Experiences of patients, parents, and healthcare professionals in the process of transitioning from hospital to community after inpatient pediatric rehabilitation among children with special health care needs

Abstract

Purpose

Children with Special Health Care Needs (CSHCN) may experience disruptions in education due to extended hospitalizations. The purpose of this study was to describe how CSHCN experience educational supports during inpatient rehabilitation and identify the ongoing challenges when planning to return to school.

Materials and methods

Semi-structured focus groups were conducted with parents (n = 12), former patients (n = 20), and rehabilitation professionals (n = 8).

Results

Through qualitative thematic analysis based on descriptive phenomenology, we developed three themes: 1) Inpatient educational support such as instruction and schoolwork helped reduce the learning loss during hospitalization. However, these supports were sometimes complicated by lags in school approvals and challenges in coordination between systems. 2) Transition planning involved establishing necessary services to support CSHCN’s educational and healthcare needs at school re-entry. However, families reported limited information and guidance as key barriers. 3) Dynamic courses of school re-entry required continued support after discharge. The participants recommended that reassessment and adjustment of transition plans were often necessary to account for evolving developmental and educational needs but were not always received.

Conclusions

There is an ongoing need to improve communication between clinicians and educators, information for families, and long-term follow-up on the changing educational needs for CSHCN after rehabilitation.

IMPLICATIONS FOR REHABILITATION

• School re-entry after extended hospitalization is challenging for children with special health care needs (CSHCN) due to school disruption, social disconnection, and change in functional abilities.

• The hospital-to-school transition processes include inpatient educational programs during hospitalization, pre-discharge transition planning, and the subsequent implementation and adjustment of transition plans to facilitate individualized school re-entry.

• Key areas in need of improving school re-entry include coordination between the hospital and school about rehabilitation and educational goals and information provided to families about transition processes, particularly for newly acquired health conditions.

• A common need expressed by parents and CSHCN is to simplify and accelerate the process to establish services that support children’s educational and healthcare needs.

Keywords:

• School-age children
• qualitative methods
• acquired brain injuries
• disability
• special education
• transition planning
• individualized education plans
• 504 plans

Acknowledgments

NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.

Disclosure statement

The authors report there are no competing interests to declare.

Data availability statement

The data that support the findings will be available at the Inter-university Consortium for Political and Social Research in late 2025—12 months following the completion of the research project.

Notes

1 An IEP (Individualized Education Plan) is a legal document under United States law that lays out the program of special education services and supports that a student with disability needs to reach their educational goals. The Individuals with Disability Education Act (IDEA) mandates an IEP to be developed for each student who is eligible for special education.

2 In the United States, a 504 Plan, derived from Section 504 of the U.S. Rehabilitation Act, is a legally mandated document for students with disabilities. It delineates necessary accommodations to ensure these students have equal access to education. The plan addresses conditions that significantly impede daily activities. 504 plans are not part of special education.

Additional information

Funding

The contents of this manuscript were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number masked for review).