Abstract
ObjectivesTo explore the information needs of caregivers of culturally and linguistically diverse (CALD) patients, and how they access and understand health information related to the management of their care person's chronic illness(es).BackgroundCaregivers of CALD patients experience greater unmet needs compared to the general caregiver population. They experience many challenges in identifying resources and accessing formal supports to aid in self‐management behaviours.MethodsEleven caregivers were recruited from outpatient clinics in Québec, Canada. Consenting caregivers participated in one face‐to‐face or phone interview. A qualitative descriptive design and inductive content analysis were used to identify themes.ResultsCaregivers described a “village” approach to caregiving in which more than one individual was involved in patient care. The specific roles ascribed to caregivers defined their information needs. Caregivers described two categories of information needs: perceived and unperceived. Perceived information needs were explicit, and centred on the medical management of illnesses. Unperceived needs were unrecognized knowledge gaps that emerged during interviews and focused on self‐care.ConclusionAlthough caregivers' perceived needs are often met, their unperceived needs remain unmet. Health‐care providers should perform need assessments to identify caregivers' unperceived needs, with the aims of providing culturally competent care and ongoing support.
Highlights
As many as 60% of Canadians are diagnosed with a chronic illness, many of whom are from a culturally and linguistically diverse (CALD) background.[1]
The research questions this study addresses are: (a) What are the information needs of caregivers of patients diagnosed with chronic illness(es) from CALD backgrounds; (b) How do caregivers of CALD patients access and understand health information; and (c) What do caregivers of CALD patients think of available instructional materials?
Caregivers of CALD patients have been identified as a vulnerable group because of their high risk of burden, their needs remain understudied.[14,15]. This is the first qualitative study describing the information needs of caregivers of CALD patients diagnosed with a range of chronic illnesses, and how they access and understand health information to care for a family member
Summary
As many as 60% of Canadians are diagnosed with a chronic illness, many of whom are from a culturally and linguistically diverse (CALD) background.[1]. Indigenous persons are excluded due to their unique experiences and needs as first nation people, which differ significantly from other minority groups.[3]. In Canada, 20.6% of the population is foreign-born. One concern is that the incidence of chronic illness is higher among CALD populations compared to the general population.[4] Despite this, access and usage of health-care services among CALD populations are low.[5] This may be related to the unique challenges faced by these communities including unfamiliarity with the health-care system, a lack of culturally and linguistically appropriate information, and being unable to communicate effectively with the treating team.[6] These barriers may in part account for the findings that CALD individuals often have a poor understanding of their condition and associated medical treatments.[4]
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