School Reintegration After Pediatric Hematopoietic Stem Cell Transplant

School Reintegration After Pediatric Hematopoietic Stem Cell Transplant: Experiences of Children, Parents, Teachers and Providers

This is a qualitative study that will explore the experiences of school reentry following Hematopoietic Stem Cell Transplant (HSCT) in children ages 10-16 years of age, their parents, teachers and primary PBMT(Pediatric Bone Marrow Transplant) providers. This study will involve four focus groups: children post -transplant, parents, teachers and PBMT providers in an effort to understand the successes and challenges of returning to school following HSCT.

Study Overview

• Status: Withdrawn
• Conditions: Unspecified Complication of Bone Marrow Transplant

Detailed Description

This is a qualitative descriptive study using purposive sampling to form the four focus groups to encourage diversity in diagnosis (immunodeficiency, malignancy, bone marrow failure and inherited metabolic diseases), age and location. Each group will participate via conference call due to difference in location. There will be semi-structured questions for each group but also allow flexibility by participants themselves.

• Study Type: Observational

Contacts and Locations

Study Locations

• United States
  • North Carolina
    • Durham, North Carolina, United States, 27705
      • Duke University Health Systems

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 10 years to 16 years (Child)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Children transplanted in the PBMT (Pediatric Bone Marrow Transplant) program at DUMC (Duke University Medical Center) in the past 5 years for allogeneic HSCT to include diagnoses for malignancy, immunodeficiency, bone marrow failure and inherited metabolic disease. They must have previously attended school prior to transplant.

Description

Inclusion Criteria:

• Children transplanted in the PBMT program at DUMC in the past 5 years for allogeneic HSCT to include diagnoses for malignancy, immunodeficiency, bone marrow failure and inherited metabolic disease. They must have previously attended school prior to transplant

Exclusion Criteria:

• Autologous transplants
• Significant developmental delays that would impair ability to communicate
• Inability to get full team (child, parent, teacher, provider) to participate
• Non-English speaking

Study Plan

How is the study designed?

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort
Children post-HSCT; Children post-HSCT age 10-16 yrs of age who had allogeneic transplant who are within 5 years of transplant and returned to school in past 12-24 months after previously attending school pre-transplant
Parents of children post-HSCT; Parents of children post-HSCT (children in focus group) will participate in focus group with other parents to discuss the challenges and successes of their child returning to school following HSCT.
Teachers of children post-HSCT; Teachers of children post- HSCT (children in focus group) will participate in focus group with other teachers to discuss the challenges and successes of children returning to school post HSCT
PBMT provider of child post-HSCT; PBMT provider of child-post HSCT (child in focus group) will participate in in focus group with other PBMT providers to discuss the successes and challenges of coordinating school reentry in child post-HSCT

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Psychosocial issues	Psychosocial issues related to school reentry following pediatric hematopoietic stem cell transplant (HSCT) as gathered from children's, parent's, teacher's and health care provider's perspectives as obtained during focus group discussions.	90 minutes
Cultural and environmental issues	Cultural and environmental issues (ie location, resources) issues related to school reentry following pediatric hematopoietic stem cell transplant (HSCT) gathered from the children's, parent's, teacher's and health care provider's perspectives as obtained during focus group discussions.	90 minutes

Collaborators and Investigators

• Sponsor: Duke University
• Investigators: Principal Investigator: Susan J Wood, MN, DUMC

Study record dates

Study Major Dates

• Study Start: January 1, 2014
• Primary Completion (Actual): February 1, 2015
• Study Completion (Actual): February 1, 2015

Study Registration Dates

• First Submitted: January 27, 2014
• First Submitted That Met QC Criteria: January 30, 2014
• First Posted (Estimate): February 3, 2014

Study Record Updates

• Last Update Posted (Estimate): February 4, 2015
• Last Update Submitted That Met QC Criteria: February 2, 2015
• Last Verified: February 1, 2015

More Information

Terms related to this study

• Keywords: School Reentry after pediatric HSCT
• Other Study ID Numbers: Pro00047417