https://doi.org/10.1177/1049732318800674
Qualitative Health Research
2019, Vol. 29(3) 404–417
© The Author(s) 2018
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DOI: 10.1177/1049732318800674
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Research Article
The National Cancer Institute (NCI; 2014a) considers a
person a cancer survivor “from the time of diagnosis,
through the balance of his or her life.” They argue that
family members are “impacted by the survivorship experi-
ence” as well. Young adult cancer survivors (YACSs; that
is, those diagnosed between the ages of 18 years and 39
years; Adolescent and Young Adult Oncology Progress
Review Group [AYAOPRG], 2006) and their families face
unique challenges along the cancer trajectory. However,
little attention has been paid to how the cancer experience
can transform the lives of both survivors and family in
potentially positive ways, particularly regarding their per-
spectives on overall health and wellness as they enter their
posttreatment lives. This study explores how cancer survi-
vorship in young adulthood can be a transformational
health experience for both YACSs and their families.
Literature Review
Cancer in Young Adults
Approximately 70,000 young adults in the United States
are diagnosed with cancer annually (NCI, 2014b). Not
only has cancer remained young adults’ leading cause of
disease-related death (NCI, 2014b), but this population
has also long demonstrated less improvement in survival
rates than pediatric and older adult patients (Albritton,
Barr, & Bleyer, 2009). The lack of change in YACS mor-
tality rates and other negative disease-related outcomes
led NCI to designate YACSs as a distinct group that expe-
riences unique challenges during and following primary
treatment (AYAOPRG, 2006). Some of these complica-
tions include comparatively limited and restricted access
to health care and insurance coverage, poorer representa-
tion in clinical trials, lower awareness of prevention and
early detection, and lengthier delays in diagnosis partially
due to health-related invulnerability (AYAOPRG, 2006;
800674QHR XX X 10.1177/1049732318800674Qualitative Health ResearchHead and Iannarino
research-article 2018
1
Indiana University–Purdue University Indianapolis, Indianapolis,
Indiana, USA
2
University of Michigan–Dearborn, Dearborn, Michigan, USA
Corresponding Author:
Katharine J. Head, Department of Communication Studies, Indiana
University–Purdue University Indianapolis, 307C Cavanaugh Hall,
Indianapolis, IN 46202, USA.
Email: headkj@iupui.edu
“It Changed Our Outlook on How
We Want to Live”: Cancer as a
Transformative Health Experience
for Young Adult Survivors and Their
Family Members
Katharine J. Head
1
and Nicholas T. Iannarino
2
Abstract
Although young adult cancer survivors (YACSs) and their families face unique psychosocial and health-related
challenges related to cancer, little is known about how the illness experience of cancer may positively transform their
mental, physical, and social well-being following primary treatment. We conducted individual qualitative interviews
with 30 YACSs and 21 of their family members. Participants described positive transformations as (a) perspective
shifts on health and risk, (b) behavior changes toward more proactive healthy living, and (c) opportunities for more
open communication about wellness. Few participants reported little to no transformation based on a fatalistic view
of their diagnosis. Our findings illuminate important implications for health promotion and support in this population,
including the role health care providers can play following primary treatment. We also discuss how YACSs can serve
as important advocates for others and the need for more work exploring how and why positive illness transformations
take place.
Keywords
young adult; illness transformation; qualitative interviews; family support; United States