Elsevier

Social Science & Medicine

Volume 72, Issue 3, February 2011, Pages 338-346
Social Science & Medicine

The influence of culture on home-based family caregiving at end-of-life: A case study of Dutch reformed family care givers in Ontario, Canada

https://doi.org/10.1016/j.socscimed.2010.10.010Get rights and content

Abstract

Families are facing increased pressure to provide care to their terminally-ill or dying kin in the home. It is known that balancing care with other personal and social roles can adversely affect family caregivers’ (FCGs) health, yet access to supportive services which can mitigate burden is often inadequate. Cultural factors are known to shape the experience of caregiving; however, most research to date tends to neglect the experiences of FCGs from different cultural groups. This understanding is necessary to ensure that supportive services are both meaningful and culturally-appropriate. Using qualitative methods, we undertook longitudinal research with a sample of Dutch Reformed FCGs (n = 5) to understand their experiences of caregiving and bereavement. The results of the study are suggestive of a cultural specificity with respect to caregiving that impacts both responsibilities and reactions to care. Three themes were salient to this group as a cultural entity: cultural attitudes towards care, religious beliefs and coping, and culturally-informed care-seeking behaviours. These three themes were seen to be a function of their religious and ethnic identities and were reinforced by ties to the communities in which they resided. Cultural identity provided a framework through which to understand and make sense of the experience, while group membership provided access to networks of informal support. This research contributes to the geographical literature on care/caregiving by providing insight into the social, cultural and religious context of informal family caregiving with a population who live in close geographic proximity. On a practical level, this case study indicates the importance of considering how these factors may operate in other settings in order to implement timely and appropriate interventions to better support FCGs who are caring for their terminally-ill loved-ones at home.

Section snippets

Background information and review of the literature

While models for community-based care are predicated in part on the assumption that patients want and will be better cared for in the community, they are highly dependent on and expect family support for success (Rajnovich et al., 2005, Romanow, 2002). Supporting people to die at home underpins the provision of P/EOL care because of its association with improved quality of life for patients (Stajduhar & Davies, 1998); as a result, it is believed to fit well with the community-based care

Research methods

This study was conducted over a 16 month period in 2008–2009. The overall research question guiding this study was: what factors are significant to Dutch Reformed FCGs as a cultural entity in the provision of P/EOL care? Given that the issue of family caregiving with Dutch Reformed FCGs is not well well-understood, we used an instrumental case study research design (Creswell, 2007, Stake, 2000). This method is appropriate to understand an issue within its context and over time through the

Results

The results of the case study are presented in the following section. We begin with a brief description of the FCG participants, followed by an overview of the locally-situated socio-historical context of the group. This contextual information was provided in part by key informants who were religious leaders in the community. This description, which situates the group in space and time, provides a backdrop which is central to understanding the experience of caregiving. It both explains and

Discussion and concluding remarks

The purpose of this research was to understand cultural influences on P/EOL caregiving with a Dutch Reformed population living in southern Ontario. To date, there is a dearth of research on cultural diversity in family caregiving, and the research that is available tends to focus mainly on Asian, African African-American and Hispanic populations, all of which tend to be pervasive in numerous urban locales. In contrast, the Dutch Reformed population in Canada is, for the most part,

Acknowledgements

Our heartfelt thanks and appreciation goes out to the FCGs for participating in this study. We also extend our thanks to the palliative home care team for their assistance with this research. This study was made possible through funding from the Canadian Institutes of Health Research and a Canada Graduate Scholarship (Doctoral) from the Social Sciences and Humanities Research Council.

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