Topical Commentary

By Abigail Reid

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Providing care to a family member with a serious health condition is no easy task, and can become more difficult for those lacking a support system. Informal, or unpaid, caregivers—typically spouses or children—of individuals with serious health conditions, such as Parkinson’s disease (PD), provide most of the physical and emotional support needed by their care recipients (1).While care recipients benefit from this support, providing it can take a toll on caregivers’ mental wellbeing and can lead to “caregiver burden” or extreme stress that can limit the caregivers’ capacity to provide care (2).

Expectations surrounding provision of care by family members differs between cultures. People from more individualistic cultures—those that value independence more than interconnectedness—tend to provide less direct support for family members with serious health conditions (3). Conversely, those from more collectivist cultures—who prioritize group interests over individual interests—may provide excessive care that is beyond the needs of the care recipient and may result in the caregiver’s wellbeing becoming compromised (3). As the wellbeing of family caregivers is impacted by their cultural backgrounds, supports for family caregivers should be designed in culturally relevant ways.

In Canada, we often pride ourselves on our celebration of diverse cultural backgrounds, but not all our major institutions reflect this. Namely, our healthcare system demonstrates aspects of individualism, which may lead to distress for people with a more collectivist orientation (4). One way in which individualism is embedded in healthcare is with the heavy focus on treatments and programs solely for individuals with illnesses, meanwhile there are often relatively few supports for their informal caregivers—who may be exhausted in caregiving roles and in need of support themselves.

This can particularly affect immigrants from collectivist cultures such as Africa, China, or parts of the Middle East (4,5). The caregiver may experience burnout in over-caring for loved ones and under-using formal supports, such as assisted living (3). This may result in “burden” or stress for the caregiver (2). Supports for family caregivers could help to alleviate some stress and may be especially beneficial by immigrants from collectivist cultures.

The lack of culturally relevant supports for family caregivers was evident in a systematic review conducted by the authors in 2019. This search sought to understand what supports and interventions had been developed to support the physical, mental, and social the wellbeing of informal caregivers of individuals with PD. The review revealed hundreds of studies on supports for individuals with PD, but only a handful that addressed supports or interventions to improve the wellbeing of caregivers.

Of the few studies on caregiver wellbeing, there were some interventions that used education programs and one study each on a tele-support program, a laughter yoga group, and a mindfulness intervention. Out of the limited pool of studies focusing on supporting caregivers, no study approached the topic with the lens of cultural diversity or included ways of specifically supporting informal caregivers from collectivist backgrounds. There appears to be a substantial gap in the literature on supports for family caregivers in general, with an even greater gap in the area of supports tailored to family caregivers from collectivist backgrounds.

The healthcare system can play an important role in supporting the wellbeing of informal caregivers; but to do so effectively, it must be designed in a way that accounts for their cultural differences. Cultural sensitivity involves creating an inclusive environment that considers the diverse needs, abilities, and preferences of individuals based on their cultural backgrounds. Although cultural sensitivity training has been touted as an effective solution to a lack of cultural sensitivity in healthcare, the evidence does not suggest that it makes a lasting positive impact, with cultural sensitivity workshops often being superficial, essentialized, divisive, infantilizing, and impractical (6).

“Nurturing the patient-caregiver relationship begins with our attitudes, which are shaped by our experiences and the conversations we have with those around us.” – Abigail, rehabINK author

In a healthcare system that we hope to be fair and impartial, there must be a more holistic approach so that treatments, programs, and interventions take individual needs into consideration. An approach to care that views family caregivers and patients as equally valuable and interconnected would prioritize each member’s wellbeing. There must be research aimed at understanding the unique needs of caregivers from collectivist cultures, and programs offered to support both the people who are cared for as well as the informal caregivers. This would help caregivers from collectivist cultures as well as those from more individualistic cultures.

In a way, this would be like a cultural version of universal design (7), which promotes equality through the accessible design of spaces and structures. A universally designed healthcare system could offer programs that would help informal caregivers from collectivist ethnic backgrounds and those from more individualistic backgrounds to thrive.

Moving towards a future in which we hope to see greater equity in healthcare, we must consider the practical steps we can take to make the future we envision a reality. A key criticism of cultural sensitivity workshops is that they tend to be superficial, being too short to lead to any lasting change (6). Nurturing the patient-caregiver relationship begins with our attitudes, which are shaped by our experiences and the conversations we have with those around us. Culturally sensitive approaches can help the next generation of thinkers, planners, and researchers will design our public systems in ways that include all. Awareness of the need for cultural sensitivity begins with the conversations we have in our homes, in our workplaces, and in the places where we gather for leisure. Engaging in these conversations can cause a ripple effect, leading to better supports for those whose needs may be ignored.

Acknowledgements

Featured illustration by Saharan Shehryar for rehabINK.

To refer to this article, it can be cited as:

Reid, A. Overlooked in Healthcare: Supporting Family Caregivers from Diverse Backgrounds. rehabINK. 2021:10. Available from https://rehabinkmag.com

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References

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2. Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: A longitudinal study. The Gerontologist. 1986;26(3):260-266.
3. Pyke, B. Caring More or Less: Individualistic and Collectivist Systems of Family Eldercare. Journal of Marriage and Family. 1996;58(2): 379–392.
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5. The Daily – Immigration and ethnocultural diversity: Key results from the 2016 Census [Internet]. Ottawa, Canada: Statistics Canada [cited 2020 Nov 10]. Available from: https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025b-eng.htm
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