between morning and evening. I was particularly concerned about infection risk, especially central line associated infections (CLABSIs). While I was trained on sterile techniques and was hypervigilant in managing her care, I was aware that even those who strictly adhere to protocols may still be at risk. Fortunately, she never experienced one of these infections.

I became proficient in managing my daughter's care, even though I did not have a clinical background. I questioned whether these new responsibilities were something only a skilled nurse should be performing. Over time, I came to understand that allowing parents to become at-home medical providers was in fact accepted medical practice. The problem is not that parents perform these procedures, but the lack of standards and oversight for training and support.

I also came to realize there were gaps in preparing clinicians and family caregivers to engage in difficult conversations. When caring for my daughter, I focused on addressing symptoms as they arose. This reactive approach meant I was not focused on the “what-ifs.” While there are mental benefits to living in the moment, in retrospect, I would have benefited from meaningful conversations about potential outcomes, especially when it came to “end-of-life” discussions. While end-of-life considerations were always on my mind, I never openly discussed these with the care team. A palliative care reference was made once, but I wasn’t sure what this would offer and did not follow up.

At age 13, after a couple years of stability despite an unstable diagnosis, I rushed my daughter to the ER because she was having trouble breathing. Shortly after we arrived, she went into cardiac arrest. I watched the ER doctors resuscitate, intubate, and place her on a ventilator, and admit her to the pediatric intensive care unit.

I was scared, but remained hopeful that her stats would improve, and she would have another heroic story to share with her family and friends. However, I knew this time was different. This experience made me realize how unprepared I was to engage in an end-of-life discussion. I felt unprepared because this wasn’t part of the care planning repertoire. Or, maybe it was, and I missed that one opportunity with the palliative care doctor.

I felt I needed more ways to communicate, but I didn’t have them. I felt silenced during this time, as I was unable to truly speak about what was happening. I knew what was going to happen, but I couldn't grasp the words, and I certainly lost my confidence to talk with the nurses and doctors caring for her, including those we had known for many years. My daughter passed away in 2018, but reflecting on this experience, I have recognized many systemic gaps in how we prepare and support family caregivers.

Perspectives Practical

Despite fear and uncertainty, family caregivers can become empowered if they receive training and recognition as a contributor to the care team. Talking with other families revealed that standards for caregiving training and support did not exist. While I often felt fearful of learning new medical procedures, I felt fortunate to have a care team that acknowledged me as an expert in my child's care and for the training I received. Not only did this allow me to become proficient, but it also allowed me to advocate for my daughter's needs, including the type of at-home care she needed.

We quickly realized the availability and the quality of training provided to at-home nurses was inconsistent, revealing further gaps in training standards to support families with at-home medical care. I felt the nurses lacked experience caring for pediatric patients with complex medical needs. We often trained them ourselves, and while this resulted in a positive experience, this placed a paradoxical responsibility on our family.

Over the years, I met many families from across the United States going through similar challenges for varied diagnoses. What stood out was the variability of our experiences, including training provided to caregivers, the availability and quality of at-home nursing services, access to medical supplies, comfort with performing procedures, and the emotional, psychological, and financial support. These inconsistencies reflect the system-based issues in how families with complex pediatric care needs are supported.^4,5

When talking with other families, we often discussed quality improvement ideas for medical products, communication processes, and medical procedures. Unfortunately, my experience was there were no structured ways for our insights to inform care delivery, product design or healthcare policies.

Caregivers of pediatric patients with complex needs are not just an extension of the patient, they manage care, watch for complications, perform procedures, and coordinate care across multiple specialty providers. They are uniquely positioned to identify inefficiencies, safety concerns, and innovative solutions both in hospital and home settings. While these inconsistencies may appear to simply be a matter of individual experience, I believe they reflect a systematic gap in how we prepare, support, and listen to caregivers.

Caregivers and clinicians could also benefit from training in how to engage in difficult conversations, particularly end-of-life planning.^6–8 These discussions should not wait until critical moments, rather they should be integrated into care planning over time, based on patients and caregivers readiness and preferences.

Recommendations and Conclusions

My families experience, along with the stories of other families, demonstrates that consistent standards need to be established to better prepare and sustain caregivers’ roles in delivering at-home medical care. To bridge this gap, and better support children with complex medical needs and their family, healthcare institutions should (i) establish formal caregiver feedback systems, (ii) standardize caregiver training, and (iii) develop values-based communication training.

To improve patient safety and care quality, healthcare systems should create structured feedback mechanisms that allow families to share insights on medical devices, communication processes, and medical procedures. These insights can identify inefficiencies, safety concerns, and opportunities long before they are recognized by the larger healthcare system.

To ensure consistent at-home care, caregiver training should be standardized across geography, provider, and diagnosis. Standardized training can help families gain the skills and confidence needed to manage complex medical care at home, and advocate for consistent at-home nursing services.

To improve quality of care, clinicians should receive training on integrating values-based communication into routine care delivery rather than reserved for critical care moments. Integrating this into routine discussions may better prepare patients and caregivers for possible outcomes and help them align care with patients’ goals and facilitate end-of-life discussions.

These recommendations align with Curran et al's proposal for policy and practice standards that center families and clinicians as partners in care. ⁹ They call for dedicated nurses to coordinate care and training, outreach strategies to strengthen skills for those caring for children with complex conditions, comprehensive discharge planning co-developed by family and care teams, and centralized information repositories to support communication and continuity. ⁹ If these standards were implemented, my family and other would have benefited from more coordinated care during critical transitions. These system-level changes not only support families but recognize them as essential contributors to care delivery.

My daughter lived with a rare complex medical condition. But she was not her diagnosis, she was a resilient, empathetic, and intellectually curious individual. Despite me taking on a role as a “medical” mom, she simply saw me as her mom, which is how it should be. I was able to support her because of the training and resources I was provided. Although we received exceptional care, there are many areas of the healthcare system that need to be improved. Caregivers need to be seen as contributors with unique experiences. If we rethink our healthcare system as one that supports active engagement of patients and caregivers through training, communication, and feedback mechanisms, we will be building systems that deliver care not only based on medical expertise, but care that is responsive to the needs of those it serves, both patients and their caregivers.