Elsevier

Social Science & Medicine

Volume 67, Issue 11, December 2008, Pages 1789-1797
Social Science & Medicine

Situated/being situated: Client and co-worker roles of family caregivers in hospice palliative care

https://doi.org/10.1016/j.socscimed.2008.09.012Get rights and content

Abstract

Since the inception of the modern hospice movement, the patient and family caregiver (FCG) have been considered the unit of care; family members are identified as ‘clients’ within palliative care philosophy. Little research has focused on how FCGs define their roles within the hospice palliative care (HPC) system. The aim of this study was to describe how FCGs of dying cancer patients view their roles in relation to the HPC system. Secondary analysis of interviews with 36 bereaved FCGs in Western Canada, guided by interpretive descriptive methods, found that FCGs perceived themselves as having two roles: client and co-worker. FCGs situated themselves as clients, where they actively sought help from the health care system. FCGs at times also perceived they had been situated as clients by health care providers, and were more resistant to accepting help. In other comments FCGs situated themselves as co-workers, seeking out an active role within the HPC team, whereas in other instances, felt they were situated as co-workers by a health care system with limited financial and human resources. Findings suggest that greater emphasis be placed on helping family members identify suitable interventions depending on how they view their roles within the HPC system. How we define family members in relation to the HPC system may also require reconsideration to reflect a more current conceptualization of realities in end-of-life care.

Introduction

Treating the family as the unit of care has been a major component of palliative care philosophy for nearly 40 years; health care professionals are encouraged to view and treat family members as ‘pseudo-patients’ with their own needs (Kristjanson, Sloan, Dudgeon, & Adaskin, 1996). Over the past few decades, family members have emerged as the principal source of support for people dying from cancer (Aoun et al., 2005, Kristjanson and Ashcroft, 1994). As such, family members are simultaneously positioned as both recipients and care providers.

Hospice palliative care (HPC) “is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” (World Health Organisation, 2002; our emphasis). Conceptualizing the family, including the patient, as the unit of care includes an assumption that family members who provide care (i.e., family caregivers) require help and support from the health care system. This assumption is due, in part, to the burdens associated with providing end-of-life care (Cameron et al., 2002, Stajduhar, 2003, Zarit, 2004) and the psychosocial and emotional issues involved when facing the loss of a significant other (Kristjanson & Davis, 2004). Family care work involves performing supportive tasks for those who cannot do them independently; often involving physical labour. In the family context, care work is challenging because of complex and sometimes competing feelings of kinship obligation, love and affection (Delphy and Leonard, 1992, Finch, 1989) – for instance, caregivers perform additional work involved in “emotion management” (Macrae, 1998). The need to support to family caregivers (FCGs) emotionally and practically is expected to grow as health care systems rely increasingly upon the caregiving labour of family members (Armstrong & Armstrong, 1996).

However, research shows that FCGs do not self-identify as legitimate recipients of health care or as caregivers, instead, focusing solely on the dying person's needs (Harding and Higginson, 2001, Henderson and Forbat, 2002, Rose and Bruce, 1995, Stajduhar and Davies, 2005). This phenomenon reflects the ambiguity of the distinction between ‘caring’ and ‘personal tending’ occurring within the family and in traditional gender relations (Twigg, 1999). It is not that FCGs do not require support (though some may not), but rather, that some types of support assumed to be helpful may not always be wanted or needed by FCGs.

Some scholars argue that effective FCG interventions must be individualized to caregiver needs (Harding & Higginson, 2003). These needs, in part, will be determined by how FCGs view their roles in HPC. Research on FCGs of the elderly offer various categorizations of FCG roles and delineate ways that caregivers are viewed within the system (Twigg, 1999, Ward-Griffin and McKeever, 2000). Little attention, however, has been given to how FCGs of dying cancer patients view their roles in relation to the HPC system. By better understanding how FCGs perceive their roles, we may identify supportive health services and policies and effectively individualize interventions to address FCG needs.

The research question guiding this study was: How do FCGs of dying cancer patients view their roles in relation to the hospice palliative care system? Our inquiry begins with a review of the historical foundations of the concept of the family as the unit of care, demonstrating the positioning of FCGs as ‘clients’ within palliative care philosophy. We then describe our study methods, report findings, and discuss these findings.

Section snippets

Historical roots of family as the unit of care

Prior to the second half of the 20th century, family provision of practical, emotional, and spiritual care to dying cancer patients, most often at home, was crucial in circumstances where medical science offered little hope of survival (Jalland, 1996, Smith and Nickel, 1999). There were few hospitals across North America prior to the 1950s; these were often the default site of care for dying people without family members. Otherwise, home was almost always the expected location of care for the

Methods

This paper is based on the secondary analysis of interview data collected for a mixed method study that occurred in three locations in Western Canada and that examined FCG coping in end-of-life cancer care. Secondary analysis of pre-existing qualitative data is used “for the purposes of investigating new questions or verifying previous studies” (Heaton, 2004: 16); there is considerable advantage to maximizing the use of qualitative data in this way (Bernard et al., 1986, Glaser and Strauss, 1967

Findings

FCGs conceptualize two roles in relation to the HPC system: client and co-worker. FCGs situated themselves as clients, where they actively sought help from the health care system, but sometimes faced barriers in doing so. Family caregivers also perceived they had been situated as clients by health care providers, and were more resistant to accepting help. In other comments, FCGs situated themselves as co-workers, seeking an active role within the HPC team, whereas in other instances, FCGs felt

Discussion

As ideally conceived by Cicely Saunders, family members (along with the dying person) would be the recipients of support in the HPC system, performing a secondary role in patient care. Envisioned almost four decades ago, many HPC programs continue to strive to this ideal of HPC philosophy. At the same time, changing expectations of family members (both internally, through desires for active involvement, and externally, as a result of health system developments) means that the conceptualization

Conclusion

Since the early days of the hospice movement, family members have been considered an important focus of care. Cicely Saunders believed family members deserved attention and treatment, and while families did provide care, the emphasis was on the health system supporting the patient and family. The origins of Saunders' beliefs arose within an institutionalized system of care for the dying where health workers provided the majority of care for the dying person. Today, more people are dying at home

Acknowledgments

This research is supported by the Canadian Cancer Society through a grant administered by the National Cancer Institute of Canada. Dr. Stajduhar is supported by a New Investigator Award from the Canadian Institutes for Health Research and a Scholar Award from the Michael Smith Foundation for Health Research.

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