Coming of Age With Cancer: Physical, Social, and Financial Barriers to Independence Among Emerging Adult Survivors

Abstract

Objective: To explore the transition to self-care among a sample of emerging adult cancer survivors after hematopoietic cell transplantation (HCT). Research Approach: Qualitative Setting: The hematology outpatient setting at City of Hope National Medical Center in Southern California. Participants: 18 HCT survivors who were 18–29 years of age at the time of HCT for a primary hematologic malignancy and 8–60 months post-HCT participated in the study. Methodologic Approach: We conducted in-depth, semi-structured interviews and analyzed interview transcripts using Grounded Theory methodology. Findings: Health-related setbacks following HCT disrupted not only participants’ journey towards self-care, but also their overarching developmental trajectory towards adulthood. Physically, participants struggled with lack of personal space around caregivers, but felt unready to live on their own due to persistent health issues. Socially, they relied on multiple caregivers to avoid relying too much on any one person. Financially, participants worried about prolonged dependence and increased needs in the future due to their cancer experience. Interpretation: The transition to self-care after HCT is deeply connected to broader developmental processes of emerging adulthood. Specifically, physical-spatial, social, and financial setbacks during survivorship after HCT were perceived as threats to independence and self-sufficiency. Implications for Nursing: Nurses can support the transition to self-care among emerging adults after HCT by recognizing the broader developmental impact of their cancer experience. We provide examples of how to incorporate these findings into patient-centered care for this population, such as identifying opportunities for independence in care plans and goal-setting and availability of financial counseling.

Impact of cancer on school, work, and financial independence among adolescents and young adults

“…13 These financial stressors can lead to prolonged dependence on parents. 14 For example, an AYA patient in one study commented, "I still feel dependent on [my parents], because I live with them. And they're pretty much providing everything right now… Anything that I need, it has to go through them."…”

“…And they're pretty much providing everything right now… Anything that I need, it has to go through them." 14 Beyond this immediate impact, cancer can also compromise long-term earning potential and contribute to financial distress that lasts long into survivorship. 8 By undermining an AYA patient's financial and personal independence, cancer "may result in the 'failure to launch' phenomenon of some AYAs."…”

Adolescents and young adults are a unique patient group whose diagnosis of cancer presents challenges that require in-depth, individual assessment

“…The purpose of this study was to explore the transition to self-care in the recovery phase following haematopoietic cell transplant (HCT) among emerging adults, defined as the life stage between adolescent and adulthood (18 years old to mid to late 20s) 2. The study used grounded theory methodology, conducting semistructured interviews with open questions to gain in-depth understanding of the participants unique experiences of transition to self-care after treatment.…”

“…Therefore, the studies key finding in relation to the unique caregiving configuration of AYA is of note. The suggestion that AYA dependence on a single caregiver threatens their autonomy and therefore multisources are maintained is an interesting concept, not reflective of the dyadic relationship previously seen in adult and paediatric settings 2. This suggests that professionals must consider and understand the dynamic relationships around the AYA, not just in isolation.…”

“Aftermath”: Financial Resource Requirements of Young Adults Moving Forward After Cancer Treatment

“…YAs are just developing that sense of self and this can affect selfesteem and intimacy as well. 9 Some YAs reported financial assistance from family and friends ''During treatment, I temporarily moved back home with my parents. I relied on them not only for my caregiving and emotional support but for financial supplementation,'' ''My friends and family had a fundraiser that helped pay for some of the medical costs.''…”