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Among neighbors: An ethnographic account of responsibilities in rural palliative care

Published online by Cambridge University Press:  19 March 2013

Barbara Pesut ,
Carole A. Robinson  and
Joan L. Bottorff
Barbara Pesut*
Affiliation:
Faculty of Health and Social Development, School of Nursing, University of British Columbia, Kelowna, British Columbia, Canada
Carole A. Robinson
Affiliation:
Faculty of Health and Social Development, School of Nursing, University of British Columbia, Kelowna, British Columbia, Canada
Joan L. Bottorff
Affiliation:
Faculty of Health and Social Development, School of Nursing, University of British Columbia, Kelowna, British Columbia, Canada
*
Address correspondence and reprint requests to: Barbara Pesut, Canada Research Chair, Health, Ethics and Diversity, Faculty of Health and Social Development, School of Nursing, University of British Columbia, ASC 287, 3333 University Way, Kelowna, British Columbia, CanadaV1V 1V7. E-mail: [email protected]
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Abstract

Objective:

Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants’ perspectives.

Method:

This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities.

Results:

Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community.

Significance of results:

Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.

Keywords

Palliative careQualitative researchEthnographyEthicsRural health services
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 2 , April 2014 , pp. 127 - 138
Copyright
Copyright © Cambridge University Press 2013 

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