Illness Uncertainties Tied to Developmental Tasks Among Young Adult Survivors of Hematologic Cancers

Abstract

Purpose: Young adulthood is a period of building autonomy, relationships, and careers. Experiencing cancer as a young adult (YA) is an ''off-time'' event in the normative adult life cycle and may interrupt age-specific goals. The majority of prior research on illness uncertainty centers on medical concerns about recurrence or mortality. The current study identifies how YA survivors of hematologic cancers, an understudied group, experience illness uncertainties related to the developmental tasks of young adulthood. Methods: This is a qualitative study of 53 YA hematologic cancer survivors, ages 20-39. Participants completed hour-long semistructured interviews about psychological, social, and treatment-related aspects of their cancer experience. Interviews were transcribed and coded using an abductive approach to qualitative analysis. Results: Most participants (80%) spontaneously described at least one illness uncertainty tied to developmental tasks. Fertility was the most commonly reported type of uncertainty (55%), with more women than men reporting it, followed by family and intimate relationships (43%), peers and social life (36%), and academic or career goals (26%). These uncertainties were described with reference to the off-time nature of illness. Example excerpts are provided and interpreted. Conclusions: These findings have the potential to advance our understanding of the cancer experience of YA survivors by expanding on the notion of illness uncertainty in this population. Given the extent to which uncertainties related to developmental tasks were reported, tailored interventions targeting these concerns may improve quality of life among YAs with hematologic cancers.

The experience of financial stress among emerging adult cancer survivors

“…The "unique challenge" 10 of financial hardships for EA cancer survivors is embedded in the way in which cancer-related financial stress intersects with developmental tasks. These include accomplishing relationship and career goals, 13,15,21 accepting the possibility of an uncertain future, 22 and solidifying beliefs about the self as an independent adult agent. 34 EA cancer survivors who have fewer tangible resources, less flexibility to accept goal change, and stronger visions of the self as an independent adult agent may be at greater risk to experience psychological distress as a result of cancer-related financial stress.…”

“…The study is a secondary analysis of data from two interview studies of young adults with cancer: a study of health-related quality of life in testicular cancer 21 and a study of the psychosocial adaptation among young adults with hematologic cancer. 22…”

“…Fertility preservation is a focal stressor for many young adults with cancer, particularly if the treatment is likely to impair fertility. 22,27 Participants mentioned how the cost of medical care extends to the coverage of fertility preservation procedures, which can range from $150 to $15,000. 28 However, the cost of fertility preservation procedures is not the major determinant of this type of financial stress.…”

“…Participants who were able to access financial resources (e.g., health insurance or family) generally indicated being able to afford fertility preservation methods, although exploring these options was another "off-time" task. 22 A surprising finding: the potential benefits of financial stress Despite the fact that financial stress was often appraised as stressful in EA cancer survivors' lives, it also was seen as yielding benefits. Specifically, a number of participants recognized cancer-related financial stressors but, as a result of having financial support from friends, family, or workplace, felt a sense of financial security amidst the instability of being an EA cancer survivor.…”

Systematic review of illness uncertainty management interventions for cancer patients and their family caregivers

“…It therefore remains unclear whether the findings of these reviews are generalizable to patients with other types of cancer. Additionally, although research has shown that children and adolescents with cancer are affected by illness uncertainty [17,18], no systematic review has examined their experiences of uncertainty management interventions. Researchers and practitioners stand to benefit from a comprehensive review of the literature about illness uncertainty interventions for patients with different types of cancer across age groups and their family caregivers.…”