Background/Aims:
Chinese-Australian immigrant cancer patients and caregivers report worse psychological morbidity and quality of life compared to their English-speaking counterparts. Currently, there are limited self-management resources that adequately address the psychosocial needs of both Chinese patients and caregivers. This study aims to develop a culturally appropriate self-management resource (WeCope) to address this need.
Methods:
Six topics were proposed for WeCope (communicating your needs with your health care team; making your treatment decision; managing your emotions; managing your physical symptoms; managing your relationship; where to find additional support) based on a systematic review of Chinese patients’ and caregivers’ unmet supportive care needs. Mandarin and Cantonese-speaking patients and caregivers recruited through Chinese cancer support organisation, CanRevive, participated in three focus groups, conducted in Chinese. They provided feedback on the information content and presentation of two draft booklets - ‘Communicating your needs’; ‘Managing your emotions’. Transcripts were coded based on pre-defined categories regarding content relevance and presentation, and emerging themes.
Results:
Patients (n = 10, target 10) and caregivers (n = 9, target 10) found the booklets informative and comprehensive, and recommended adding illustrative anecdotes from other patients and caregivers. Cantonese-speaking caregivers felt that six booklets were too many and suggested condensing into three. Participants emphasised the need for practical information (e.g. contact details of support services) to accompany suggestions of how to communicate with doctors in ‘Communicating your needs’. Information regarding treatment outcomes and emergency care were also highly preferred. For ‘Managing your emotions’, patients from both language groups wanted progressive muscle relaxation instructions to be accompanied by images. Most participants preferred coloured illustrations over photographs and monochrome images.
Conclusions:
WeCope is being refined based on participant feedback. Results from additional focus groups on the remaining four booklets will be reported.