Commentary: Current State of Home Health in Children with Medical Complexity

Megan Quinn, Teresa Kodak

MSN, APRN – PC

MSN, APRN-FPA, FNP-C, CWON

Abstract

Current State of Home Health in Children with Medical Complexity, published in 2024, addressed several important aspects of barriers to care in children with medical complexity (CMC).  This article specified three themes which were chosen due to their frequent appearances in the available research: lack of resources, financial implications, and patient and family well-being.  This article serves as a commentary of the aforementioned article.  Social risks and language barriers also pose a threat to success in home health, though the research in pediatrics is lacking. Reimbursement of nursing continues to be a theme, and the concept of state-to-state variances further affecting quality home health care is discussed.  Health Policy is presented as an entirely new theme with a significant impact on home care delivery.  An overall need for future research is paramount in this population as the number of CMC who need care in the home continues to grow due to health care improvements over time.

Caring for children with medical complexities (CMC) continues to be a difficult path for both healthcare providers and the caregivers of these children. Lack of resources, financial implications and patient and family well-being, the three themes discussed in Current State of Home Health in Children with Medical Complexity, have continued to evolve and change since its publication. Additionally, Health Policy has emerged as a theme in that it provides barriers to proper home care. As the healthcare landscape changes and grows, reflection on the changes within these roadblocks was paramount to remain up to date on the current issues.  Though there is currently more research, it is worth highlighting that this area of healthcare is largely unexplored and in need of further discovery in order to start addressing this problem wholly.

Lack of Resources

Lack of resources was a main barrier to providing adequate care for children with medical complexities. The paper discussed both healthcare and financial resources in detail, however, failed to explore social risks such as food insecurity, housing instability, and family financial strain as additional indications that could cause difficulty. A recent paper examined medically complex adults and the effect that increased social risk played on healthcare utilization. It was found that those with higher social risk factors had a significantly higher outpatient and inpatient healthcare use in the period of a year even after clinical and demographic differences were accounted for¹. Examining social risk factors of the families of children with medical complexities could indicate similar results.  Performing a similar study in pediatric patients  could be a future step to determine the role that social risks play in medically complex pediatric patients.

Financial Implications

Funding remains a concern across the entire healthcare spectrum. Nurses are not the only segment of the healthcare infrastructure that requires frequent assessment of funding. The 2022 Emory Business Case for Nursing Summit introduced reforms that could help with determining nursing value. While there were multiple discussion points that arose from this summit, designing and testing nurse-informed compensation models stood out as an interesting topic². This could allow home nurses to design a pay model based on the care they are providing to medically complex children, allowing variation from the traditional care provided in the home. It would be a benefit to explore this option moving forward.

Another highly important issue not addressed in the aforementioned manuscript is that of state-to-state variances in relation to healthcare utilization and number of medically complex children residing in the state.  Vast variances exist for both the ability to fulfill a patient’s need for home health nursing and the number of hours available for that patient³.  Rasooly et al. (2020) cite several hypotheses to explain such variance, such as scope-of-practice regulation differences, payer coverage of services, and referral variances.  The data is both challenging to collect and nuanced, and therefore does not yet exist. Further examination of this topic could highlight more immediate needs.

Patient and Family Well-Being

Familial support played a large role in the care of medically complex children at home. As the home health nursing shortage continues on, the burden placed on families is growing. In a subset of families where English was not the preferred language, one study looked at both caregivers and physician opinion 48-72 hours after discharge. The authors found that families felt uncomfortable asking questions of the physician during discharge education due to the language barrier⁴. Additionally, both families and physicians felt there were challenges in utilizing interpreters during the discharge process⁴. Although we did not address this point in our previous paper, this patient population in specific deserves consideration as we continue to investigate not only familial well-being, but also how delayed discharge and re-admittance to the hospital impact our already limited resources.

Additionally, the role of psychological support was not explored in the original paper. Those who work in healthcare understand the importance of psychological support for not only our patients but also those caring for patients. Being able to provide psychological support for these patients in a way that does not burden family members is paramount. One paper found that having psychological support in the same physical space as children’s medical appointments provided the highest level of use⁵. Additionally, this same paper found that more evaluation regarding outcomes of providing this care would be beneficial for patients and families⁵. Lack of psychological support is not a new need, but does require a different scrutiny in patients with medical complexities and their caregivers.

Health Policy

Another significant barrier is the complex political system that dictates healthcare delivery.  Access to home health care is federally mandated, yet national standards for home health care in pediatric patients do not exist⁶. In our previous paper, we advocated for increasing the pool of nurses available to pediatric patients, however it is essential to know the care delivered meets a certain standard.  Foster et al. highlight some surprising information: pediatric specific data does not exist within the Centers for Medicare and Medicaid Services’ Home Health Compare, and national surveys on home health care do not usually include children⁶. Without this data we can form no standards for the delivery of pediatric home care which makes it challenging to understand the impact this care has on children with medical complexity. Pediatric providers should advocate for accessible health care in the home that also meets national standards.  Families of children with complex health needs can help the cause by providing valuable insight for providers and policy makers to help improve the structure of care⁷.

As we re-examined the identified three main barriers to caring for children with special healthcare needs, the evidence and literature surrounding these barriers continues to grow and new areas of interest present themselves. The evolution of lack of resources, funding, and familial support show that these issues do not remain stagnant over time. Health policy, a new theme identified in the barriers to home health care, cannot be overlooked in this matter. It is critical to ensure the proper resources are in place as well as set standards for delivery of health care. Frequent reassessment of these barriers indicate that the opportunities for future research and education is paramount to continue to support this population.

References

1. Tucher E.L, Steele A.L, Uratsu C.S, et al. Social Risks and Health Care Use in Medically Complex Patients. JAMA Netw Open. 2024; 7(9): e2435199. doi:10.1001/jamanetworkopen.2024.35199.
2. Pappas S, Brosius W, Hayes R, et al. Maximizing the potential value of the nursing workforce. The Business Case for Nursing: Proceedings of a 2022 Summit August 2023 doi: https://doi.org/10.1016/j.outlook. 2023.102016.
3. Rasooly I.R, Shultz J, Geuvara J.P, et al. State Variation in Posthospital Home Nursing for Commercially Insured Medically Complex Children. Pediatrics August 2020; 146(2): e20192465. https://doi.org/10.1542/peds.2019-2465.
4. Squires S, Hoang K, Grajales L, et al. Improving Hospital-to-Home for Medically Complex Children: Views from Spanish-Speaking Caregivers. Hosp Pediatr November 2024; 14 (11): 928–936.
5. Marshall K, Pincus H, Tesson S, et al. Integrated psychological care in pediatric hospital settings for children with complex chronic illness and their families: a systematic review. Psychology and Health. May 2022; 39:4, 452-478. Doi: 10.1080/08870446.2022.2072843.
6. Foster CC, Agrawal RK, & Davis MM. (2019). Home Health Care for children with medical complexity: Workforce gaps, policy, and Future Directions. Health Affairs, 38(6), 987–993. https://doi.org/10.1377/hlthaff.2018.05531.
7. Houlihan BV, Coleman C, Kuo DZ, et al. What Families of Children with Medical Complexity Say They Need: Humanism in Care Delivery Change. Pediatrics January 2024; 153 (Supplement 1): e2023063424F. 10.1542/peds.2023-063424F.