CHAPTER 85: Psychosocial Considerations in the Pediatric Transplant Recipient

INTRODUCTION

End-stage renal disease (ESRD) and kidney transplantation can have a significant impact on a patient and the patient’s family. Detailed knowledge of the family dynamic, family resources, and identified needs can help a transplant team work together with the family to ensure the success of transplantation. This chapter details areas of exploration when assessing a patient for transplant. This information should be obtained prior to transplant and should be assessed in the posttransplant period as well to monitor for changes. The involvement of the patient in these discussions must be based on the patient’s age and developmental status.

• Identifying patients, parents, guardians, and or caregivers that will be involved in the child’s pretransplant and posttransplant care

  • Obtain names, relationship, and contact information

  • Identity patient and caregivers’ preferred language, include any physical or cognitive barriers that affect the ability of the patient, parents, guardians to communicate

  • Identify literacy of both patient and caregivers

• Confirm citizenship status

  • If immigration barriers exist, provide appropriate immigration and legal aid resources

• Assess living situation

  • With whom does the patient reside?

  • Siblings: names, ages, and potential child care needs

  • Where and in what type of home does the patient reside?

  • Does the patient/family receive any housing assistance?

  • Is the current living situation a barrier to positive health status?

  • Are there any housing barriers? If so, identify and refer to appropriate agencies for additional resources

• Mobility status, activities of daily living, and physical rehabilitation

  • Assess level of assistance and adequate support or services in place to provide assistance with age-appropriate activities of daily living

  • Is the patient currently requiring physical, speech, or occupational therapy, home care including visiting nurse services, or home attendant service?

  • If so, obtain name and contact information of the provider(s) and agency, and services provided and number of hours received

  • Obtain consent to communicate with providers

  • If additional support is needed, assist patient and caregivers with identifying needs and placing appropriate referrals

• Assess financial status

  • Assess primary and secondary insurance information

  • Assess prescription drug coverage

  • Obtain pharmacy information

  • Is the patient receiving any social services, including Medicaid, Supplemental Nutrition Assistance Program (SNAP) Benefits, Supplemental Security Income (SSI), Social Security Disability (SSD), Special Supplemental Nutrition Program for Women, Infants, and Children (WIC)?

  • Educate parents, guardians on available social service benefits and provide contact information to Department of Social Services, Hospital Medicaid office, and Social Security Offices to inquire about eligibility

• Vocational, educational, employment status

  • Is the child in school or home schooled? What is the child’s present grade?

  • Type of school (day care, preschool, primary, high school, college)

  • Name, location, and phone number to the school

  • Identify

    • School guidance counselor

    • School nurse

    • School-based support team

  • Assess school performance

    • Is there a 504/Individualized Education Program in place?

    • Has the school expressed concerns about the patient’s school performance?

    • Does the parent/guardian have concerns about the patient’s school performance?

    • Have learning disabilities been identified?

    • Is the school aware of the patient’s medical needs?

    • Does the ...