“It Changed Our Outlook on How We Want to Live”: Cancer as a Transformative Health Experience for Young Adult Survivors and Their Family Members

2018 ◽  
Vol 29 (3) ◽  
pp. 404-417
Author(s):  
Katharine J. Head ◽  
Nicholas T. Iannarino
Keyword(s):  
Young Adult ◽  
Health Care Providers ◽  
Family Members ◽  
Adult Survivors ◽  
Well Being ◽  
Primary Treatment ◽  
Care Providers ◽  
Open Communication ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors

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.

scholarly journals A qualitative study of adolescent and young adult cancer survivors’ perceptions of family and peer support

2018 ◽  
Vol 25 (5) ◽  
pp. 713-726 ◽  
Author(s):  
Glynnis A McDonnell ◽  
Elyse Shuk ◽  
Jennifer S Ford
Keyword(s):  
Young Adult ◽  
Qualitative Study ◽  
Peer Support ◽  
Adult Survivors ◽  
Adolescent And Young Adult ◽  
Structured Interviews ◽  
Young Adult Cancer Survivors ◽  
Practical Support ◽  
Adult Cancer Survivors ◽  
Young Adult Survivors

This qualitative study examined adolescent and young adult survivors’ perceptions of support from family and peers. A total of 26 survivors, aged 16–24 years, who had been diagnosed with cancer between the ages of 14 and 18, participated in semi-structured interviews. Three themes emerged for support: practical support, emotional support, and new sense of closeness. For lack of support, two themes emerged: absence during treatment and lack of understanding about appearance changes. These findings emphasize the perceived importance of family and peer support throughout adolescent and young adults’ cancer trajectories and indicate a need for interventions to help adolescent and young adult develop and maintain support networks throughout treatment and survivorship.

Young adult cancer survivors' (CS) follow-up care expectations of their primary care providers (PCPs) and oncologists.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9598-9598
Author(s):  
Divjot Singh Kumar ◽  
Ali Moghaddamjou ◽  
Winson Y. Cheung
Keyword(s):  
Young Adult ◽  
Sexual Function ◽  
Significant Proportion ◽  
Primary Care Providers ◽  
Care Providers ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Follow Up Care ◽  
Physician Roles

9598 Background: The delivery of cancer survivorship care can be complicated by a lack of clarity surrounding physician roles during follow-up. This can be particularly challenging for young adult CS who face unique needs. Our aim was to characterize young CS’ follow-up care expectations of their PCPs and oncologists. Methods: A self-administered survey was mailed to all CS diagnosed with cancer from 2005 to 2009, aged 20 to 39 years at the time of diagnosis, evaluated at any 1 of 5 regional cancer centers in British Columbia, and lived beyond 2 years. The questionnaire focused on demographics, prior treatment, and CS attitudes regarding physician responsibilities during survivorship, specifically their views about their PCPs’ and oncologists’ roles. Descriptive statistics and regression analyses were used to summarize these expectations and to determine if they differed based on physician type. Results: A total of 426 patients were included (response rate 59%): current median age was 40 years (range 24-45) and 301 (71%) were women. Common tumor sites were breast (48%), testicular (27%), and gynecological (18%). Most patients (63 and 65%, respectively) expected PCPs to be responsible for following their most recent cancer and screening for future cancers. Nearly all (85 and 93%, respectively) indicated that PCPs should also provide preventive care and manage their co-morbidities. Conversely, a significant proportion (65%) felt that oncologists should remain responsible for addressing side effects of cancer treatments throughout survivorship. In terms of fertility discussions, half of patients viewed this as a role for oncologists whereas the remainder perceived this to be more suitable for PCPs. Interestingly, neither PCPs nor oncologists were seen to have any significant role in addressing social reintegration, interpersonal relationships, or sexual function, with <30% of respondents expecting these to be discussed by either physician. Conclusions: Young adult CS expect PCPs to be responsible for most aspects of their ongoing care. More clarity regarding physician roles is required with respect to specific survivorship issues, such as fertility, sexual function and psychosocial health.

Use of online survivorship care plans by young adult cancer survivors: Patient characteristics and patient reported outcomes.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 55-55
Author(s):  
Dava Szalda ◽  
Marilyn M. Schapira ◽  
Linda A. Jacobs ◽  
Carolyn Vachani ◽  
James M. Metz ◽  
...  
Keyword(s):  
Young Adult ◽  
Side Effects ◽  
Patient Reported Outcomes ◽  
Adult Survivors ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Providers ◽  
Care Plans ◽  
Adult Cancer Survivors ◽  
Patient Reported

55 Background: Young adult survivors (YAS) are at risk for side effects of cancer therapy and poor post treatment self-management relative to older adult survivors (AS). Survivorship care plans (SCPs) have proved feasible to provide education on symptom management, but the characteristics of YAS who utilize SCPs and patient-reported outcomes (PROs) of YAS via SCPs remains unstudied. Methods: Patient-reported characteristics and outcomes of YAS, age 18 to 39 years, who used a free online SCP generator (OncoLife), between May 2010 and May 2012 are reported. PROs of YAS were compared to AS, age 40-70 years, via frequencies and chi-squared analyses. PROs were queried upon generation of SCP based on diagnosis and treatments received. Results: YAS (n = 1,445, Mage= 31.5 years) and AS (n = 6301, Mage= 56.3 years) were primarily female (69% vs. 78%), Caucasian (76% vs. 86%) and an average of 2.6 years (range 0-20years) vs. 3.2 years (range 0-46 years) since diagnosis and treatment. Most common diagnoses were breast cancer, testicular cancer, lymphoma, thyroid cancer, and sarcomas in YAS vs. breast, colon, lymphoma, prostate, and lung cancer in AS. Three-quarters (75%) of YAS and 70% of AS generated the SCP themselves with the remaining SCPs generated by health care providers. Less than a quarter (22%) of YAS or AS (18%) reported previously receiving a treatment summary. The most commonly endorsed PROs in YAS and AS were neurocognitive changes and fatigue. Fewer YAS than AS endorsed pulmonary concerns and male sexual side effects. The majority of PROs were reported at similar proportions by YAS and AS (see table). Conclusions: In patients who generated an OncoLife SCP, YAS reported similar rates of treatment-related side effects to those reported by AS demonstrating SCPs as a mechanism to capture and address off-therapy issues for all survivors. [Table: see text]

Preserving fertility for adolescent and young adult cancer survivors: A community model.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 109-109
Author(s):  
Stephanie L. Lawrence ◽  
Karen H. Albritton ◽  
Emily Berry ◽  
Aurelio Rodriguez ◽  
Keith Edward Argenbright
Keyword(s):  
Young Adult ◽  
Cancer Survivors ◽  
Fertility Preservation ◽  
Care Coordination ◽  
Adolescent And Young Adult ◽  
Care Providers ◽  
Young Adult Cancer Survivors ◽  
Number Of Patients ◽  
Adult Cancer Survivors ◽  
Young Adult Cancer

109 Background: Loss of fertility is a significant late effect of cancer treatment for those patients diagnosed during their reproductive years. This loss is a source of considerable distress for patients who have not yet started or completed building their families. Fertility preservation counseling to discuss reproductive concerns regardless of treatment phase can ease this burden. However, due to access- and health-related barriers, approximately half of oncologists report having never referred a patient for a fertility consultation, and as many as 60% of cancer survivors do not recall receiving this information from their healthcare team at time of diagnosis. Methods: The Moncrief Cancer Institute (MCI) Fertility Preservation Program synchronizes services between oncology care providers and fertility specialists. This model is designed to remove discomfort associated with discussing options while enhancing access to care by arranging physician and patient education opportunities specific to fertility preservation and the treatment options available, patient care coordination for fertility preservation treatment, and financial assistance for fertility preservation treatment for underinsured and uninsured adolescent and young adult cancer patients. Results: Referrals for fertility counseling have been provided from 5 institutions through an established referral network comprised of non-profit organizations, local hospitals, and private practice providers. MCI partners with 2 reproductive specialty care groups who offer treatment at reduced rates, which MCI further subsidizes based on financial need. No patients are turned away for inability to pay. The institutions that MCI has targeted for education and partnerships support an environment that meet the distinct needs of adolescent and young adult patients with cancer. Conclusions: Program impact is evaluated by the number of patients and providers receiving education, and the number of patients receiving care coordination and/or financial support for fertility preservation treatment. In the fight against cancer, MCI is assisting patients to protect their future families through fertility preservation education and care coordination.

Discussions regarding reproductive and sexual health among young adult survivors of cancer.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 9588-9588
Author(s):  
Ying Wang ◽  
Leo Chen ◽  
Winson Y. Cheung
Keyword(s):  
Young Adult ◽  
Sexual Dysfunction ◽  
Sexual Health ◽  
Regression Models ◽  
Adult Survivors ◽  
Clinical Factors ◽  
Young Adult Cancer Survivors ◽  
Adult Cancer Survivors ◽  
Reproductive And Sexual Health ◽  
Young Adult Survivors

9588 Background: Infertility and sexual dysfunction can result from many cancer treatments and may become a source of significant distress for young adult cancer survivors. Our aims were to 1) characterize the frequency in which reproductive and sexual health discussions occur in a population-based cohort of young cancer patients and 2) identify clinical factors associated with such discussions. Methods: Patients aged 20 to 39 years who were diagnosed with solid tumors from 2006 to 2008, evaluated at any 1 of 5 regional cancer centers in British Columbia, Canada and alive at 2 or more years after their initial diagnosis were included. Demographics, tumor and treatment characteristics, and information on patient-physician conversations were analyzed. Using regression models, we explored the relationships between clinical factors and whether or not discussions had occurred. Results: A total of 397 patients were identified: median age was 35 years (IQR 31-38), 28% were men, 88% had ECOG 0, and 73% reported being in a relationship. Tumor sites included breast (50%), testicular (27%), gynecological (17%), and colorectal (6%). A significant proportion of patients received chemotherapy and radiation that posed the potential risk of infertility or sexual dysfunction. However, only 224 (56%) and 24 (6%) of individuals had a discussion about reproductive and sexual health, respectively, within the first month of their diagnosis. At 6 months, an additional 25 (6%) and 16 (4%) patients had discussed these concerns with their physicians. Age, gender, ECOG, relationship status, and type of chemotherapy and radiation were not correlated with whether or not discussions had occurred (all p>0.05). In regression models, tumor site was associated with differences in reproductive and sexual health discussions between patients and physicians (Table). Conclusions: Among young adult survivors of cancer, fertility and particularly sexual function are inadequately addressed during discussions near the time of initial cancer diagnosis. [Table: see text]

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