BACKGROUND: The goal of pediatric rehabilitation is to improve functioning and independence so children and adolescents can live full lives in the community. However, there is a profound lack of research investigating the long-term outcomes of medical rehabilitation in young people. School functioning is a particularly vital component of community integration and an important part of a child’s quality of life. Prior research on the long-term implications for health-related quality of life for young people who experience specific health conditions such as cancer, cerebral palsy, or brain injury suggest that children and adolescents face significant psychosocial problems when returning to school following hospitalization. Academic functioning is consistently lower among childhood cancer survivors compared to age-matched, healthy peers. Prolonged absences and grade repetition can also disrupt friendships and increase social isolation among children with cognitive and physical impairments. Ultimately, educational attainment positively affects psychosocial outcomes in adulthood such as employment, relationship formation, and socioeconomic status.
In 2015, the investigators conducted a pilot study at a pediatric rehabilitation hospital to assess the feasibility of identifying a retrospective cohort of school-age children who returned to the community after inpatient rehabilitation using hospital data linked to longitudinal educational data collected by the New Jersey Department of Education. A cohort of 602 young people was identified in this ongoing study and 100 families consented to the study their school data to date. The proposed project aims to expand the initial cohort using the methodology developed by the research team and engage former patients and their families to identify the school experiences and processes that affect long-term psychosocial functioning and quality of life.
METHODOLOGY: This study will use a mixed methods design to gather quantitative and qualitative data to address the aims of the proposed project. Specifically, the proposed project will use a convergent parallel design to integrate information from the following study arms:
Phase 1: Using methodology developed from the pilot work of the Kessler Foundation researchers and the hospital collaborators, the team will expand the retrospective cohort of former pediatric inpatients identified from hospital data. Former patients and their families will be contacted by letter and administered informed consent to allow the research team to obtain their longitudinal school outcome data. Quantitative analysis will be used to provide descriptive statistics and time-series analysis for panel data will be used to test associations between key covariates and outcomes.
Phase 2: A sub-sample of participants (parents and former patients) will be recruited to participate in focus groups to obtain in-depth qualitative information on the choices, motivations, strategies, and processes experienced during return to school.
Phase 3: Using the constructs identified through the linked administrative data on school outcomes and the processes involved in school re-entry, the team will design and test a semi-structured interview for use in a prospective follow-up after pediatric inpatient rehabilitation to assess long-term community integration and health-related quality of life.
IMPACT: This study will provide vital information about the most important aspect of community reintegration to children and adolescents with chronic impairments—school functioning. The results of this project will allow researchers to identify groups at risk for adverse outcomes and the important processes delineated by participants that shaped school re-entry, and provide data for the long-term assessment of rehabilitation outcomes in this under-researched population. Information from this study will also be used to develop guidelines that will inform resource allocation for school services, as wel