Information and communication needs of Chinese American breast cancer patients: perspectives on survivorship care planning

Abstract

Background The existing knowledge on the survivorship experiences of Chinese American breast cancer survivors (CABCS) has arisen largely from aggregated data across multiethnic or multicancer studies that have focused on quality of life. Little is known about Chinese American perspectives and preferences for survivorship care. Objective To examine the experiences of CABCS to better understand their information and communication needs and their preferences for survivorship care plans (SCPs). Methods 16 CABCS, aged 37-72 years, were recruited through community-based organizations in the Northeast United States to participate in one-on-one telephone interviews about their breast cancer survivorship experience. The semistructured interviews were conducted in Mandarin, Cantonese, or English. Two investigators transcribed and translated the audio recordings into English and analyzed the interview transcripts using established methods of qualitative content analysis. Results Three main themes were identified through analysis of interview transcripts: the need for evidence-based and culturally and linguistically appropriate health information; the role of language or communication barriers and culture in accessing care and communicating with providers; and preferences for SCP elements and format. Limitations The sample may not be representative of the entire population of CABCS. Conclusions The findings provide insight into the information and communication needs and SCP preferences of CABCS. Understanding the cultural nuances that underlie these needs and preferences is critical for improving CABCS's quality of life after treatment for cancer. SCPs that incorporate Chinese-language resources and address the unique cultural needs of this population should be developed and they should include information about diet and nutrition as well as traditional Chinese medicine.

Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients

“…However, challenges in addressing these elements of post-treatment care in a safety-net setting with non-English speaking and limited English proficiency (LEP) breast cancer patients has received little attention. A recent study of SCP preferences among Chinese American breast cancer survivors found that the women interviewed would prefer reviewing the treatment summary in person with a provider, and that follow up written information in lay language in English and Chinese would be acceptable [11]. Preferred content was similar to that identified in the data presented herein, with the addition of requests for information on Traditional Chinese Medicine.…”

“…Further, they argue that the emerging science and implementation of SCPs are void of patient input. Overall, this research suggests gaps in the ability of existing SCP templates to address the information needs of specific population groups or to be particularly useful to patients as they transition from oncology to primary care [11–14]. The study reported here is the first that we are aware of that includes perspectives of ethnically and linguistically diverse safety-net breast cancer patients on SCP content and delivery.…”

“…A growing literature is applying these understandings to the development and implementation of SCPs with the aim of infusing SCPs with the perspectives of patients [11–13]. To date, this research suggests that existing SCP templates fail to address the information needs of specific population groups or to be particularly useful to patients as they transition from oncology to primary care [11–14]. Some of this research suggests that health literacy may be an important mitigating factor.…”

Advance care planning within survivorship care plans for older cancer survivors: A systematic review

“…Thus, advanced nurse practitioners may be best placed to facilitate this and encourage discussion about and uptake of both SCPs and ACP in these older cancer survivors, particularly when frailty and multimorbidity are recognised [54,62]. Personal (face-to-face) contact with trained staff is acceptable and preferable to many patients [63] and has been shown to improve adherence with SCPs [16]. Thus, it could be a useful format for delivering ACP where desired.…”

A Student-Led Health Education Initiative Addressing Health Disparities in a Chinatown Community

“…Outreach to underserved minority groups such as Asian Americans requires the understanding of their common health disparities as well as an appreciation of known barriers such as acculturation, which can influence their access to care and perception of health. 7,8 Of the top 6 largest US Asian groups (Japanese, Korean, Asian Indian, Filipino, Vietnamese, and Chinese), Chinese Americans lead the US Asian population, representing just over 4 million people (23.2%). 9 The Chinese also lead this group in rising poverty rates, reaching 15.2% in 2012.…”