Exploring the information needs of adolescents and their parents throughout the kidney transplant continuum

Abstract

Context: Adolescents are at higher risk for organ loss than are all other age groups, but no studies have been conducted to examine the specific information needs of adolescents. A better understanding of adolescents' information needs is essential for developing programs tailored to their unique requirements.

Objective: To explore information needs of adolescents who have undergone kidney transplantation in order to inform development of an education program.

Design: A qualitative descriptive design was used. Focus groups (n = 2) were conducted by using a semistructured interview guide. Transcribed data were organized into categories that reflected emerging themes by using simple content analysis.

Participants and setting: A convenience sample of 8 adolescents (50% female) who varied in age, donor type, and time since transplantation were recruited from a large Canadian tertiary care pediatric center.

Results: Adolescents articulated that the process of undergoing kidney transplant was very stressful and affected all aspects of their lives. In particular, adolescents identified 4 main stressors: changes in body image, wanting to be normal, pain, and breakdown in communication processes. The 2 strategies that assisted adolescents in coping with these stressors were (1) gaining knowledge about the transplantation process and (2) experiencing understanding through social support. They wanted information provided to them gradually throughout the transplant experience with choices given as to how they receive the information.

Conclusion: Adolescents were united in their call for information, self-management strategies, and meaningful social support to better manage their kidney transplant and prepare for transition to adult health care.