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Supportive Care in Cancer

, Volume 27, Issue 2, pp 623–630 | Cite as

“Improving to where?”: treatment-related health risks and perceptions of the future among adolescents and young adults after hematopoietic cell transplantation

  • Eden R. BrauerEmail author
  • Huibrie C. Pieters
  • Patricia A. Ganz
  • Wendy Landier
  • Carol Pavlish
  • MarySue V. Heilemann
Original Article
  • 88 Downloads

Abstract

Purpose

Despite the prevalence of hematological malignancies in early adulthood, very little is known about hematopoietic cell transplantation among adolescents and young adults, and even less is known about their transition from the completion of therapy to early survivorship. In this qualitative study, we investigated the impact of the cancer experience on sense of life potential and perception of the future from the perspectives of adolescents and young adults after hematopoietic cell transplantation.

Methods

In-depth interviews were conducted with adolescents and young adults who underwent allogeneic or autologous hematopoietic cell transplantation between the ages of 15–29 years and were 6–60 months post-treatment. Interview transcripts were systematically coded based on constructivist grounded theory.

Results

Eighteen adolescents and young adults participated and described how they came to understand the lifelong, chronic nature of cancer survivorship. “Improving to where?” was a question raised in the post-treatment period that reflected participants’ confusion about the goals of treatment and expectations for survivorship. Participants reported bracing themselves for “something bad” to deal with the uncertainty of medical and psychosocial effects of treatment. They struggled to move forward with their lives given their substantial health risks and found it necessary to “roll with the punches” in order to adjust to this new reality.

Conclusions

Adolescents and young adults who undergo hematopoietic cell transplantation are at significant risk for long-term and late effects in survivorship. Age-appropriate interventions are needed to support these survivors as they manage their fears about the future while enhancing health and well-being.

Keywords

Cancer Survivorship Adolescents Young adults Transplantation Late effects 

Notes

Acknowledgements

We acknowledge the support of Dr. Julie Wolfson, Dr. Saro Armenian, Dr. Stephen Forman, Lindsey Hageman, Alysia Bosworth, and Laura Gustafson.

Funding

This study was supported by a dissertation research grant from the Oncology Nursing Society (ONS)/ONS Foundation and in part by a NIH/NINR Ruth L. Kirschstein National Research Service Award (NRSA) Institutional Research Training Grant [T32 NR 07077].

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

All procedures performed in this study which involved human participants were in accordance with the ethical standards of the institutional national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.UCLA Jonsson Comprehensive Cancer CenterLos AngelesUSA
  2. 2.UCLA School of NursingLos AngelesUSA
  3. 3.UCLA Fielding School of Public Health, UCLA David Geffen School of MedicineUCLA Jonsson Comprehensive Cancer CenterLos AngelesUSA
  4. 4.University of Alabama at Birmingham Schools of Medicine and NursingBirminghamUSA
  5. 5.UCLA School of NursingLos AngelesUSA
  6. 6.UCLA School of NursingLos AngelesUSA

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