Bee Teng Lim1, Phyllis Butow2, Jill Mills1, Annie Miller1, David Goldstein3. 1. Practical Support Unit, Cancer Council NSW, Woolloomooloo, New South Wales, Australia. 2. The Psycho-oncology Co-operative Research Group, the University of Sydney, Sydney, New South Wales, Australia. 3. Department of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales, Australia.
Abstract
OBJECTIVE: The information needs of patients and carers from culturally and linguistically diverse backgrounds, including from the Chinese community, are not well understood, and there has been no previous synthesis of the literature. We conducted a systematic review of the information needs of the Chinese community affected by cancer. METHODS: Database, reference list, and author searches were conducted to identify studies reporting information needs of the Chinese community affected by cancer. Data synthesis was undertaken to define categories of information needs. RESULTS: Initial searches yielded 2558 articles. Out of the 40 full-text articles reviewed, 26 met all the eligibility criteria. Cancer-specific, treatment, and prognosis information were the most frequently reported information needs across the cancer care continuum. Similarly, this information was the most commonly reported information needs across different health systems, migration statuses, and Chinese cultural values. Though less frequent, information needs related to interpersonal/social, financial/legal, and body image/sexuality were also raised. Thirteen studies quantified the prevalence of unmet needs, and the most frequently reported unmet needs were related to health system and information, followed by psychological, patient care and support, physical daily living, and sexuality needs. Language and cultural factors were identified in all studies involving Chinese migrants living in English-speaking countries. CONCLUSIONS: Failing to meet the information needs of the Chinese community members affected by cancer increases the risk for poor cancer outcomes. Potential interventions such as translated resources, bilingual advocates, an online information portal, and communication aids can be helpful in addressing the unmet needs for this community.
OBJECTIVE: The information needs of patients and carers from culturally and linguistically diverse backgrounds, including from the Chinese community, are not well understood, and there has been no previous synthesis of the literature. We conducted a systematic review of the information needs of the Chinese community affected by cancer. METHODS: Database, reference list, and author searches were conducted to identify studies reporting information needs of the Chinese community affected by cancer. Data synthesis was undertaken to define categories of information needs. RESULTS: Initial searches yielded 2558 articles. Out of the 40 full-text articles reviewed, 26 met all the eligibility criteria. Cancer-specific, treatment, and prognosis information were the most frequently reported information needs across the cancer care continuum. Similarly, this information was the most commonly reported information needs across different health systems, migration statuses, and Chinese cultural values. Though less frequent, information needs related to interpersonal/social, financial/legal, and body image/sexuality were also raised. Thirteen studies quantified the prevalence of unmet needs, and the most frequently reported unmet needs were related to health system and information, followed by psychological, patient care and support, physical daily living, and sexuality needs. Language and cultural factors were identified in all studies involving Chinese migrants living in English-speaking countries. CONCLUSIONS: Failing to meet the information needs of the Chinese community members affected by cancer increases the risk for poor cancer outcomes. Potential interventions such as translated resources, bilingual advocates, an online information portal, and communication aids can be helpful in addressing the unmet needs for this community.
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