Ethnicity/Culture

The culture and/or ethnicity of individuals can play a profound role in their well-being. In the caregiving context, caregivers may experience varying levels of conflict with their own cultural identities and the social constructions of their surroundings.  Beliefs about illnesses, such as dementia, help seeking behaviour and cultural competence/awareness on the part of service/treatment providers are all salient issues related to ethnicity and culture of caregivers. Similarly, differences between ethnocultural groups’ response to and satisfaction with interventions has been shown to vary (REACH II, REACH) significantly and illustrates that “one size does not fit all”.

According to the Public Health Agency of Canada (2003), “Some persons or groups may face additional health risks due to a socio-economic environment, which is largely determined by dominant cultural values that contribute to the perpetuation of conditions such as marginalization, stigmatization, loss or devaluation of language and culture and lack of access to culturally appropriate health care and services”.

Beliefs about an illness and about the perceptions of certain illnesses can vary from culture to culture. For example, with dementia, Hinton (2005) found that caregivers vary in their explanatory beliefs of dementia (e.g. biomedical vs folk) depending on whether they were of a certain culture or educational level.  In looking at South Asian family caregivers,  Katbamna et al (2004) found that “societal attitudes towards disability and the fear of obligation prevented the seeking and accepting of help from wider social networks and the evidence does not support the assumption about extended families, and their willingness and ability to support carers.” Thus it is critical that those providing services and structuring programs not only take into account that there are cultural variations on beliefs about illnesses of older adults, but also on provision of care. Attitudes and beliefs about ethnocultural minorities need to be carefully considered as stereotypes of filial piety, for example, may lead treatment providers to believe that individuals do not want care because they are of a certain culture or because they do not ask for it directly (perhaps because doing so would be considered ‘shameful’).  Conversely, there may be expectations by treatment providers that extended family caregivers are able and willing to provide assistance to caregivers and care recipients when in fact that may not be the case.

A dimension of ethnocultural populations that is particularly important with respect to services and service access for older adults in Canada is immigration status. Because older adults who have been in Canada for less than ten years do not have full access to government and social benefits, the financial responsibility falls on those who are sponsoring these older adults to provide assistance when or if the seniors are unable to do so themselves. Thus, for caregivers of sponsored seniors the stakes (and potential stressors) are much higher. They are more responsible for the financial needs of the care recipients, which in turn makes the care recipients all the more vulnerable and dependent. Should a care receiver require additional supportive care, the caregiver will have to be the one to pay for the services. Recognizing immigration status of an older adult is an important component to recommending appropriate service options to family members who may or may not be able to access services typically recommended for caregivers (e.g. in home respite services).

A highly promising intervention for Chinese female caregivers demonstrates that interventions can be successfully tailored to accommodate ethnocultural beliefs about dementia. Specifically, Gallagher-Thompson et al (2007) provided an in-home behavioural management (IBHM) psychoeducational support program, based on CBT theoretical underpinnings.  This intervention was able to show significant effects on caregiver depressive symptoms and caregiver related stress. The decision to modify components of the intervention, such as delivery of the behavioural management in-home versus an external setting, and to adapt the language and communication style (e.g. rephrasing “assertiveness training” to “practicing ways to communicate effectively with those who can assist with caregiving”, as well as particular content issues (e.g. the perception that it is shameful for spouses to seek help from adult children), were made by consulting with focus groups of individuals before the implementation of the program.

Alongside issues of ethnocultural minorities, another minority population, namely lesbian, gay, bisexual and transgender (LGBT) caregivers experience challenges that shape the caregiving experience as well as service provision/utilization.  Specifically, LGBT individuals may experience barriers to accessing services because of their own encounters with discrimination or prejudice. Older LGBT adults may be perceived not to have ‘families’ or support for families, whereas the literature shows this not be the case. Thus, intervention options that include family members (e.g. family support therapies), or religiously based/affiliated support interventions can be impacted by treatment provider beliefs/stereotypes about LGBT individuals and what would be considered “appropriate” care.  As Coon (2004) points out, there may be hesitation for LGBT caregivers to participate in support groups that would involve them self-disclosing their sexual orientation/status. Further, older LGBT may experience difficulties disclosing or “coming out” that younger individuals would not.

A CBT based intervention named SURE 2 (Sharing & Support, Unhelpful Thoughts/Behaviours & Understanding, Reframes & Referrals, Education & Exploration) (Coon, 2004) that has been designed for use in support LGBT focused support groups offers a promising counseling tool.  Underpinning the SURE2 and other LGBT interventions is the provision of a “safe place” where LGBT individuals are able to discuss their multiple social roles through the lens of their LGBT identity.  Sensitivity to and awareness of LGBT caregiver issues by treatment providers is important in providing appropriate advice and referrals for interventions and programs.

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