Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL).Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables.Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains.Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.
There is a robust evidence-base for stroke rehabilitation interventions in chronic stroke. This research synthesis reveals a paradox, whereby an impressive evidence-base contrasts with the limited optimism and resources available for rehabilitation in chronic stroke.
There is evidence to support the use of a number of treatments for chronic aphasia post stroke. Further research is required to fully support the use of these interventions and to explore the effectiveness of other aphasia interventions in the chronic stage.
Objective
The number of Chinese-American breast cancer survivors (BCS) is increasing as a result of increasing incidence rates. There has been little research on Chinese BCS’ follow-up cancer care. This qualitative study aims to understand how Chinese-American BCS experience and cope with physical distress relative to non-Hispanic White (NHW) survivors.
Methods
Seventy-one BCS (37 Chinese immigrant, 7 US-born Chinese, 27 NHW) were recruited from the Greater Bay Area Cancer Registry to participate in focus group discussions or one-on-one interviews about their survivorship experiences. All BCS were diagnosed with breast cancer at stage 0-IIA between 2006-2009, and had survived for 1-4 years without recurrence. Interviews were conducted in Cantonese, Mandarin, or English. Data analyses followed established qualitative methods of content analysis.
Results
BCS experienced pain and side effects from radiation, surgery, and hormonal therapy. Physical distress subsequently caused emotional concerns about recurrence or metastasis. Most BCS consulted physicians about their physical distress. Chinese immigrant BCS were less likely to have their issues resolved compared to NHW and US-born Chinese who were more likely to question physicians, ask for referrals, and make repeat attempts if their problems were not resolved. Some Chinese immigrant BCS turned to Traditional Chinese Medicine for relief or accepted the idea that physical distress was part of survivorship.
Conclusion
Chinese immigrant BCS may be at risk for greater distress compared with US-born Chinese and NHW BCS because of cultural norms that make them less inclined to express their needs to physicians or challenge physicians when their needs are not met. Furthermore, they may express symptoms in culturally unique ways (e.g., hot-cold imbalances). Further research is needed to determine how to best improve survivorship care experiences in this understudied population, with the goal of decreasing BCS’ physical distress and improving quality of life.
Participants reported experiencing medical discrimination at all 3 levels, which may have deleterious health effects through the biopsychosocial stress pathway and through active coping mechanisms that could lead to delayed- or underutilization of the health care system to avoid discrimination.
Purpose
Asian Americans have consistently reported poorer communication with
physicians compared with non-Hispanic Whites (NHW). This qualitative study
sought to elucidate the similarities and differences in communication with
physicians between Chinese and NHW breast cancer survivors.
Methods
Forty-four Chinese and 28 NHW women with early-stage breast cancer
(stage 0-IIa) from the Greater Bay Area Cancer Registry participated in
focus group discussions or individual interviews. We oversampled Chinese
women because little is known about their cancer care experiences. In both
interview formats, questions explored patients’ experiences and
feelings when communicating with physicians about their diagnosis,
treatment, and follow-up care.
Results
Physician empathy at the time of diagnosis was important to both
ethnic groups; however, during treatment and follow-up care,
physicians’ ability to treat cancer and alleviate physical symptoms
was a higher priority. NHW and US-born Chinese survivors were more likely to
assert their needs, whereas Chinese immigrants accepted physician advice
even when it did not alleviate physical problems (e.g., pain). Patients
viewed all physicians as the primary source for information about cancer
care. Many Chinese immigrants sought additional information from primary
care physicians and stressed optimal communication over language
concordance.
Conclusions
Physician empathy and precise information were important for cancer
patients. Cultural differences such as the Western emphasis on individual
autonomy vs. Chinese emphasis on respect and hierarchy can be the basis for
the varied approaches to physician communication we observed. Interventions
based on cultural understanding can foster more effective communication
between immigrant patients and physicians ultimately improving patient
outcomes.
Purpose
Cancer-related stress is heavily influenced by culture. This study explored similarities and differences in survivorship care concerns among Chinese American and Non-Hispanic White (NHW) breast cancer survivors.
Methods
A sequential, mixed-method design (inductive/qualitative research-phase I and deductive/quantitative research-phase II) was employed. Eligible women identified from the Greater Bay Area Cancer Registry were age ≥21, diagnosed with stage 0-IIa breast cancer between 2006–2011, and had no recurrence or other cancers. In phase I, we conducted 4 Chinese (n=19) and 4 NHW (n=22) focus groups, and 31 individual telephone interviews (18 Chinese immigrants, 7 Chinese US-born, and 6 NHW). Content analysis was conducted to examine qualitative data. In phase II, another 296 survivors (148 NHW age-matched to 148 Chinese cases) completed a cross-sectional survey. Descriptive statistics and linear regression analysis were conducted to examine quantitative data.
Results
Qualitative data revealed “socioeconomic wellbeing” (SWB) as a dominant survivorship concern, which was operationalized as a cancer survivor’s perceived economic and social resources available to access care. Quantitative data showed that low-acculturated Chinese immigrants reported the poorest SWB, controlling for covariates. Highly-acculturated Chinese immigrants and the US-born Chinese/NHW group reported similar SWB. Women who had low income levels or chemotherapy had poorer SWB.
Conclusions
SWB emerged as an important aspect of breast cancer survivorship. Immigration stress, cancer care costs, and cultural values all contributed to immigrants’ socioeconomic distress. Immigrant and US-born breast cancer survivors experienced different socioeconomic circumstances and well-being following treatment. Our findings warrant further investigation of socioeconomic distress and survivorship outcomes.
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